Theresa Zimanske

You won a trip

2012-02-16T08:43:00.005-06:00

The caller said, "Is this Theresa Zimanske?" Hesitantly I replied, "Yes". The caller quickly announced, "You have won a trip to San Diego, compliments of Fox 9 Morning News." Silence; I didn’t know what to say.

I glanced at the front door unsure of what to expect next. Was there a group of people by the door with a balloon bouquet in hand? No-one was at the door. The caller persisted and ended my shocked silence when she said, "You do remember entering the contest, right?

Then my more typical chatter shifted into gear as I explained to the Fox 9 news marketing coordinator, that this type of thing never happens to us. We never win contests, especially something like this. She hears that often was her reply and I sensed a smile in her response.

Suspiciously, I waited for the stipulations and hidden costs to become a part of our discussion. But with every one of her answers to my questions, the suspicion was lessened. She assured me the prize included flight, hotel and rental car at no cost to us. I won a trip! Non-stop air travel to San Diego, CA. Five glorious days at a hotel resort on Mission Bay. What a huge blessing.

Recovery from illness and grief is a silent battle often fought while most others are unaware. A trip, whether long or short is a saving grace that provides the necessary respite for a weary soul. Sometimes I’m asked to suggest ways one can push through the kind of grief piled on by the loss of a child. I admit there’s no easy answer, but in my opinion, going on a trip is one answer to that complex question.

A trip, even for a day or two, gives me the opportunity to rest and ease my burdens in a remote, more relaxed environment. It calms the sea of accumulating emotions in a neutral safe zone. Lends ample time to read, write or have delicate conversation about confusing issues, unraveling their complexities.

Once home, I find myself more confident, ready to move forward again, and back into whatever waited that now needs attack. By no means do I leave it all behind. That's far from the truth. But a change of location complete with the rest and fun vacation provides, gives me a renewed perspective over the various things I war against. Loneliness, discouragement, and grief fatigue are a few, which dissipate on a sunny beach or an afternoon boat ride.

Whatever your burden is, seek what gives you rest. Whether your fight is illness, injury, loss of a loved one or other, consider taking a trip. Even a one day, coupon inspired excursion, away from daily ups and downs can offer a fresh and renewed approach.

Who knows, maybe you too will experience an unexpected call from someone who’s about to Be The Change when she says, "You won a trip!"

It's a birth date

2012-01-18T14:30:00.009-06:00

A few of my healthcare experiences happened as I waited for the grand entrance of my first baby, scheduled to arrive late January 1988.

As a wife and soon to be new mother, it was the happiest of times. As a daughter it was challenging times because of a mother with cancer in its seventh year. Those years spent with Mom at oncology appointments, emergency room visits and hospitalizations definitely prepared me for the many healthcare obstacles I faced.

Due to my Mom’s declining health, I felt the limitations held inside joyful anticipation when multiple life altering situations are happening at once. The days my Mom prayed to live long enough to see me walk down the aisle were now being replaced by new prayers for another gifted opportunity. To hold another grandchild and see one more of her children have a child of their own. I understand her deep desires much better now.

My baby was born January 18, 1988 making that particular day a one of a kind, very special day. The pediatrician’s words of, “it’s going to be a couple weeks yet”, which he spoke to me a few days prior, made it an unexpected and welcomed early birth date miracle.

My birthing experience was dramatically altered by a nurse working the early evening shift on 1-18-88. My water had broke the day before and trickled without any contractions. I was admitted to the hospital that evening. In the morning with no sign of contractions, a medication drip was started. That produced immediate and intense labor contractions that continued for ten hours with only fifty percent progress.

When that evening nurse came on duty, discussions and preparations for a cesarean birth were already underway. I’ll never forget the moment she came face to face with me and said, “Theresa, you are not having a c-section”. Minute by minute she instructed me and provided laboring techniques that worked! At 10p.m., weighing 6 pounds 12 ounces, a princess was born - without surgery.

Unfortunately, I have never spoken to that nurse again. Her skill changed the whole experience. Not only on that birth date but in the days and months that followed. Her commitment and conviction impacted both my medical and human experience. If I had the chance, I would tell her without a cesarean birth, I had the energy to care for baby Jessica and for my seriously ill Mom. Both things equally important to me and were made possible by her outstanding labor and delivery expertise.

Those were extremely happy times, despite the challenging ones mixed in. I can recall the look of awe and wonder on my Mom’s face as she held baby Jessica for the first time. I hope I have that same look every time I see that baby’s face. Even now, twenty four years later.

Happy Birthday Jessica! Be The Change girl,
Be The Change!

In this house...

2011-12-30T08:48:00.011-06:00

Be The Change was first spoken in our house just a few years ago, yet I believe its purpose was spoke long before that. I questioned who can Be The Change while bombarded with the kind of changes most can hardly imagine.

In this house, Be The Change is inspired by the life of Michael Zimanske and educates the world, especially those involved in healthcare, that our real life experiences challenge each one of us to Be The Change. This expanding campaign gives a voice to the perspective of patients and their family members with positive impact on relationships with medical providers. It offers endless opportunity for everyone to join in and Be The Change in their respected role.

The intention of the Be the Change campaign is to motivate and spark change in others. Little did I know I would be the one most changed by the compelling stories and countless experiences shared with Be The Change makers.

Most definitely, I’ve been primarily changed by rare disease and the passing of my son's earthly life to his eternal one. Michael was a life changer, a big change maker. However, I’d be remiss not mentioning I’ve also been changed by my parent’s medical scenarios, their end of life events, my own breast cancer and my husband's heart condition. It’s a lengthy medical list defined by medical and human experiences, resulting in life changing events, which speak into Be The Change. They are at the heart of the campaign and created more change makers.

In this house, among the varied changes are model change makers. They enlighten, teach, and encourage as we travel a changed bumpy road together. First and foremost, they are my husband and daughter who always believe in me, my family and friends who stand by me. Faithful change makers that demonstrate how to love a changed person with no manual or instruction.

Additionally, I’m constantly changed by healthcare providers inside and outside of medical crisis through gifted talent. Medical change makers who believe with me that each one of us share in the responsibility to Be The Change. They think outside the box and put provider-patient-family collaborative care into day to day practice. These women and men are our medical future, striving to provide high quality and safe healthcare for us. The outcome is humanized medicine through service hard to measure.

Most profoundly, I’m changed by the patients and families who today fight the battle of disease, especially rare disease such as SIOD. They are courageous, resilient warriors that give definition to the word hero, with no badge of honor. Each day, weary from the day before, they stand bravely in the midst of tremendous human and medical challenges and press on. For them, BTC continues with a promise to advocate on their behalf, represent hope and possibility in their perspective and will never forget the face of suffering.

Thank you change makers, for doing great things. Mother Teresa once said, “Not all of us can do great things. But we can do small things with great love.” That’s what we do in this house.

Happy New Year…Be The Change in 2012!

Present or presence this Christmas

2011-12-16T07:54:00.002-06:00

My son Michael loved presents. Christmas morning he would line them all up, counting each one, in anticipation of the moment he could rip one of them open. He would tally his number of gifts against the number of gifts his sister had. Every parent and child knows the discussion that followed.

As the sixth Christmas approaches without Michael physically present and longing for his presence, these memories are priceless treasures wrapped inside my heart. They quiet my grief and provide clarity in the debate over presence versus presents, especially at this time of the year when making gift giving choices.

Although Michael loved a large number of presents, it was my presence before and after the gifts were opened that he loved even more. He desired my full attention while he counted each gift and as he guessed what each one contained. He could hardly wait to have me play the new game with him he received Christmas morning or sit next to him drinking pop and watching the new movie Santa brought. I recall some of my responses to his persistent requests for my time. In a minute Michael, after I finish dishes, I need to make a quick call, were a few.

It was my presence in those experiences that made the present more valuable to Michael and definitely to me, then and even more so now. Due to Michael’s life limiting disease I was naturally more sensitive to each passing day. However, it was still a challenge to find a balance in it all. Often our circumstances or my daily tasks at hand became more important than the gift of time together.

Michael was relentless in asking minute by minute when it would be time to open presents, at Christmas or other. I was always present for his gift opening but I’m quite sure I wasn’t always as present other times. Moments that didn’t seem as important as the things on my to- do-list, but in retrospect, they really were. I don’t remember the gifts we gave Michael, but I remember the times we spent together.

I’ve become much more conscious in how and what I give and the meaning that drives it. It’s one of the reasons behind the choice to not send Christmas cards this year. Even though I consider it an important tradition, my time and presence was needed elsewhere. Each year, its many changes invite us to ask the question, where are my gifts tangible and other, most needed?

Because of the experiences I’ve had with people in my life no longer able to open presents with me, I find little reason to debate presents versus presence anymore. Being fully present in relationships, giving our presence just as much or even more often than presents, is usually the real gift we seek. A little boy taught me that.

From our family to yours, Merry Christmas, Happy New Year and…Be The Change!

Live in abundance

2011-11-28T13:47:00.013-06:00

I live in abundance. In spite of a wavering economy, I find the means to go where I want and purchase the things I desire to have. I enjoy the everyday comforts of warm clothes in the closet and a house with the thermostat turned on. These facts may seem mundane, but are humbling when I hear the stories about people living in conditions much different than this. Places right here in Minnesota where abundance is often viewed but also includes many places where the word would rarely be applicable.

With the Thanksgiving season coming to a close and another even richer season approaches, I’m abundantly grateful for a multitude of things in my life. It’s a gratitude that goes beyond my worldly processions, in an abundance of family and friends, which consistently show me love and kindness. It’s a depth of gratitude, which flows from the medical situations that changed me and my family.

Just recently, I found myself abundant in random acts of kindness after being thrust back into a caregiver role due to my husband’s knee injury. He was struggling with an over abundance of pain following an arthroscopic knee procedure. The typical recovery was complicated and delayed by other issues. I was reminded how fortunate I am to not only have caring family and friends but extremely fortunate to have immediate healthcare relief. We have medical care that’s abundant in convenient locations complete with urgent response to patients and families in need of help. Many are not that fortunate.

It’s been said that in some areas of the world, if you have clothes to wear and food to eat you are considered fortunate and labeled rich. That statement often runs through my mind. I thought about it a few times during my husband's knee crisis. I think about it as I prepare my weekly grocery list. It comes to mind as I make my Christmas shopping list. From events to lists I see fortunate and rich defined in the many ways I'm confident I will always have enough. The challenge is to be content with the minimum and give from the abundance to others who won’t have enough.

Greatest abundance lies in what isn’t tangible. A quote by Johannes A. Gaertner says, “To speak gratitude is courteous and pleasant, to enact gratitude is generous and noble, but to live gratitude is to touch Heaven.” Patients, especially children suffering chronic or rare disease have a way of giving us a glimpse of heaven in their earthly life and exhibit a sense of gratitude not easily explained. A closer view almost always displays an abundance of gifts, gleaned from pain and suffering, which are not tangible. They are life lessons gifted to us and put value in seeking abundance outside of material things.

This season I hope to take a broader view and reach out to those who silently suffer, yet allow us to see a piece of heaven here on earth. This year, I’m adding to my wish list, the needs of those who lack. I want to give from my abundance, live gratefully and demonstrate gratitude in action.

Join me and Be The Change our world is waiting for.

BTC at U of M

2011-11-11T10:30:00.008-06:00

I want to operate in sheer honesty as CEXO (Chief Experience Officer) of the Be The Change campaign. For that reason, I want to disclose my love-hate relationship with the University of Minnesota (U of M) Hospital and Clinics. My individual relationship with the U of M has two sides, both humanly connected but medically far apart, creating a complicated and emotional dynamic housed internally by me.

One side of me loves the fact I’m a Minnesota patient and family member that lives less than sixty minutes (based on unpredictable traffic) from a cutting edge healthcare campus. That includes a highly regarded learning environment, which one day, may educate the medical student who will find the cure to cancer or a rare disease like SIOD.

On the flip side, I hate the fact my son Michael and others like him suffer horrible diseases there. Among hope and possibility abundant throughout the U of M campus, looms the opposite in despair and uncalculated fear. To this day, when I enter the East Bank, I need to pause, take a deep breath and alert my commitment in the fight ahead, warring against the dark memories about to torment me.

Faithfully, I’m reminded of the change maker waiting in the shadows of that concrete jungle, my angel Michael. His legacies lead me back to the U of M with a different three ring binder these days labeled Be The Change. Back to where it was whispered to us years ago. Steps that are taken as testimony to Michael’s courage, I walk back into the pain and press past the fear, towards the change waiting on the other side of all that fear.

Last spring, in a changed capacity, I returned to the University of Minnesota, sharing our story with a group of nursing students and graduating nurse practitioners. I spoke about the little boy with a big disease who changed me, our family, and possibly a few healthcare providers at the U of M. I cited specific examples how medical and human experiences impacted Michael and our family not just in his life as a patient but in his whole life outside of the disease, beyond the concrete jungles.

I shared my vision for the Be The Change campaign stating, Be The Change isn’t just me or Michael. It’s us together. It’s the patient, family and provider together sharing healthcare responsibility in an enhanced relationship as partners, inside and outside the medical arena. A partnership where each of our perspectives is valued, and each of our experiences provides an expertise that’s utilized to its full potential.

A new relationship was created for me at the U of M Center for Children with Special Health Care Needs, in honor of Michael’s Be the Change legacy. It’s a healthcare team demonstrating patient family centered care beyond words. Ways WE can all Be The Change. Click here to view the Be The Change presentation at the U of M.

Now I’m familiar with another outstanding team of healthcare providers and educators at the University of Minnesota Hospital and Clinics. It was well worth the deep breathes I had to take to get there. I can honestly say, the love side of my relationship with the U of M has increased and will continue to Be The Change.

Worry needed to change

2011-10-28T07:43:00.013-05:00

A byproduct of a life saturated by medical trauma is worry. Very often I started my sentences with, “I’m worried about”. Until the summer after Michael’s death when doubt tried to consume me, I knew my worry had to change.

Worry and anxiety teamed up in my life at a time when I was preparing for a short trip to Vegas with a couple of friends. Bald from chemotherapy, bloated from cancer medications, feeling barely beautiful I still said yes to the trip. Despite everything I was bound and determined to find fun again, honoring the king of fun, my son Michael.

Out of nowhere, (actually it never really is) I started to worry about traveling without my family. What if something happened to them while I was away or what if something happened to me? Worry took over. Of course, anxiety came too and made me doubt my decision to take this trip. It peaked the day I had to leave Target without purchasing the trip items on my list because my enemies, anxiety and worry convinced me something bad was going to happen if I go on this vacation.

Proud to say, worry and fear gained no strides that week. Due to the encouragement and prayerful support of family and friends I took that trip to Vegas. I enjoyed a relaxing, worry free couple of days and realized I had to change my relationship with worry.

Through books and broadcasts I searched for practical simple steps to get rid of my worrying ways. I learned to change how often I used the word worry, giving it less verbal power so worry got replaced by concern. I found that a simple change to the word covered my worry thoughts with a more accurate reality.

As I let worry go, in word and thought admitting worry has no place here, spiritual grace took over, eliminating worry as the whispered lie that it is. The truth is we can’t change any outcome with worry. It’s a waste of energy. However, putting energy into seeking the truth reveals how to really fight a personal war against worry.

My work continues at kicking out negative ways of thinking, holding on to only truthful thoughts and being more selective in the words I speak out; standing firm in hope and faith. There is a difference in saying I’m concerned, not worried.

Do you need to change some words or thoughts that challenge the peace and calm of your day?
Believe it’s possible to find rest among the burdens in life. There you find fun again.

Don’t worry, be happy and Be The Change!

Different changes

2011-10-14T10:40:00.007-05:00

Change is in full view right now with leaf colors of orange, red and yellow blazing the Minnesota landscape. Fall, without question, is my favorite season. Modifications to my outer jacket selection of jean to lined leather, hint I might also need to modify my attitude as I shift from summer relaxed to winter hassles. My awe in the changing fall exterior, beckons an interior review.

The seasonal change into winter is tough for me and seems to be getting worse the older I become. I love summer. The long bright days, lazy lake vacations and ice cream cones on a hot summer night are a few of my favorites. I don’t like winter. The bare trees, cold temperatures and white flakes (I can’t say the four letter word yet), generates a very different temperament in my day.

A friend said to me recently, “I’m trying to mold into the wood work and you’re trying to jump out of it!" After a hearty laugh we agreed that statement was very true. As friends we share common bonds, but have many differences too. Together we weather lots of changes occurring in varied seasons of our lives. Most often, it’s our differences that offer the biggest gifts in friendship and speak into the full circle of that relationship. Very much like summer and winter.

Summer and winter share the title of seasons, which is one thing they have in common but each individual season and its changes are very different. Each one is unique in its purpose and although different, they’re dependent on each other. A hot dry summer leads to a particular kind of winter and the cycle continues.

A similar analogy applies to friends. Most of them are very different, each with their own unique purposes. Yet, year after year among the changes, friends depend on each other; trust in each others process, offering stability to the uncertainty of change and the cycle of friendship goes on.

Unlike the relationship of one season to other, friends have the ability to love us through the changes. Some of these changes are exciting like a sunny summer day, easy to love, while others are stressful like a cold winter storm, and requiring a deeper love and appreciation.

I’ve decided to change my winter attitude. Beginning today, I’m looking forward to new exciting ways to love winter and renew my respect for what it does for the other seasons. The same way my friends love me, respect my many changes and my “out of the wood work behavior”; unconditionally and without judgment.

Everything is connected together, through every season, to Be The Change.

Ask some questions

2011-09-22T17:27:00.020-05:00

I’ve always been the kind of person who asks lots of questions. Sometimes I think people avoid me in fear of being asked too many questions. My family often warns others to anticipate Theresa's question and answer series.

Asking questions is a part of my personality, in my DNA. For me, questions provide a verbal connection to my desire to go deeper and discuss something not readily exchanged.

Last Saturday, I rode with the New Prague Chief of Police in the lead cop car of my hometown parade during the annual Dozinky Festival. Afterwards, a few people questioned how that distinct privilege came my way. My answer was simple; I asked him if I could. The truth is I had been asking him for several years, but that’s another story.

There’s a wide range of opportunities lost mainly because we don’t ask enough questions. No doubt, asking questions involves a variety of risks such as rejection, judgment, and exposure. There are times when questions require patience or asking more than once. Yet overall the outcome almost always outweighs any risk or challenge involved. Even if a desired outcome isn’t obtained, the experience of asking lends confidence to the next question waiting to be asked.

My son Michael use to ask lots of questions. He would fire one question after the other, sometimes not waiting for the answers. I remember driving to appointments and he would ask random questions about the unknown people he saw on the street. I guess there is no reason to question who he got that personality trait from.

Asking questions is a key component to good relationships. Whether it’s a personal, professional, or healthcare relationship we need to overcome fear and trepidation in asking questions, especially ones that have never been asked before. You never know when one question might lead to a new discovery or change the definition of your relationship.

Ask yourself, do you want to be the person standing on the sidelines, giving into fear or the person who is bold, asking questions regardless of the risks, ready to Be The Change?

That’s a great question!

New blog design debuts today!

2011-09-09T16:06:00.003-05:00

Welcome to my newly revamped personal blog. I know it's been long overdue, however I wanted to be confident that the new look and feel of this site not only reflected the purpose of my writing but also served as a tie to my campaign, Be The Change (BTC).

My personal blog will continue to house my reflections, while the newly enhanced BTC website will serve as the home of things BTC-related. While I am intricately connected to BTC, I want to make the distinction between my role as a speaker and patient family consultant in the healthcare environment and the BTC campaign, which is for everyone.

Thank you for your support as I continue to develop new partnerships, new relationships and new ways for all of us to BTC.

Ways you can stay connected:

Be a hero, be a donor!

2011-09-02T08:57:00.013-05:00

Barely thirteen years old, giving a thumbs up in the recovery room, was my son Michael. Just minutes before, he received a gift unlike any other. A healthy kidney donated to him by his “Auntie Mar.” Cemented in memory isn’t only the view of Michael and his raised thumb. It’s also the selfless acts by several who chose to make a difference.

There was standing room only at the University of Minnesota’s surgical waiting room that hopeful day in August 2004. Chairs and couches filled to capacity physically, emotionally and spiritually by family and friends. Each one waiting for the kidney transplant to be done, to hear it was successful and that finally kidney dialysis would be over.

Michael and many warriors fought hard to get to transplant day. Gallantly they shared in failure and success, all which led them to the perfect scenario. Each one anointed with divine purpose in appointed roles important to the process. Two postponed surgical dates and a near death dialysis experience complicated the way but steeled our resolve. Ultimately, one aunt made room for the other, both willing to be kidney donors, both heroes. One enduring the process of donor elimination as the other became Michael’s donor perfect match.

August 30, 2004 was definitely a thumbs-up day. We got the news we anxiously waited to hear. The kidney transplant was a complete success. Seven years later, job well done still echoes in the spirit of the gifts exchanged. Not only on that special day but in the days that preceded and followed. Heroic examples of ordinary people willing to Be The Change in extraordinary ways that gave all of us a gift.

According to Life Source, a non-profit organization located in St Paul Minnesota, nearly 109,000 people are waiting for organ donation and the number grows each day. Registering to be a donor is easy and can be done right now, online. Your decision to be a donor can potentially save up to sixty lives. You can give a gift.

Leave a legacy similar to Michael and his two aunts. You can be the hero someone is waiting for. You can Be The Change!

Feel free to contact me if you have any questions or concerns about organ donation.

A Great Golf Tournament!

2011-08-26T12:18:00.022-05:00

Thank you to everyone who made the 5th Annual Michael Zimanske Golf Tournament so great!

Special thanks to Jan Larson, Executive Director of Roll With It (RWI), Heidi Schwitchenberg, Founder of RWI, Keith Schwitchenberg, President of RWI and Marco, the Corporate Sponsor of the tournament.

A big thank you to everyone who participated in the golf tournament this year. Whether you golfed, volunteered, or made a donation know that your contribution was recognized. Whatever the donation, big or small, it made adaptive sports and recreation possible for children and adults who otherwise might not participate.

RWI makes our communities aware of the possibility that exists through adaptive sports. RWI participants give us a view of the exceptional and demonstrate in action, "It's not what you push, it's what pushes you."

Consider ways you, your family and friends, or your company could raise funds for RWI in the future. Ask your employer to sponsor a golf team for the Michael Zimanske Golf Tournament in 2012. Keep checking the website for updates about next years golf tournament, other upcoming RWI events as well as various opportunities for you to help RWI.

We are extremely grateful to RWI and many others who fill the empty spot Michael once occupied. Not only do you honor his competitive spirit at this golf tournament but you surround us with love.

It is with deep appreciation we say, thank you!

Theresa, Jessica and Donn Zimanske

Roll With It needs you

2011-08-19T07:23:00.005-05:00

Dedicated to maximizing the potential of individuals with disabilities through sports and recreation is the mission of Roll With It (RWI). An organization committed to providing sports and recreation opportunities comparable to those provided for the non-disabled.

RWI operates true to their mission statement. It’s exactly what they did for my son Michael and what they continue to do for others.

Heidi Schwichtenberg, Founder of RWI is a quiet yet assertive basketball superstar. She helped us realize that in spite of Michael's unexpected physical changes, which came from his rare disease SIOD, he could still participate in sports. By more action than words, Heidi showed Michael a wheelchair should not stop him from being the fierce competitor he instinctively was. Those words of truth, coupled with Michael’s “need for speed”, was the beginning of his sheer determination displayed on the basketball court and more importantly, in his life.

In the height of confusing medical appointments and life altering statistics, Michael attended county fairs and integrated basketball scrimmage events promoting adaptive sports with Heidi. Often I thought, we don’t have time for this but I could see the renewed confidence being put back into Michael and our family so we continued. A fast friendship developed between us as we traveled Minnesota with Heidi, discussing and demonstrating the many benefits of RWI. Michael’s personality shined as he showed the crowds the skills he controlled in a small red wheelchair. Simultaneously and somewhat unaware, he learned to let go of other abilities. With a front row seat, we viewed Michael’s disability become a new found ability; the purpose of RWI.

This Monday, August 22, RWI is sponsoring the fifth annual Michael Zimanske Golf Tournament in honor of our hero Michael. One of the many adaptive sports heroes in Minnesota. My family has been eternally changed by the self-less work of Heidi Schwichtenberg, her family and the entire RWI organization. Thank you for making the world a better place for everyone.

Consider your response to participate or donate to RWI once you hear about a young man who didn’t know it was possible to play sports in a wheelchair until he met Heidi and Michael. Now he participates in multiple adaptive sports, thanks to RWI. Out of gratitude, he and his family volunteer at the RWI golf tournament. Another example is from a boy who said, “thanks to Michael and RWI, I can play power adaptive sports now.” His family also volunteers at the tournament because of their appreciation for RWI. These are only a couple stories, there are many that speak of the powerful impact RWI has on real people, right here, in Minnesota.

Please join us this Monday, August 22, 2011 at the Monticello Country Club for the Michael Zimanske Golf Tournament. Whether you can golf, volunteer or donate contact Jan Larson, Executive Director of RWI. The Zimanske Family is grateful for your generosity.

Think about how you can be the Heidi of tomorrow. How can you change someone’s life by giving of yourself. We gather together on Monday, swinging a club, buying a hotdog and pop, reflecting on a boy who gave what he had. Michael rose above his circumstances, giving us the confidence to do the same….Be The Change!

2011-08-05T11:33:00.023-05:00

Read a new blog post at the Be The Change website about Katie Lindenfelser and
Children's Lighthouse of Minnesota...

Just like Katie and her dedicated Dream Team, you can Be The Change!

Happy Birthday!

2011-07-28T09:47:00.004-05:00

Parents delight in preparing for their child’s birthday celebration, me included. When one of those children is an angel in heaven, preparing for that special day comes with few words adequate to describe it.

Fortunately, I’m surrounded by the love of family and friends, which includes their children, that makes this difficult time period less of a challenge. Such as the recent lunch date with my best friend’s son celebrating his 21st birthday. It reminded me of how anxious Michael would be for his coming of age party. No doubt Michael would have been a part of the evening festivities alongside his birthday buddy. Happy Birthday, Eric!

Our traditional summer vacation, in season seventeen, was enjoyed a few weeks ago, sparking many “remember when Michael” vacation memories. During that week my niece calling back “Hey whatie” to her boyfriends “Hey Julie” was a reminiscent mantra. The sweet sound blanketed my lonely heart as I recalled Michael’s numerous requests of, “Hey Mom” and my reply of, “Hey what”.

There are the emails and shopping preparations being made for a 16th birthday party for my nephew. At his request, a birthday celebration with his aunts and uncle comes with perfect timing. It is complete joy for me to be one of his party planners in the absence of planning Michael’s 20th birthday event. Happy Birthday, Ryan!

For the past six years celebrating Michael’s birth date, without him physically present, has come with ups and downs. Attempts to honor his special day are made, but often fall short of plans trapped inside unfinished. Despite the complexity it’s important, for many reasons, to still celebrate. I believe we honor Michael’s memory best by looking for every opportunity to experience fun and allow others to fill the empty space. Michael loved a party and he never wanted it to end. It’s one of his legacies.

Happy Birthday, Michael! Until we meet again, the party continues. Be The Change!

Map a course

2011-07-21T13:45:00.009-05:00

Unlike my husband and daughter who are gifted with exceptional directional ability, I am non-directional. Thankfully I am equipped with other skills to navigate the route of our life, especially with Be The Change.

My life has been infinitely altered by Michael, his SIOD diagnosis, treatment courses and markedly the day he died March 10, 2005. There have been countless days of confusion and unknown direction because of it. Although Be The Change was born from that season, its purpose was clear and mapped long before the title became reality.

Be The Change represents the patient family perspective in healthcare using our real life experiences to strengthen relationships and create partnerships with healthcare providers, outside of medical crisis. Be The Change defines the patient-family-provider relationship and sets a course to a patient family perspective view of the provider perspective.

It took me a long time to realize that as a patient and family member, I came into the healthcare environment with a narrow scope. Despite my vast experience I was only considering what medical providers could do for me. Now much more humbly, I consider what we can do together. I wanted healthcare providers to see beyond the diagnosis and see me, Michael, and our family as real people, but was I willing to see them as real people too. It wasn’t until a unique experience with a neurologist did I fully comprehend what that meant.

Michael and I had been waiting over an hour for his neurology follow-up. Finally, the doctor came in apologizing for the long wait and briefly explained he was detained by a pediatric emergency in the hospital. Outside of words, his face communicated this had been a traumatic experience. I offered him a few minutes to regroup but he respectfully declined. The appointment continued but I knew we needed to alter the normal course of our conversation.

I am a “lets talk about our feelings” kind of person so I asked the neurologist, “What do you do when you leave this place after having a really tough day?” Without warning giant tears escaped from his eyes and he said, “I should ask you the same question, what do you do?”

The direction of our relationship changed instantly after that short emotional conversation. We saw each other in a different light and became partners not only in Michael’s healthcare decisions, but in life choices. Because I began to see him more humanly than medically, it gave way for him to do the same. My initial impression of, “I don’t like this doctor very much” changed considerably over the course of time. In the end, this neurologist profoundly impacted the days I had to resign to Michael’s life course.

Here’s the bottom line. We all have the same basic needs, whether you're a doctor or a mother of a sick boy and we are more the same than different. Each of us whether patient, family member or provider requires human understanding layered with compassion and is made vulnerable by medical situations.

Risking emotional connection might lead to a detour, but it's sure to Be The Change!

Recycle spiral notebooks

2011-07-08T12:15:00.007-05:00

They travel back and forth for months and every parent has them in an array of colors. Stuffed in lockers and backpacks, they’re available in wide or narrow and one to three subjects. Often used only partially yet contains a vast amount of random information, they are spiral notebooks.

A rainy summer day my kids would take another look at the spiral notebooks they used the previous school year. I wanted them to decide which pages would be saved and what pages would meet the recycle bin. Left after the data purging was a thinner notebook that still displayed their name, grade and subject. Those leftover notebooks were then stored with hope that the kids could use them again the next school year, which by the way rarely happened. Instead, they usually became the notebooks I used for shopping lists, yearly vacation notes, and recorded Weight Watcher points.

Here are three ways you too can recycle spiral remains taking up space, making them into a helpful medical device for patient family healthcare.

A recycled spiral notebook is a valuable tool at every medical appointment. It’s perfect for keeping track of current medication including medication changes made during appointments. It’s handy for note taking during appointments, which also provides a running log of information for future reference. A great place for jotting down any questions you think of at home and readily available for the next appointment. Be sure to make your family aware of your medical spiral notebook.

An additional recycled spiral notebook is helpful for hospitalizations and surgeries. This particular notebook should also contain a list of current medications. It should have emergency contact numbers and valuable information such as insurance phone numbers and location of your living will. It’s the perfect spot to write down questions for hospital medical providers or family members and for taking notes as medical providers provide information. Wonderful place for love notes from family too.

A recycled spiral notebook is at its best when used as designed, for saving notes. An excellent example, recently shared with me, is to use a notebook for aging parents struggling with memory issues. Writing a note in their special notebook reminds them of the date you were there or of a task that needs to be done or was completed. A simple notebook becomes a tremendous empowering tool that provides peace of mind.

These are just a few suggestions to give patients and family members a green alternative and cost-effective way to store information. I admit it’s not the latest and greatest technology advancement in data storage however; the cost of a spiral notebook can hardly be debated. In just a few weeks we’ll see this affordable item on the cover of every sale ad, many for less than a dollar.

I have two recycled spiral notebooks on my office desk right now. Every time I pull one out I see "Jessica Zimanske Grade 6 English" or "Michael Zimanske Grade 4 Spelling" written on the cover by them. The moment gives pause as I recall their school age faces and the memories held between the covers of those notebooks.

Recycling leftover spiral notebooks has sustainable effects. They are guaranteed to not only enhance your healthcare experiences but memories too. Only potential product warning for recycled spiral notebooks: CAUTION this item may cause you to Be The Change.

"My country tis of thee"....

2011-07-03T12:02:00.012-05:00

Be The Change!

Meet Be The Change

2011-06-30T07:46:00.013-05:00

Theresa Zimanske
Founder, CEO

Theresa is the Founder and Chief Executive Officer for Be The Change, which represents the patient and family perspective in healthcare. She has been married to husband, Donn, for more than 25 years and has two children, Jessica and angel son, Michael.

Theresa brings a honest and realistic approach to family life when surrounded by medical crisis. She has spent most of her life within various healthcare scenarios, which includes her parent’s medical care and end of life experiences, her son’s rare disease diagnosis and death, and even her own breast cancer. Theresa speaks and writes about the value of the human experience in the medical environment.

You are sure to be encouraged and inspired by her story of hope and renewal, based upon the life of a boy named Michael, who changed everything.

Visit Be The Change website: http://bethechangemn.com

Jessica Zimanske
Be The Change Contributor

As Michael’s sister, Jessica represents the sibling perspective in health care. She grew up in a family focused on doctor appointments, blood draws and surgeries, but despite the medical concerns that permeated her home life, Jessica was striving to live the life of the average teenager, while learning at an early age that health and life is fragile.

She fully supports the patient and family perspective in health care because as a sister of a terminally ill child, she understands how siblings can be forgotten within the health care system.

Now in her 20s, Jessica works full time as a marketing professional for a large Twin Cities company, while also working as a freelance writer for several national publications. She lives in Minneapolis, Minn.

Visit Jessica’s blog: http://jessicazimanske.blogspot.com

Never too late....

2011-06-23T11:11:00.010-05:00

“It’s never too late to be who you might have been” –George Eliot

This quote, etched on a wooden plaque stood solo on a shelf at a B&B I stayed at recently. I repeated it multiple times, slower each time contemplating is that true? Could anyone of us, mainly me of course, really do that?

My adult life began with preconceived notions and lofty ideas compiled neatly in my mind. Then real life happened. Neat and orderly got messy expanding my once narrow view. Dreams were altered, planned courses scattered, forcing another look at my notions and ideas. Thankfully this time, with a more humble view I sought the answer we all wonder, “What was I created to be?”

Driving home from the first “official” Be The Change presentation and replaying the event in my mind, I realized the answer to that big question. My personal medical life experiences were meant to be shared and to educate. These experiences, both challenging and rewarding at the same time, have taken my breath away. Often made me uncertain of what will come next. However, what came was a hopeful and peaceful trust in what is to be will be. Not since my marriage and the birth of my children have I ever been so sure of something I was created to do, as I was after that car ride home.

In my opinion, George Eliot’s words are correct. It really is never too late to become what you might have been. To become what you were created to be from life experience that draws a new picture and unveils bigger dreams.

Think big, imagine without limit and Be The Change!

Who is your best friend?

2011-06-10T15:27:00.006-05:00

Having a life abundant with friends is a tremendous treasure. Among my treasured gems, for over thirty years is my best friend.

She grew up less than a mile away from my family farm; hers just south down the gravel road. We were friends in high school. Hung out with the same crowd and drove up and down the same main street. After high school we went our separate ways, each taking our own path. A year later we began a conversation at a summer party, which has never ended. With the glow of a bonfire, friendship was renewed and two best friends were made.

Even though both of us worked “in the cities” we rented the lower level of a house located in our home town on Fifth Street and made life long friends with the couple upstairs. We bought a great big couch, kept only Mountain Dew and yogurt in the fridge and ate popcorn for supper. On Saturdays we shopped bargains at the local stores, read magazine stories to each other, polished our nails at the kitchen table and laughed and laughed and laughed.

Our roommate status changed in 1985 when we each got married, just two months apart. Two husbands became good friends and five children grew up together like brothers and sisters. Our families have shared holidays, birthdays, cabin trips, county fairs, and simple daily occurrences. Her life and mine have always been parallel, each experiencing the same events or similar feelings about the same time. Together, we have embraced life’s highs and lows as much in person as on the phone.

My best friend is the Godmother of my son Michael. A role that expanded into clinical conversations and hospital room visits. During uncertain times she reminded me who I was, where I came from and who I was created to be. On the days I felt lost or confused, she put me back on course. A friend gracefully appointed.

As best friends we share thousands of memories and dreams with an assurance of many more to come. We even share the same birth year with birthday’s only weeks apart. So, Happy Birthday girlfriend! You have been and continue to be the change.

Thank you for encouraging me and everyone around you to Be The Change!

Heard it's your birthday.....

2011-05-28T09:36:00.012-05:00

Birthdays are fascinating. A day set apart from the ordinary day to celebrate with family, friends and even a waiter named Jim. As the number of candles on the birthday cake increase, so does the perplexing wonder of how it's possible for minutes to turn so quickly into years

The statement, “where has the time gone,” is cliché at best, yet enormously truthful. As a teenager I remember thinking time was plentiful, sometimes even ticking by at a slow pace depending on the event ahead. Joining a new club this month, I’m especially aware of the rapid speed of time in more life lived behind me than what might possibly lie ahead. Despite the awareness, it’s still of very little concern to me.

My age has never been an issue for me. In fact, most of the time my husband remembers my age before I am able to recount the exact number. I believe how you feel on the inside and conduct your life on the outside doesn’t have to match your real age, giving minimal value to the number.

What I do value is the countless number of outrageous blessings in those years. Some of mine are; growing up in a simple farm home abundant with life lessons that resonate in my current life. Parents I admire and seven siblings I can’t imagine life without. Friends from high school turned into a marriage graced by two amazing children, making a family. A circle of life completed by trusted friends and devoted extended family loving me no matter what. It’s a plethora of blessings that brings me to my knees in humble awe.

It’s only fair to say, there has been disappointments, sad days, even a few “why me,” but they have been matched by miracles that lack worldly description and healing found only in the divine.

It’s true, it was my birthday and now I’m 50 years old! Probably won't forget how old I am this year, unless I hear the song “Dancing Queen.” Then age becomes irrelevant and with arms crisscrossing in the air, we give any day reason to celebrate.

So for the next three hundred sixty four days until my next birthday, Be The Change!

Change, change, and more change

2011-05-20T11:19:00.015-05:00

Three days of clear blue skies and temperatures above fifty degrees, hopefully makes it safe to say spring is here. It seemed like a very long wait this year.

Spring has a way of ushering in change. The season changes the look of trees, grass and plants into something new from the unsightly picture of dormancy. It holds graduations, college to home re-locations and summer activities, which can change disciplined polished routines into drive-thru dinners and later than usual bedtimes.

Change is a constant part of life whether we like it or not. Anything from simple changes found in the monthly turn of the calendar to the more complex like life altering changes due to illness. Each offering an opportunity to redefine priorities based on a broad spectrum of minor to major changes involved with every changed season.

Another drastic change is with social media like Facebook, which is a change that didn’t come easy for me. My first communication language is verbal words. Patients.about.com suggests we can even use social media to choose a doctor. Now that’s a change! It's fair to say, doing necessary research in the comfort of your home does lend an ease to fact finding tasks and allows the required time to make critical decisions in a relaxed environment.

Permitting change to make you or your circumstances better than the day before directs hope to cover anxiety that sometimes exits because of change. Whether it's a new month on the calendar, a changing season, or a health concern that leads to social media for answers.

Change can be good, lending a fresh perspective to change our view; for instance the look of yellow daffodils blooming in the middle of a concrete jungle. The odd occurrence helps you realize change makes other things possible.

“Like” Be The Change on Facebook…. Be The Change!

Wonder, understand, believe....always hope

2011-05-16T08:35:00.009-05:00

Read a new blog posted at Be The Change website.

"Do what you can, with what you have, where you are" -Theodore Roosevelt

What do you call your Mother?

2011-05-06T07:42:00.006-05:00

Mother, Mom, Mommy, Mum, maybe even Mumz. Whatever your term of endearment for that woman who loves you more profoundly than any Hallmark card can describe, make it special. Consider the fact there is no other relationship like mother and child. It’s a gift sealed in more than DNA, divinely created by one of the other.

My relationship with my one and only dramatically shifted when I was nineteen. As my Mom battled cancer, I began to comprehend and appreciate her role in my life in a renewed way. She died when I was barely twenty seven and now, I’m close to living more of my life without her than with her.

There isn’t a day I’m not reminded of my Mom’s gentle way and the powerful impressions they left. I recall the extreme gratitude in her thank you. I remember her small hands washing clothes, ironing or at the sewing machine. Her prideful face as she canned fresh vegetables out of her garden. The smile she gave requesting a little 7-up on special occasions and the rhythmic way she would follow my Dad on the dance floor.

My Mom was self-less, hard working, faithful and always, always kind. She molded my thoughts and instilled values in me that are permanent threads woven into my non-tangible quilt. She showed me what real faith is and that it is possible to endure. Her spirit simplified the complicated aspects of unconditional love, all of which expanded our relationship beyond typical boundaries.

My Mom’s commitment to family speaks in the shadows of Be The Change. This blog entry is dedicated to my Mom and the others whose home isn’t allowing cards or phone calls. In honor of them this Mothers Day weekend, call your one and only her special name. Have a conversation between two hearts only the two of you know the words.

It becomes a story, which lasts forever. Might even Be The Change.

Leaving on an airplane

2011-05-02T07:10:00.008-05:00

Everyone has a story about airplane travel. Anything from awkward barefoot security encounters, the missed connecting flight to long waits for luggage. Including highlights such as aching knees from bumping into the seat in front of you or the intentional lean to the right because of the sleepy stranger seated at your left.

Whatever the tolerated situation maybe most airline passengers don’t endure what the physically and medically challenged traveler does. A travel check list is long enough without the need to add wheelchair or ventilator as must have items.

Traveler, Carrie Salberg can not be without certain medical items such as those two, due to her muscular dystrophy diagnosis. A Star Tribune investigators article says in January, aboard a return flight to Minneapolis from New Orleans, Carrie Salberg was asked to get off the plane. A battery brought on board by her nurse, which had a certificate of compliance, caused serious inconveniences. Things were done correctly, yet still not enough. Interesting to note, her flight to New Orleans from Minneapolis went without issue, even included a free first class upgrade.

In a small way, I can identify with medically challenged passengers like Carrie Salberg. Although only traveling once with Michael by airplane during his fragile medical years, I understand the complexity involved with adding critical details. Along with the normal vacation preparations others have, that one trip required extra phone calls, particular doctor appointments and many additional considerations other travelers don’t have.

Michael received air travel approval from his medical team but it came with a promise to have a medical letter with us at all times and act in accordance to it, if necessary. The letter explained Michael’s rare disease and said should he experience stroke symptoms in-flight, parents will alert flight crew of an emergency medical situation. Airplane will be expected to land immediately. Right before our trip I saw myself banging on the cockpit door yelling, “Land this plane, STAT!” Fortunately, it was only a dream.

Even something normal like attending a school field trip required extra time and details to assure Michael’s special wheelchair needs were accommodated. It’s surprising the number of locations, which are not easily “handicap accessible” despite the signs suggesting otherwise.

Be The Change asks you to demonstrate large doses of patience and tolerance for physically and medically challenged travelers. Let’s not add to an already extensive list of concerns. Be the one who holds the door in assistance and offers a helpful hand. Always give a smile instead of a stare and Be The Change!

Through your window...

2011-04-22T06:11:00.011-05:00

My husband Donn, is one of the kindest human beings I know. His birthday is coming up, giving me the perfect opportunity to highlight him and tell you a little bit about him.

Donn reads the Star Tribune paper copy cover to cover, daily. He remembers high school friend’s birthdays but can not recall the one thing he needed at Menards without his trusty yellow post-it notes. He dislikes hot weather but absolutely loves the hot sunny beach of a winter Mexico vacation. Mosquitoes and other bugs flying around his head make him feel “buggy” so he’s often found swatting them with his newspaper. Without question, he drives the cleanest car in town and makes certain I do too.

He has been my best friend for over thirty five years, which includes twenty five years of marriage. I assume his many friends would agree he’s not only kind but one of the friendliest guys you will ever meet. As a son and brother, he connects to his family with an open heart full of love and commitment. Since the mid 1970’s that abundant love overflows onto me, creating a bond that instantly made them my family too.

Donn and I have shared more life experiences together than apart. No matter what, Donn’s loyalty is constant. When my Mom needed a wig during cancer treatment, it was Donn that drove us to Dayton’s in Southdale. At a social event, Donn will always find the time to chat with old neighbors about all the fun they had growing up near Lonsdale. He’s the kind of person who loves when someone asks him to help with a project. Sure to arrive with a trunk full of things he has to make the job easier.

Donn cries at weddings and screams “like a girl” watching a scary movie but is embarrassed that he does. He’s the type of husband that never leaves without kissing me goodbye. Everyday he comes home from work with a smile on his face. He is a hopeful optimist, never giving up on me or our family even though some days were pretty rough. He supports me one hundred percent even the day I came home from work and said “I’m quitting my fulltime job to “Be The Change”.

In his role as Dad, Donn gives me a glimpse of heaven each time I witness the depth of his love for our two children. In addition to saying the words I love you, he demonstrates love in action. Teachable moments he has with Jessica, makes me wish I could stop time. The silent grief he carries for angel Michael makes him a hero. My memories of Michael and Donn together lend moments of perfection.

Donn helped his parents wash windows a couple of days ago. In an email note of thanks his Mom said, “Through our windows, the world looks better.” Her words reminded me of looking out the windows of Michael’s hospital rooms, most of them water spotted and dirty. Never allowing a clear view of the world outside, something each of us longed for. It’s where I learned random acts of kindness go beyond the act. They provide a fresh gaze with a new hopeful view through any window. It did then and it does now.

Thanks Donn, for giving us a better look at the world through clear windows of your love, kindness and respect for life. People like you inspire others to Be The Change!

Read before you sign

2011-04-17T07:55:00.002-05:00

As patients we sign a few forms before clinic appointments, hospitalizations and surgical procedures. A recent Eyewitness News report suggests we should be more aware of what we’re signing these days.

Prompted by online review of doctors has some healthcare providers adding another form to sign. In addition to an already overwhelming stack of paper work requiring signatures, patients must be cautious of a waiver called “mutual agreement to maintain privacy.” This kind of agreement can be categorized as a patient “gag order” and, according to Angie’s list, its use is relatively new. Angie’s list offers an online collection of consumers real-life experiences designed to help members find high quality service companies and health care professionals.

A patient can expect to sign a few forms such as release of medical information or HIPAA Privacy and it’s no secret many patients don’t read the myriad of paperwork handed to them. Along with that concern is; are patients provided a proper atmosphere or time frame to read and understand lengthy important forms?

Now adding to those issues is a type of “gag order” waiver, which apparently can be confused with a HIPPA form. This should definitely make patients take another look at what they’re putting their signature on. As consumers we should never hesitate to ask questions or feel pressured to sign something we don’t completely understand especially when it involves our healthcare. If necessary, ask for more time to read forms or request your healthcare provider to explain what the forms really mean to you as a patient.

In a respectful relationship between patient and provider there should always be time to discuss concerns whether it’s about paperwork, healthcare or other. A healthcare provider giving quality medical service should be confident in patient word of mouth acting as the best marketing tool available, having no desire to sign that away. In a patient-provider team, open dialogue is critical for obtaining the level of trust exceptional healthcare demands.

Be The Change agrees with Angie Hicks, founder of Angie's list, “If a doctor is asking you to sign this, they are not trusting you, so maybe you shouldn’t trust them.”

Next time you have a few forms to sign read them first…. Be The Change!

One missing....

2011-04-08T17:05:00.020-05:00

I have seven wonderful brothers and sisters. Together as siblings we have weathered many storms; Mom’s cancer years, Dad’s sudden massive heart attack and Michael’s rare disease.

I love them both collectively and individually and share unique relationships with each of them, especially with my three sisters. As women and mothers, we travel a road distinct from my brothers. We recognize features in each other that nurture the treasured place we come from. Others comment about the similarities we have, which are proud moments for me.

The last few years, I've shared a weekend with my sisters at an exclusive B&B up north. (That's what I call my youngest sister’s home!) This year, four turned into three because my oldest sister was missing. Ovarian cancer treatment currently limits her choices, but a faithful and hopeful optimism continues, leading her towards a healthy future.

I struggled with whether or not we should do sisters weekend this spring since all of my sisters weren’t able to partake. Should we still go regardless of my oldest sister’s plea to go with out her? This particular week was picked months ago for an opportunity to watch our nephew’s high school play performance. We certainly didn’t want to disappoint him in having “the aunties” from his Mom’s side in the audience.

During my decision making process I began to recall times when I encouraged my siblings to do things without me during some of our personal healthcare circumstances. That actually helped me make my final decision.

We don’t always get to choose what we do, or if it will be together or apart. There are seasons each of us will walk a narrow path purposely built only wide enough for one. In life’s occasions one might be missing, either temporarily or permanently. I believe the best way to honor anyone missing is to live life joyfully and make decisions that best represents them. Joy isn’t simply defined by what is, but in what was and in anticipating what is to come.

In grief, one is acutely aware of something missing and eventually learns to adjust accordingly. In grieving my parent’s death and then my son Michael’s, I have experienced the importance of making choices filled with life giving energy. My parents often said, no matter what, with or without them, we are a family. They showed us that in standing together, we lighten the load of life’s burdens. Now I see my siblings demonstrate that philosophy, respecting the words of wisdom passed down by two people we adore.

I just returned home from my northern retreat with my two sisters. We had a good time but certainly aware of one sister missing. In our hearts, she came with us. We look forward to the next time we are all together to Be The Change!

Ways to be a wise consumer

2011-04-01T06:58:00.015-05:00

WCCO News recently reported about Gov. Mark Dayton ordering competitive bidding for state contracts and a new level of financial disclosure. The story grabbed my attention since I have over twenty years of medical insurance experience plus it shouts Be The Change!

Real reform begs each of us, from legislators to healthcare consumers, to have a renewed focus on where our money is going. We must consider how much bang we get for our buck not only in the quality our dollar purchases in healthcare, but also in terms of insurance reimbursement standards.

The days are over when consumers only concern is insurance out of pocket costs in comparison to their premiums. Consumers have a type of vested interest in the ways medical insurance administration act as wise stewards with our healthcare dollars, which translates into available healthcare options and overall costs. It all goes hand in hand.

Be The Change supports financial disclosure and bidding competition for health plans. It’s necessary to build new pathways for some much needed change in that healthcare arena. Corporate profit can not continue to dictate the choices patients and families must then struggle to cope with, especially in the case of chronic and rare diseases.

Cub or Rainbow isn’t the only place we need to be wise consumers. Insurance choices such as a Health Savings Account and other similar plans is creating a product awareness that puts much needed focus on the cost of healthcare services rendered in relation to insurance coverage. Health insurance companies play a big role in the healthcare environment and need to reform along with everyone else.

Ask your clinic, hospital, pharmacy and even your insurance company about the varying competitive costs of services and reimbursement rates. Information is powerful therefore shop around, get more equipped to make wise consumer decisions and Be The Change!

Can I Be The Change?

2011-03-25T09:29:00.021-05:00

Following a presentation I gave a few days ago at the University Of Minnesota, School Of Nursing, Be The Change continued in an energizing discussion with a Nurse Practitioner.Her provider plus educator perspective fueled all sorts of possibilities each of us, equipped with an individual set of medical experiences, can improve healthcare.

Is it possible for any of us to really Be The Change? The question begs to be asked by any patient, family member or provider desiring a change right now, not sometime in the near future.

Can anyone be the change at their current job and relationships in and out of the work environment? The answer is yes! It is possible. First and foremost, believe anyone can Be The Change, regardless of job title or college degree. The somewhat daunting task to change should never stop us from being the one who begins a chain reaction.

Consider these simple suggestions as a way to Be The Change, starting today!

Be the one who says good morning to others even if yours wasn’t
Be the one who gives respect to any job ranging from mail clerk to CEO
Be the one who won't exceed work break or lunch time allowances
Be the one who refuses to have a bad attitude or gossip
Be the one who consistently smiles and says thank you

You might be thinking, how can any one of these small changes make a big impact? In order to be changed in a way that is altering and sustaining, minor daily modification are required. Remember, it’s often little things that are overlooked when searching for a dramatic change.

These suggestions may seem simplistic in words, but moving the words into action is no small task. However, perseverance will make the ordinary become extraordinary. Your change affects others and turns into shared ownership that positively impacts everyone around you. Encouraging them to be the change too.

Be The Change challenges each and every one of you, whether you are in healthcare or not, to start today on your individual path to Be The Change. Feel free to share your story with me at http://bethechangemn.com/share-your-story.

At the close of every Be The Change presentation, I say, “One nurse, one doctor, one person leads by example affecting others and is the change”.

Be The Change, you might be the one!

It's Orientation Day!

2011-03-18T07:11:00.018-05:00

Be The Change participates in the Park Nicollet Health Services, Orientation Learning Day. Each month I share a small portion of Michael’s story with new nurses just beginning employment with Methodist Hospital. The primary focus of my talk is death and dying, highlighting a few details about Michael’s last, end of life hospitalization.

Death, especially when it involves a child is not an easy topic to discuss. Honest dialog from someone experiencing the unthinkable supports the many who deliver that avenue of care daily. A family member speaking about the specific nursing required during that end of life phase, steps in the right direction towards strengthening partnered relationships between patients, families and their providers. Dispelling the “you against me” myth and instead uniting us in a common goal.

An emotional topic such as death and dying, presented to a healthcare audience who walks the end of life road with patients and their families, has proven to be a valuable partnered relationship. Park Nicollet Health Services is displaying in action a commitment to patient family centered care by including the patient family perspective in their orientation process.

Be The Change presentations create opportunities for patients, families with their providers to use real life experiences as a tool for healthcare improvements. Speaking out on behalf of patients and families, I make their perspective present and attach it to medical expertise. A partnership that nurtures the human experience as well as impacts the quality of medical care through a shared ownership centered in respect of each others role.

This type of healthcare impact is being overlooked by many medical departments and healthcare organizations. The patient family perspective must be present in all healthcare exchanges from daily patient care to corporate management, in order to form a relationship between patient, family and provider that’s not only healing but sustainable. It’s the very thing that’s been missing in previous attempts at improving healthcare delivery.

We have nothing to loose, only so much to gain when we partner together and connect our areas of expertise. Allowing patients and families to stand side by side with their healthcare providers, inside and outside of medical crisis, is the best possible outcome for everyone.

Usually it’s the little things, which really make a big difference. At Park Nicollet orientation I tell a story about a nurse that made exceptional arrangements for a tired mother, recovering from a mastectomy to be with her son just admitted into the hospital. The nurse became a significant partner, giving more than just small necessities the mother needed to stay with her critically ill child. A priceless gift of time was given, nurse to mother, since that hospital admission was her son’s last.

Stored inside that experience is an example of a human experience profoundly influenced by a nurse who already knew how to Be The Change. Thanks to Park Nicollet Health Services, its value can be proudly shared.

Every task, big or small invites us to Be The Change!

Michael's Heaven Day

2011-03-10T15:45:00.022-06:00

The funeral was over. Flowers occupied random empty spots in our house. Silver foil containers filled the refrigerator. Michael’s room appeared the same as the morning he left it for what became his last hospital stay.

The morning after the funeral, sitting silently at the kitchen table, were the heart-broken weary remains of a family unsure of how to proceed. That’s when I started to weave together something my brother shared with me a few days prior.

Words shared in a conversation my brother had with Jessica, resonated in his spirit and prompted him to speak it out to me. He suggested my family take a trip immediately following the funeral, to allow some unfamiliar space and time without interruption to assist the healing start. Although difficult to do without Michael, that’s what we did. Middle of March 2005 just days after Michael’s funeral my husband Donn, our daughter Jessica and I boarded a plane headed to Florida.

Looking back on it now, I can honestly say it was a string of divine intervention. Beginning with faith filled words spoken then shared, to a travel agent able to plan a trip for us in a matter of hours, despite spring break challenges. On to other extreme acts of kindness lovingly demonstrated by others, such as those who knew Jessica’s hearts desire to see a Twins game under the Florida sun.

We rarely speak of that March trip in 2005, unlike our other vacations that we relive in story after story and pictures galore. However, it deserves attention especially since it filled purposes beyond earthly comprehension. What began as a respite from the unimaginable became a time of grace. In our new family dynamic as three plus one angel we talked, laughed, cried, and rested. For days we repeated that process, safe in Florida's embrace. What resulted was a resolve to focus on Michael’s life, not his death and press forward to the day we see him again; all because of love.

Love surrounded us on that trip. It was the gentle force we desperately needed to step out in faith. Its flow continues, supporting the decisions that keep moving us forward. In any situation, even healthcare, when life’s good and bad are spoken out and shared it makes overwhelming possible. Words turn into a compass that gives direction to a path never walked upon before.

March 10^th, fondly referred to as Michael’s Heaven Day by a family six years lonely for the dream weaver. We can honestly say we walk through our grief knowing unlimited depths of love and confident waiting in and on the other side of painful grief experiences is the very One who holds him now.

In memory of the change maker, our hero Michael Zimanske, Be The Change!

Busy, busy, busy

2011-02-28T11:04:00.020-06:00

A friend recently reminded me of the hidden treasures stored in being busy, especially in a fast paced society where the word busy is used repeatedly. Quite often it’s the answer to, “How are you?” Think about how many times you use the word and if you’re not too busy, ponder these thoughts.

There are many who wish they could be busy. The shut in who is forced to stay indoors because of the weather or the cancer patient too ill to leave the bedroom. I think back to the extreme busy in the dialysis months with Michael and the three to four days a week devoted to that life saving schedule. Every time Michael wishing he was busy with something other than kidney dialysis. There are patients and families enduring that intense schedule right now, which makes my current busy schedule, appear minimal. The fading memory of overwhelming busy has given me a new approach to the not enjoyable on my to-do list by thinking, it’s better than a day at dialysis. Calling to mind the hopes and dreams of a little boy who at one time wished he’d be busy with anything other than managing the affects of a rare disease.

Today, February 28, 2011 Rare Disease Day, look at busy from another perspective. There is two types of busy. One we control and one is beyond our control. Hundreds of rare disease patients, similar to Michael, have very little say in how they are forced to be busy with rare disease treatments such as dialysis and how the disease controls them and large portions of their lives. On the other hand, most types of busy are in our control, putting us in the driver’s seat setting the pace, which gives the opportunity to question, is my busy pace at the right speed, allowing it to be the gift that it is?

Sitting in the front seat co-piloting the life of our son Michael, a rare disease hero, I was involved in an “out of our control” busy, which provided a renewed outlook on a busy day. Watching Michael live and die from a rare disease transformed my busy way of thinking into a more truthful reality.

You can read inspirational stories about other rare disease patients at Inspire in recognition of Rare Disease Day 2011. These stories contain transforming words.

In honor of all the R.A.R.E. patients and their families who are currently very, very busy thank you for reminding us what busy really means. It’s important to never be to busy to Be The Change.

A relationship with your primary care physician

2011-02-24T12:58:00.015-06:00

An article recently published in The Wall Street Journal Health Blog, “Survey: What Doctors Want to Tell Patients (And Vice Versa)”, left me a bit shocked at some of the information yet excited to read patient and provider results together.

One of the key points that caught my attention was on the issue of respect and appreciation. According to the survey 70% of doctors said they were getting less of it from patients and patients said the more they were being treated respectfully and listened to, the more satisfied they were with their physician. To me that’s not surprising.

Featuring the results of the two surveys in the March issue of Consumer Report s indicates doctors said forming a long term relationship with your primary care physician is the most important thing patients can do to obtain better health care. Since 76% of physician’s say it would help “very much”, how can patients develop long term relationships amidst the current primary care physician revolving door? In my healthcare alone, my primary care physician has changed three times in the last five years due to change in clinic location and moving to another state.

These survey results support a key focus of Be The Change; The importance of strengthening patient provider relationships. Many current healthcare concerns would be diminished if we simply put more attention on the relationship between patient and provider. It’s the beginning, middle and the end of every “best possible outcome” we hear so much about in all types of healthcare from preventative to crisis emergency care.

Mothering a child with a rare disease as well as a breast cancer patient myself, I have spent many years developing all sorts of relationships with medical providers ranging in the good, the bad and the uncategorized.

Try these suggestions in forming a patient-primary care physician relationship:

When making the first appointment indicate you will need additional appointment time, which allows enough time for examination as well as questions and discussion.

At the first appointment discuss your intention to develop a long term relationship between the patient, family, and the physician including the clinic. Clearly define your expectations regarding appointment availability, how physician can be reached during the day and call back philosophy. Discuss emergency, nightly and weekend care protocols.

After the appointment record pertinent information in a patient-provider notebook brought to every following appointment, including prescription information.

Access if this physician met your needs both medically and relationally. If not repeat the process. That’s the most difficult part in developing a good relationship with a primary care physician. If the first appointment didn’t go as expected, make another appointment or seek out a different physician. Either way, the additional investment of time and energy will be well spent if the unthinkable happens to you or a family member.

Similar to relationships outside the medical arena, a relationship between doctor, patient and family evolves over time. Intentional effort centered in kindness and respect that comes from all parties makes a good solid relationship. In my experiences, when I viewed my doctor as a real person with human qualities like mine such as fatigue, frustration, fear and vice versa, we were better equipped to build an honest, trusting relationship.

Respecting, appreciating and improving the relationships between patient, family member and provider will most definitely enhance the human experience that occurs inside the medical one. All of us will be more satisfied with the end result when we consistently ask the question, how can I Be The Change?

New at Be The Change

2011-02-21T07:50:00.020-06:00

Check out exciting new links to Be The Change!

The NEW Be The Change Website
http://bethechangemn.com

Be The Change on Facebook
http://www.facebook.com/pages/Be-The-Change/197421696939 529?v=wall

Be The Change on Twitter
http://twitter.com/bethechangemn

View Be The Change stories on YouTube
http://www.youtube.com/bethechangemn

Theresa Zimanske-Be The Change blog page has a new design too!
Always something new and exciting happens when you, Be The Change.

What is empathy....really?

2011-02-16T09:25:00.010-06:00

Empathy as defined in the Webster’s dictionary is the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts and experience of another of either the past or present without having the feelings, thoughts and experience. Preferring simpler language, I think empathy means trying to imagine another person’s life without actually experiencing it.

A constant source of kitchen table discussion is uncertain needs of a friend with cancer or co-worker with a critically ill child. It can be a struggle to find the adequate margins and depth of empathy that matches the desired support. Understanding empathy begins with discussion but then moves into action, more clearly defining the word.

Empathy must also be found in our relationships between patient and medical doctor, offering another category of discussion around the table. An article written by Thomas Dahlborg recently published in Hospital Impact titled, “How a lack of empathy affects our healthcare” addresses some concerns as to why the importance of empathy between patient and physician seems lacking despite their oath.

This article strikes a very personal nerve for me because we consistently faced the empathy dilemma in our son’s healthcare. One of our challenges as a family with a critically ill child was getting the medical community to see us beyond the diagnosis, with eyes of empathy. The dynamics of a patient’s life and their family can not be excluded from the treatment plan. We were a real family with full time jobs and work demands, busy kids school and sports schedules, even a camper in the driveway before this horrible disease came to live with us. Taking that into account along with the many ways life had to change to make room for this disease was our new reality and affected Michael’s overall health condition.

Sharing real life experiences opens the door to increasing empathy by representing the patient family perspective in healthcare at Be The Change presentations. Talking about our human experience puts a real face to the diagnosis and raises the question of empathy in current healthcare strategies. Providers need to know the life of their patients in order to properly care for the total health of the patient and the family unit and our real life medical stories demonstrates the need for that.

While our son Michael fought against his disease, we as his parents were forced to fight an additional battle with what the disease was doing to our family. It would be unthinkable for a patient to treat an illness alone without the help of a doctor. The same is true in the healthcare battle with empathy; it can not be done alone. We share the responsibility of enhancing relationships between patients, families and their providers, the kind of relationship that creates strong partnerships and increases human capacity to practice empathy. Sometimes in the midst of discussion with Michael’s doctors about a possible procedure or surgery I had to remind them that this is my son; he’s a little boy not just a rare disease. Those words brought us into a new arena and allowed a decision about Michael’s medical care to be empathetic and statistical.

The need is here and now, for us to line up the patient family perspective with the medical perspective in the medical education system. Attaching Be The Change methodology to current medical curriculum is the missing link to putting empathy back as a priority in healthcare. Written and spoken curriculum taught by one who has lived the experiences of the patient and family perspective in health care, provides an education that can not be learned from any text book.

Be The Change MN agrees with the views of the article mentioned. “We must tackle the hard stuff” to radically increase empathy in healthcare and really Be The Change.

RMH at Childrens

2011-02-11T08:13:00.013-06:00

The first Ronald McDonald House - RMH built within Minneapolis Children’s Hospital was recently highlighted on the local news this week, making it only the fifth in the nation. The Frick Family, interviewed as one of the first guests of this valuable means of support to families with sick children, spoke many of the same words of truth I also had years ago.

This type of temporary housing need wasn't one I ever considered my family requiring until we found ourselves, “on the other side of the fence”, which were actually some of the same words spoken by the Frick Family in their interview. In the case of critically ill children being away from home is an additional stress that’s often under stated in the medical arena, but dramatically impacts a patient and their family’s human experience, affecting the medical outcome.

There were days during Michael’s hospitalizations where being just a few steps away was simply too far from him and his fragile condition. We learned some creative methods in an attempt to acquire a short rest and yet be near our critically ill son’s hospital room. A make shift bed consisting of two pieces of furniture from the family lounge, pushed slightly together in an odd L-shape, was my least favorite.

Never guests of the RMH since our home is less than an hour’s drive from Twin Cities area hospitals, we still had the distinct pleasure of getting to know many families residing there while their children fought a medical battle. Their stories of appreciation and gratitude despite being away from home and extended family always increased my gratefulness for the times we returned home to ours. However, a home away from home such as the RMH inside Minneapolis Children's Hospital can meet the needs of parents not able to step away from the hospital due to a child's medical condition but still in need of respite, regardless of the distance they traveled to get there.

Be The Change supports every effort being made that gives families a place to call home in the midst of medical crisis. Kudos to Ronald McDonald House, Minneapolis Children’s Hospital and everyone involved with creating a one of its kind in the Midwest! Representing the patient family perspective through Be The Change, I’m confident that when we partner together in shared responsibility, tremendous needs are met for patients and families and demonstrate the true meaning of patient family centered care.

We all need a place to rest but even more so when the unthinkable is happening to one of your children. It provides room for each of us to Be The Change.

HELP Emily Koesters

2011-02-07T09:13:00.020-06:00

One of my Schimke heroes is Emily Koesters from Nebraska, along with her parents Erin and Joe Koesters. Be The Change in MN recognizes and supports the tremendous need for research and testing of this rare disease.

Please, in honor of all the Little Giants affected by SIOD, consider their request below and help Emily Koesters.

Emily Miranda Koester’s Nebraska Little Giants Day 1st Anniversay, proclaimed by Governor Dave Heineman last year is coming up on FEBRUARY 10th!

The fight continues...life expectancy for Emily's disease (SIOD- Schimke Immuno-osseous Dysplasia) is age 8-15! Emily is 7 and 1/2 now.

The Schimke researchers are on the brink of a drug that may help PROLONG lives of SIOD. LET EMILY LIVE TO TEST IT!

Here's how to GIVE NOW:
1. Go to www.littlegiantsfoundation.org and click on the far right tab: GIVE NOW
2. Send us a check made out to Little Giants Foundation and we will send a mass mailing in. Address: Erin Koesters 15603 S. Hwy 6 Gretna NE 68028
3. SEND this site and/or FACEBOOK, LGF site to EVERYONE YOU KNOW to contribute!

We are setting a goal and deadline, which you may exceed, of $20,000.00. Think about it: We have at least 2,000 followers at 5 or 10 dollars a piece- we can do this by FEBRUARY 14th! Not only is this a TAX write off, but 100% of the money goes straight to the researchers for the drug! 100%!

We are parents pleading on bended knee!

Don't delay; Emily's life depends on it.

Believe-
Mommy Erin and Daddy Joe

BWAD

2011-02-02T09:30:00.010-06:00

Did you know that Monday was Bubble Wrap Appreciation Day – BWAD? A couple of Indiana radio DJ’s began honoring this unique product with its very own appreciation day back in 2001. Intended focus given to bubble wrap enthusiasts everywhere. The Zimanske’s have their own special reason for appreciating this fascinating plastic sheet of fun. Another opportunity to chuckle and share happy memories of Michael goofing around with one of his favorite things, bubble wrap.

He would pop that bubble wrap over and over again until tempted to roll him up in it. He even figured out that rolling over it with his wheelchair made popping sounds without interruption. He loved the popping noise and the louder the better. Actually he just loved noise. I can remember trying to teach him the difference between noise that was necessary and noise that wasn’t! Now I can laugh at such wasted energy. Isn’t it funny how something once found so annoying is the very thing I now long for; just some plain and simple kid noise.

Michael’s death produced a premature and often confusing empty nest scenario for me. Adjusting the empty nest radar is one of the many things you learn to alter with a child who has special needs. That particular altering wasn’t too difficult since Michael use to proudly proclaim he planned to live at home until he was forty! I can recall him asking us if once he got married, could he and his wife live in our basement. As I began to live life without Michael, hidden in my subconscious was the blaring reality that I will never finish parenting my son. Fortunately, I’m surrounded by the lives of many other children, which comes as a tremendous blessing to a lonely mothering heart, yet makes it imperative to consistently assess boundaries and motives.

In my life, having another child to parent provides a motivation to keep moving forward. It offered acceleration to some of the grief process despite the intense sadness. Our daughter Jessica graduated from high school and left to college only fifteen months after Michael's death. I recognized it was the fresh new start she desperately needed, forcing us to look for one too, but it created a stifling quiet. All of a sudden it wasn’t just Michael's noise missing, all the noise was gone. It made me realize I really did like noise and led me to continue the legacy of a noise maker.

Celebrate BWAD this week, in honor of all the noise makers out there. Pop a few sheets of bubble wrap and make some noise. Don’t limit or be silenced in the ways you create noise, especially when it involves something you’re passionate about. Make it a distinctive sound we should all hear to Be the Change.

Step outside the box

2011-01-27T10:41:00.006-06:00

In the arctic chill on Mille Lacs Lake last weekend, I viewed one of the most glorious moon lit nights I can recall. A large bright moon that hung so low in the sky it seemed almost touchable. It provided an illuminated glow on the snow covered ice that made me pause despite the below zero temperature. The experience revealed what waits when willing to step outside the box.

Spending the night in a fish house has been on my list of things to do. Shocking as it might seem to some, I wanted to give it a try. I will admit that I came into the planning process with a short list of fish house requirements, which included a backup plan. As luck would have it, the chosen weekend turned out to be one of the coldest this season. However, inside my cute and comfy fish house, I was hardly affected by the cold.

Unfortunately the fishing wasn’t the best but the fun and laughs were nonstop. Very early Sunday morning one rattle reel made its announcement of fish on (that’s fish house talk). While my brother skillfully handled the fish call, I took a walk to the out house, answering natures call. Stepping out of the fish house box fully expecting a blast of cold air, I got much more than that. The path of crunchy snow on the icy pond not only provided an ease to my walk but also a glow of bright light twinkling on the cold snow. The fish houses scattered about looked like boxes under the lights of a Christmas tree, just waiting for discovery. The moon provided a mosaic beyond imagination.

Monday morning as I contemplated my ice fishing weekend, confident that I would do it again, I realized an odd connection between my fish house experience and Be the Change. When I step outside the box, whether it’s a fish house or a new endeavor such as Be the Change, waiting for me are experiences and opportunities that would have been missed had I decided to stay inside my comfort zone, not willing to try something new.

Be the Change represents a way of thinking that might challenge comfort zones and require out of the box action that has never been done before. But waiting for us will be a health care environment that’s better than any patient, family or provider has ever experienced before, simply because we tried something new.

On the ice of Mille Lacs Lake, in the quiet still of the night, I experienced something big and bright outside of something small and simple, comparable to life with Michael. Tucked back into my fish house bunk bed following my moon lit walk, I thought about how Michael would have loved this and pictured him waiting for the next big fish.

Subtle simplistic ways provide light to Be the Change.

Heard it's your birthday

2011-01-18T08:41:00.013-06:00

It’s my daughter’s birthday this week, and it has been a busy month with all sorts of celebrations containing birthday cupcakes, brownies, chocolate ice cream and of course, presents!

Every year as we celebrate her birthday, an unwrapped present flows from her to me in what appears to be boxes of priceless memories, which fills my mother’s heart with completeness.

I envision the little girl with blonde curls and a pretty dress excited for her birthday party who now resides inside the young woman who still loves to wear a party dress and twirl with that same type of birthday-girl excitement.

Comparable to my son, Michael, my daughter also has a gifted ability to teach me valuable life lessons. Her style is just as powerful as her brother's but a bit more concealed. Upon asking, she will instruct a heartfelt message that displays her own personal journey. As a sibling, she holds a unique perspective inside the patient and family scope, but also in the unexpected life of an only child plus one angel. She demonstrates in action, not just words, what it means to be joyfully happy despite your circumstances. Her courage challenges me to stretch the perimeters of my own choices and go outside the box of possibility - another gift her life offers me.

I have been given so many treasured gifts from my daughter, especially through her words. They often resonate in me like a source of truth from the divine. A few years ago she explained to me her goal for happiness. It became a day I will never forget, setting a course for my own. “I know I can be happy up to here," she said placing her hand up to her forehead, “but I want to be happy way up to here," reaching her hand high above her head. Her explanation left me speechless and innately aware of the sacred in that brief yet sustaining display.

Each one of us should have that same goal, striving for happiness that exceeds possible and enters the unimaginable. Sadly it’s our own lack of trust and belief that sometimes prevents us from arriving at the place we were created to be. Embrace these words of wisdom, “Be happy way up to here." There you are sure to Be the Change.

Happy Birthday, Jessica!

Michael the educator

2011-01-12T07:48:00.024-06:00

Even though he never graduated from high school or attended college, my son Michael still holds a degree in education. His life provided the kind of wisdom similar to that of an aged scholar, regardless of his young chronological age. His curriculum was pages of priceless life lessons ranging from living with a progressive disease to dying peacefully, written from the soul of a small boy with a big purpose.

Here is one of many life altering moments gracefully allowed me through Michael’s classroom. There is no course available, even taught by the best of professor that can speak into such a broad range of life experience like a child who demonstrates it. As Michael's Mother I thought I would be the one who would teach him about life but instead it was him who taught me.

As Michael’s disease progressed and his hip joints separated, he transitioned into a wheelchair. I was his transportation to and from school, waiting each afternoon for him in the school foyer. When Michael came wheeling down the hall, I would watch his friend’s trip across his wheelchair, often falling on him or each other. They never seemed bothered by it, the fun and laughs continued despite the wheelchair chaos. At one point, I decided it was going to be necessary to share my concerns and speak to his class. A few days after that decision, Michael and I were playing at the park. I noticed the kids there didn’t have the same problem with Michael’s wheelchair and kept a safe distance from him.

That’s when I realized I was the one who had an issue, not Michael or his school friends. It became clear to me that his friends didn’t see the wheelchair and that’s why they stumbled across it all the time. They just saw Michael and wanted to be close to him. I never did speak to his class; instead I was taught to enjoy the view they provided in an amazing new way.

After that experience, I never looked at a person using a wheelchair the same again including those around the wheelchair; family, friends even strangers. We don’t always get to choose who or what will educate us but many opportunities exist. Is there a young child teaching you?

For me, it was a young boy in a wheelchair teaching a course called Be the Change.

Back to work and school

2011-01-05T13:16:00.006-06:00

The New Year’s Eve confetti has been swept up and the Christmas decorations are put away. For many, holiday break is over so it’s back to work and school. Getting back to the daily grind can be slow going, especially when it follows holiday buffets and late evening celebrations. Constant chatter about unemployment, educational cut backs, and the health care crisis doesn’t make it any easier to reclaim the race. Despite that, going back to work and school in a new year offers opportunity to apply a fresh focus and a renewal to healthy balance. An attempt to hold on to holiday promises of peace and joy all year.

In what is being referred to as a new economy, it’s nearly impossible to not consider what that really means in terms of true balance in our community as a whole, not to mention the world. Be the Change considers it necessary to create a better balance between patients, families and providers and increase the value, both fiscally and professionally, of those relationships. True reform in health care requires the patient and family perspective to be its partner. Future health care needs the human experience to speak into corporate choices and decisions. Honestly, just like in health care, education and employment, just to name a few are also in need of a Be the Change call to action.

Each of us stands in a position to provide balance by a type of educating not only found in a formal degree but also found in lessons learned through life experiences. Regardless of age or circumstance, there’s constant opportunity to be educated by others demonstrated choices. Every day we are called to challenge ourselves and others to be a better person, a better wife or husband, a better employee or employer in the decisions we make. It’s been said, “The only way to do better is to do better.” A short statement representing collective responsibility each of us holds.

In this first week of 2011, as you go back to work and school ask yourself how do I educate? How can I teach the world to do better? Then be that, not only in words but in action. Hopefully it won’t require any budget cuts, only an intention to Be the Change.

Here comes a new year!

2010-12-30T11:05:00.002-06:00

Along with noise makers and the countdown, New Year’s Eve comes with a desire to look back and give the memories of the past year another look. Every year I wonder how 365 days could go by so fast. At the same time, I naturally begin to make room for the new memories about to arrive. Even the lyrics of the traditional New Year’s Eve song, “Auld Lang Syne,” call for reflection: “Should old acquaintance be forgot and never be brought to mind…” I think old acquaintances contain treasures that are exclusive to long term relationships and provide confidence for the path into a new year.

Before 2010 draws to a close, I want to express my heartfelt thanks to both old and new acquaintances who have supported my call to action through Be the Change. If you prayed, encouraged, trusted or believed in the vision, please know I am extremely grateful. Be the Change has made great strides because of this support. Many lives and relationships have been impacted by patient and family stories, including the one that inspires Be the Change. Our story started long ago with a divine purpose in Michael, the change maker and dream weaver.

Ralph Waldo Emerson once said, “Don’t go where the path may lead, go instead where there is no path and leave a trail.” That’s what Michael did - he paved a path and left a trail. In 2011, Be the Change will continue to journey on that path, giving a voice to the patient and family perspective in health care. Be the Change will build upon the foundation of 2010 to establish new partnerships that nurture the human experience thereby improving the medical one.

Michael’s life, a model of courage and unlimited spirit, left a trail for each and every one of us. This new year, make a path, leave a trail and Be the Change.

“For auld lang syne, my dear, for auld lang syne, we'll take a cup of kindness yet, for auld lang syne. And surely you'll buy your pint cup and surely I'll buy mine! And we'll take a cup o' kindness yet, for auld lang syne.”

Happy New Year 2011!

Our Christmas story

2010-12-21T07:28:00.009-06:00

A young man seated among first year medical students at a Be the Change presentation last Friday asked me, “What did it take for your family to stay intact amidst so much medical crisis?” My answer flowed easily since I’m absolutely sure of what it took.

I expressed my gratitude to this student from Mayo Medical School for asking the question. It gave me the opportunity to talk about the real human experience, which for us includes unfailing love consistently received from family and friends. There was the answer; it takes love and lots of it. Love exemplified by selfless service to our family is what sustained us, making us resilient. It continues to supply the strength we need to keep pressing forward.

Although loving service is a free gift, it’s sometimes difficult to receive especially when pride wants some space. Yet, when able to humbly receive you view something greater than yourself. Through grace, love becomes tangible by a blessing chosen specifically for you, answering prayers of the faithful.

Thankfully I say we are loved beginning with the One who loves us most. Love and kindness demonstrated to us in our desperate need by the hands and feet of family and friends, even strangers. It’s our own version of the Christmas story; people making room for us, giving what they had. Similar to what was done for a weary couple in Bethlehem thousands of years ago.

My hope and prayer is that you too receive deep, unconditional love and because you experience it, you are changed. And if ever you are asked what it will take you can reply, without doubt; it is love.

Merry Christmas and Happy New Year 2011 from Be the Change.

Nothing like a snow storm

2010-12-13T12:19:00.017-06:00

When my kids were school age, a snow storm always began with the hope that Lakeville schools would close. That would lead to cries of disappointment and frustration as they watched the school alerts go from the letter L to N announcing, New Prague School Closed. Not Lakeville Schools however, never Lakeville according to my children. Even more annoying was that they had to go to school knowing their cousins living in New Prague had the day off, but not them.

Finally home from school backpacks were set aside, replaced with the proper outdoor gear required for playing in the snow. The best was when there was enough snow for the plowing professionals (actually our wonderful neighbors) to pile the snow near our house, making the perfect spot for sliding and snow fort construction.

A picture of Michael that sits on my desk holds a precious memory of him in the snow. The picture was taken a snowy December similar to the one we are having now. My husband was outside clearing snow off the driveway and Michael was with him, as usual. Michael was playing in the snow pile directly in front of the kitchen window, perfect for me to keep an eye on him while I was preparing supper. I remember thinking how odd his bright green wheelchair looked as it sat abandoned next to the snow he was playing in. I hadn’t seen the orange ball of his winter hat pop up and down for a few minutes so I opened the front door and called his name. Out of the snow popped his sweet face all covered with snow. With a big grin he yelled, “Here I am Mom, I’m digging a tunnel.”

In that moment, Michael didn’t have a rare disease. He didn’t need to use his wheelchair. He was just a boy playing in the snow. I stood by the door a few more minutes debating with him about the time he should come in for supper. He was wishing he could stay outside just a little bit longer and I was wishing his life could always be that simple.

Waking up Saturday morning to the blustery snow storm, I thought about the excitement my kids would have had regarding this big storm, especially if it wasn’t on the weekend. This time even Lakeville would have surely cancelled school. I gazed at the picture of Michael in the snow tunnel he dug in December 2003. Memories of the simplicity in that evening came rushing in, as well as, thoughts about the complexity in his young life back then, which seemed to crowd the memory. Painful dialysis had just begun and a kidney transplant loomed on the horizon. Life in a wheelchair, especially during the winter, was added to the list of challenges he faced.

There’s nothing like a snow storm, which comes blowing in without permission changing plans, canceling school events, and altering the busy holiday season. Another perspective provides us with an opportunity to create your own tunnel either in the snow or to your soul. Enclosed by the stillness of a blizzard day, you find solace there. Whatever your tunnel, know it can hold you joyfully captive, even for just a little while, by the simplest of pleasures winter weather has to offer.

Put value in moments rather than months; an excellent way to Be the Change.

What a great Godmother

2010-12-07T16:15:00.027-06:00

I can remember back when I was little, how she came to the Christmas parties held for my Mom’s side of the family, with the most beautifully wrapped gifts I ever saw. The paper perfectly matching the giant bow, exquisitely tied with her creative hands. One year she gave me a golden colored jewelry box that I honestly thought was made of real gold. Each time we met she would proudly announce my name in a way that made me feel special. From my view,
she was the one who was special.

I’m referring to my Godmother Maxine. She went to heaven last week following a courageous seven year battle with cancer. Giving every kind of treatment a try, she definitely fought like a true warrior. When her body began to fail, it was her spirit that remained strong. While visiting her a few months ago, I commented about the beautiful perfume bottles in her bathroom and the memories I had as a young girl admiring the bottles she had then. Each one unique and beautifully displayed on a glass tray placed upon her bathroom counter, just waiting for use. Back then, I thought she was like Zsa-Zsa Gabor simply because she had so many elegant perfume bottles. I realize I still might think that, only because I know Aunt Maxine really is a super star.

Many women have influenced my life journey, my Mother, number one. Without a doubt, my Godmother is next on the list. Aunt Maxine was amazing; a great mother as well as a successful business woman. Her classy style, flair for fashion, plus many other talents, have left a permanent mark on me. They consistently demonstrated unlimited possibilities to a young farm girl like me. I’m extremely grateful for a loving relationship with a woman beautiful inside and out.

As my own cancer treatment became a fading memory, hers unfortunately increased. We discussed our human life experiences inside dreadful medical experiences and the need for improvements regarding the quality of health care. Now that Be the Change has moved from kitchen table discussion to action, Aunt Maxine and others like her will be the motivation in pressing forward. Advocating for the patient and family perspective to be fully represented in future health care relationships. Leading us to the day when a human experience will be as radical as the medical one.

From now on, I plan on wearing more fun jewelry and using beautiful perfume bottles in honor of my Godmother. Her spirit remains, helping identify ways to Be the Change.

Black Friday, Cyber Monday, what next?

2010-12-01T09:54:00.012-06:00

Monday morning my email inbox was filled with “Cyber Monday” advertisements enticing me to check out the great deals. I was reluctant especially since I never even finished looking at the huge stack of “Black Friday” sale ads last Thursday. I felt overwhelmed by each ad claiming to have the lowest prices ever. Really people, the lowest prices ever?

Regardless, Monday morning I just couldn’t resist the ease everyone claims is available by shopping online. I will admit that I did find a few nice things for a great Cyber Monday price but it took me all morning to browse through the multiple sites. I had a couple items in my shopping cart but ended up making zero purchases. I found it difficult to make a purchase without a tangible view. That shopping experience got me behind schedule in my work and a stiff neck. I fail to see the good value in all that, but of course that’s just me!

I am the kind of person that misses hotel keys, buttons marked on/off and pen on paper. I’m not even on Facebook yet. I prefer the kind of friends you invite over for dinner or meet for coffee. I like the convenience of computers and other technologies but only when they work properly. To be completely honest, I still feel as if my cell phone should only be used in the case of emergencies.

My online shopping attempt did give me some time to think while waiting for computer screens to change. What if the same focus and energy was put towards health care improvements? Imagine the endless possibilities for the patient, family and provider initiative with a Black Friday/Cyber Monday marketing budget available for enhancing health care relationships. We could call it Be the Change Everyday. No sales gimmicks, no need to stand in line or even make a minimum purchase. Just dependable advertising, defining simple and specific ways we can Be the Change everyday. Impacting the way health care is received and delivered everyday, making it the best deal ever.

Whether you prefer the convenience of shopping online, ad strategies or even getting up at midnight to be the first in line, have the same zeal for your everyday relationships. Quality personal, professional and health care relationships create a unique value. The investment will surely provide a return unlike any other, even in this economy. This holiday season Be the Change Everyday, even if you don’t see it advertised.

Prize winning Thanksgiving

2010-11-22T12:01:00.020-06:00

It was a couple days before Thanksgiving break. Michael, seated in his wheelchair, was holding a pumpkin while I glued on feathers and multiple little trinkets. Sure to make it the prize winning creation for a contest at school the next day. The best part of this treasured memory is the stories that have followed as a result of the blisters we received from doing this project. It was the first time either of us used an electric glue gun and didn’t realize that some cold water nearby was a necessity. I can still picture Michael laughing hysterically as I rushed through the kitchen screaming, “Hot glue, hot glue”.

That is merely one of the hundreds of Thanksgiving memories I hold sacred like a priceless gem woven into the fabric of my life. If visible it would be a banner displaying the word grateful for all to see. I recall the Thanksgiving feasts enjoyed at my parents house. Multiple tables lined up in the basement covered with each of our favorite things to eat, prepared with great detail by my Mom. Thoughts of my Dad sharing the latest joke he heard, him asking the grandchildren to pull his finger or if they finished their can of pop. I remember the Thanksgiving we were able to enjoy a Zimanske family hay ride; huddled together on a hay rack from the farm. The video camera taping each child announcing their age and Jessica proudly proclaiming she was not 6 but “6½ years old”, which became a memory the Zimanske cousins still laugh about.

Sure to come as no surprise to those who know me, I love to tell stories and share my memories. I enjoy experiencing the shared emotions that flow from the reruns of a happy memory. It feels as if the joy of the memory wraps a loving embrace around the group just because they heard the story, creating intimacy between those who now collectively share the memory.

I am, to my knees, thankful for the many memories I have that give way to great stories. Some happy, some sad, some intense, some just plain silly. Because of them, sheltered in grace and mercy, I have a depth of appreciation and gratitude that is divinely unexplainable, especially during this season of thanks.

At the risk of sounding cliché, remember to say thanks this Thanksgiving. Seize the moment; even if the words don’t come easy. Tell that special someone in your life that you are thankful for them. This Thanksgiving, tell a story and share your memories or create new ones as you Be the Change.

Everyone needs a good partner

2010-11-17T08:01:00.006-06:00

My life is tremendously blessed by great partners - my husband and children, my family and friends. We all partner together in various ways to simply lighten the load. In addition to my personal life, I have been impacted by great work partners, beginning in high school with a wise woman who worked at the local hardware store. All of these partnerships make me better because we act together to create something more powerful than if we acted alone.

I read once that everyday we should do something that inches us closer to a better tomorrow. Be the Change desires to do just that, simply by being a good partner. Be the Change (BTC) works to develop a new partnership in health care by defining a future for the patient and family perspective.

With good partners, BTC will:
-Give a face and voice to the Patient Family Perspective (PFP)
-Respectfully share personal health care experiences and insights as a catalyst for real change
-Maintain a website containing patient and family stories, along with speaker information about representing PFP in your organization
-Create innovative ways to improve health care quality and patient/provider safety
-Represent PFP in chronic care situations as liaison for coordinated care between patients, families and providers
-Receive fair compensation for patients and families representing PFP by establishing value and equality through fiscal partnerships with medical providers and administration.
-Work hand and hand with the medical community advocating for PFP and humanize medicine by strengthening relationships
-Obtain a PFP position in boardroom decisions
-Educate medical students by enhancing current curriculum that more consistently lines up with PFP
-Educate current medical staff how to effectively partner with BTC
-Develop brochures, books and video for everyone to partner with BTC
-Focus on the truth, which is we all want the same thing - the best possible outcome for the patient

Everyone needs good partners, especially in Minnesota where we plan to Be the Change.

Change and more change

2010-11-09T18:50:00.010-06:00

This past weekend we celebrated my father-in-law’s 79th birthday. On the drive home I thought about the multitude of changes he has experienced in his seventy nine years. Including the new changes he is forced to experience because of varying health conditions. None of us are immune to change and then more change. One of my husband’s famous sayings is, “We don’t like change”. We don’t necessarily have to like change, it’s what we learn from it that truly changes us.

One of the definitions of change in the dictionary is to transform or convert. I can relate to those simple yet complicated words. We had to transform our life many times throughout Michael’s illness. Each conversion definitely not easy, in fact just recently demonstrated in our change of address. In every change we grew beyond our limited view, learning things we wouldn’t have had we not accepted the call for transformation.

Michael was our change leader, which wasn’t what I thought initially as we were inundated with changes. I naturally moved into the matriarchal role of, the one in charge, leading my family through these many changes. On the other hand, Michael thought he was in charge and the boss of me! The truth is Michael had to change the most because of his rare disease. I think innately he knew in order to avoid SIOD be who he was, he had to take charge and be a leader. Amidst all the changes he still had this infectious desire to have fun. That helped him never lose sight of something bigger and better beyond all the change and more change. Now as I look over those years, I see the truth of who was really in charge. I thought I was the one teaching him, but actually he was the one teaching me.

Priceless gifts are offered through change, from a variety of sources. From a boy who put the cha-cha-cha in every happy birthday song to the man we sang happy birthday to last weekend. Each one providing wisdom to us by the changes they encountered in their life, ultimately teaching us to Be the Change.

Are you fully informed?

2010-11-03T14:04:00.005-05:00

Informed consent is a term used quite often in the health care environment. We appear to be informed by colored brochures and precisely titled information. They assist us in giving consent by a simple signature on a form. However, before consenting to anything medically we should ask ourselves, are we as patients and families really fully informed?

The complexity of being fully informed as well as the ability to make an informed choice was defined in a few stories I was recently told. In every doctor appointment or hospitalization we are asked for consent to many things, whether we realize it or not.
The concern lies in the following:
-Have we been given all the information necessary to make an informed decision?
-Have we been given adequate time to ask questions in order to safely consent?
-Have we been given the proper environment to accurately weigh all the options in order to give an informed consent?

At most medical appointments, we are given large doses of information. It makes having a notebook and pen with you at all times, a necessity. Medical data is complex with varied interpretations frequently exceeding one person’s capacity to absorb and process it. There is often a need for follow up conversation, either by phone or appointment, especially following a lengthy appointment involving life altering decisions. It’s not unusual to return home, where the stress of the appointment lessens, and new concerns or questions come to mind. Writing them down in your trusty notebook allows for them to not be forgotten, giving you the peace of mind they will be addressed later.

Sometimes patients and families are given only the data that lines up with the medical providers personal opinion or agenda. Fully informed choices are made based on all the information available with the opinions and agenda of both patient and provider presented and communicated as partners.

Consider the following questions about any diagnosis or treatment:
-Have I been given all the information, not just what others consider important?
-Have I been given all the treatment options including holistic and controversial?
-Have I been given all the risks, both physical and emotional?

With any medical appointment, a patient enters into a fee for service partnership with a provider. Not only are you paying them to do a service for you, but their profession promises to provide a level of respect and service that, quite frankly, is often lacking in our current heath care. Patients and family members are frustrated because of the many times they sense annoyance from medical staff in tense facial expressions, grumpy tone of voice or even words that too often rush our choices and decisions. It leaves patients and families feeling somewhat inferior for asking another question or asking that information be repeated at a time when they should be feeling confident and assured. Don’t allow that poor conduct to overshadow your expectation for safe, high quality service, which is valued in any good partnership.

Eleanor Roosevelt said, “No-one can make you feel inferior with out your consent.”

Be the Change says be fully informed before you give consent.

No perfect trick or treat

2010-10-27T10:13:00.025-05:00

I have great Halloween memories with the kids. The 1991 Halloween blizzard when Jessica got her boot stuck in the snow trick-or-treating, dumping her bucket full of candy in the snow. The year Michael dressed up as a Dalmatian puppy and cried for ten minutes because he didn’t want his nose painted. The time Jessica carried two large pumpkins from the furthest corner of a pick-your-own pumpkin patch because Michael insisted we search the entire field for the biggest one, which resulted in me having to carry him and Jessica mad at Michael.

The list of memories could go on and on. On a week like this, they run through my mind like my favorite movie on fast forward. Inside the fun and the not so fun associated with these types of family events and the memories it creates, lies an important lesson learned. In real life, nothing is perfect. Perfect doesn’t live here.

We all desire that perfect Hallmark moment with our families, but most of the time, it’s in the imperfections that we find our most cherished memories. When Michael began having unavoidable pain from walking, he and his cousin dressed up that Halloween in Scream costumes scaring unsuspecting Halloween guests. The first Halloween Michael was using a wheelchair he was concerned he wouldn’t be able to go trick-or-treating because of it. That was until he and a friend decided they would both wear all sorts of bandages covered with blood (ketchup) and they used the wheelchair as the perfect prop for two kids dressed up as accident patients. Another year Michael was in the hospital on Halloween convinced he wasn’t going to get any candy because he wasn’t at home. By the time he left the hospital a few days after Halloween, he had a bucket full of candy and toys from a hospital version of trick-or-treating. In addition to that, his school friends shared their Halloween candy with him so he had two big buckets of candy that year!

Perfection is not only defined by acts done perfectly but in the excellence of the act. One of the many blessings in having a child with special needs is a view of perfect that’s indescribable. For example, there was an excellence in the way family and friends chose to adapt to any situation changed by Michael’s progressing disease. Love was put into action creating something excellent, which helped him as well as us face what some would call limitations. When in truth, the only real limitation is a delusional sense of perfect.

In representing the patient and family perspective, Be the Change will strive for realistic excellence in strengthening relationships between patients, their families and medical providers, which will improve health care. Patients and their families are omniscient, living with medical experiences that are imperfect yet excellent in the way they teach us what is really important. It’s the catalyst that will lead us to a health care environment that is less frustrating and more respectful of each others human experience.

The morning of Michael’s funeral his middle school friend wrote on Caringbridge, “I never knew perfect until I knew Michael”. In heaven, Michael knows perfect, that’s where perfect lives. Here, we are simply trying to Be the Change.

Are you honest with you?

2010-10-20T09:31:00.010-05:00

Years ago, my daughter and I made a pact, promising to each other that we would always be honest. As a mother with one child in high school and the other in the hospital more than in junior high school, it was crucial. Often apart and surrounded by serious health care issues, my daughter needed to trust, without a doubt, that I was telling her the whole truth and vice versa.

By making that promise I discovered that in order to be honest with her, I had to be completely honest with myself first. Sounds simple enough until you’re in an extreme situation like the death of a child, which forces you to go deep inside your soul looking for answers to unimaginable questions. There, grace whispers, how honest are you with you?

At night, pretending to rest in a self created chair-bed next to Michael in his hospital bed, I would watch him sleep trying to contemplate life without him. It’s a scenario filled with heartbreaking thoughts and questions no parent should have to ponder. Even so, as Michael’s disease spun out of control, I knew earthly life without him wasn’t out of the realm of possibility.

That kind of reflection required a level of honesty that most of the time I avoided, which worked for a short time. Then our situation got to where I realized if I couldn’t be honest with the real truth held in my spirit, could I be honest with others, especially my daughter. Reluctantly, I let that soul searching question peel away layers of complicated emotions. Although an internal process it can also display itself externally in various ways while coping with the unknown. Despite my attempts to avoid it, then and now, I am consistently brought back to the same basic questions. Am I being honest with myself? Am I facing the truth, the whole truth and nothing but?

The patient and family perspective represented by Be the Change demands that same type of trust found in the pact I made with my daughter. It requires a commitment to the truth about our human and medical experiences, and the willingness to share them. Without a doubt it will include successes and failures. Respecting that commitment will lead us to a place where medical providers will feel safe to do the same because of new relationships, partnerships and value impacted by simple truth and honesty. Be the Change calls for monetary value to be given not only to experts with expansive titles, but also to patients and families with expertise schooled in another venue, which provided a unique title equivalent to any degree. In that type of fair financial exchange we will come to the table as patients, family members, and providers, elbow to elbow, as true equals in knowledge, insight and value.

Michael was very honest; sometimes in the wrong place and at the wrong time! Every Mother can understand what that's like. However, when he was being honest he challenged the rest of us to do the same, especially in the medical community. Be the Change keeps making progress by simply being honest, one new relationship and partnership at a time. In honor of Michael and all the ways he taught us to Be the Change.

October - National Breast Cancer Awareness Month

2010-10-15T08:00:00.003-05:00

Five years later, I’m still surprised when someone asks me about my breast cancer. It’s as if I need to pause for a moment and ask myself, did I really have breast cancer? In truth, compared to the grief and sadness I felt from Michael’s death, the cancer, surgeries and treatment weren’t that bad. Even with the SIOD prognosis, it was still unbelievable what happened to Michael. I think a part of me hopes to wake up one morning and find out it wasn’t real. I guess, the same could be true for my breast cancer.

Every cancer patient has a story. It leads them to a vast array of choices and decisions regarding treatment, both physical and emotional. For me, with my family history, having a bilateral mastectomy and chemotherapy was a must. Then a couple of surgeries after that insured the best possible outcome with the BRCA2 gene present in my DNA. The breast cancer was removed ASAP, the risk of other cancer addressed and I have been cancer free since 2005.

My decisions regarding cancer treatment didn’t come lightly. It included multiple medical consultations, lengthy conversations with breast cancer survivors, books, articles, internet research and countless hours of prayer, which led me to informed choices with spiritual guidance. My life story definitely dictated my choices but along with that was a spiritual triangle of grace. There I knew the choices I was making were right for me.

October is National Breast Cancer Awareness Month. I stand among thousands who are also surprised that they have breast cancer. I encourage you to offer them support, love and respect in the choices they make based on their life story. Assumptions and judgments, often made, are a naive mistake. Be the Change lends its support by representing the patient perspective in honor of every person living with breast cancer as a part of their story. Also, in memory of those whose story includes grief of a loved one who has died from breast cancer, Be the Change embraces you.

My breast cancer prognosis is simple. “And now these three remain: faith, hope, and love”, found in 1Corinthians 14:13. I choose to live my life by those three categories, refusing to be defined by any medical diagnosis. Find your way to be defined when you dare to Be the Change.

Eye-opening experience with The Minnesota Daily

2010-10-12T10:35:00.004-05:00

Imagine you’re a college student at the University of Minnesota. You take a few minutes away from studying to indulge in one of your favorite things - reading the Minnesota Daily campus newspaper. As you open the paper to continue a story from a front page article, you’re shocked to see a photo of your cousin and best friend. That’s exactly what happened to my nephew.

A few weeks ago, I was delighted to be contacted by Taylor Selcke, a writer for the The Minnesota Daily, who was interested in doing an article about orphan drug research. She found my blog and had questions about Michael, his rare disease and its effects on our family. As it turns out, my nephew wasn’t the only one who was shocked.

Even though Michael saw multiple doctors from the U of M who ultimately diagnosed him in 1999 Schimke-SIOD, I had no idea what orphan drug research was. I was surprised to find out that the Uof M has a Center for Orphan Drug Research and SIOD would be classified as an “orphan disease.”

Be the Change is in full support of any research, especially conducted in Minnesota, that can benefit any patient or family suffering from a rare disease. Thank you to Taylor Selcke for her contribution towards a heightened awareness of research for rare disease and the University’s Center for Orphan Drug Research. Since my family was unaware of these services available at the University of Minnesota, it’s another eye-opening experience demonstrating the extreme need for Be the Change. Click here to view Taylor’s article or see the full text pasted below.

Families look to ‘orphan drug’ development at U
Orphan diseases affect 25 million people in the United States
By Taylor Selcke

For Michael Zimanske, years of holidays and birthdays spent in hospitals began after a routine kindergarten check-up.
The doctor said he wasn’t growing like a normal 5-year-old, and full body X-rays revealed the abnormalities in his joints. It took two years for doctors to recognize the disease — Schimke Immunoosseous Dysplasia, distinguished by short stature, kidney disease and an overall weakened immune system.
The disease is estimated to affect one in every 1 million to 3 million people. It’s one of more than 6,000 "orphan" diseases in the United States. To be classified as an orphan disease, there must be fewer than 200,000 cases in the nation.
Orphan diseases affect 25 million people in the United States, according to Dr. Ramaiah Muthyala, an associate professor in the University of Minnesota College of Pharmacy.
And at the University’s Center for Orphan Drug Research, researchers are working on multiple new treatments.
"To have an orphan product, the condition must be rare and there must be some evidence that the drug will work for that condition," said Dr. James Cloyd, the director of the Center for Orphan Drug Research.
The Orphan Drug Act was passed in 1983, creating incentives for companies who may be hesitant to develop orphan drugs because of high costs.
According to Cloyd, more than 350 new drugs have been developed and approved by the FDA since the Orphan Drug Act of 1983.
To help companies obtain orphan-drug status, the University hosted a workshop with the U.S. Food and Drug Administration in August.
Minneapolis was chosen for the workshop because of the University’s Center for Orphan Drug Research, Cloyd said.
"This conference benefited companies who were intimidated by the FDA," he said. "It gave them a chance to sit face-to-face with an FDA staff member and get feedback immediately."
Cloyd said he hopes these workshops will accelerate the process of obtaining orphan drug status.
For Zimanske, there was not an orphan drug to lean on.
As he got closer to needing dialysis or a transplant for his kidneys, the Zimanskes moved Michael’s primary care to the University, just one of the many hospitals where they spent much of their time.
Michael Zimanske died just more than five years ago from a massive stroke. He was 13 years old.
For his mother, Theresa Zimanske of Lakeville, Minn., the experience brought enlightenment.
"When Michael was being treated, he really opened our eyes to the challenges young children face when they are diagnosed with a rare disease," said Zimanske.
Although from different parts of the U.S., Gina Gareau-Clark from Georgia can relate to the Zimanske family. It has been a year since Gareau-Clark discovered that her twin daughters, Julia and Maya, five years old, had mitochondrial encephalomyopathy, a disease that prevents the body from converting food into energy.
Her days are filled with multiple therapies, which the twins get at school and at home. It’s a constant struggle for balance, Gareau-Clark said.
"We want them to participate in therapies that would benefit them the most without robbing them of too much energy."
Julia and Maya need constant assistance to carry out activities many take for granted, like walking and talking.
"[Their symptoms] vary from day to day. Sometimes they go limp and lethargic because their body can’t produce enough energy," said Gareau-Clark.
Gareau-Clark doesn’t see a time when her daughters will be able to care for themselves — unless research and orphan drugs change that.
The orphan drug they now use is by no means a cure, she said, and it’s costly.
"It costs us $350 a month for the drugs Julia and Maya need. Over the course of the year, we have spent $10,000 in out-of-pocket expenses because insurance doesn’t cover it," Gareau-Clark said.
But Zimanske and Gareau-Clark remain hopeful that orphan drug research will provide better options.
"For now, all we can do is live day to day," said Gareau-Clark. "The heartbreak is always there. You appreciate your children so much more, and you want to hug them all of the time. Even though it can be daunting, be grateful for every moment and remember that they are here now."

Grateful

2010-10-04T16:18:00.011-05:00

A kind woman working in the kitchen at the Woodshed Gathering Place located inside Zuber’s Homestead Hotel asked, “What would you like made for breakfast tomorrow?” As we chatted for a few minutes about the breakfast choices, I felt so grateful that she made breakfast. Last week, I experienced that type of gratitude many times during a trip to the Amana Colonies in Iowa. It was the kind of trip where saying thank you hardly seemed adequate enough in expressing my gratitude.

We share a treasured friendship with a couple who got married three weeks prior to us. It’s a relationship that began by two young girls who worked together and became friends, then grew into a supportive bond between two couples that have known each other over twenty five years. As our 25th wedding anniversaries approached, our husband’s decided to plan an anniversary trip for us, which would involve a surprise destination. The mystery location was finally disclosed en-route last Monday, including the fact that mini surprises would be embedded into each day.

From that moment on, each place we visited and every person we talked to, my friend and I shared our surprise anniversary celebration story with them. As we shopped and toured the sights, we got acquainted with some of the locals. It was apparent that a close knit relationship exists in this small community through valued partnerships. Our husbands became celebrities as people learned about their surprise anniversary vacation ideas and how happy they have made their wives.

A few things I'm grateful for:

~The comfort of a beautiful hotel
~Waking up to home-made breakfast
~The sights and sounds of my childhood
~The beauty of farms and majestic wineries
~A picnic lunch at 1:00 in the afternoon during the week
~Laughing from morning until night
~Friendships that last forever
~A marriage still full of surprises

During our vacation, I had another privileged opportunity to see exactly what Be the Change believes and it revealed an unplanned surprise. By sharing our anniversary story and some of our various experiences, new thoughts and ideas were sparked in the minds of those we talked with. Gratitude born out of acts of love were demonstrated, not just in words, but in action. It became its own unique form of influence, which impacted others, including us. By it we were all changed.

I am sincerely grateful and again reminded of the great value in sharing our stories, which allows our human experiences to Be the Change.

Click here to view R.A.R.E Blog Grateful in MN

In sickness and in health

2010-09-22T15:33:00.022-05:00

Twenty five years ago I said, “I do” to my best friend on a rainy September Saturday. We vowed to each other, “from this day forward, for better or for worse, for richer or for poorer, in sickness and in health”. In those words we promised to stand by each other in marriage, no matter what, as husband and wife, the epitome of relationships.

Back in the day, many engaged couples preparing for married life together, selected tableware at Daytons. My fiancé and I went to Daytons but the hair salon instead, helping my Mom select a wig during her cancer treatment. In one way or another, our marriage has appeared secondary to illness, including the rare disease diagnosis of our son. Usually, I don’t share many of the events that make up our life story, assuming the majority of people will consider it impossible to believe.

Truth be told, it’s a story of two soul-mates who love each other deeply, unconditionally and faithfully. A relationship defined by a partnership that values respect, service and commitment. Mistakes have been made but because of them, we are better than we were the day before. We are richly blessed by family and friends who have celebrated with us and cried with us, in sickness and in health.

Now, twenty five years later, we more accurately understand the gravity of the words exchanged on our wedding day. We can’t predict what the future will hold but faithfully we can look forward to what lies ahead. Possibly another exciting twenty five years together, assured that no matter what comes, we can endure.

I do, continues to be spoken silently in daily acts of kindness. Honestly, the words I spoke in September 1985 are the same ones I would say today to the same man who's still my best friend. DZ, for as long as we both shall live, I promise to love, honor and cherish….and of course Be the Change.

Laughter and tears

2010-09-15T09:18:00.011-05:00

“I will have a regular coffee with a vanilla sugar-free shot” is what I said every Wednesday morning before meeting three wonderful women to share a morning cup of coffee. I looked forward to my time with “The Coffee Ladies” except for Tuesday nights. They often felt a bit short because of the early rise required the following morning. We met once a week at 5:30 a.m. for an hour or two, depending upon varied schedules and the topic of conversation.

At times, I questioned my ability to stay committed to that early hour. Yet, the pearls of wisdom and faithful visions I was given each week not only equipped me for the challenges I was facing but, removed any doubt as to my return the following week. My time with the coffee ladies began shortly after Michael went to heaven. Jessica was finishing high school and preparing for college. I was healing from cancer treatments and devastating grief, somewhat unaware of my desperate need for restoration, so the timing was perfect. In a circle of love around a small table, the importance and value of relationships was, once again, demonstrated to me.

It was not unusual for me to be laughing one minute and crying the next, all while sipping coffee, soaking in graceful insights and valuable truths. Many things spoken by the coffee ladies embrace me daily similar to the way those women did every Wednesday morning. However, one particular statement stands out in my mind. “It is laughter and tears all in one day”. Those words of wisdom dramatically changed the way I grieve the loss of my son.

At the beginning of my grief journey, I tried to compartmentalize my sadness, saving it for only certain times and places, which honestly, made it worse. The grief of loosing a child, attached to the necessity in moving forward without him, is experienced daily. It is impossible to put it into a tidy compartment, separating it from everyday activities. When I learned it’s doable to cry and laugh all in one day, sometimes all in one minute, it opened my heart’s capacity for joy. It taught me that joyful is different than happy. Joyful is a state of being, happy is merely a feeling. Even though I might have cried at one point in the day, I could still remain joyful and have a good rest of the day, despite feeling sad for awhile. Shedding some tears gave my grief an exit, which created new space for other things such as hope and gratitude.

Through laughter and tears, I display the depth of my love for Michael and my whole family. It also, gives others the chance to do the same. Typically, it will lead to a story that brings renewed life to a fading memory. The trusted relationship that developed among the coffee ladies, gave way to the sharing of life experiences and simple, yet profound, wisdom. Created and designed uniquely by a partnership that enhanced our human experiences.

Currently, meeting for coffee early Wednesday mornings doesn’t happen for the coffee ladies. However, the fruit from seeds planted by women changed through faithful discussions around a table, does. It’s the very heart and soul of Be the Change.

A human experience up close and personal

2010-09-10T09:16:00.012-05:00

It was late Monday afternoon February 2005, six months after his kidney transplant, when Michael was being admitted to the hospital with pneumonia. It started with a fever the night before. Michael begged me not to take him to the emergency room, even promising to keep a cool towel on his forehead in order to keep the temp down. He said he just wanted to sleep in his own bed that night. Considering he had a follow up appointment already scheduled at the University of Minnesota in the morning, I gave in to his request. That was the last night Michael slept in his bed on 250th street.

His mid morning appointment at the UofM dragged on for hours. We waited and waited for the lab results to confirm what I already knew. Michel had another infection and I could tell it was getting worse as the day wore on. His low grade temp remained steady the night before but now it was climbing. Definitely not the day our family had planned for that particular off school and work Monday. It was suppose to be a short appointment for Michael, lunch at our favorite Chinese restaurant, and then off to the American Cancer Society to pick out my wig. I was preparing myself for chemotherapy, which was the course of treatment following the bilateral mastectomy I just had done. Amidst everything, I was diagnosed with breast cancer in December 2004.

That gloomy Monday in February, we desperately needed nursing care that went beyond the usual admit check list. Not just for Michael, but for me too. After multiple frustrations with the original admit nurse, my husband sought help from another nurse he happened to locate at the nurse’s station. She listened with her heart as we explained our situation. We needed a private room that Michael could navigate with ease in his wheelchair as well as accommodate a cot for me to lie down on. Despite the drain tubes still in place from the mastectomy and pleas from my husband to go home to rest, there was no way I was leaving Michael. Instinctively I knew he was much sicker this time than we were willing to admit to ourselves. Plus, I had promised Michael, long ago, that I would never leave him and I wasn’t going to break that promise now.

The second admit nurse arranged a hospital room that had two beds in it, which allowed me to stay with Michael and take care myself too. I wasn’t able to lift Michael because of my mastectomy so she arranged a male nurse for Michael’s bathroom assistance which meant my husband could go home in the evening to be with our daughter. She became my partner in meeting Michael’s physical and emotional needs, those of our family unit and mine as his Mother and a cancer patient. Unexpectedly, that February hospitalization turned out to be Michael’s last. That second nurse gave me a priceless gift in the way she arranged for me to stay with Michael. Outside the box thinking and top notch medical skills, she displayed with excellence how to nurturethe human experience in a complicated medical scenario.

That exceptional second nurse is one of the many faces behind Be the Change, representing how one person can affect the human experience, completely altering how a patient and family cope with medical trauma. She understood our human need both physically and emotionally, which created a human experience I will never forget. It’s an experience that has often comforted me as I grieve, reaching far beyond the kindness extended in a hospital room.

Be the Change believes sharing stories such as that, allows them to make an impact on the medical community, which will influence the choices and decisions they make. We hope in sharing this story, another family won’t have to look for a second nurse to
Be the Change.

The human experience

2010-09-07T14:47:00.007-05:00

Clearly defining ways to enhance the human experience in health care is easily avoided. Mainly, because it involves an act of service that’s woven with many layers of human emotion, causing difficulty in knowing where each one stops and starts. Making attempts to explain what the human experience is can be daunting, and discussing it, challenging, because it tends to expose unrefined emotion.

Each of our unique, individual stories writes a different human experience based on the varying paths we walk in life. The human experience for a family involved in a short, one time hospital stay might be very different than the long, multiple hospital stays of a family involved in chronic or rare disease. Appearing to be different, there is a simple truth that is the same for both. Each experience demands a human element that requires mutual respect, understanding and partnership between all parties involved. Be the Change is anchored in that broad spectrum, regardless of how big or small the medical experience, devoted to patients and families seeking high quality health care as well as remaining intact as a family.

I was reminded just recently how difficult it is to integrate emotion with service. A medical provider must maintain a healthy balance between themselves and their work with patients and families. At the same time, they can’t lose sight of the human exchange, which is definitely the intricacy involved in providing the best possible outcome for everyone. A consistent presence and dialog between medical providers, patients and families outside of any medical crisis is how the patient perspective will define and protect the human experience, aiding medical providers in creating a healthy balance not just for themselves but for the patient and family too.

Concepts that speak into the human experience, going beyond mere words, are such things as making outpatient coordinated care a constant priority for every clinic or a daily commitment to consolidating inpatient blood draws for every medical provider. These conceptual ideas are frequently discussed and marketed but far too often don’t consistently match real, tangible action for the patient or even offered as a solution. These are a few of the insights and suggestions that come from personal experience and are a portion of a Be the Change presentation. Our real life experiences attached to medical expertise allows the human experience to impact change and becomes more action than words, providing an outcome we all desire.

Be the Change shows the medical community, my human self and the human qualities of a family that struggled from complicated dynamics of a rare disease. It is emotional, which makes it difficult to talk about, but makes it even more important in the attempt to keep it real, not just a diagnosis, displaying our everyday life experiences which have been altered and changed due to medical experiences. When we are willing to push through the fear of an emotional mess, we inch our way closer to a place where medical experiences are influenced by human experiences, aligned by both the provider and patient perspectives, giving patients and families a real chance in not becoming a statistic.

That combined medical and human experience will be centered by the best of the human heart and mind, giving those who suffered from a lack of humanness, a hero’s capability to Be the Change.

We love weddings

2010-09-02T19:34:00.013-05:00

My family absolutely loves a wedding. We love talking about weddings, planning events associated with weddings and of course, attending them. We are getting ready for a busy wedding season this fall, beginning with a wedding for my nephew and his beautiful bride.

To me, weddings are the epitome of love in the world. It creates a special place for those who are in love, to fall in love all over again. Equally, it lends a perfect opportunity for anyone desiring love, the chance meeting of the person in their dreams. Both scenarios offer a priceless gift to wedding guests that can not be contained in any gift bag.

One of my treasured wedding memories is from a family wedding held in February 2005. That special wedding turned out to be the last one we shared with our son Michael. The wedding was a grand event, not just for the bride and groom, but for Michael. Months of dialysis were over and a successful kidney transplant made him feel like the king of the ball. Guests at the wedding noticed his happiness as well as the numerous cans of Mountain Dew stacked on the table where he was playing cards with his cousins. His comment, “Thank you Auntie Mar for the kidney”, followed by another gulp of pop, made the day complete.

In his wheelchair, he danced the night away with a constant line of beautiful girls around him. For our family, it’s a circle of aunts, uncles and cousins occupying almost every inch of the dance floor, promising to bring out the dancing queen in each one of us. That particular February Saturday night was no exception.

Weddings are just one example of a complicated truth about love. It is absolutely wonderful but at the same time, it’s a risk. Nothing loved is without an element of risk. When a vow is made, either in a wedding ceremony or in your commitment to a child, an eternal bond is made. You and a part of the world are changed by it, making all the risk worth every minute of it.

Allowing me to speak about Be the Change to your group or organization involves some risk too. The risk lies in being impacted and changed by the stories of a boy named Michael who was willing to take risks, even in his wheelchair at a wedding dance. Courage moved him beyond the risk of limitations and discouragements, filling him with hope and possibility as well as everyone watching him.

I might need to brush up on my Cha-Cha Slide skills for the next wedding dance. Many would agree that’s a risk too. Whether you enjoy dancing or not, keep stepping towards the many ways you can Be the Change, and like Michael, don’t be afraid of taking a risk.

Vote 4 Hope

2010-09-01T10:27:00.006-05:00

The Global Genes Project Aims to Battle Rare Disease Through The ‘Vote4Hope’ Campaign and Pepsi Refresh Competition

This year Pepsi is giving away millions of dollars to fund good ideas that make the world a better place. We have a good idea that will dramatically help millions of children affected by rare disease, and we can win a grant that will allow us to fund this important effort! Fund Hope For Sick Kids – it’s as easy as a click of a button everyday in the month of Sept. Make A Difference – Vote Today!

Taking a drive

2010-08-31T10:32:00.007-05:00

Yesterday, I was driving to a Be the Change talk that was scheduled for a group of nursing students at the College of Saint Benedict, when I realized that I use to like to take a drive. I had forgotten that simple fact until I was driving along 94West. The sun was shining, I had my favorite CD playing, and all of a sudden, I remembered how therapeutic a solo drive can be. That recollection isn’t life altering, I admit, but isn’t it odd how in this almost fifty season of life, you recall something once enjoyed in your younger days. It appears as if it was held in storage while life events pushed it aside, just waiting for a re-entry.

Don’t get me wrong, I am still a big fan of “my driver”. A name my daughter fondly refers to her Dad who, very willingly, drives me around. He loves to drive, most often just because it gives him another opportunity to just check things out. As I drove alone on that wide stretch of highway, I was reminded of the uninterrupted time it gives to collect my thoughts, and introspect fully check out some of my own things.

August 30th was a big day, not just because of the awesome opportunity I had to share Be the Change with St. Ben’s nursing program, it was also the anniversary of Michael’s kidney transplant at the University of Minnesota. The unaccompanied drive gave me ample time to marvel in spirit about my sister, Marilyn, who gave us a tremendous gift this day six years ago. It’s a blessing that continues to speak to others. I was very proud and humbled to mention the transplant anniversary date in my talk yesterday, giving those students another powerful example of bold courage.

The tremendous beauty, and peace surrounding The College of Saint Benedict’s campus, helped me centered my thoughts on the drive home. I contemplated a comment my daughter made the day before, as we were discussing the drive to St. Ben’s. “Maybe you’re meant to take the drive alone tomorrow”, she said. That was absolutely true. Somewhere along the freeway I was reminded that the important things in your life are never forgotten. It is also true that we must take the opportunities to be alone, seek the quiet calm within, in order to initiate a recall. You will, no doubt, have time to check a few things out including time to Be the Change.

Packing up stuff

2010-08-27T11:48:00.005-05:00

What are you packing up this week?

While shopping the last couple of days, I saw lots of Mom’s with their college bound children picking out towels, sheets and comforters in preparation of the big day when it will all be packed up for the move. Without any permission, my mind was filled with questions that have no answers, still dare to be asked. What would Michael and I be shopping for? Would he be excited to move to college? Since we will never share this college bound ritual, I still find myself in need of packing up stuff.

I decided to pack up stuff that is not tangible but is still heavy to carry. One thing I am packing up is the intricacies about real job experience that doesn’t have a category on a resume. Work experience should include an additional section called life experience, allowing unique life occurrences to add value to a resume, making any mother like me, one of the best investments a company would make.

It’s easy to fantasize about what it would have been like to pursue a career over the last nineteen plus years other than expanding my medical experience portfolio. I have few regrets about that, but what I find frustrating is that having M-O-M be the only initials that appropriately follow my name, aren’t sometimes enough in a society that puts greater value to other, more expansive, titles. Definitely sounds like something I better pack up.

Another thing I am packing up is the confusion that surrounds this season of life. It feels like the things I struggled with years ago as a new mother are some of the very things I am once again struggling with now; they just look different on the outside. Familiarity, connections, routine changes, just to name a few. All of these formative contributors to life, often called something else, would like to steal the confidence that I gained and felt for many years in my full time job as a mother. Closing the box on these feelings will hopefully prevent that from happening any further.

In packing up some stuff, I am choosing to not allow any of my feelings to dictate or diminish all the exciting things that are about to happen this fall. August was certainly the same for many years. Each day filled with a long list of preparations for the new school year. Without even realizing it, I prepared myself as well as my children for a new start each fall. That's still possible even if I didn’t buy any new notebooks on sale this week.

Maybe my routine hasn’t changed as much as my mind would like to think. Packing up stuff, tangible or not, is hard work but when it’s done, a new space opens to Be the Change your heart desires.

Patients are the best consultants

2010-08-23T21:01:00.001-05:00

I often remark to the doctors and nurses I encounter that the best consultants or speakers they will ever hire are the patients and families in their waiting rooms.

Patients and their families contain valuable information about the current day-to-day processes used by clinics and hospitals, which is necessary to improve health care quality and safety. Based on what you hear on the news, it’s no surprise that our health care system is in desperate need of some changes. Patient perspective adds value and expertise.

We do not need to reinvent the wheel. We need to take what we know works from real patient and family experiences and allow that to impact our health care system. We can press forward and allow the patient perspective to effectively improve healthcare. Corporate management often makes changes that look and sound effective but are out of touch with what is really required to make a change and provide the best possible outcome for patients and their families, as well as management. We have to get to the point where comment cards in clinics and hospitals are not just a passive communication tool. They should be agenda items on the weekly staff meeting, where it does affect change, leading towards re-education and daily practice improvements.

We, as patients and families, are the missing link in improving health care. Our real life medical experiences and the lessons we learned from them are more valuable than the tips and guidelines highly paid consultants use to suggest improvements to health care systems. The critical difference is when guidelines are supported by the patient perspective, they become infused with a powerful influence that most corporate consultants lack. When the patient perspective partners with the medical perspective, it produces an environment where the human experience and medical experience are one.

Patients and families have suggestions and input on current medical processes because they have already piloted and tested these processes firsthand. Patients and their families live on both sides of health care, in a place where the view is from both sides. The scope is wide, encompassing a life at home that is trying to connect to an unfamiliar way of life in health care. The unique view of patients and families is valuable because they are constantly trying to reconnect home life and medical life, providing an insight unlike any other. With a stronger, more influential patient perspective present in health care education and training, we will easily obtain what has been missing in health care improvements in the past.

Be the Change wants to partner with nurses, doctors, clinics, hospitals, college programs, and any company or organization that believes in putting a new value to the patient perspective. That desire will be the beginning to the many ways each one of us can Be the Change. One person has a dream and when others believe in it, everyone is changed.

Holding down a job

2010-08-20T09:13:00.034-05:00

We experienced many changes in our life because of Michael’s progressive rare disease, SIOD. As Michael’s physical changes started occurring, accommodating them became a full time job. It became clear to me that not only did we need to make changes in our home and in our transportation, but in my employment as well in order to support Michael’s rapidly changing physical and emotional needs. Quite honestly, so many changes occurred during those years that it would be impossible to list them all. One thing I knew for sure, despite mounting uncertainty, was that I had to accept constant change as a way of life in order to keep some kind of balanced flow to my family’s life.

One morning I was explaining to Michael that the following week I was going to start another new job that would allow me to be at home more. Seated in his wheelchair, he looked up at me and said, “Mom, are you having trouble holding down a job?” You can about imagine what thoughts were running through my head after that statement! All I could do was laugh, hug him and reassure him that was definitely not the case. The real truth- I was changing jobs again to be more readily available to him as his body was failing and his day to day life was becoming more difficult.

Many parents are packing up their sons and daughters this week recounting many of those same types of decisions made with deep parental love. Choices that have required great sacrifice yet were made somewhat effortless simply because parents love their children and want to provide an ease to certain areas of their life.

Lots of these parents are now entering into a new season of life, often referred to as “the empty nest”. What appears to be a new season for mom and dad is really just going back to where they began. Will they remember what it was like? They have the opportunity, maybe for the first time in almost eighteen years, to apply a fresh new focus to their life. Inadvertently, lending confidence to the many changes occurring for their children, sparking renewal in everyone.

As a mother, it seems as if it was easier to make changes that were centered on a need for one of my children. Now it is much more difficult to make when it is centered on me. Walking on the bumpy road of grief I am learning that by placing a new value on the ways I take care of myself, I teach others to do the same. It's a daily search for a healthy balance between meeting the needs of others and my own, completely surrounded by grace. Seeking that balance helps me wear the changes I am experiencing in my own type of empty nest season. Addressing my needs first allows me to give my best self to those around me, equipping each of us with what is required to keep moving forward even though changes have occurred. It’s a balanced order I admit is not easy to change as a mother, but is necessary especially as children leave the nest.

In the past, I might have had some trouble holding down a job in Michael's view. But I can honestly say, it was worth it, any mother would. My family often says that we don’t like change, but now we say, Be the Change.

RDF Interview

2010-08-17T09:07:00.005-05:00

Last week I was interviewed by a research assistant from the Rare Disease Foundation located in Vancouver, Canada. We talked about our journey as a family with Michael and his rare disease, SIOD, including the silent complications that are heavy burdens but often only recognized by families with chronic illness. All of which makes the dynamics of family life coupled with illness even more difficult. There were questions about my marriage to the same man for almost twenty five years despite tragic incidents. She asked about maintaining a family unit, as well as the underlying affects on siblings and extended family. She was surprised to hear about the multiple levels of support we had during Michael’s illness, his death and still have in our life. With most of the families she has talked to that is typically not the case, once again making our situation unique.

The interview gave me another opportunity to boast about our family and friends. We could not have done what we needed to do for Michael and for Jessica without the loving hands and feet of faithful family and friends. Their commitment to us was unfailing, sustaining us during the unthinkable. Often we ask ourselves, how is it possible to repay so many extreme acts of love and kindness. Asking that question over and over again revealed to us the importance of receiving with as much grace as giving. Not an easy task for two people who like to have the scales of give and take evenly balanced. During those years of exceptional generosity in almost every area of our life, we realized it was in our receiving that our family and friends became the answer to our prayers. It was purposeful service to a family with chronic illness that they themselves didn’t own but yet had a desire to share it with us and their beloved, Michael.

A wise woman once gave me this quote by W. Somerset Maugham, “We are not the same persons this year as last; nor are those we love. It is a happy chance if we, changing, continue to love a changed person.” For years now, I have carried that quote with me because loving a changed person is a true blessing in our life. Michael’s rare disease changed us, altering our course. Inevitably, changing the way we see things. The countless ways family and friends continue to love us unconditionally and unselfishly while we are changing, just as they did from the beginning of our journey, is yet another level of kindness and support being offered to us. That love, on its own, has changed us. People serving others in varying degrees, with no expectation of repayment in any way, is the true meaning of love with the word itself not even spoke.

The interview ended with me saying, “The patient perspective needs a face and a voice.” The changed person in me will be that, representing Michael’s courageous spirit in our efforts. Be the Change represents patients partnering with the medical community finding new ways to provide honest input, giving a voice to every child and family that faces what we faced. Be the Change will stand in the gap for families that don’t have the circle of support that we have.

Service is the center of Be the Change with our family and friends as the models. They represent the high quality relationships we need in health care. I trust and believe that powerful experiences will continue to flow from this network of extraordinary family and friends. Hopefully, our gratefulness for what was and what is will always be reflected in our new journey where, together, we will Be the Change.

Michael Zimanske Golf Tournament

2010-08-12T09:59:00.002-05:00

Monday August 16, 2010 Monticello Country Club will host the 4th annual Michael Zimanske Golf Tournament sponsored by Roll With It. This fundraising event is very special to the Zimanske family as is everyone involved with Roll With It. Last years event raised $7100 which goes directly to supporting sports and recreation activities for children and adults with physical disabilities.

When Michael was about nine years old he started loosing his ability to walk because of the rare disease SIOD. During the time he was transitioning into a wheelchair, we started looking into what kind of adaptive sports were available for him. Even though he was loosing the ability to walk, he wasn’t willing to give up his love for competitive sports. The question then became; how can my child, with special needs, play sports now? Through a phone call to the Courage Center we found out about a wheelchair basketball team forming in the south metro called the MN Royals. With them we experienced wheelchair basketball for the first time and a whole new world opened up. Soon after, we met Heidi Schwichtenberg and her family. All of these organizations, including Roll With It, taught us that there is never a reason why a child with special needs can’t participate in sports.

Heidi’s love and commitment to children and adults with disabilities is absolutely amazing. It is consistently displayed in her efforts with Roll With It. Heidi’s basketball ability on the court and Michael’s need for speed in any sport made them instant friends. Heidi invited Michael to promote Roll With It events with her, sparking a unique relationship beyond the court. Sharing a love for basketball and the MN Timberwolves, they even attended some games together because of Heidi’s kindness and generosity. Heidi’s involvement with the Courage Center wheelchair basketball and Michael as a player for the MN Royals wheelchair basketball team, gave them many opportunities to also meet on the court.

If you have never attended a wheelchair basketball game or any adapted sporting event I encourage you to do so. I assure you that once you attend an adaptive game you will never be the same again. These children and adults are incredible, exhibiting not just outstanding athletic abilities, but a sense of pride and commitment that it is unlike anything I have ever seen before. When you give some thought to the challenges they face in everyday life, including recreational activity, it makes you appreciate their abilities even more. It might appear that a wheelchair athlete weaves without effort on the basketball court, until you see their hands bleeding at the end of the game. That’s only one of the many valuable lessons displayed in these types of adapted sports. It promises to alter your perspective as well as the way you view any sporting event after that.

On behalf of Roll With It, the Zimanske family would like to invite you to participate in the 4th annual Michael Zimanske Golf Tournament on Monday August 16, 2010. I promise that any amount of time or money you give to this worthy cause will be put to very, very good use. Make sure to check out the Roll With It website and see the extraordinary things that are happening in adaptive sports.

People such as Heidi and her family along with all the athletes involved with Roll With It have changed my life. They are real hero’s which inspire me to be better and do better just because I know them. The Zimanske family is extremely grateful to Roll With It in honoring Michael’s memory by organizing this golf tournament. It allows his competitive spirit to live among us, challenging more people to Be the Change.

Mother of a Princess

2010-08-09T17:24:00.024-05:00

Surely every mother would agree, that at one time or another, their children believed they were royalty therefore excluding them from the mundane daily tasks and responsibilities required of a busy home. However, in my situation it’s me that believes I am the mother of not only a prince but a princess.

Being the mother of a child with special needs automatically places you in a category all its own. Taking that one step further, puts the focus on the siblings of a child with special needs. I have witnessed extreme acts of kindness simply by walking in the arena of special needs children and their siblings. At the beginning of our journey with Michael’s special needs I found myself staring at children with special needs as they interacted with their siblings. My heart was heavy just watching that scenario and thinking that would soon be us. But now, I stand in awe of siblings caring for their brothers or sisters with special needs. It humbles me in ways I can hardly describe. The sibling relationship is unique anyway but when special needs are involved, that relationship goes to another level of love and compassion which is exceptional.

Currently in my home lives a princess, my daughter Jessica. She quietly yet bravely walks out the grief and sadness she owns because her brother died from a horrible disease. I can see how the years of loving and caring for him has shaped her life. I am reminded of something my parish priest shared with me when Jessica was six months old as my Mom was dying from cancer. He said that at some point I would look back at the illness and death experiences I shared with my Mom as a blessing.

From this vantage point, I can honestly say that he was absolutely right. I am grateful for the wisdom he shared with me that day and the courage he displayed by speaking the truth, even if I wasn’t able to completely understand it at the time. A seed was planted by those simple words of truth and was cultivated in my journey through life. I was blessed twenty two years ago by the wisdom of my pastor and now I am blessed again by the opportunity to pass on that truth to my daughter.

When we choose to walk through the darkness of illness and death it gives way to a resurrection that in part, is only possible because of the suffering and sacrifice you personally experience. It makes me sad thinking about what Jessica physically, emotionally and visually had to experience with Michael. But in faith, I have come to realize some of that sadness is actually my limited worldly view of what is a blessing in disguise.

Many with royal qualities live among us, especially in the world of special medical needs. In the role of parent it’s important that we allow our children to experience both the good and bad in life even though it is difficult to let it become a part of their reality. What we might consider to be a bad experience could actually turn out to be a divine experience with a flow of blessings straight from the King of all prince and princess.

I consider being the Mother of both a prince and a princess one of my most profound blessings. Because of the princess I found the courage to Be the Change.

The Patient Perspective

2010-08-06T10:32:00.003-05:00

Can we really reshape the relationship between patients, their families and health care providers and improve the quality of health care? My quick and simple answer is definitely, yes.

I sincerely believe that we as patients and families of patients hold the key to a vault of valuable information that will not only improve health care relationships but also increase patient safety and be done in an affordable way. We need to rid ourselves of complicated processes that only lead to drawn out meetings, redefined mission statements and overflowing recycle bins.

The future of quality health care lies in learning how to take the patients perspective, which has been defined by hard earned experiences, and line them up with the expertise of medical providers. Integrating these two vials of wisdom, placing them side by side, creates the power behind real change. This has the capacity to form a true partnership where both the patient and provider agenda is served and valued.

Be the Change can pave a new road to better health care. It is possible to strengthen the relationship that currently exists between patients, families and medical providers. My family’s health care experience especially in my son Michael’s rare disease can often be more valuable than any degree or certification. Embracing that truth will be the driving force behind redefining relationships between patients, families and medical providers.

It’s no secret that the way to strengthen a relationship is to improve the methods in which you communicate. For instance, patients and their families are constantly frustrated in finding fair and consistent ways to communicate information between health care providers and patients. It should not be the exception but the norm to feel both physically and emotionally cared for by the way medical providers communicate with us. This feeling is achieved in a number of ways, but establishing a reasonable length of time a patient waits for information would be a good start. When a medical provider adheres to the established guidelines, the patient will naturally learn to trust the process. That alone will increase the outcome of the medical experience, strengthen the patient/provider relationship and ultimately shape a more human experience.

When I speak on behalf of patients and families experiences for Be the Change, I talk about the ways a patient perspective can impact health care. The next logical step is to incorporate a patient’s perspective and wisdom into existing health care manuals. The insights gleaned from a patient’s own experiences, coupled with clinical wisdom, will provide a profound teachable component on the value of the patient perspective. We will maintain the value in the current clinical logic, making it even more influential because of the enhanced patient perspective connection.

This is just the beginning of how the patient perspective can impact the future of health care which allows everyone to
Be the Change we all desire.

Nineteen years later......

2010-08-02T14:49:00.020-05:00

I keep thinking about how impossible it seems that it has been nineteen years since my son Michael was born. But when I see my nieces and nephews with babies of their own I am quickly reminded of just how fast time rushes by. We were up north this past weekend enjoying a fun time with family. Now it’s my nieces and nephews turn to talk about their birth experiences, the latest and greatest trends in baby equipment as well as show us "older mothers" what is the correct way to lay down a sleeping baby.

Suddenly, we aren't the only ones going to bed early due to complete exhaustion from running around with kids. When did my nieces and nephews inherit what I considered to be my life for so many years only to find myself the new generation of Aunties? When did the generational gap narrow and completely shift over?

So nineteen years later, I realize......
I carry a cell phone everywhere
I text every now and then LOL
I get more emails then phone calls
I get up early because I can’t sleep past 6am
I can’t drink pop past 8pm without a restless nights sleep
I'm even more thankful for my parents, sisters, brothers
and good friends
I get teary watching my nieces/nephews grow into young adults
I am profoundly grateful to be a mother
I am still in awe of my daughter Jessica
I wonder how naughty Michael would be at this age
I know that at age 19 Michael would have more than likely looked just like the handsome guy I knew back in 1979 – his Dad

Nineteen years later, I can humbly say I walk on a path of blessings. That truth confidently allows all sorts of changes to take me to where I was created to Be the Change. I pray that nineteen years from now people will say that I put it all out there, laid it all on the line, and that Be the Change is a concept no one can be without.

Happy Birthday Michael!

2010-07-29T08:23:00.015-05:00

Michael’s 19th birthday is this Sunday, August 1st. I ask myself, as each parent does every year on their child’s birthday, “Where does the time go?” Yet for me that question takes on altered meaning when some days it’s as if I can actually hear the minutes ticking away without my fun-loving Michael.

Ever since Michael went to heaven in 2005, I haven't planned an August birthday party. But with strength greater than my own, I still choose to celebrate one of the happiest days of my life; the day Michael was born.

So come with me now down memory lane.....

It was the usual heat of summer and I was on my fourth week of bed rest with Michael tucked safely inside of me. Jessica could finally take a break from her daily announcement to who ever was in ear shot of “Mom’s throwing up again”. That daily ritual was now being replaced by very high blood pressure giving way to total bed rest, joining the previous condition of Placenta Previa which was diagnosed early on in my pregnancy. You can about imagine how much fun I was having with all that by the eight month of my summer pregnancy! Not to mention the very cute three year old blonde toddler girl that was also looking for her own summer of fun. None the less I loved being a Mother and the idea of another baby joining our family in spite of this kind of pregnancy was still exciting. I absolutely adore babies and everything about them.

It was suppose to be a typical follow up OB appointment on August 1, 1991 which in my case included a repeat ultrasound. It was the same type of appointment I had been having the last four weeks since the bed rest began. My husband had been coming with me to the other appointments but this week I insisted that I was just fine going myself. To make a very long story short, my appointment on August 1st did not go the way I expected and it definitely took us all by surprise. Early that afternoon, a little baby boy named Michael was born emergency C-section at Fairview Ridges Hospital in Burnsville after complications were found during the ultrasound that morning.

Michael was small but perfect complete with ten fingers and ten toes. Even on day one he stunned the emergency team of doctors on stand-by who were anticipating a newborn transfer to Children’s Hospital in Minneapolis. Michael was doing fine and a transfer was never needed. That day was the first time we met our wonderful pediatrician, Dr Baker. Years later he admitted to me that Michael was one of the first patients he saw as a new doctor on call that day.

It was the beginning of a life for our family that would change us forever. I see now all the seeds that were planted in that birth experience, gracefully preparing us for what lied ahead. Once again I was humbled and blessed beyond the capacity of my earthly imagination. I thought I was going to teach my son everything he needed to know about life but instead he taught me.

Happy Birthday Michael!! Until we meet again one day I will continue what you started; Be the Change.

What do you do?

2010-07-26T14:21:00.016-05:00

It seems as if I have been asked the question, "What do you do?" a lot lately.

Therefore, in my blog today, I want to more clearly define what I hope to do through Be the Change. Who knows, might even be helpful for myself!

In my efforts with Be the Change, I want to identify simple yet effective ways to reshape and strengthen the relationship between patient, family and medical providers. By it, creating a more real and honest exchange of information, with the patient at the center, improving the way health care is received and delivered everyday. I believe this is possible by making patient perspective additions to education, training and day to day operations which involve all medical staff from housekeeping to CEO.

This can be accomplished in a number of ways, but I think it begins with our own patient and family health care experiences. These valuable, hard-earned lessons gleaned from personal interactions with health care providers, are the heart of what is considered the patient perspective and should be integrated into health care curriculum and processes. It then has the ability to affect how health care providers are currently being taught to care for patients and family’s, which in my opinion is far too clinical.

Be the Change wants to go beyond just talking about being the change. The last few months I have seen the importance of Be the Change talks and presentations and consider them to be a very valuable asset. However, I desire to make a long lasting change in the medical community regarding the way patients, family’s and providers communicate. I have come to realize that the value of the patient perspective needs to be in print in addition to a verbal presence in order to accomplish that long lasting affect.

Through Be the Change and the patient perspective, the human experience will hold equal value to the medical experience. The whole family will be cared for in the way a patient and provider communicate. Patient and provider will hold equal weight in every choice and decision that is made from small decisions such as appointment times to larger ones like surgical options. Be the Change looks forward to the day when a patient knows ALL of the choices that are available in any given situation and not just some times, but every time. ALL the variables will be laid out for an informed decision to be made with patient and provider working together as partners, each bringing their own unique experiences and wisdom into the decision. That is where the best possible outcome will be achieved.

Wow! Be the Change has lots of work to do.

A prompt response please

2010-07-22T12:35:00.009-05:00

I was reminded this week of the extreme importance of a prompt response regarding test results and/or a call from a nurse or doctor. Is it too much to ask, especially in this day and age of immediate response technology, that a patient wait more than 24 hours for health information, critical or not?

We as patients need to be direct and crystal clear with our medical providers as to what they mean when they say “I will get back to you”. Does that mean this afternoon, tomorrow, the end of the week or sad to say in some cases, when they get back from vacation? I completely support any medical providers attempt to get adequate rest and relaxation which might include a vacation. We want them to be at their optimum, but not at the expense of patients waiting for a return call wondering about important medical information.

Respect of a medical provider’s time is essential since they have an enormous job to perform. However respect of patient’s time is just as essential. Both roles have enormity to them requiring mutual respect that flows both ways. I am more than willing to respect my nurse and doctor and the time it takes to do their job. However, I am simply asking them to respect me back and the fact that I too perform an important job in my life. We need to come to a place of mutual understanding with regards to the delivery of health care information.

Allow me to give you some hard earned tips for the next time you might be waiting for some information from a nurse or doctor and someone says, “We will get back to you or someone will get back to you”.

-Confirm if the information will be given by a phone call or a letter
-Confirm who will be calling you back and will it be the nurse or the doctor
-Confirm the exact date and approximate time you can expect a call back
-Confirm if the person in charge of your information will be out of the office the next few days and if so will you have to wait for your information while they are out
-Clarify your expectations with your provider and if they can’t meet them ask to be referred to someone who can meet your expectations

It is important to be kind and respectful in your conversation. Make every attempt to keep your voice calm as you are communicating honestly about what you expect to happen. Don’t be afraid to display your humanness in your attempt to obtain the best possible outcome. In my experiences with nurses and doctors it was when I was willing to share a human part of myself that it allowed them to do the same. In being clear and direct about what I considered necessary in a medical as well as a human relationship with my medical providers, I was then able to be not only a patient but also a mother, a wife, etc. The opportunity for a human experience inside the medical one was present allowing both of us, patient and provider, to serve and stay committed to each of our agendas. Through that type of relationship we will raise the bar, improving the quality of health care received and delivered.

It's true that most often we can’t change what happens to us, but we can Be the Change while it’s happening.

My summer vacation

2010-07-19T15:27:00.019-05:00

My family is rooted in tradition and our summer vacation is no different.
For fifteen years we have traveled up north for a week of summer fun at a lake side cabin with my brother and his family. For thirteen of those years we went to the same Northern Minnesota lodge, enjoying seven glorious days of fishing, lounging on the beach and starlit campfires.

After Michael went to heaven in 2005 our summer vacation was definitely altered. Even though we continued to go to our same vacation spot, we all felt his absence. The black tire tube used for floating in the water or just sitting on the beach hasn’t been used since. Afternoon campfires even if it was sunny and ninety degrees out, don’t happen any more. No one hears “are you done yet” as Michael waited in the bedroom closet for the girls to change clothes or “why do I have to go to bed earlier than the girls” when his bedtime was before theirs. Those are simply our memories now and a few of the many stories we tell year after year.

The kids were quite the foursome. It was Michael and the girls, one of them his sister, the other two his cousins. Some of their favorites were watching Price is Right in the morning, hanging out all afternoon on the beach, and playing arcade games in the lodge, just to name a few. It was obvious that Michael thought he was the king of summer vacation and the girls were his servants, and in more ways than one, he was.

Two years ago we decided it was time for a change. Much of our life without Michael had to change in order for us to move forward, summer vacation included. We found a new vacation spot for us and all of our memories with Michael. Now, we still pack fishing poles, lawn chairs and enough food to feed a small army, but we also pack a picture of Michael that is placed lovingly in the cabin kitchen where he can still reside as king of our hearts.

Summer vacation 2010 has just come to an end and more great summer vacation memories were added to the collection. Thoughts of beautiful butterflies, walleye fishing, sitting on the beach with my peeps and singing around the camp fire keeps me going this cloudy Monday afternoon.

The importance of and value in relationships is without a doubt, displayed during this week of summer vacation. Somewhere I read that change challenges us to new depths of faith, hope and love. I have experienced those new depths in monumental ways in my journey with Michael but in many other ways too. For example, making the decision to change our vacation spot of thirteen years didn't come easy, but through a loving and respectful relationship with my brother and his family, we were able to remain faithful and hopeful while making the change. Of course some things are not the same but new and wonderful changes have occurred.

In life, even on vacation, we are all challenged in some way to
Be the Change.

Going to a parade

2010-07-08T17:11:00.015-05:00

My Fourth of July celebration is rarely complete without a parade, and this year was no exception. The plan was to join my sister and her family for some Cannon Falls parade fun. We were able to enjoy it in spite of the rain, which honestly didn’t seem to affect any parade goers, including myself. The streets were lined with lots of smiling, happy people. The colorful sea of umbrellas and canopies added a delightful new feature to the festivities. As expected, children were seated close to the curbs totally unaffected by the clouds and rain, focusing only on the hopeful anticipation of filling their now empty bags with candy from the parade participants.

The police sirens and the sound of the timed steps of the VFW drill team made me hope we were close to locating my sister. For a second, I thought we might actually be in this parade since the parade sounds were getting closer and closer. I must admit that being in a parade is something I always wanted to do. Naturally, my dream involved being some sort of queen, complete with crown and white gloves, doing the queen wave on the most beautiful float in the parade. Yet in reality, I would be just as happy sitting on the back of an old 1984 pickup truck with a big sign that says, “Be the Change.” I chuckle just thinking about the possibility of handing out candy to excited kids, doing a wave all my own and watching everyone’s face as they turn to the person next to them saying, “What is Be the Change?”

There is nothing quite like a parade. From beginning to end, the sights and sounds along the route take you to a place of sensory euphoria from the music of the marching bands, the click-clack of horses, the loud sirens of various fire engines and the mini-cars that screech as they dart in and out. It provides a thrill and excitement for the young, as well as the young at heart. If you haven’t been to a parade yet this year or haven’t gone to one in many years, let me encourage you to go, especially if you can share the parade experience with young kids. Their enthusiasm at a parade is absolutely contagious -sure to spark some of your own.

Who knows, one day you might see me in a parade with that Be the Change sign. I hope that because of this blog, you will be able to tell the person sitting next to you what Be the Change means. More than likely I won’t be wearing a crown though, not visibly anyway, but I will for sure throw you some candy!

Voting for a new relationship

2010-07-05T11:27:00.013-05:00

After hearing the news about the tentative agreement reached last week between MN nurses and hospitals, I must admit that I breathed a sigh of relief. The vision of striking nurses in our metro area isn’t something I wanted to think about. Not only for the nurses who are involved, but for the patients and their family’s who would no doubt be affected by it. I am definitely supportive of what MN nurses have been fighting for, not just now but for many years prior to this. It lends towards everyone’s concerns about the quality and safety of patient care as well as patient/nurse ratio. Since Be the Change desires to develop a new and improved relationship and partnership with hospitals, clinics and nurses, I believe this is the perfect time to do just that and in doing so, many of those concerns would be lessened.

In my opinion, the future of patient care must include an increased involvement of the patient perspective especially in corporate decisions being made. Be the Change wants to pave that new way where the opinions and ideas of patients and their families are just as valued as any highly paid consulting firm. I have often told the doctors and nurses of the clinics and hospitals we have been involved with, that their most qualified consultants are the patients and families sitting in their waiting rooms. They are the ones who experience daily, the patient quality, safety and ratio’s that we hear so much of on the news.

Time and time again we are being told of one horror story after another about safety issues and less than quality care. We hear stories about diagnosis information not being communicated timely and/or accurately. One frustrating story after the next about patients in the hospital who are left with out any care regardless of the many times they press the call button. These along with hundreds of others are examples of what Be the Change wants to impact with the hope of changing future stories. The patient perspective can be a powerful companion to the way nurses, doctors, clinic staff and hospital staff move forward in complete solidarity with a renewed passion for exceptional patient care. The possibilities are endless when we consider using patient’s experiences and weaving them into the commitment of the medical community we place our trust in during our most vulnerable situations. The results of this type of patient-family impact will be enormous. It will automatically increase the human experience, improve the medical experience and here’s the bonus; it can be done financially responsibly.

Be the Change believes the time for a real change is here and now and the MN nurses vote tomorrow on the tentative agreement is just the beginning. Through the efforts of Be the Change, we can develop a new relationship between patients and providers where the patient-family perspective is not just coffee conversation between family and friends. Instead it will become a respected and valued partnership complete with board room support and influence, giving absolutely everyone from patient to CEO the opportunity to Be the Change.

Fourth of July Picnic

2010-07-01T11:00:00.047-05:00

Every Fourth of July was the same when I was growing up. We had a big family reunion picnic each year at a campground on Fish Lake in Southern MN. It was formerly known as Camp-A-Huca, back in the good ole days. Some of my fondest memories are from that day.

Picnic tables lined up one after another filled with various salads made to perfection, each family's famous bars and cakes as well as lemonade in glass jars. The smell of hot dogs (or you can call them “hod-dogs” like we do) on a black cast iron grill stuck into the ground. The looks of the grill-master, my Aunt Lillian, as she ignored the continuous screams of “are they done yet?” The anticipation of all the kids as we waited and waited for the perfect swimming time, following the “one hour rule” after you eat, of course. Everyone wondering, who got a new nose plug this year from Ben Franklin’s store? I can still remember, like it was yesterday, my aunts sitting on a concrete divider near the water, claiming to watch us swim. Those memories are sealed in my heart, retrieving them to play over and over again in my mind every Fourth of July. They are still some of the best stories told when my family gets together.

It is yet another example of the importance of family and relationships and the many ways they teach you about life. At the time I thought we were simply having a picnic and going swimming along with the traditional July 4th sun burn that was so bad you thought you might need the industrial size of Noxema (maybe that was just me). When in reality it was more than just a family picnic. It was an opportunity to bond with each other, to share your family's ups and downs, to lend support, to offer advice, to laugh, and just have FUN. Powerful lessons have definitely come from those simple yet great pleasures.

All of these things are components of Be the Change. We will not make changes alone. Real changes will be made from developing relationships in which we share our experiences, offer support and give advice. I am profoundly grateful to all of my family that has taught me the value of a loving, respectful relationship by actually demonstrating it themselves. Be the Change is rooted in those same core values. Be the Change believes that anything is possible when we join forces, respecting the human experience and allowing that to be the foundation we stand on. Including recognizing the truth and wisdom from our past and pulling it into our present.

There are many new and exciting things happening with Be the Change which, especially on Independence Day, makes me aware of how extremely blessed I am. I have the freedom to speak and write about the changes I think are necessary to improve health care. It is a freedom which comes from many who have sacrificed and suffered to provide it. The experiences of people who inspire Be the Change have many similarities to those who fight for freedom. Courage is the first one that comes to mind. Each are demonstrated differently, but the powerful impact of quality relationships and respectful partnerships is the center. It's what we freely experience every Fourth of July and in both great things are possible. Learning, each in our own way, to Be the Change.

So, I got my nose plug on, I promise to wait an hour before I go swimming and I sincerely hope that you have the chance to be with your family this Fourth of July. Try a family picnic, making some memories like mine from Camp-A-Huca. You might want to buy some Noxema though, just in case.

Dance in the rain

2010-06-28T15:44:00.008-05:00

You never know what is going to happen. That statement has the ability to hold us captive by fear or you can allow those words to make everyday some kind of new possibility. When you live with critical illness or someone who has a rare disease you learn how to live life more fully, cherishing minutes rather than days, because everything becomes more fragile. I will admit that way of living was a big change for me since it is my tendency to be very calculated in the way I handle my life. However, learning “how to dance in the rain” offers some of life’s best unexpected opportunities. That was certainly the case for me as well as a newly married couple last Saturday night.

A relative of mine got married mid Saturday afternoon. Months of planning and anticipation gave way to a beautiful ceremony with a reception, dinner and dance that followed. Now if you know my family you already know that we love a good wedding dance complete with a couple polka's. The dance was in full swing when the weather quickly changed the evening plans. A tornado warning in the area forced the bride and groom and their guests to seek safety in the undecorated lower level of the country club.

After about an hour of sitting on the golf carts stored in the lower level, we were allowed back upstairs to continue the wedding celebration. Despite the pounding rain outside it was evident the joyful spirit of the crowd had not been dampened inside. But just as people were getting settled the power went out, leaving only the dim glow of the Exit signs and the dramatic strikes of the lightening storm outside to light the way. Once again the relentless spirit of the crowd rose to the occasion as they began making a kind of music not found on any DJ’s play list. Friends and family were circled around the bride and groom for hours, embracing them in love and laughter, singing and celebrating. It was a wonderful evening despite the weather with many examples of family and friends making the best out of the situation at hand. That is just the way this family is.

There was something oddly familiar about last Saturday night. The stormy outside was different, but the unsettled way I felt inside was the same. Often in Michael’s illness we had to change our plans. We never knew what kind of a day it was going to be for Michael. SIOD caused him to have varying degrees of pain, compromising his mobility and the things he could do. His general health was complicated to say the least, so we woke up each day never really knowing what that particular day would hold. The simplest of events usually meant hours of pre-planning, which more times than not, still resulted in a change of plans. However, Michael’s tenacity and persistence was rarely compromised. Michael and his life taught us that any day can be like a party regardless of what occurs in the day. That approach has become a treasured gift in my life, transforming many of my calculated ways. It allows every day to be an opportunity for some kind of “party” and a reason to celebrate big miracles inside little things.

Surely, this young couples wedding celebration didn’t turn out quite the way they planned but it was still their special day full of blessings and definitely a day of greatness. No doubt there were lessons learned, love celebrated, and new beginnings. Someone once said, “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain”.

All of us need to weather a few storms to truly enjoy the real meaning of a good dance even when the music isn’t playing.

Daily Bread

2010-06-25T09:03:00.014-05:00

From the start of a journey that began with my child being diagnosed with a rare syndrome all the way to now where I’m learning how to wear the grief of my child’s death, I have often contemplated these two questions: Will I have what it takes and will I be enough? For me personally, it is impossible to ponder such philosophical questions without looking inside myself spiritually, which leads me to the One who unconditionally answers these types of questions with complete truth. Unfortunately, because of the imperfect world we live in accompanied by our own imperfections, we are occasionally drawn back to asking those questions over again. Even though we still embody the same answer we received before. What also comes with that spiritual look inside my life is a back door view of past experiences which affirms that I will always have enough since I always did.

One of the questions I am asked frequently is, “How did you get through Michael’s illness and death, your husbands heart surgery and your own breast cancer happening all at the same time?” The answer is typically the same - You do what you have to do trusting faithfully you will always have enough. I admit that it seemed easier to push through when I was doing it for my child or my husband than for myself. However, I have learned the importance of caring for myself to allow an increased capacity to care for others. With every medical crisis we were given the skills and the wisdom in faith to handle what came our way. I probably doubted it many times over the years, but now the “you will always have enough” concept has given me the confidence to approach situations with that truth and reality in tow. I found little value in saying, “Why me? Why Michael? Why did this happen to us?” Mainly because in the here and now there are no true answers to those questions, I simply don’t give energy to them. Instead, I am gracefully and humbly learning how to say why not me.

The words “daily bread” is something I have recited in prayer almost weekly since I was a young girl. Because of the many challenges I have faced in my life, I found myself questioning the true meaning of those words. Thankfully, I can say that I believe those words mean you will always have enough for that day. There will always be enough by trusting in simple words such as “give us this day our daily bread”. Conducting your life, whether it is difficult or not, with faith, trust, love, and a belief that you have strength beyond your own, you will have enough. In doing so, you will discover who you were made to be.

You will Be the Change.

The R.A.R.E. blog

2010-06-20T19:52:00.006-05:00

It was my privilege to have had a conversation last week with a contributor from the R.A.R.E Blog. The purpose of the R.A.R.E. blog is simple: “We are moms, dads, sisters, brothers, friends, researchers, clinicians and the like who believe that when people come together in hope that amazing things can happen.” Definitely centered in a core belief such as that, I am excited to develop a blog partnership with them. I too believe that very same thing, having witnessed it many times in my life.

In our experiences with Michael and his rare syndrome Schimke Immunoosseous Dysplasia (SIOD), hope was consistently exhibited when our friends and family gathered with us. Amazing and powerful things occurred in those gatherings which inadvertently increased our capacity to hope in a situation that so often felt hopeless. As parents, we never dream that one day we will be driving a wheelchair accessible van with a handicap license plate on it, but we also can’t even imagine the life altering opportunities it will give such as watching family or friends lift your son out of that vehicle, putting him gently and humbly into his wheelchair. Without a doubt, there was a high price paid for that view but the imprint it left on my heart is priceless. Fortunately I didn’t miss the view by only focusing on the “handicap” portion of it, but instead grace controlled my thoughts and I was able to see it in hopeful amazement.

With every situation we are given a choice whether we are conscious of it or not. We can choose to simply look at our cup half empty, missing the importance of the other portion or we can make a choice to be more hopeful, looking at our cup half full, regardless of what happens in our lives. We must trust and believe that we possess the ability to make quality conscious choices. The power in that ability creating the most out of our experiences makes a positive view available, especially when people come together in hope allowing amazing things to happen. Visit the R.A.R.E. blog here.

A sibling coping with illness

2010-06-17T06:41:00.031-05:00

Recently, after a Be the Change presentation at a health forum, a young male nursing student asked me how a nurse can effectively care for not just the patient but also the siblings who are surrounded by a brother or sisters illness. I was encouraged by his question mostly because the level of his compassion was displayed by it. He was not only concerned about the care of his patient but also the delicate balance between the health of the patient and that of the siblings. This confidently assured me he is going to be a great nurse. Siblings of someone who is ill, especially a young child are innocently and most often helplessly bound by the disease in a category all on its own.

In the case of our daughter Jessica, I know there were many times she experienced something frightening happening to her brother. When a medical crisis started happening, I just couldn’t put her needs first because of the critical nature involved in her brother’s syndrome. As her Mother, I had the deep desire to want to protect her but honestly, one person can not physically or emotionally have that much capacity in that type of situation. I needed someone to care for Jessica while I was caring for Michael. Therefore, it's vital for the nursing staff to support the siblings when a medical crisis occurs and care for them while others are caring for their sibling.

We never know what the outcome of any medical trauma is going to be and considering the sibling already copes with the reality of what could happen to their brother or sister as a result of the illness, they just don’t need another horrifying experience to add to it. We must put just as much attention on the sibling as we do the patient in order to give quality care to the whole patient; body, mind and spirit which includes their family. It is another example of a relationship that must be valued and when it is the human experience is nurtured.

As I watched Jessica walk that bumpy road with her brother, demonstrating just as much courage and faith as he did, it strengthened me in my journey with them. Siblings share something unique and special just to them as sister and brother. As their parents, it is our grace filled privilege to have a front row view of their relationship impacting us in ways we never could have imagined.

We have been blessed by many treasured family and friends who have wrapped their arms around Jessica, helping us care for her during the time of Michael illness and continue to do so in the loss of her brother. It truly does take a village to raise a child especially in a situation like ours. That nurse who asked me the question about siblings will be given that same opportunity, probably many times during his nursing career. He will be the arms wrapped around a sibling for a Mom or Dad who are in a difficult medical situation, doing the very best they can.
He will Be the Change.

Words make a huge impact

2010-06-14T10:11:00.014-05:00

According to Wikipedia, the range that people comfortably hear and vocalize words is 150-160 words per minute. That translates into approximately 9000 words an hour which could be more or less depending upon your personality. My family and friends would probably agree that I am the type of person that definitely exceeds that calculation often. Words can sometimes be spoken at a rate that might surpass memory. However, at certain times and in certain events there are words that can never escape our memory. I experienced one of those events Friday night at the Lakeville South High School graduation ceremony.

Our son Michael would have been graduate number 445 called upon the stage at the Target Center Friday evening along with the other 444 Graduates from Lakeville South High School. Instead what we held on to were the words of his friend, student speaker Adam Kunkel. The words he spoke about Michael in his speech represented the spirit of our son that lives not only in our hearts but also in the hearts of his friends at LSHS Class of 2010. Once again I am reminded of the significant impact words as well choices makes.

Adam made a choice and a decision to remember his friend in his graduation speech. In doing so we as a family, even if only for a few moments, were spared the loneliness and sadness we were experiencing by Michael’s physical absence. The words used in his speech about Michael embodied his personality, allowing everyone to walk along memory lane with a boy who impacted hundreds, sometimes just by his smile. After the graduation ceremony among tear filled words were long embraces and compassionate faces. Those are the very things that will carry us through this emotional season, having an impact all its own.

What struck me is how similar all of this is to Be the Change in health care. The impact of words and actions chosen by the health care community has a tremendous impact on patients and family’s, completely affecting the medical experience as well as the human experience inside of it. Do you think it is a coincidence that Be the Change began the same year Michael’s high school class graduated? Probably not a coincidence at all; Just another example of hope for the future demonstrated by someone who was impacted and changed. Again we have had the extreme privilege to witness how words and actions impact the human experience.

Congratulations to the Class of 2010 and thank you Michael, LSHS Graduate 445, for inspiring us and impacting the world around us.

Looking for a new chair

2010-06-10T09:16:00.021-05:00

After my Mom passed away, almost 22 years ago, confusion, doubt and guilt seemed to creep into many areas of my life. As I became more familiar with the affects of grief and its complicated yet necessary process, I began to learn those are just a few of the many components of a griever's journey. Simply put, I just couldn’t figure out what chair I should sit in now with out my Mom physically present in my life. The relationship between walking out my grief and looking for a new chair began.

With out even realizing it most people sit in the same chairs most of their life. When having a family dinner or family get together almost instinctively you choose the same chair. For example, my Dad always sat in the same spot at the dinner table and sat in the same recliner in the living room. The same is true at church. Most often people sit in the same pew as their family did or the one they chose the first time they attended. It appears to give us a sense of belonging and keeps us grounded in something that is constant and familiar when so much in life is not.

So when someone leaves the family or worst case scenario in a death, an empty chair is produced causing each family member to subconsciously ask themselves, “Where is my chair located now?” It’s a process that goes somewhat unnoticed but the affects of it are definitely happening. The first couple of family gatherings following my Mom’s death, I noticed how difficult it was for all of us to find our new spot. We all had to try some new chairs in an attempt to find the one that felt the most comfortable without her there. It is a subconscious process filled with emotional ups and downs. What makes it even more difficult is that it’s a different process for each person demanding mutual respect and deep love.

Fortunately my family has an abundance of both, completely surrounded by grace and mercy. We all found a new chair and a new comfortable spot among each other with out Mom and then years later again without Dad. I was aware that my new chair wasn’t the same, and that many things had changed but slowly I began to feel embraced by gratitude and comfort that only rest in a comfy chair can provide. By it I was transformed and the confusion, doubt and guilt I felt early on, made way to a new and hopeful journey.

I believe that grief flows from one experience into another. After Michael died it felt nearly impossible to find any chair that was comfortable, but I remembered the hope I experienced earlier in my life while grieving the death of my parents and the “finding a new chair” process began again. It kept me pressing forward confident that a new chair, built with new grace and mercy, would come. At one time or another all of us look for a new chair. Be it the loss of a loved one, or the loss of a job, or other types of loss we experience in life. Whatever your situation, be open to trying a few different kinds of chairs but remain hopeful, respectful and loving in the process.

I once read that we don’t overcome suffering by denying it, but by allowing it to transform us. Finding a new chair is almost always born out of some kind of suffering, but it has the potential to transform anyone to Be the Change. Only then can you find comfort in a new chair.

Be the Change Inspiration

2010-06-07T15:32:00.011-05:00

Our son Michael is the inspiration behind Be the Change. Even as a young boy he challenged nurses and doctors to treat him like a real person not just a boy with a rare disease. He wasn’t just a little boy who looked like he was four even though he was ten or just the boy who had to transition into a wheelchair because he couldn’t walk anymore. He was a real boy who just wanted to be like other kids. It’s very easy to look at a situation like ours and just see the diagnosis and forget that there is a real patient and family behind the diagnosis.

Michael attracted a fair amount of attention from the medical community (actually everywhere he went) for various reasons but mainly because of his rare syndrome. At the time of diagnosis in 1999 it was estimated that there was approximately 25 reported cases in the world. Unintentionally, the medical community and maybe even we expected him to act to much like an adult because of his rare syndrome but the truth was he was just a little boy forced to live much of his life in the adult medical world.

People often commented on how Michael talked like an adult even though he was so young. I think it was because he was constantly surrounded by medical terminology and adult conversations. When he should have been riding his bike or in time out because he called his sister a dork, he was having MRI’s, surgical procedures and kidney dialysis instead.

Over and over again we asked Michael to trust us and the health care staff that was providing the medical care his syndrome required. Yet in order to do that he had to be involved in those adult conversations in varying degrees. This is why relationships with nurses and doctors taking care of him and doing things to him is essential. Only through a mutually respectful relationship could Michael start to trust them. Relationships develop and build trust and without it the quality of care is diminished.

Be the Change gives a face and voice to the importance of strong relationships and partnerships in health care. A patient and their family will automatically have a better medical experience when the human experience is respected, nurtured and valued.

Michael wasn’t just a boy with a rare syndrome; he is so much more than that. Now he is the face of Be the Change and I am his voice. Contact me at theresazim@charter.net if you would like to hear Michael’s story and how he inspired me to carry on what he started. You will hear about his life experiences, our family’s journey with him and the powerful impact he made on everyone he met. It is a story of hope amidst change. His young life will inspire you too, giving you the chance to Be the Change.

When Michael was five

2010-06-03T13:44:00.016-05:00

Michael always seemed to compare everything he did to when he was five. He would say things like, “I couldn't do that when I was five, or remember when I was five”. We even have a picture of him with a big white plastic number five that we use to chuckle about since it so appropriately matched his mantra. Oddly enough Michael was five when everything in his life began to change.

Michael loved to ride his bike. He had a favorite little black bike that he would ride non stop up and down the driveway. We even accumulated extra bikes from garage sales and family members for the day he would advance to another size bike. Sadly that day never came. Instead he transitioned into a blue battery operated scooter named “Scoot-Scoot” and eventually three different types of wheelchairs.

Michael loved anything with a motor and that could go fast. One summer while on vacation my husband spotted a cute red four wheeler that we ended up buying for Michael’s sixth birthday. Now I think we must have been crazy buying a four wheeler for a small six year old boy. But the memory of that grand birthday celebration complete with a covered surprise in a secluded spot at his Grandparents farm, assures me we did the right thing. It was priceless to watch his excitement as he ripped through the covered display, revealing his favorite birthday present ever. He rode on that little red four wheeler year after year, both summer and winter. Even when the disease robbed him of his mobility he could still ride it, pretending things were the same like when he was five.

Party should have been Michael’s middle name. He loved to invite friends and family over or better yet be able to go to someone’s house for a party. Secretly he would always have the hope and possibility of being able to stay over night, extending the fun into one more day. For hours he would play games and watch movies, eating snacks and drinking pop until his stomach hurt. Michael was the kind of kid who just loved to be with someone or simply be by someone. I use to comment about how Michael was literally attached to my hip; Funny how that is the very thing I long for now. When Michael was little, prior to age five, I had a job working from home and he had to have his little desk right next to mine. Day after day he would spend hours at that little desk cutting paper strips, making paper chains for various occasions. One of his paper chains was even used by a local youth group which prayerfully supported us prior to his kidney transplant.

As I reflect over Michael’s thirteen years of life I am consistently reminded of how wise he was beyond his years including his (not so random after all) comparisons to when he was five. I am, to my knees, grateful for the memories and the experiences we share with our angel Michael. Most of them inspiring Be the Change.

If only we could have just one more party with you Michael. I promise you could stay over night.

What is Be the Change

2010-06-02T08:39:00.010-05:00

Be the change is a passion and vision that gives each of us a unique opportunity to improve health care by strengthening relationships between patient, family and provider through sharing personal medical experiences and allowing those experiences to make an impact. Real life stories can serve as a reminder to the health care community of the powerful influence they have in the decisions and choices they make. Not only on the patient and the family but other health care staff as well.

Be the Change wants to impress upon you the importance of not just the medical experience that your patients have but the human experience that surrounds it. Both are equally important to effectively care for any patient and their family. For example, good clinical nursing skills are of the utmost importance but so are compassionate relationship skills. Our personal experiences I share in Be the Change presentations definitely demonstrate that.

We all want the same things in health care with safety and quality care at the top of the list. By shedding some light on a couple of issues we encountered in our personal health care experiences, some good and some not so good, we can develop a stronger and more effective partnership between patients, families and health care providers. These strengthened relationships and partnerships will bridge the gap that sometimes exists automatically increasing the quality of care both received and delivered everyday.

Be the Change is about giving a real face and a real voice to the importance of relationships and partnerships. At one time or another we have all heard someone say “something has to change in health care”. Well I believe that we can be the change by sharing our personal medical experiences and you can be the change by allowing it to impact you. Remembering just a few things shared in a Be the Change presentation will definitely change many things.

Michael's high school graduation

2010-06-01T12:26:00.015-05:00

Michael’s high school graduation would be next week. I can only imagine what he would look like in his cap and gown and how excited he would be for this grand event in his life. I want to honor Michael, celebrating his spirit that surrounds this graduation season, by sharing more about him in the next couple blogs. I hope they make you smile and give you many reasons to embrace life more fully. Join me now as I walk down memory lane, celebrating the love as well as the hope Michael represents.

Michael cried for the first two years of his life. He was a colicky baby and thought sleeping wasn’t all that necessary. I do believe that his complicated sleep schedule was created in part by some advice we received from a hospital doctor after Michael’s birth. He instructed us to wake him every two hours to feed him because he was born five weeks premature and weighed only four pounds. All I am going to say about that is I should have listened to all the Mothers who told me to never wake a sleeping baby!

From colic he moved to a really fun phase in which he held his breath until he passed out whenever he was very mad or very sad. From there he went on to a biting phase which involved most of the neighbor kids and day care kids. Thankfully all this fun ended around age four. Through it all the one thing he always had going for him was that he was the cutest little boy in town. His sweet smile could melt hearts dissolving any amount of anger and frustration. One glance into his eyes and of his long eye lashes helped us ignore our sleep deprivation because he woke up at 5am most mornings. He truly loved his pacifier “Nukie” and honestly so did we because Nukie helped him not cry so much. But one day while riding in the car in his car seat he learned that he could spit Nukie out hitting Dad in the back of the head. Mysteriously a few days later, Nukie got lost at a parade.

Michael absolutely loved being outside. He usually had on his Barney hat and sun glasses because he thought the sun was too bright. Michael was boy in and out with a love for Matchbox cars, Tonka toys, John Deere tractors, bikes, mud puddles and Leggos. When Michael started pre-school his teacher said he was the one with the most friends; a statement that was very often spoke. When he started playing T-ball everyone said he was the fastest runner on the team but he was definitely the smallest. He thought it was absolutely necessary to slide into every base when he got a hit even though his t-shirt went all the way down past his knees and his batting helmet swayed back and forth because it was too big for his little head.

Michael loved to go camping, actually all of us did. We bought our first pop up camper and started camping when Michael was still a baby. He was always the first one up in the campground and accompanied by his Dad had it “all checked out” before most of us were even awake. Summer vacations at Cass Lake Lodge were another one of Michael’s favorites. He loved to play in the sand on the beach, swim with his blow up tire tube, go fishing or tubing with the boat, build a campfire, and play in the lodge arcade eating candy and drinking pop.

When Michael was diagnosed with SIOD in 1999 we slowly had to change the way we did the things Michael loved. Surrounded by the love and support of family and friends we were able to keep doing them even though Michael eventually couldn’t walk and had to transition into a wheel chair. At some point we made a decision that SIOD would not define us, nor would it own us. We were still going to be a family in spite of this rare syndrome and all of its challenges. As Michael’s Mother I thought I was going to be the one teaching him about life but in the end he was the one who taught me. In spirit, he still does providing a graduation degree beyond this life for both of us.

While preparing for Michael’s funeral, our daughter Jessica found this quote by Abraham Lincoln, “And in the end, it's not the years in your life that count. It's the life in your years.” There was certainly a lot of life packed into those thirteen years. That quote has served as a guiding light in our journey without our sweet smiling Michael.

It's all about relationships

2010-05-27T07:15:00.010-05:00

In life, it’s all about relationships. Spiritually, personally and professionally we need relationships to fully embrace all that this life has to offer.

In my journey through Be the Change, I am consistently reminded of the power that a respectful relationship holds. Since I began working from home in my dual-purpose Be the Change office, I challenge myself daily to reserve a part of each day to do some reading and have some quiet time. It has truly enriched my spiritual relationships, far exceeding my limited expectations. With Be the Change, I am connected to kindred hearts that provide relationships I need to keep me focused, fueled and humbly mindful of its purpose. My relationship with the health care community is vital to the type of medical care I receive, even if it’s just for my yearly physical. The partnerships I am developing with people from the health care community are key to meeting Be the Change objectives which is centered in relationships.

All of these examples of relationships speak into my personal life and my relationships there that I hold near and dear to my heart. I believe the way I conduct myself professionally is defined by who I am personally, largely due to the relationships I had growing up.

This Memorial Day weekend, I hope you choose to take some time to reflect upon the relationships in your life. In this fast-paced world of electronic connection where professional, personal and spiritual relationships have a wide scope, it is even more important to devote quality time to developing and maintaining relationships. As we honor and remember those who have gone before us this Memorial Day, especially those currently serving our country, think about what it was about them that impacted your life. No doubt it is something that was rooted and cultivated by a nurtured relationship.

Definitely life is all about relationships.

My Dad's Nurse

2010-05-24T12:31:00.035-05:00

For a few minutes in Be the Change presentations I talk about the morning my Dad passed away. I have a couple vivid memories of him that day, one of which involves a nurse who was caring for him and the powerful way she impacted me.

Now if you knew my Dad personally you won’t be surprised to hear that when I entered
his room at Abbott Northwestern Hospital the morning of his heart surgery he said to me, “You again?” He had a somewhat gruff but honest way of letting you know what he thought. If you could disregard some of his words and instead observe his actions, he was very kind and tender. The words this simple, hard working farmer spoke were typically opposite of what he really meant deep down. Most of the time he could more accurately demonstrate his love in actions rather than words.

I had been to the hospital visiting my Dad just the day before his surgery with my husband and two children. We spent a wonderful Sunday afternoon with my Dad. It was filled with the usual teasing by a Grandpa who loved to do that and the giggling of grandchildren who loved it even more without even so much as a glimpse of what lied ahead. That memorable Sunday afternoon turned out to be the last one we would share with him.

My Dad starting have chest pain while shoveling snow a few days prior, disregarding the strict instructions we gave him not to shovel the driveway at his age. Believe it or not, he drove himself to the emergency room and there they confirmed he did have a small heart attack. He was transferred to Abbott and it was decided that a surgical procedure was necessary. The morning of my Dad's surgery as my brother and I were getting close to his room we could hear Dad's loud voice, infectious laugh and the sounds of a nurse laughing along with him echoing in the halls. As we entered his room I walked over to his bed giving him a kiss on the forehead, disregarding his “you again” comment. I couldn't resist firing back with my own quick comment of “Well I love you too Dad”.

The nurse and I started a conversation while my brother and Dad were catching up. She told me that they were laughing about Dad’s socks and that he wanted them left on during surgery because he was always cold. Apparently my Dad had been teasing her about her growing stomach since she was expecting a baby and that he was wondering if she also had trouble putting on her socks like he did because his stomach looked like hers. She also shared with me that earlier Dad had been telling her all about his eight children and that he had seen all of them in the last few days except one, my brother who just arrived with me because he was on vacation the week before. She told me how much she enjoyed my Dad and the time they had together this morning. There was such a peaceful calm which oddly seemed to usher in the unexpected heart break. Then it began, almost in slow motion. My Dad stopped talking and stared blankly ahead. Despite my pleas, he didn’t answer instantly catching the attention of his nurse. As she searched for a pulse she pressed the call button announcing, “Code blue stat, code blue stat”. A swarm of nurses and doctors promptly emerged focused and ready to do what they were trained to do. Heroic efforts were made to save him by the best cardiology team Abbott had to offer, but still my Dad died that morning following a massive heart attack.

To this day, over thirteen years later, I can still faintly hear the sounds of the laughter coming from my Dad’s room that morning. I can still remember the sense of peace all of us had right before my Dad slipped away. The nurse who nurtured the human experience while providing good quality nursing care to my Dad gave us a treasured gift that day. The peaceful memories of that morning embraced me as I grieved, giving me comfort. Those memories helped me cope with not just the reality of suddenly losing my Dad but also the flooding memories of my Mom’s death years prior to that which came rushing in at the same time.

I point out in my Be the Change presentations that you never know when or how you are influencing someone’s life by the decisions and choices you make. As a nurse you never know when you will have that same opportunity to humanize medicine and make a powerful, lasting impact on a patient’s family. At the end of my presentation I say, “One nurse leads by example, affecting others”. A statement I truly believe and has been demonstrated to me many times.

Every nurse has the ability to make a difference; to be the change. Will you be the one who offers life long comfort to a young woman and her family by the choices you make and the relationship you develop even if it is for only one morning filled with both laughter and tears?

Making an impact

2010-05-20T10:22:00.025-05:00

Usually if time permits there is Q&A at the end of my Be the Change presentations. I believe allowing the opportunity for questions or thoughts to be communicated before I leave is key to what surrounds Be the Change.

Relationships and partnerships developed in that environment, even if just for a few minutes, are as important as the ones I talk about. Our story, which I share in Be the Change presentations, is about my family's health care experiences and the insights I have gleaned from them. But it’s also about putting a real face, Michael’s face, our family's face, to the importance of relationships and partnerships in health care. The experiences I share with my audience and the experience they have with me is no different. For any change to occur there must be mutual respect, understanding and a shared vision for what is possible, which is supported through a relationship and partnership.

It was exciting to have an opportunity to share Be the Change with a group of nurses and staff from the Minnesota School of Business (MSB) Richfield campus nursing program yesterday. Once again I was reminded of the hope and promise that exists in them and the future of nursing. The energy and commitment of not just the students but the staff as well was evident during my time with them. They were very kind and welcoming when I arrived and throughout the presentation I was certain of the impact our story was having on them by the attentive way they listened and the valuable questions they asked.

None of us can ever be sure of the kind of impact that we are making on others. That’s one of the things I talk about in my presentation. But I trust and believe in that we can be confident of anything that is done with great love and an annointed purpose, will make some kind of impact on those around us. The nurses sitting in front of me will be doing just that, some of them in the very near future. It humbles me to think that our son Michael’s journey in health care with a rare disease has the possibility of impacting these young women and men. The picture of Michael’s face on the PowerPoint screen behind me served as a constant reminder of the importance of providing quality nursing care while supporting the human experience inside the medical one. This is all because of the way a young boy impacted the health care community and the family who loved him, giving all of us a renewed sense of commitment and purpose.

I definitely left the presentation assured of the abilities in this group of nurses from the MSB nursing program. If they care for patients as kindly and compassionately as they cared for me in our short time together yesterday, then we will all be impacted.

Nurses working hard

2010-05-17T11:11:00.009-05:00

It’s a busy time of the year; First Communions, Confirmations, Prom, Graduations, just to name a few. They all represent a new season in life where we step out in faith with the hope and promise of what lies ahead.

Amidst this busy season is a week that I assume will be very challenging for nurses. MN nurses vote on Wednesday May 19th to either approve a new contract or authorize a strike. The concerns that nurses have affects not only them personally but the patients they care for on a daily basis. Nurses are the life line to the necessary care that is required when we or a family member get sick. I think to some degree we all take nursing care for granted and presume that it will always be available to us when ever we need it. The nursing profession should be constantly assured of our support in their efforts to provide quality and safe care to us. The truth is that nurses not only face the same personal issues that all of us have in this current economic climate but they also strongly advocate for anyone who has ever been a patient or might be one in the future.

Nurses and patients along with their families want the same things in health care with safety and quality care at the top of the list. Only in a respectful partnership between patients, nurses and administration are we going to achieve the best and most favorable outcome. It always seems to come back to the value of relationships and partnerships that is demonstrated in the choices and decisions we make. This is true in any health care scenario whether it is by the care of patients or the care of the nurses who provide it.

Nurses, be assured of my support for you especially this week and I encourage everyone to offer some kind of support to nurses over the next few days. Let them know how much you appreciate what they are doing and how grateful you are that they continue striving to provide a high level of care as well as be concerned for patient safety. You never know when you will be the one on the receiving end of what nurses are working hard to maintain.