Taking a drive

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

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

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

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

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

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

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

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......

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.