Monday, June 28, 2010

Dance in the rain

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.

Friday, June 25, 2010

Daily Bread

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.

Sunday, June 20, 2010

The R.A.R.E. blog

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.

Thursday, June 17, 2010

A sibling coping with illness

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.

Monday, June 14, 2010

Words make a huge impact

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.

Thursday, June 10, 2010

Looking for a new chair

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.

Monday, June 7, 2010

Be the Change Inspiration

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 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.

Thursday, June 3, 2010

When Michael was five

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.

Wednesday, June 2, 2010

What is Be the Change

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.

Tuesday, June 1, 2010

Michael's high school graduation

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.