As we prepare for our annual Children’s Memorial Service coming up on April 22, we asked one of the speakers for this year’s memorial service to share her story in honor of all the Little Victors whose courage we celebrate, both at the memorial and throughout the year.
Heroes come in many forms. Their acts are often blatant and powerfully triumphant, but sometimes they are more subtle. Sometimes they take their time and fight a long battle, but show their true heroism by teaching us along the way. I was saved by a hero named Mitchell. A little boy with a sunny disposition and infectious laugh that warmed the hearts and touched the souls of everyone he met. None more so than mine.
At age one he was diagnosed with severe spastic quadriplegia, a form of Cerebral Palsy. I was told he would likely never walk, talk or eat on his own. I immediately mourned the little boy he would never be. But he wouldn’t let me feel that way for very long. All I had to do was look into those big green eyes and feel the warmth of his hand holding mine, and I knew he was happy just the way he was. He didn’t want to live life any other way.
I spent the next five years being taught how to live by a sweet little boy in a bright blue wheelchair. He taught me about courage, and how to be passionate about the things that are important to me. He taught me how to take risks and to never tell myself I couldn’t make it. His strength and courage moved me then, and still do each day.
I came to know many people because of Mitchell, but it was the relationships I developed at C.S. Mott Children’s Hospital that have meant the most to me. All of Mitchell’s specialists were at Mott and we visited them regularly. We traveled back and forth from the southwest corner of the state several times a month so that U-M doctors and nurses could tend to Mitchell’s many needs. For all of his five short years these wonderful people were a constant. They were like a rock that I leaned on. They offered me ideas, support, and respected my decisions. Most importantly, they showed my son the love and respect any child deserves. Especially a child with special needs. They were, and still are, simply amazing.
At the beginning of 2010, Mitchell began to change. Things happened subtly at first, so subtly that I didn’t notice right away. He wasn’t his usual happy self. He didn’t laugh as much as he used to. I began to get more calls from school telling me he wasn’t feeling well. We made many trips to the doctor and they all came up empty because nothing was really wrong with Mitchell. He just wasn’t himself. During the summer of that same year Mitchell started having trouble breathing.
After a couple 911 calls and subsequent visits to the local ER where he was stabilized and sent home, Mitchell was finally rushed to Mott Hospital. He was very sick. Not the immediately diagnosable sick, but the twisted in pain, respiratory distress, can’t find a reason why kind of sick.
He spent the next two months in Mott’s Pediatric Intensive Care Unit, trying to tell me it was his time to die. It was something I never wanted to hear and tried my best to ignore. During that time my bond with the PICU staff became so strong that I can’t imagine I would have made it through without them. For those long two months, Mitchell and I were treated like we were part of a family. A family pieced together from many different roles. We were parents, doctors, nurses, social workers, and many others. We laughed, cried, rejoiced, and reflected. I taught them about Mitchell, they taught me about medicine, and together we learned about life. As a team, we worked tirelessly to try and heal my poor sick boy. In the midst of everything, Mitchell was teaching us how to be better people. He brought us together, made an impact on our lives, and now he was giving us the ability to help others. You see, when a child like Mitchell comes along, you are never the same. You look at the world differently. You look at people differently. You look at life differently. Mitchell taught us what it means to be a fighter. He taught us that you can find love, strength and hope in the saddest places. Ultimately, he taught us that you don’t always have to survive to make a big difference.
In early October, I heard what Mitchell had been trying to tell me for some time. He was telling me that he had done what he needed to, and that it was time for him to go. That day, during a meeting with all his specialists, where we were going to decide the next plan of attack, I told my “family” what Mitchell wanted. No one said a word. It was like he had told them, too, and I had been the first to say it out loud. These people, who had worked tirelessly for months, lost sleep, came in on their days off to solve the mystery and heal my boy, had realized that Mitchell had accomplished what he came here to do.
On October 5, Mitchell died in my arms.
We so often hear the amazing stories of children that were healed at Mott Hospital. We call them our little victors. We celebrate them and their courageous spirit. And while my heart is overjoyed when I hear their triumphant tales, I can’t help but think that equally as amazing are the stories of the children who died fighting. The children who in the midst of tragedy and pain showed amazing strength and courage when they knew it was their time to say goodbye. The lessons we learn from these children helps us to heal others. They make us think, question, and push the boundaries. They will not be forgotten, and they too should be glorified. These children are also our little victors, and at Mott we can honor and celebrate them. Through Mitchell and the many others like him, we have become better. Better doctors, better nurses, and, at least in my case, better human beings. He is a victor valiant…and will forever be my conquering hero.
About the Author
Having first come to Mott for the care of her son, Mitchell, Anne Ryan is now a volunteer in the Patient & Family Centered Care Program. She often shares Mitchell’s story to groups working in the health system to highlight the importance of communication and trust.
About Mott Children’s Hospital
University of Michigan C.S. Mott Children’s Hospital is consistently ranked one of the best hospitals in the country. It was nationally ranked in all ten pediatric specialties in U.S. News Media Group’s “America’s Best Children’s Hospitals,” including #3 in the country for heart and heart surgery. In December 2011, the hospital moved to a new state-of-the-art facility providing cutting-edge specialty services for newborns, children and women.