I took these photos the night Mitchell was released from Primary Children’s Hospital. The hospital wanted to keep working on him because as an institution, that’s what they do. But our cardiologists were compassionate and knew better. Their personal advice was to go home as quickly as possible and love this boy with all that we had because the end was coming and there was nothing they could do to save him.
I’ll never forget the look on sweet Mitchell’s face when we told him we were going home. In his soft voice, tempered by shallow breaths he said, “Dad, really? ... I get to go home?” Mitch was relieved and excited. My wife and I were overflowing with fear. We were not doctors - though we relied on them to keep our son alive. Even though our medical experience was limited to Band-Aids and Neosporin, within hours we were given a crash course on how to run oxygen tanks, manage the device that would pump medicine into his heart 24 hours a day, flush his lines, manually administer other drugs through an IV, and more. We were overwhelmed. Overwhelmed with sorrow, new information … and the inevitable.
Doctors inserted a PICC line from his arm directly into his heart (no small procedure). This line was connected to a little computer that would administer Milrinone, the drug that would keep our boy alive a few more weeks. Without it he would have become very, very sick within hours. Without it he would have died rather quickly and painfully.
At the moment this photo [on the left] was taken I had asked Mitchell if he was excited to go home. His soft smile and loving eyes melted my heart. But inside I was falling apart … inside I was stumbling over the rubble of crushed hopes and dreams … trying desperately to feel my way through ashes and darkness. I tried to contain my fear and emotions so as not to frighten him. I wanted him to be happy. I had to find a way to live in the moment, and let tomorrow be.
After he was discharged Natalie rolled him to the curb – he was so anxious to live his life free of hospital constraints … to reclaim the life he loved so much … to be a little boy again. He had a look of determination in his eyes – an appetite for life I seldom see in anyone. At the time he didn't know this was a one-way trip. And that trip was the longest, most painful drive of my life.
Once loaded, before we even left the parking lot, Mitchell reminded us it was his week to lead Family Night (a tradition we have once a week to spend time together as a family). We were humbled by Mitchell’s desire to contribute, but Family Night was the last thing on our mind. We told him he didn't need to worry about it, that we could do something different instead if he wanted. Mitchell had a tremendous sense of duty. Once he understood a rule or expectation, he lived it to the letter of the law. A more obedient soul I've never known. Mitchell felt it was his duty (a duty he loved) to serve his family.
Two days later Mitchell would humbly teach a Family Night lesson that focused on love and service. I filmed his entire lesson. He had prepared some ideas to teach us and games to reinforce what he taught. It was an evening never to be forgotten. Our boy, hanging by a thread, struggling to breathe, put what little energy he had into teaching us about one of life’s most important lessons. Perhaps one day I’ll post the video of his lesson to our family. At that moment my frail son sat on the edge of his couch to share his ideas on love, I was mesmerized. As great as his lesson was, the most powerful lesson wasn't found in his words, but in his humble and faithful actions. This little boy, broken and withering away was magnanimous. I stood in his shadow ... I stood in awe of him.
Not a day passes that I don’t reflect on Mitchell’s longing for home; it was there he felt safest … where he could love and be loved. And despite his love for his physical home … a simple touch, a hug, a kiss on the forehead took him home, no matter where he was. Mitchell taught me home isn't a place; it’s a condition of the heart.
Today, my physical home feels profoundly empty without him … there is an echo in my heart that will last a lifetime. But there is another home where he now resides. I cannot see it … and oh, how I wish I could. But I have felt it. And it is that home that I long to be.
Last weekend, during the Miles for Mitchell 5K, I began to think about the kaleidoscope of winning. Real winning has so many unique forms, shapes, and colors and it is all beautiful.
Here are two photos that show 3 ways to win. Wyatt running in honor of his fallen brother … not a day goes by that Wyatt doesn't weep over the loss of Mitch; he would have done anything to save him. Luke, ever the faithful companion to Mitch, encourages Wyatt to press forward when his legs were tired. Lastly, a volunteer scout sitting in the shade of Mitchell’s balloons weeping over the loss of a friend.
Three forms of humanity. Three forms of winning.
To win is to try.
To win is to help others along the way.
To win is to have compassion and love deeply.
These young boys were living life unrehearsed, and living it beautifully. Each of them won.
Last summer we took our kids to the local High School to support a school fundraising event. The energy was almost electric as kids were running around and laughing - it felt all too familiar to my own childhood experience not many years ago.
My older kids quickly disappeared into the crowd with their friends leaving Mitch and I behind. All around us were physically capable people running, jumping and doing things with their bodies Mitch wished so badly he could do. He pointed to some boys running around the track at cheetah speed and said, “Dad, I wish I could do that.” I kissed his face and told him that one day he wouldn't have Muscular Dystrophy … that one day his body would be made whole; but for now, we needed to be patient. He squeezed my hand, smiled softly and we carried on. I’m not sure I made him feel any better … I’d like to think I did … but I could tell he was chewing my words.
As we crossed the track I took this photo and posted it on Instagram with the caption “Races are Relative”. I showed Mitch the photo and told him what I thought “races are relative” meant … that the only person he needs to compete with was the person he was yesterday. Everybody else is irrelevant. I also told him that his physical skills or material talents were far less important than the kind of person he was. I took that moment to reinforce what I have long taught all my kids: the most important thing you’ll ever do in this life is to be good to people.
It wasn't long before Mitchell’s older brother and cousin came back to get him and together they took turns pushing Mitch in his wheelchair around the track at full-sprint. Mitch smiled and laughed and had so much fun feeling the air rush through his hair and on his face. It was awesome. Mitchell’s smile warmed my heart and soul.
This weekend there will be a run and fundraiser in honor of Mitch and to support my family’s mission to fight DMD. While someone will inevitably cross the finish line first tomorrow morning, being first isn't the point of the 5K. In fact, it seems that tomorrow’s run is (and any run like it) is symbolic of the purpose of life, really. The point of it all isn't to best others, but to better ourselves – and I’m convinced we do this best by loving and serving each other.
It wasn't long ago Mitch attended a Special Olympics/Activity Day hosted by our school district. He was nervous because he knew his limitations and was afraid of being asked to do things that might accidentally hurt him. We assured him that was not the case and he agreed to go.
There was every manner of person and medical condition at that event – some were crippled, others nearly decimated by physical deformity. During one race, one of the most medically complex children finally crossed the finish line lying on her back in her electronic wheelchair, long after everyone else. This young child was met with tears, gratitude and loving pride by her family, supporters and volunteers. She smiled and jolted with excitement. Mitch and I watched this beautiful soul who was so glad to simply participate. She wasn't in a race against others – but in a soul-building effort to do her very best and that was all that mattered. Mitch and I looked at her, and then to each other as our eyes filled with tears. We were so happy for her. She ran, and she won. And so did everybody that loved and supported her.
I was fascinated to see Mitchell's deep empathy for others - that he would become emotionally moved by the triumphs of another person. That experience touched me to the core. Little Mitch also ran races that day in his own wheelchair and we were so proud of him. He did his very best and that was all that mattered. But he loved others, and that mattered even more.
Races are relative. And because of my son, not a day goes by I don’t ask myself how I’m running mine.
When The Parent Project MD asked for permission to use one of Mitchell's photos for this white paper I was and continue to be very supportive. However, I wasn't prepared for my emotional reaction to seeing this particular photo. It was, and remains, difficult to look at because our little son's heart was failing and we felt so very helpless.
At the moment this photo was taken Mitchell had just finished one of his last Nerf gun battles with his best buddies. His loyal friends called him “commander” and listened to his strategies and followed his lead. It was so cute to see. Mitch wanted so badly to be a little boy and do what little boys do. It wasn't long before he became faint because his blood pressure was so low and his body so weak. This photo shows his mother holding and reassuring him when he hardly had the strength to stand. All the while Mitchell kept pushing himself up because he just wanted to keep up with his friends. He wanted to live. He wanted to thrive.
So while this photo is hard for me to look at, it is necessary and it is relevant. Life has a way of dishing out hard things and often there's little we can do about some of the difficulties we encounter. But we can choose how to respond to hard things, to rise above them and use those difficulties to help others. And if Mitchell's story can help save lives and heal hearts (physically, emotionally or spiritually) we will do all in our power to help.
On June 29th we will be speaking at PPMD's International Conference in Baltimore. We've been asked to share Mitchell's Journey and help put a face and story to cardiac challenges related to Duchenne Muscular Dystrophy. Putting patients first – a worthy endeavor. That is the goal of PPMD, and it is our goal to do all in our power to help them.
Mitchell's Journey hopes to personify the many challenges that surround DMD ... because they are real, and they hurt ... and they kill. In the end, we hope Mitchell's Journey can point to hope, healing and finding happiness - no matter our individual hardships.
http://community.parentprojectmd.org/profiles/blogs/putting-patients-first