THE EXAMINED LIFE
Each year Mitch was invited to go to the mobility lab at Shriners Hospital where technicians would attach sensors to his body and, with the help of sophisticated computers and cameras, model his mobility and muscle decline. I was always there to document the experience. While doctors were capturing his muscle movements, I was there to capture his beautiful, tender soul. Most importantly, I wanted my son to know how much I cared about him. I never wanted him to turn around and see a cold, empty chair where I should have been. I did my best to cheer him on until the very end. Although his body was getting weaker with each visit, I saw his countenance and kindness grow ever stronger. Sometimes the strongest angels have broken wings.
In this photo Mitchell’s Aunt Sonya, a pediatric physical therapist at Shriners, ran with Mitch and turned what might be a scary experience into something fun for him. She was a special tender mercy to our family. She loved little Mitch with all of her heart, and he loved her like a second mother. Sometimes guardian angels blend in with the rest of us.
Mitch smiled as he faithfully completed each task. With each routine doctors had him perform, their computer models of our son began to replay his movements with incredible detail. On their screen was a wireframe of a person walking, jumping, or standing up from the floor exactly as Mitch did moments prior. The same technology to capture body movements for movies and video games was being employed for medical purposes and Mitch thought it was fascinating.
What might have been a trivial set of routines for a healthy child was much more difficult for Mitch and he always left the hospital exhausted. One of the early challenges DMD parents’ face, while their children can still walk, is hearing comments from people who seem dismissive and comment on our child’s large calf muscles. “Look how strong his legs are!” they say with a slap on your back, “You guys are going to be fine” not realizing what looks like muscle is actually scar tissue. The truth is, the stronger (bigger) their legs look, paradoxically, the weaker they are. Thus enters the very real feeling of being misunderstood and further isolated from the world.
Gathering mobility data from Mitch was not only important for tracking his own health, we felt a responsibility to the DMD community at large, to contribute whatever we could to a much needed body of knowledge. We were just a tiny, invisible family and what little we could offer, we gladly handed over.
As we left the hospital I began to think deeply about our experience that day. I wondered what would happen if we applied as much effort to examine our inner selves as we do our outer selves. It is so much easier to observe and tend to broken bodies, than tend to broken souls.
So, when I stumbled across this image early this morning, I immediately wept for my son. I saw my little boy who loved his life, and suddenly it was done. I then renewed my promise, to my Father and my son, to live a life examined and to love everyone.
Yes, there are broken things to mend and I am sure to stumble a million-and-one times … times ten. It won't be easy … in fact, I know it will be hard. And when I reach the finish line, I am sure to have some scars. But all of that will be a small price to pay, including grief and pain, for those are the things worth examining from which we stand to gain.