So often I find Max being defined more and more by the chair and by the diagnosis. Or maybe it’s that I am defining him more and more by the chair, and blame rests with me not on the shoulders of others. As Max had grown older its much more apparent that there are serious issues. Gone are the days when he was just a little guy in a stroller, the little guy has been replaced with a grown 6 1/2 year old boy and the stroller replaced with a 60+ pound crash tested steel beast of a wheel chair. At times it’s as if he’s become one with the chair and I almost don’t even realize it’s there. Other times it’s obnoxious, it’s offensive and carries with it a taunting tone. It’s in those moments that I struggle to dig past the circumstances, past the diagnosis and find my way back into the spirit and soul of my son.

The other evening as I was on the floor spending some time with Max, his grandma lifted him onto my back and started helping him wrestle me. Quickly his sister jumped onto my back sharing that sacred space with her brother. The two of them perched as conquerors, as great dragon slayers. I could feel Maxs smile, I could feel his belly laughs as he pow’d his dad. As these cherished minutes ticked by I was struck with the thought that this moment these are the moments that break free from the chair. When the confines of that steel frame cannot contain the spirit of life emanating.

At this point in my journey with Max I rarely find I fear the medical side, the diagnosis or the specialists. What I fear is allowing myself to become disconnected, allowing the chair to separate me from the little boy longing to be free.