Jun 4, 2011
About 6 weeks ago I had the privilege of meeting a young man named Jon. He had come with his mom to our clinic after a dog nearly ripped his right eyelid off. You see Jon was about 13 y/o and had cerebral palsy. Cognitively Jon had no deficits that I could notice but he was trapped in this significantly contracted body that left him with no independent movement other then his ability to smile, chew, speak, drink and turn his head. His arms were stuck in a position up by his head (hence the nickname angel wings), his legs were curled up under him and his back was twisted in ways I could not imagine a person could be twisted. He was defenseless when the dog came for him but was well aware of what was happening. I could not imagine that feeling. The doctors did not think he was going to loose his vision and did what they could to stitch his eyelid back on.
I remember thinking the first time I met Jon that he was a special kid. As I looked at him in his wheelchair with his head hooked on the back of the chair, his eye patched and his incredibly contracted body preventing him from even getting into a somewhat seated position, I could not believe the smile he had on his face. His frail, run down, soft-spoken mom stood next to him with this look of complete desperation and need but there he sat confidently with such a beaming expression on his face. This too Jon had overcome. What a lesson I thought in perseverance and just taking what life throws at you and making the best of it. His smile was just contagious.
The next several weeks we worked hard as a team trying to adapt Jon’s basic wheelchair so he could at least sit upright in a less painful position and his mom could push him without having to tilt the chair back on its back wheels. This proved to not be an easy task when you are trying to support such a contracted and curved body with just foam, wood, duct tape, straps and whatever else we could fine. Jon would patiently lay on the mat for hours while we problem solved occasionally needing to transfer him back and forth from the chair. Occasionally he would state he “was ready to go home” but he always kept that smile on his face and tried anything that was asked of him. We thought we had successfully found a fix to his chair as pictured above but Jon some how found a way to break the thin board we were using to support his legs so we were once again back to the drawing board. He was scheduled to return to the clinic this Monday morning but did not show up. We found this odd since he always came to his appointments. Then Monday afternoon the mom of one of our other patients came in and told us Jon died Sunday. She did not have any more details.
I was completely speechless and shocked to hear my Zanimi (friend) was gone. I praise God that Jon is now free of his contracted body and officially has his angel wings. It does however make me sad to think that no one else here on earth will have the opportunity to meet this young man and be blessed by him as I was. I wish I had the Creole to hear his story in his own words. His smile was contagious and brought such hope and joy into this world. It is so easy to let the trials of this world get you down but Jon was such an example of someone that not only overcame obstacles but made you a better person just by knowing him. Thanks Jon for the blessing you are to so many. May you rest as Jeanie said relaxed with that smile upon your face.