God bless the child...

On my refrigerator, between the appointment cards, coloring book pages and photographs there is a newspaper article. That’s not to out of place; to have a newspaper article on ones fridge, but usually it’s for a child or member of the family; an educational honorific or sports accomplishment of some sort. This article however is different, it’s about a boy I have never met nor ever will. His name is Jimmy Henderson and on January 11^th of this year he passed away. This article; which was on the front page of the Evansville Courier and Press, has held its place in my kitchen since January and its there for a reason.

Jimmy was a special boy; I keep saying boy but he was 29 when he passed, but to all who knew him he was always a boy.  Jimmy suffered from a rare inherited disorder called Lesch-Nyhan syndrome; a disorder so horrific in nature that for him to live 29 years with the condition is as heroic a feat as I’ve ever known. Lesch-Nyhan causes it’s sufferers to violently and willfully harm themselves. Unrestrained Jimmy would claw uncontrollably at his face; especially his eyes and nose. While still quite young he bit off parts of his own tongue and lips. Doctors had to remove all his teeth as a child to keep him from doing further harm to himself.  His face would grimace and his little body would involuntarily writhe at any moment.  His arms were almost constantly restrained and before his outbreaks of self mutilation he would scream knowing what was about to befall him; this was his childhood. He never learned to walk or feed himself, couldn’t control his bowels and in the later stages of his life had to be fed through a feeding tube.  Jimmy never weighed more than 70 pounds and was only 4 feet 2 inches tall. This brave boy was in and out of hospitals all his life and because the chromosome deficiency caused by the disorder causes a build-up of uric acid in his body Jimmy  suffered from both severe gout and from frequent kidney stones, some so large that they became embedded in his kidneys causing even more severe pain.  But perhaps the most haunting and criminal part of his disease was that Jimmy was conscience of all of it; fully aware of what was happening to him and unable to stop any of it. He felt every moment of the pain, every ounce of its senseless wrath upon him; his mind and body in constant war with one another with Jimmy its only physical casualty.

There was however another victim of Jimmy’s war: his mother. When first diagnosed Jimmy’s mother; Mary, was told by doctors to institutionalize him, send him away for others to look after, that he wouldn’t live past the age of 12 anyway, but to Mary’s credit she refused. He was her little boy after all. Mary lived through it all; watching as her son was ravaged every single day by forces beyond his or her control. Feeling emotionally every pound of pain her son felt physically, enduring it, and finding joy in him in the midst of the all that agony.  Jimmy brought joy to her in his lopsided charming smile, his playful nature and in his simple words to her. Most could not understand Jimmy when he spoke, but Mary could. Jimmy’s personality was playful and very friendly, making him a celebrity of sorts in his community, bringing comfort and ease to those who would otherwise pity him. Joy was found when he received his certificate of graduation from Harrison High School in 2003. When Jimmy went to his senior prom; his date sitting in a wheelchair also so not to make him stick out and feel out of place, joy was there also. Joy was found in the child like games he would play with his sister and step dad. Joy was present when he was asked who he wanted to invite to a party, Jimmy’s playful reply was “girls, girls, girls” and when asked if boys could come he smoothly replied “what for?”

Jimmy’s spirit of joy was greater than his reality of pain.

That’s why Jimmy is on my fridge. To remind me that I am truly and overwhelmingly blessed and that I too should find joy every day, even in the midst of my own pain. Jimmy’s story freed me a little; it wiped away some negativity I had, it helped me remember to forgive a few extra people each day, and it reminded me again of those bonds we all share with family and how truly unbreakable they can be.

Surrounding his article are coloring book Rembrandts and Picassos from my Cousin Emily’s daughters; Alyssa and Kailey.  Souvenir magnets and picture postcards from family and friends from vacations past, and pictures of friends in settings that by the memory of them make me smile. These too remind me that I am blessed with family, friends and children in my life who are healthy and happy and bring joy to me just by allowing me to be a part of their lives. But perhaps my greatest blessings are my nieces and nephew, all of whom are healthy, smart and active and whose pictures litter my fridge. A dozen reminders of the continual joy I’ll receive in watching each one grow up healthy and happy and in seeing them discover the world in their own unique way; and one reminder of a very special boy who never really got a chance to.