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Tuesday, August 23, 2011

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 11th 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.

Wednesday, August 17, 2011

mediations on a boyhood...

The second greatest gift God gave man was boyhood. We often overlook it as just a step in the nature of growing older, but in truth it defines us as men.  Boyhood is the training ground for adulthood, and in adulthood we as men chase it, cling to an ounce of the memory of it, and make every effort to relive it. Boyhood is that gleam in our eye at the thought of any adventure, it’s the reason we drive too fast, watch action films, compete in any arena, continue in our feeble attempts at playing sports, and for many it was the last time they truly were themselves,
To understand any man you first should have an idea of what boyhood truly is. Whether it’s by God and natures design or by societal influence each day in boyhood is a new adventure and should be seen as such; for each new sunrise and awakening begins with "Once upon a time" for a boy. There is no true structure, no internal planning because boyhood is an eternal summer; each turn and facet begins a new epic in curiosity and daring. A boy is the hero in every adventure in his mind and he lives that adventure in a mythic world inhabited by giants who subjugate him daily with toothbrushes, manners, wash cloths, chores and soap. Boyhood involves trouble; the getting in it and the getting out of it kinds. It takes patience and sometimes a lack of it. It involves schools both primary and Sunday, teachers, parents, uncles, neighbors and preachers, and in knowing that sometimes it’s easier to ask for forgiveness then ask for permission.
I had a shotgun boyhood: much like the pattern a shotgun makes, I grew up all over the place. Specifically, in Eastern and Western Kentucky, Southern Indiana, for a short but memorable time in Ohio, and in Alabama on visits to my grandparents, uncles, aunts and cousins. We moved quite often when I was a boy and the flavor of my experiences, the lessons I learned and the friends I made are forever engrained on my palate.  
While I recall going to school and other such inconveniences of growing up, my memories are surrounded in the freedom of being a boy of summer in small towns where I could go and do anything I wished or could imagine. These were the smallest of towns; towns you don’t drive through to get somewhere else. These spots on the map were tucked away for the most part, a right or left hand turn off the road to somewhere else and more often then not miles from schools, supermarkets, and genuine civilization. These shadows of existence were wholly inhabited by those we went to church and school with. Towns taken from the last name of long forgotten men like Baskett, Ferguson, Hanson and Chandler.      
The fuel for boyhood is often supplied by parents and family members. For me that fuel came in the form of books. I was blessed with two grandmothers and a mother who regularly bought me books when I was young and I devoured each and every one of them. Television only came in three channels when I was a boy and programming for kids was little more than an hour of cartoons in the afternoon and a buffet of Bugs Bunny, Scooby Doo and the Three Stooges on Saturday morning. Cartoons added little to a boy’s imagination back then, and we didn’t subjugate our imagination to TV like kids do now. Books like Tom Sawyer, Huckleberry Finn, and The Count of Monte Cristo were read over and over again in an effort to glean any potential troublemaking and adventure from their pages. To this day I am still drawn to books about boyhood; whether they are Frank McCourt’s tragic Irish boyhood in Angela’s Ashes, Two Cents Plain by Martin Lemelman or Box Socials by W.P. Kinsella. I still read Mark Twain’s Huckleberry Finn often and in it is perhaps the best fictional portrayal of the mind of a boy in American literature. One part in particular expresses the black and white nature of a boys reasoning and makes me teary even to think about it. Runaway slave Jim and Huck are floating down the Mississippi, Huck is struck with the thought that by helping Jim runaway he is committing a sin; for Jim is the slave of Miss Watson and he is aiding in the theft of her property, something Huck begins to struggle with. So Huck decides to write Miss Watson a letter informing her where she can find him and with this act, save his soul from eternal damnation. But then Huck thinks about what a good friend Jim has been and is, how he has protected and watched over him on the river, the sacrifices Jim has made for Huck and that Jim has a wife and small children. As Huck stands on the precipice of this great moral dilemma; his hands trembling, knowing in his young mind the consequences for himself and his eternal soul, he rips up the letter and says one of the most moving sentences in fiction, “All right then, I’ll go to hell.” He chooses friendship and someone else’s well being over his own. Huck personifies John 15:13; “Greater love hath no man than this, that a man lay down his life for his friends.”  While this may be a work of fiction, the hard decisions of right and wrong, the process of deliberating and living with those decisions and the first beginnings of spiritual and personal responsibility are real in boyhood and in adulthood we see the reflection of those decisions in the men we are today.
Regardless of a boy’s circumstance, whether they live in a Norman Rockwell existence or in a series of disappointments, pain, and neglect, we as men will look back at our boyhood with a sense of nostalgia and a desire to relive a portion of it. We as men will chase that desire for the rest of our lives; achieve very little of it, and cherish the opportunity to try. So, let your boys be boys. Afford them a little extra patience when they make mistakes because they are trying to figure this world out and they are doing the best they can. Let them play, and let them explore. Let them try new things and teach them along the way. Fuel their imagination with books whenever possible, tell them stories of your boyhood, and let them teach you as well. Be proud of them and let them know it. You are growing a man so tend your garden well.