There is almost a feeling of reverence to the hallways that are decorated with jungle scenes, splashes of bright colors, clean flowing curves and glass fronted doors where both curtains and blinds allow for privacy. Behind every closed door is a patient and each one has a story. These patients are children, from new babies up to nineteen years old. This is an intensive care unit so many are in for a fight to live.
The nineteen year old we are leaving a lengthy visit with is my nephew and God has again blessed Alex so he beaten the odds. Again Alex has proved medical science to not be omnipotent and tomorrow he will return to the special needs home where he’s lived away from his family for seven years now. It strikes me anew how terrible this is, a son, brother, nephew, uncle- separated from those who love him-because his day to day needs are best met in out-of-home placement.
Being realistic is a fault with me at times, it falls in line with the battle I have with being cynical. I know, in my head, how impossible it is for us to care for Alex at home. His body is nineteen, his development between a two to six month old. He has no control of his bodily functions, must eat through a feeding tube, wears diapers, can’t speak, see more than light and shadow and no one is certain of how well he hears although he does. He can’t bathe himself and a stroke earlier in life left him with hands that curl into fists. Alex also usually fights whatever is being done for him, not able to grasp why, or who, or what is being done. He has incredible strength for someone whose only exercise is the physical therapy he receives and his squirming all over his bed.
Yet Alex laughs when teased or tickled. He responds to the sound and touch of his mother and sisters. He even seemed to remember me. The doctor’s tell us this is involuntary responses, Alex can’t know us, the bit of brain stem he has doesn’t include the part we use for those functions. I say baloney! Just his sisters talking to him lowered his blood pressure twenty points a few days ago and today, he’d fallen asleep holding my hand with his older sister curled around him and the sleep was so deep the nurse came in to see if he was alright.
It had been such a good visit, Alex was so much better and out of pain. He was off IV medication and didn’t fight his oxygen tubes nose piece as much as usual. He’d basked in the attention of we five females, even blushing and grinning when I teased him about flirting with his nurses. We got some great pictures. It seemed so unfair to know we had no clue how long it would be before we were all together with Alex again.
Now though we have to leave and his sisters and cousin walk around me, his mother lingering for a private good-bye and a flash of intense anger fills me. Gripping the arms of my wheelchair I fight a scream within me. I want to ask God why and how these terrible and cruel things happen to children like Alex who was two weeks old when spinal meningitis ravaged his tiny body.
I know the medical explanations and I know the OBGYN to blame and I know that God has touched hundreds of lives through our little man. I know death and disease entered the world when Eve and Adam sinned. It just hits so hard when someone you love suffers.
The rage disappears as quickly as it comes. I can still feel his hand in mine and the soft thickness of his brown short hair. I can still see his smiles and his “I’m up to something smirk”! We have regrets for him, but he has none.
He doesn’t miss football or baseball, music or flying kites. He doesn’t miss ice cream or peanut butter and jelly sandwiches or chocolate milk. His body isn’t addicted to caffeine and sugar highs. He doesn’t know any of this exists. The world he knows is complete.
My anger is replaced with wonder. He is content with his basic needs met, the love of his family when they are there and rediscovering his ears everyday. He is securely in the hand of God with no doubt, no fear and it never occurs to him to sin.
He is beautiful. He is blessed. He is a beacon of belief and hope in this ever darkening world. This boy without a brain has far more than we who have all our gray matter between our ears can fathom. It all depends on your perspective.
The suffering of the innocent will not stop until Jesus returns. The poor will always be with us. Human needs will always be unbalanced and impossible to completely meet. Because we are human and fail our failures will result in the pain of someone else, even doctors who use bad judgment and whose decision wrecks a life. It will never make complete sense until God can show us the much bigger picture. That doesn’t mean we stop trying to help and give hope to those who need it. Our help makes a difference to each one God reaches through us.
Meanwhile as we leave the parking deck and know soon Alex will leave in an ambulance to return to his care facility we feel the sadness of parting. We make plans for the future. We rejoice in every one of Alex’s smiles. Discuss possible care facility placements closer to home now that Alex is an adult. My perspective changes.
If Alex can be content and happy why can’t I? Sure, I agree Alex doesn’t know any other life than his, but so what? Our tendency as humans is to always look for greener pastures but not Alex, he doesn’t know they exist. Maybe there’s a part of Alex who really is more blessed than the rest of us. Maybe it’s all about perspective.