Saturday, September 19, 2015

Thoughts of tomorrow

Today we made a morning stop at the blood lab to check all Sam's levels because his seizures persist. We're trying to figure out the culprit - low sodium levels caused by one of the meds or perhaps he isn't at a therapeutic dose for the new medication. Or maybe this isn't the right medication at all. 
Being a Saturday morning, the hospital was quiet and easy to maneuver. While we waited, we heard, "You can come in, Maria" to a family accompanying their grandmother. Sam turned to them with a big smile and sing-songed at them, "Mar-ri-ia" to their delight.
Sam greeted the two phlebotomists with a big smile. It took him a while but he answered their questions about his name and date of birth. Everything went smoothly and Sam jumped up and announced it was "treat time." He would like a chocolate chip cookie, thank you very much. The staff waved goodbye and wished us well. 
Next stop, coffee stand for reward time. Sam, still sporting his smile chose a chocolate donut instead. The person nearby looked up and began smiling too.
When I noticed I had forgotten my cell phone we headed back to the hospital - the security folks help us and took a moment to chat with Sam. On our way to the door, Sam suddenly turned, calling, "Hello Ethan!" to a man to our left. The man glanced over and I said, "You must look a lot like someone named Ethan because my son is very eager to greet you." He stopped to talk for a moment to Sam and then lamented to me that he'd rather "look like Robert Redford." 
As I drove home, I reflected on how positive the morning had shaped up. Sam is so much more comfortable - even interactive - with people these days, in spite of his communication challenges. He has an easy smile that seems to put people at ease. 
As with other mornings like these, the crystal ball of Sam's future tells me to worry less about his happiness when I am no longer part of his life. He will carve a path and find happiness wherever he is. It is his nature. 
That is only half of the story.
Later this morning I watched Sam become agitated at home. The familiar roars and number yelling surfaced as he ran around the house screaming and crashing into walls. I sat with Sam as he scripted random lines and verses until he finally calmed down enough for me to figure out his stomach was upset. The earlier donut had come back to haunt us. 
The happy guy I described and the out of control young man in the last paragraph are both part of the Sam I live with daily; the Sam I love. 
Happiness isn't the only measure of Sam's future success. While I may have confidence that Sam will find happiness where ever he goes, without the ability to communicate in moments of duress, Sam's safety will alway be at risk. His health will be at risk. And I have no solution for that. So while I don't really care at this juncture what caused his autism or that autism is part of our lives, I care passionately about treatments that might one day ensure his safety and provide him inner peace.

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