The Darkness

“The darkness is all he’s ever known”. I was having a conversation last weekend about Carter’s personality and whether his happy go-lucky disposition was something he was born with or a coping mechanism he used to adapt to the card Life dealt him. I said at first, that I thought maybe he was this way because he knew how dark life could be, and he had gained an appreciation that takes decades for most people.  “But the darkness is all he’s ever known”. The response resonated within me a truth that I had tried to ignore. Carter’s life had never been filled with the light that fills a newborn’s eyes. His eyes, instead, showed pain and hurt. He didn’t fall asleep knowing the safety of a night’s sleep. Instead, he knew nights filled with tears and fear. I always wondered why he held no grudge against me for allowing his pain to continue, for not being able to make him better. But now I realize, he didn’t know he was supposed to feel any differently. I never understood how he could empty the contents of his stomach over and over, bottle after bottle and still give me a smile that melted my soul. Now I do.

 His world is different than ours. It is probably this way for anyone suffering from a disease, syndrome, illness or any other chronic condition. The only difference is that Carter was born this way. He doesn’t know normal like we do. He has nothing to compare it to, and in some ways, I wonder if that makes him one of the lucky few. Someday, we will find a way to control his FPIES. And he will walk out of the dark for the first time in his life, and he will really feel the light that the rest of us take for granted.