It is all the things that you think should have solutions: he vomits every single day, he drools excessively when he sits up, he seizes in big fitful clusters every couple hours and small subtle spasms every few minutes, and his oxygen levels drop dangerously low while he sleeps peacefully. But no, instead we are told this is just part of who Braxton is, as if we were talking about how a child has a happy disposition and a talent at music.
Braxton is a complex child made unique by a gene mutation that altered the way his brain formed. This slight change to his genetics made his life difficult. His eyes fail to see, his hands fail to hold, his legs and feet fail to stand, his throat fails to swallow. He is so different from his peers I am often floored by the “normal”. I watch little boys legs run fast, pedal bikes, kick balls, and am amazed. Someone offered my child cake and I didn’t even know what to say, because eating cake is so far away from our realm of possibility, since Braxton eats through a tube in his stomach and is on a diet that doesn’t allow sugar. Sometimes other parents say things that hurt without knowing it, like saying “it doesn’t matter if it’s a boy or girl as long as it’s healthy” or “with toddlers we are luckily to just make it through the day with everyone alive”. I tell my husband that today was a good day, and he reminds me that our good days are an average person’s worst nightmare. The altered gene didn’t just change Braxton, it changed my place in the universe. Living in the tear, waiting for the drop.