When we were still in the hospital, all cord stump and colostrum, the geneticist told us that he can think of no reason why our boy should not live to be an old man. A day or two before that, though, nobody expected him to survive his own birth, so I wasn’t exactly imaging a future. I was still reeling from the surprise of everything. But it’s been two months now. And even though we have major hurdles ahead of us, I’m doing what mothers do: I’m loving this baby so fully and have opened up myself to him so completely, it’s unfathomable that he should NOT always be here.
Assuming the internet, and all of its Too Much Information oversharing and showboating, continues on and on, I’ve started wondering what this boy of mine will think of me telling his story. If he can google himself when he’s older, I hope he’ll see how carefully I tried to balance sensitivity and truth. I hope he will understand how helpful it is for me to write, how much people who care want to read. I worry, of course, that these words will be found by those who don’t care, who don’t know, or who burned bridges and don’t deserve to know.
Maybe it’s counter-intuitive, the urge to blog about my baby, when my instinct to keep him safe is stronger even still. I think I just want as many people on our team as possible. I hope that should anything hurtful or wrong occur, I’d have not just my little household and our dailylife friends to help, but some contingent of the world wide web, as well. I blog because I want my boy to be known. Not for what you might see of him if you passed us walking by, but for who he IS. Not for his birth defects, but for his SELF, for his place as the little brother in such a close, close little family, for his hiccups and squinchy grins and tiny yellow union suit that both his big sister and big brother before him wore, too. We are still sort of talking, thinking, dreaming heart surgeries and limb differences -we have had a whole new language to learn in such a short time- but that isn’t who we are. We are board games after dinner, we are bookshelves stuffed to overfilling, we are pockets full of rocks and acorns, we are butternut squash muffins and backyard hens, we are steaming kettles and hot drinks and twenty-five pound bags of bulk lentils, we are music turned up too loud and dancing in the kitchen, we are rainy walks and bedtime snacks and so much funny, I don’t know where all the laughter comes from. We are a fortunate family, just for having of each other, and what I want you to know about sweet Ulysses is that he is part of us first, before anything else you might think about him.