It’s just a fancy way of saying a heart sonogram. Yesterday, my infant son had his second such scan, the first occurring mere minutes after his birth. This time, we shushed him and rubbed his head to comfort him so we could get as much information as possible from that grainy grayscale view. How long until heart surgery is required? Not if, but when. Soon. Next month maybe. I cannot emphasize enough how few interactions we’ve had with doctors before this. My daughter hasn’t seen an allopathic physician since the week she was born. I took my six year old to a family doctor exactly one time, when he was two, because I thought maybe a sniffle had turned into an ear infection (it hadn’t). Between the two of them, we have never had one antibiotic prescription or a broken bone. But now. Now we see specialists and have files and, already, a fat stack of medical bills accumulating on my desk.
Despite this new very doctor-y life we’re living, I’m still attached to our Healthy identity. It might sound contradictory, but my new son isn’t sick. He’s disabled. In fact, he’s so healthy (knock on wood) that he’s growing pink and plump despite his serious heart defect. But don’t ask me for weight specifics. I’m rather defensive about such details. He is missing major bones and related supporting anatomy. Any idea you have about what a baby should weigh is meaningless when you’re discussing a baby with limb differences. I haven’t sent out birth announcements for Ulysses yet, like I did with my other two. I don’t know that I will. Certainly his birth deserves announcing, but I don’t trust the masses to understand. I wouldn’t include his height and length anyway. (how do you measure the length of a baby with tiny legs that do not extend straight?) I guess I haven’t puzzled out an appropriate way to tell people, outside of this blog, about this boy.
I think about all the birth announcements I’ve seen and received in the past, all the Perfects and references to Ten Fingers and Ten Toes. And the implication is that we’re celebrating the perfection. (and, yes, I know we aren’t any of us “perfect” but that doesn’t stop it from being a word bandied about so often, especially about babies.) Is anyone prepared to celebrate imperfection? I’m six weeks into knowing this boy and his unique body and I’m still not prepared. I’ve had thirtysomething years of knowing exactly what hands and feet and legs look like, so forgive me if his body still catches me by surprise. If this is my reaction, and I nurtured him for nine months within and hold him to my breast around the clock now, what can I expect from anyone else?
We’re still staying close to home. I’ve zipped out solo for quick errands but trips with the baby have been relegated to doctor visits, save for a few walks around town. Last night we had a sort of spontaneous social call, a casual dinner at the home of dear and trusted friends, and it was a relief to be out like that, to be and laugh with good people and not worry what they might say about our wee boy. And I do worry. How could I not? And if you don’t understand my fears, my hesitation, I will assume you’ve never been where I’m at. It’s one thing to proudly introduce the world to your “perfect” baby but it’s another thing entirely, another difficult, complicated thing, to be so proud of such obvious imperfection. I have been on the side of parenting “perfect” babies for enough years (nearly 13!) to know what I’m talking about and I can tell you: it’s very different. Confession: I fantasize about sequestering ourselves at home indefinitely, allowing only the safest, most kind and humble folks to know him. I’ll be the burly bouncer at the door, checking names off a list. Would you make the cut?
If I am being honest here (and I am, because if it’s not sincere why say it?) I will tell you that it’s a burden knowing that people look at us now and think, whew! so glad that’s not us. You might look at your “perfect” children and congratulate yourself for their whole bodies. You might have won the figurative God lottery with your blessedness. But if it’s never winter, summer isn’t so clear and warm. If you’ve never been hungry, dinner isn’t ever as delicious. If you can be in the middle of figuring out a new, heavy challenge and still find light and laughter and love, slide over here and sit by me.
In the cardiologist’s waiting room yesterday, there was a lovely family with three middle school aged children and an infant. The smiling baby girl was the patient and it was clear that she had a birth defect. My other children were not with us and our baby was snuggled up asleep against my chest, like a limp semicolon, or a grubworm. His defects were less obvious, all wrapped up and quiet. I wanted so desperately to lock eyes with that mother, to let her know that I understand. To see my understanding reflected in her expression. I want to know people who know what it’s like to hold imperfection in their arms and love it completely. Because that little face up there? All he wants is love.