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.

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6 thoughts on “echocardiogram

  1. Rachel OConnor

    When we were at the waterpark the other day I approached a woman sitting in one of the warming tubs with her 5-6 year old obviously adopted, obviously cleft repaired boy. The moment I started to ask her where her boy was from you could see her shoulders tense, her body shift into protective mode and her words were caustic and short as she only spoke to the boy and asked him if he would like to tell me where he is from. The little boy looked at me and told me he was from China. I told him that I had a daughter from China and at that moment, Willow walked up to the tub and splashed in beside me. The woman saw her cleft scar and in an instant all of that tough shell melted and we exchanged adoption/surgery stories for the better part of an hour. You already have started building that protective shell for Ulysses and you are the perfect mama bear to help keep him safe out there in the world. Curious people are no less harmful to him just because they are only curious and not mean. People amaze me with their stupidity and their lack of tact. I have no doubt that you are already starting to build that community for him where he will be safe and loved.

  2. I can’t know what you are going through at all, because I have had four babies with no medical issues or disabilities, so I can only try to imagine. However, I know this: in our little group, Ulysses will be accepted and loved for who he is no matter what he is physically missing. There will likely be questions from curious little people, but we already have tremendous affection for him and gratitude that he is here at all. I can’t speak for others, but in our family, we are not thinking that we are glad it’s not us, but we are so cognizant now of how lucky we are. And it is luck or fortune or fate or whatever you want to call it. It could have been us and why it wasn’t, no one will ever know. You are such a conscientious mother with such a healthy lifestyle and sometimes other women who have terrible habits (even drug and alcohol addiction), have “perfect” children. It’s a spin of the wheel, a toss of the dice. All of us with completely healthy babies and children are incredibly lucky and I think of that often now.

  3. Julia says she hates being in a club that she never wanted to join and also she hates people who say, “God doesn’t give you more than you can handle” and other nonsense like that. Or when they say, “I could NEVER do what you do” because she’s like, well aren’t you lucky you haven’t had to find out?

    Also? That boy has the cutest baby nose I ever saw.

    Also also? I am sending your kids some “welcome baby” gifts but I need to wait ’til after the holidays even though I was hoping to time it better.

    • oh man, i have a post brewing in my head about my reaction to God talk, in particular. maybe i’ll feel bold enough one of these days to write it!

      and also? thank you.

  4. I know it is such a hard road you are on, but being one who didn’t carry that little guy in my womb and knows him just from the outside, I still think of him as perfect when I look at him. I know it kind of bypasses the very real issues he has, but I can’t help it. I love him a lot. I suppose that is the trick with anyone in these situations, knowing them for more than their bodily situation. Strangers won’t be so lucky.

  5. It’s so strange to read these posts and feel such a kinship and feel like I could be reading a page from my own journal (a much better written page of course). I hope it helps to know you’re not completely alone in this. Well, as unalone as you can be with a perfect stranger from the internet that is.

    First, the whole perfect thing. That was hard word to process and come to grips with. I even remember being pregnant and watching the episode of The Office where Jim and Pam have their baby and their baby reaches her little arm up and my husband and I looked at each other and just sort of …nothing. We just knew…such a basic, common, simple gesture and one we weren’t going to experience this time around. And at the same time, like you, I also felt (feel) that my baby whose physical differences are very stark, is still perfect. I just don’t want to hear it from someone else who might very well be sincere–but since they are not ME and they don’t love this baby the way I do–I might interpret as condescending.

    I remember worrying about people seeing her for the first time(s)…and I have to say, most people are very sweet and kind. Sometimes I feel like they’re doing the whole “Oh look it’s a special needs baby lets be overly sweet and saccharine” BUT that being said I’ll take it. And there are even the occasional run in’s with people in the limb differences club and then just other mothers and grandmothers who just want to share their motherly and grandmotherly love…and I’ll take it. All this to say, that it has gotten normal. She attracts attention, but it is usually positive attention. However, I very much worry about the coming years and she starts to understand what people are saying and as she starts to comprehend just how different she is. The ebb and flow of it all….

    Hugs to you and that precious baby.

    PS. I love Parenthood.

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