I Was a Knucklehead

Lately, a story from my past has been replaying in my mind, one that makes me cringe at my former self. I once spent a summer working with a woman who was about four or five months pregnant. Each week I watched her bump get just a bit rounder, until finally the summer ended and she was not yet beach-ball bursting, and we parted ways. This was back when I was in my twenties, when motherhood for me was a foreign country I planned to enter someday but was otherwise happy to nod at from a distance.

About six months later, a friend asked if I’d heard about my former coworker’s baby. I hadn’t heard anything. I assumed the baby was out and about in the world and doing whatever it was that babies did. What did babies do? I didn’t know. I was a busy grad student.

My friend said, “The baby has Down Syndrome.”

And my reply was, “Oh, how sad.”

And that is the part that makes me cringe.

The friend agreed, it was sad. And then we talked about how sad it seemed. Down Syndrome. It seemed like an end. Like a deflation. Like the helium party balloons all getting popped. We talked about how heartbroken she must have felt. We talked about how she would probably not want any other kids after that, since obviously she made Down Syndrome babies, which, in my idiot mind, was a tragedy.

Again, I was a knucklehead.

The question I ask myself now is, Why? Why did I think Down Syndrome was such a warrant for grief?  A few months later, I actually did see my former coworker from a distance. It was a far enough distance that it would have been awkward to shout hello. So I just went my way. But there’s another reason I didn’t rush up and say hi: I thought she was probably living in a shroud of grief. I imagined a black veil over her head. How sad, I still thought. All those months of pregnancy, of expectation and hope, and now she’s caring for a Down Syndrome baby. She must be miserable.

Good God, how I cringe at myself now.

Here is what I should have done. I should have jumped for joy at the birth of her child. I should have greeted her in the hall with a warm smile and a “Congratulations!” I might have asked how she was feeling, knowing what I now know about post-birth recovery and perineal tears and what-not. If she showed me pictures, I should have commented on how gorgeous her baby was. Because no doubt he probably was. And, because I now know a little about the risks that Down Syndrome brings, I might have asked with compassion how his echocardiogram went, and if they liked their cardiologist at the children’s hospital. And how was nursing?

But I say this all because I now live in the country of not only parenting but special needs parenting, because I now know what “echocardiogram” is, what “perineal tear” is, because I know how important it is to like your child’s specialists and I know how much of oneself one must give in order to get a child to latch late into the night.

Instead, I clammed up, believing she wouldn’t want to talk about what in my mind was like birthing a funeral.

Again, I ask myself why? Why did I ever think a child with Down Syndrome was a bundle of grief, not joy? Because I thought a life of cognitive disability wasn’t worth living? Or was less worthy of living? Was I really that ableist?

It’s tough to admit, but yes, before Fiona I think I was probably ableist. Which means subconsciously I believed that an able-bodied life, in particular a cognitively able-bodied life, was superior to a disabled one.

Apparently others believed the same. In several regional studies,  80 to 90% of mothers chose to terminate their pregnancies when they learned through prenatal testing that their child had Down Syndrome. Regional studies have their limitations, as the article here explains, and even before Fiona, I’d decided I could never terminate a wanted pregnancy simply because the baby wasn’t chromosomally typical, but still, I think we can agree that there’s a cultural bias against having a Down Syndrome baby, or any baby, for that matter, with a chromosomal anomaly or special need. A baby that’s not medically “perfect.”

And for all the practical reasons, I get why. Sometimes when I sneak a peek at the computer screen over the shoulder of one of Fiona’s many specialists, my stomach sinks at the list of diagnoses. Atrial Septum Defect. Pulmonary Valve Stenosis. Hydronephrosis. Hypotonia. Febrile Seizures. Delayed speech. Delayed motor skills. The list goes one. It’s a tall column of medical “problems.” It seems like the older she gets, the more they add to that list. From a medical standpoint, she is far from “perfect.”

But her life is not a bundle of grief. If you’ve met her, you know that Fiona adores being in this world. Really adores it! She is constantly clapping. She’s smiling at least 50% of the time. My sister recently asked if, like a dolphin, Fiona’s face just gave off the permanent impression of happiness. “No,” I said. “She’s that happy.”

She seeks out strangers by eyeing them, cocking her head, and smiling, simply because she wants to connect. Just yesterday, a woman with dark-brimmed glasses and dangle earrings became enchanted with Fi at the grocery store. “Well, hello!” I heard someone say as I was scrutinizing the protein bar section. I turned around to see the woman at my cart, peering down at Fiona, like they were related.

“She’s so friendly!”

I agreed.

“How old is she?”

“16 months,” I said. But of course Fiona looks 5 months. So I explained that I thought that was why people were often so captivated by her. Socially she’s move advanced than she looks.

God bless this woman, who corrected my tendency toward uber-practical rationalizing. “Or it’s her big soul!” she said.

“Well, yes,” I said, and laughed. “There’s that too.”

My girl’s got a big soul. They haven’t developed prenatal genetic testing for that yet.

Here’s a helpful quote from Wikipedia of all places: “The ableist worldview holds that disability is an error, a mistake, or a failing, rather than a simple consequence of human diversity, akin to race, ethnicity, sexual orientation or gender.” Sometimes I like to imagine that we flip the ableist worldview on its head. The condition Fiona has is extremely rare. 1 in 50,000. Sometimes I like to imagine a world where Wolf-Hirschhorn syndrome children are desired. What if, for whatever reason, people wanted Wolf-Hirschhorn children? People got pregnant and hoped against hope that they fell into that 1 in 50,000. “Oh, wow!” they’d say. “You have a Wolf-Hirschhorn baby! I’ve never known anyone who has one. You’re so lucky!”

I don’t mean to minimize the medical difficulties of Wolf-Hirschhorn Syndrome. They can be quite profound. What I mean to do is visit an alternate reality, just for a moment. Fiona’s syndrome means that she will probably need some kind of care her whole life. But as a parent, what if that were a coveted position? My daughter may never leave me with the sadness of an empty nest. There’s a privilege in caring for her gem of a self. Fiona’s syndrome means that she moves slowly from developmental stage to developmental stage, making the whole “They grow up so fast” cliché all but a mystery to me. What if this slow development was viewed positively: a chance to smell the roses, to see in all its minutiae the subtle learnings of a little girl? And as for the hardest, scariest aspect of WHS—the seizures and the consequent risk of early mortality—well that one’s harder to turn positive, but what if we respected it as an opportunity to live life in the moment? To appreciate who we have when we have them. And love fiercely until we lose.

You could speculate the same for children with Down Syndrome, or Autism, or any condition for that matter. What if, in the eyes of hopeful pregnant women, these children were the coveted ones? Is it just a mental act in absurdity? A practice in naivety, ignoring the difficulties of any given special need? I don’t think so. I think it actually teaches us something. It teaches us to remember that cultural preferences are to some degree conditioned. And it teaches us to see the value in people who are differently abled.

The other day, a friend of mine said she appreciated one of my former blog posts, about things not to say to a new mother of a special needs kid. But she also wanted to know, what should she say? What helps to hear? It was a fair enough question. At first I didn’t think I had anything to offer. Then I remembered the single best thing someone had said to me about Fiona. It was at the start of her diagnosis, when the pediatrician suggested that perhaps she had something chromosomal. And my sister said, “Whatever she has, nothing will change the fact that she’s beautiful, and we love her.”

Nothing will change the fact that she’s beautiful, and we love her.

Those words got tattooed somewhere in my soul, and they carried me forward.

Should you ever find yourself in a position where a friend or family member or even just an acquaintance has a child that most of society would consider “less-than-desirable,” my advice is to congratulate them. Do it wholeheartedly. Sure, you can offer them the space to vocalize their grief. But you don’t need to grieve with them. Tell them their child is beautiful, and perfect, and loved. Tell them their child is a profound gift to this world. Because it’s all true. Though I didn’t know any of this until Fiona. Yeah. That’s how smart she is.