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.

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10 thoughts on “I Was a Knucklehead

  1. and she totally rocks that scarf!

    Yes to everything you say here. This point of view makes us better mothers, friends, caretakers, teachers–all kinds of human beings. I remember even as a child when my older sister, a Type 1 diabetic, would have severe low blood sugar reactions and people would ask, “What’s wrong with her?” my mother would say, “She needs to eat something. This is how you would act, too, if your blood sugar was really low.” It’s complicated having a sibling with a chronic illness, but it surely made me a better mother of my own Type 1 diabetic son. I was devastated by the diagnosis when he was 13 months old because I had watched my sister struggle (in a different time with far less technology and only 1 kind of insulin) to control her diabetes. But it didn’t take long for my thinking to shift: We can do this. Yes we can 🙂

    • I totally agree with your statement “This point of view makes us better mothers, friends, caretakers, teachers–all kinds of human beings.” I posted in FB page about parenting.

  2. I missed your posts. They never fail to pull strings in me that both make me sad and thankful at the same time.

    I have my own story that I cringe at every time I think about it. My firstborn is the perfect child. Healthy, easy going, smart. Super smart. And because he was not exposed to English at the house we were told about this preschool, for kids who are at risk of not meeting their educational goals. For whatever reasons – either being delayed because of some condition they had, or because of being billingual, like it was in our case. He got tested, and he was said to be at the bottom of their priority list. They suggested we started looking at other preschool options too. At that moment I remember feeling a relief. I didn’t think my perfect-super smart child deserved to be in a classroom with kids with intellectual disabilities. I thought they will pull him back, they will not allow him to progress at the pace he otherwise would.

    I feel ashamed. Deeply ashamed. Because now I am on the other side. Now I get it. I want Denise to be in a classroom with typically developing children. To learn from them and progress faster…

    Thanks for sharing your story. Fiona IS a gem 🙂

  3. Heather, your mom and dad-in-law are two of my most favorite people in the world. I have known Justin since he was a young boy, and I can’t imagine anyone more special in their lives than you, and Fiona. She IS a beautiful child. And I know how much she is loved . . . also by those of us “on the fringes”.

  4. Thank you for this lovely and thoughtful essay. When I was pregnant for the first time, I agonized about whether or not to do genetic testing and about what I would do if I got “bad” news from such a test. Until one day when I was chatting with my father and mentioned this. He said, “Well, that’s a decision you have to make yourself, but, you know, in my practice (my dad was a family doctor), I’ve seen a lot of kids with Down Syndrome and they seem pretty happy and, actually, their families do, too.” I thought, “Oh yeah, of course,” and felt a huge burden lift as I put my question to rest. I wouldn’t be doing the Down Syndrome test. One less thing to worry about. I know that not all disabilities are the same and I don’t judge people who decide that it might be best for them to avoid severe difficulties. But I do sometimes find myself wondering if our ability to make these choices reshapes our ability to deal with (and even embrace) difference in babies, children, and adults. I even wonder if it chips away at our capacity for sympathy and care. Maybe that’s going too far, but still, I wonder.

  5. Pingback: Love no matter what | "MOM!"

  6. Love it once again! So much I can relate to here!

    ‘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.”’ So true for my Rissa Bear too.

    And this…
    “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?” I recently told someone something similar, how I look at her slower than “normal” development as me being lucky to enjoy her as a baby longer. The cuddliness, smell and pureness.

    And when you speak of coveting the opportunity to care for a special needs child, I think you hit the nail on the head, it forces us to “love fiercely.” How many people (especially these days) spend their days trying to blot out feeling? Numbing themselves with the current pill or the latest merchandise? Having a child with special needs puts things into perspective, in my experience, I have always wanted to live passionately, but have been scared to, for fear of experiencing the pain of loosing. Now I know I have no choice, because like you, I have no idea how much time we have, the opportunity for “make-up” may not be there.

    Finally your last comment…”That’s how smart she is.” You are singing my song lady! I am so glad I found you 🙂

  7. Your thoughts are so lovely, refreshing and insightful. As a co-conspirator in this secretly wonderful, but oh, so overwhelming world of parenting a child with special needs, I completely understand how much hindsight and first-hand experience change your world view. After having a typical first child whose brilliance and “normalness” we so took for granted, my husband and I found ourselves staring into the pale green eyes of our daughter Talia. Just after her birth, I sat in the tub holding her, gazing at her features, knowing that something was quite different from her older sister. Instinctively, I opened her tiny palms, looking for a tell-tale, steady, unrelenting crease running across her little, wrinkled hands. When I saw it, my heart flipped, I closed my eyes and tried to swallow a dry, sharp breath of air. My husband, sitting behind me, arms around me, gently asked, “Does she have Down Syndrome?”

    The next two days and nights were a black hole full of grief, sadness and fear about what her life and our life would be like in six months, a year, ten years, thirty years. Soon, we realized that we needed to celebrate her, not grieve her. Our joy and hope spread rapidly and we’ve never looked back.

    Of course that all feels like yesterday. Seven years later, Talia is still a beacon of love and hope. She is a smart, funny, empathetic, beautiful little first-grader. She is a magnet for others’ affections and admiration. She makes me a better person. Just by being in my life. It sounds like Fiona has a lot in common with Talia–and I’m not talking about chromosomal aberrations–I’m talking about love.

    Thanks for sharing your thoughts, Heather. I’m glad I found you.

  8. Pingback: She’s No Angel, and I Love That | Star In Her Eye

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