“You’d Never Know”

A few months ago, I took Fiona to my first appointment with a midwife, a lovely, friendly woman in her forties. Fiona sat in the portable car seat, and I sat up on the paper-covered table, and when the midwife entered the room, she did as expected for a woman who’s in the business of babies: she fawned all over Fiona. Big smiles. Why hello there! You’re so cute.

Fiona returned the affection by cocking her head, locking eyes with the midwife, and vocalizing her favorite consonant sound, the only one she makes with regularity—Mm. Mm.

I get a little guarded in these instances. I know this moment is temporary, a short glimpse into the way the world might encounter my daughter if she had no syndrome, and a glimpse into the way I might feel as her mother—mainly, the great relief of ordinariness. No special story here.

But Fiona’s full story was necessary info to the midwife, so I readied for the half-minute honeymoon to end soon. We were here to listen to the heartbeat of my second child. We were here to begin the care that would help shepherd my second child into the world. And even though Fiona’s syndrome was non-hereditary in our case, was what they call “de novo,” meaning the deletion of that tip of chromosome four happened by fluke in either the sperm or the egg cell that made her, which means our odds of carrying a second child with the same syndrome are most likely as low as the syndrome is rare, her missing chunk of chromosome four still casts a medical shadow over a second pregnancy. I’d already had to list Fiona’s syndrome on the midwife’s initial paperwork.

As the midwife turned her attention toward that very paperwork, I watched the gaze of her eyes. When it met the middle section of the form, exactly where I had to write “Wolf-Hirschhorn Syndrome,” I decided to jump the gun and just explain.

“So Fiona is missing genetic material.” I told her what it was and what it meant for wee Fi (pronounced Fee).

Here’s where I get to the heart of this little blog post. Upon hearing all this, the midwife, who is truly great and who I genuinely love, turned to me and said something I’d heard before. Something I know is usually meant to be a compliment, even though it isn’t:

“You know what?” Her eyes looked right into mine. “You’d never know.”

You’d never know.

I smiled. Said thank you. Knew I was meant to receive this positively. Some solace or consolation prize on the road to special needs parenting: my child’s cute. Her sapphire eyes are just wide-set enough to appear doll-like.

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But the comment is never my favorite, and it wasn’t the first time I’d heard it.

A few days before, I took Fiona to a wedding reception. While a friend carried Fiona onto the dance floor, and the two of them bopped around to Michael Jackson beats, I stood on the sidelines. A young dad asked me how old Fiona was.

This question invariably begins the line of inquiry that’s just a masked version of “What’s wrong with her?” And because this road is no fun to entertain just because a stranger is curious, I sometimes get vague. “A year.” “A year and some.” (Although, as Fiona’s rate of growth remains sluggish and as the expected weight and height climbs ever farther away from her tiny frame, even those answers are enough to raise suspicion.)

Sometimes, I just try out strict honesty. I told this wedding guest straight up. At the time, she was eighteen months, so that’s the answer I gave. He said he wouldn’t have guessed any older than one. I decided to give him the brief explanation, delivering the news as I usually do to a near-stranger: as if I were reporting my child’s astrological sign or preference for cheese. Just a fact. My theory is that this straight-forward tone gives people the cue to treat Fiona’s condition as normal.

He replied, “Well, she looks normal.”

I got what he was saying: she could pass for a typical kid. Otherwise known as, People would never know anything is “wrong.”

My reply to him was immediate. “She is normal,” I said, as gently as I could. I didn’t want to become the ableism police at a wedding, and the guy seemed genuinely nice. “She’s normal for her.”

I looked toward the dance floor, where Fiona was squealing and gasping in ecstatic glee. Seriously. Nothing lights this child up like house beats and dancing.

I don’t know if the guy quite got what I meant. Wedding DJ’s are loud, after all. I meant a deletion on a chromosome is normal. It’s the way life sometimes shakes out. It’s an occasional happening in meiosis, and it’s a normal way of life for Fi.

And what I really meant was, even if my daughter didn’t have the facial features that allowed her to “pass” as a typical infant, she would be “normal.”

You’d never know she had a syndrome. Well at least she looks normal.  The comments create a box into which Fiona only superficially fits, a box that perhaps she wouldn’t fit into even cosmetically if her syndrome had shaken out a little differently. My daughter has been able to “pass” for “normal,” for able-bodied, as long as you don’t know her age. But this is temporary space. I don’t know when, and I can’t predict quite why, but there will come a time when Fiona won’t “pass” as typical to strangers, when the staring we get at the store isn’t because she’s so freaking adorable and social that people have to stop and gasp and smile at her, but because they detect something is different, something is “not normal,” something is “wrong.” She might make noises instead of words at an age when people expect language. Or her words might come out unexpectedly. She might use braces and a walker to take steps, or her steps might be stilted and strained, or she might be in a wheelchair.  When folks say things like “You’d never know,” or “She looks normal,” I have a quiet wish that they’d celebrate, not her cosmetic cuteness, but her whole being, disability and all.

The well-meaning compliments, in other words, are a reminder that this world cares very much about a category of “normal” that Fiona grows increasingly unable to fit into.

We are in a holding pattern. We can “pass.” We won’t “pass” for much longer. In the beginning, this situation allowed me to cope with the grief of an unexpected diagnosis without simultaneously having to handle the reactions of strangers. Which I appreciated. The pity some parents get. The averted eyes. The staring. The unsolicited messages about “God’s plan.” Grief is hard enough.

But my grief is no longer fragile. It’s no longer a broken bone in need of a protective cast. There’s a scar there, yes, and sometimes I get an unexpected ache when I do this or that, but for the most part, I’m able to go about business as somewhat usual. So what I want is not an assertion from near strangers that yes, my daughter can still “pass.” What I want is to hear that she doesn’t have to. That this world is not so interested in normalcy. I want to be able to say to a near-stranger, “She has this chromosomal abnormality,” and I want the near-stranger to be genuinely open and cool with that. Not eager to cover it up with platitudes. Not ready to frown at a life they think is now “tragic.” Not itching to turn away, their minds singing the word “awk-waaard!” But simply open, and curious, and just as happy to know Fiona as they were before they knew.

We just moved to a new state (Vermont), and thankfully, there have been a whole host of folks who’ve done just that. Moms at playgroups. Parishioners at my husband’s church. Seriously: thanks, people! You’ve rocked.

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9 thoughts on ““You’d Never Know”

  1. I don’t know if this is reassuring, but I contracted polio at 16 months. (My Mom was only 19 at the time.) I was never supposed to live and definitely not walk. People stared at me all the time and it hurt me–still uncomfortable with it. When I would cry to my Mom, she would ask me if I would rather someone else had this affliction. No…
    It’s definitely a struggle but not insurmountable. Fi seems to have a lot of spirit–and her loving parents definitely do. Love you guys!

  2. All I can say is we miss you and Fi at Lebanon Library.When I saw Fi,all I saw was love.Maybe she will be a great teacher to all who meet her.

  3. Every time I read your blog I feel like I should be taking notes…you are doing a service to so many parents helping us learn how NOT to be hurtful! We missed you at the St. Patrick’s Day party last weekend (and tell Justin we missed his beer).

  4. You are all loved and I am glad you are in my life…not past tense of ‘were’..you are..Happy Holy Week..Happy Easter

  5. Congratulations!!!! When is the new baby due? Lovely, as always, to hear news of you. Love and all good wishes…..Alice and Norman

    Sent from my iPad

  6. Just stumbled on to this gem of a site. I’ve enjoyed reading your thoughts, fears, frustrations and love. Especially this, “I want the near-stranger to be genuinely open and cool with that. Not eager to cover it up with platitudes. Not ready to frown at a life they think is now “tragic.” Not itching to turn away, their minds singing the word “awk-waaard!” But simply open, and curious, and just as happy to know Fiona as they were before they knew”.
    I’ve a friend whose baby has Poly Cystic Kidney disease. I want to send her a link to your work here and on Salon.com.
    The awkward is so… awkward. The sudden rush to say something one thinks will reassure the other, all the awkward dancing around what simply is. Our culture is often too focused on child as accessory and reflection/extension of oneself. Life is so fragile, so precious, and able to change everything in an instant. I don’t have children, btw. But for whatever reason, have always been bothered by the awkwardness and silence that pervades when we learn of a person with other than “perfect” or “normal” conditions or physical attributes.
    I hope you keep writing about this, and sharing your family’s experience with us.

  7. What beautiful comments! My son also has a genetic micodeletion, but of the 7th chromosome. He has Williams Syndrome. What you have written here is everything that I have thought and felt, but you actually put words to it! Beautiful words at that! I’ve heard these comments many times as well. And it is very hard when a stranger asks his age and then there is the unavoidable silence as they search for something to say. I frequently get the…”You’d never know” as well. Thank you for making others aware of this silent pain in our hearts, yes the scar is there, but it will never completely heal.

  8. Pingback: Sharing some Bloggy Love

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