Wolf-Hirschhorn Syndrome made national news a year and a half ago, and not for good reason. One member of our community was denied a kidney transplant explicitly because she was labeled “mentally retarded.” (Palm to face. For starters, Dear Doctors, we don’t use that term anymore.) Amelia and her family wrote a blog post that rallied not just our small WHS community but the entire nation. Major news groups like CBS and ABC picked up the story. Check it: Amelia’s family now has this news to share. Many thanks to any and all folks who rallied for her and for all people with disabilities, cognitive and otherwise. There is only one kind of “able-bodied” person on this planet, and that’s a temporarily able-bodied one. Who knows what will befall each of us tomorrow. We are born needing the care of others, and we will likely die needing the care of others. So when you reach out to support the health and dignity of a person with disabilities, in some sense, you are reaching out to support the health and dignity of yourself. Yay for Amelia and co.
Let’s start with a picture:
I saw this image as I was filling the back of the car with all the gear necessary to take two kids to a campfire (highchair, nursing pillow, picnic blanket, pajamas, diaper bag, beers….)
I was struck by the weight of it—the responsibility of two kids. The car seats they need to keep them safe. The calories we keep in their bodies. Their bodies we carry because they aren’t mobile. The wipes and the diapers and the diaper cream and, for one, the seizure medication and, for one, the calendar of five specialists and three therapists and, for both, the books on how to be their better parents. The hoodies we tote in case of a chill. The boogies we wipe from their eyes. The cries we soothe in the different ways that they need soothing. And on and on.
And I was struck by the cost of that weight. My hunched back, my neck muscles rock-hard from nursing. My irregular showers. My rushed or sometimes non-existent writing time. The dust settling on my meditation cushions. The ten postpartum pounds I carry. The stretch marks and the memories of labor pains and the weakened core muscles. The grumpy mood brought on by the broken-up sleep because Kid A woke up at 3 and then 5 and then 6 and then 7 and Kid B woke up somewhere in the midst, and Kid A wishes to sleep beside a warm body so I must sleep in a way that 1.) does not make any of my limbs go numb and 2.) does not risk suffocation of Kid A and 3.) still allows me to doze into some semblance of a restful state.
This is just the surface, scratched. And I mention the cost and the weight of these two kids because my body felt them poignantly as I loaded the hatchback with still more weight—the diaper bag, the highchair, the nursing pillow, etc….
And I mention the cost and the weight because if I don’t, if I only tell you the reason I snapped the above photo, then I risk being one of those friends you have on social media who goes on and on about the awesomeness of her life even as she masks the underbelly, all streaked with stretch marks. You know the type of friend. Look at us in the Bahamas! Look at us remodeling our kitchen! Look at me looking hot in my bikini/skinny pants/gorilla suit, etc.
After all, this was the image I saw just 5 minutes prior:
But even heavy with fatigue and baby gear and postpartum weight, I pulled out the camera and snapped this photo for one specific reason. Because looking at these two kids I care for, these two kids who will be in my care the rest of their lives, I felt, not stressed or worn down or wondering if I might be off having more fun with a kid-less existence. Instead, I felt rich. With these two people in my backseat, I felt incredibly rich.
Here’s the image again, in a slightly different version. What richness looked like:
She turned two.
Almost a year and a half ago, a new mother got up the courage to google, finally google, Wolf-Hirschhorn Syndrome, and among the scary news she stumbled across at ten-o-clock at night, she read: “One of three die before the age of two.”
Yeah, that new mother was me, but I write about her in the third person because she doesn’t feel like me. She’s brand spanking new to motherhood, and blindsided by a diagnosis. She’s suddenly terrified by a daughter she thought she knew. She’s shaking her head at a life she never thought she’d have any business being in.
Now I’ve been at this awhile. The new normal. Parenting, yes, in all its splendid brutality, and brutal splendor, but also parenting Fiona, who last month turned two. Someone asked me if I was a little sad or sobered on her second birthday, given the infamous Wolf-Hirschhorn statistic. It dawned on me: I’d forgotten about that statistic. My life is far different from the one that Monsieur Google offered up on that frightening midweek evening. Instead, here’s how we celebrated her second birthday:
When Fiona turned 18 months, I wrote this blog post about the things she could do. Progress is still slow compared to what I sometimes call “the standard issue kid,” but Fiona is indeed progressing. Six months ago, she had just learned to sit, and it was a strained and shaky yet adorable attempt, like this:
Her sitting has come along way, and so have many other things. Here’s an update from the original list:
- sit by herself for long stretches, thirty minutes or more, and reach comfortably for toys all around her.
- get out of and (most recently!) into sitting by herself.
- push up on her arms (something she resisted for awhile)
- push forward to reach a toy when on her belly, either by using her hands or her legs (but not yet both). It’s kind-of a pre-army-crawl.
- feed herself small pieces of food, like puffs, cheerios, bits of cheese, popcorn.
- hold her own bottle while lying on the floor.
- nod “yes” (though sometimes indiscriminately, as in, “Fiona, do you want to go skydiving?” [Nods yes.])
- use the signs “more” and “all done,” though lately she’s taken a hiatus from signing in favor of her preferred head nod.
- mimic coughing, sniffing, hah sounds, mm sounds, aah sounds, and an approximation of burping (yeah, we’re super proud.)
- understand many, many words, including: smell, bang, tap, clap, eat, dance, sleep, push, kiss, bottle, go outside, go for a walk, dad, mom, sister, grandparents, cheese, puffs, eggs (and other foods she regularly eats), and watch Yo-Gabba Gabba (a children’s TV show that appears to operate like some addictive infant drug).
- push buttons on toys for cause and effect
- anticipate surprises she’s experienced before, like the tickling in “this little piggy” and the speeding up of the beat in the song, “Dog Days Are Over.”
- engage in what her early intervention person called “age-appropriate protest behavior,” the official term for the heavy doses of whining that Fiona offers when her physical therapist makes her do stuff she doesn’t want to do. (More about that later.)
Kids with Wolf-Hirschhorn syndrome each develop at their own pace, so this is by no means a “What WHS kids do at two” PSA. It’s just an update on Fiona’s progress thus far.
Oh, strangers gasp when they spot Petra in the infant carrier. She looks new! How old? they ask, and I tell them. Three weeks, or Four weeks, and they nod and say they thought so. And I smile. Actually I beam. But I also note the difference.
With Fiona, strangers gasped a different way. Not, Look, new life! But, Oh my God, she’s so tiny. And not so tiny as in how sweet, but so tiny as in too tiny. Crushably small. Breakably, abysmally diminutive.
Then came the inquiries. Usually, Was she premature?
No, I said and averted my eyes, and that was usually the end. They didn’t offer adoration. They usually didn’t ask follow-up questions. What’s her name?, people ask about Petra, their faces still lit with revelry for new life. Instead, with Fiona, the conversation ended. Or flummoxed, a few bold strangers harped. How much did she weigh when she was born? How much does she weigh now? I never got up the nerve to return the question: And how about you, ma’am? What’s your current weight?
One woman straight-up asked, all knowingly, like she thought she was the wisest woman in the world, How premature was she?
She wasn’t, I said. We were in an elevator. She didn’t know what else to say. We all resumed our staring forward as the numbers lit in ascending order, taking us upward.
The difference is constant. A floral newborn onesie that hung loosely around Fiona’s 3-month body already clings tightly to Petra’s expanding belly. Pants that were always too wide for Fiona’s narrow waist now hug Petra’s rump.
Two years ago, the newborn clothes made me sweat. Why couldn’t my baby fit them? Now, as I slip them over Petra’s eight-pound body, they are triggers. They remind me of how nervous I was, how desperately I wanted someone to say: Absolutely nothing is wrong.
I put Petra down on her belly. They call it tummy time. She lifts her head up an inch or two, looks around. Fiona wasn’t capable of doing this until she was maybe 4 months old. I already see the difference in Petra’s springy, tight legs—she’s designed to get stronger than Fiona. In her body I can already see the easy unfolding of what I witness in other babies, of what the milestone charts tell me babies should do: sit, crawl, walk. All without hours upon hours of therapy.
The two of them are happy to be supine right now. I put Petra on her back on a quilt, and she squirms and jerks her arms and legs. She brings her hands together. She blinks at the lights and shadows. She eventually cries for milk. Fiona is there, too. Happy to lie on her back for hours if I let her, happy to roll to the side only to grab the nearest available toy, after which she’ll roll onto her back again. Today she rolled over to her sister, attempted to claw at her head. But Fiona didn’t sit herself up to get a better view. She stayed firmly on her back.
My babies—both staring up at the ceiling—are like semi-equals for now. Loving the ground, giving their bodies to gravity. At the end of the day, I join them, hear my lower vertebrae and hips pop with relief, feel my bones align themselves. Let go of the day, a yoga teacher used to say when she instructed us to lie on our backs. Now let go of the week, the month, the year. For many pregnant months, I couldn’t lie like this. Now it’s a treat, and I lie face-up and sigh and sense what my muscles ask of me: let go of the weight of the past two years, when I carried in my body two different girls. And let go of the future, too, while you’re at it, an uncertain place where the two bodies of your girls will continue to tell two different stories.