After tolerating my bargain-hunting for onesies that would match her many awesome pants (courtesy of Grammy and Auntie), Fiona was ready for some play, so I pulled her out of the stroller and sat with her on a bench at the outdoor outlet mall. We’d just finished 9 days of triple-digit temperatures, and it was finally a gorgeous, eighty-something day. Shoppers passed by. Fiona stood propped up between my legs and craned her neck toward the sky to investigate the clouds.
But it had not been my best day. Not because we hadn’t found onesies—we had, and at steals of $2.50 each. Not because anything tragic happened. It hadn’t. In fact, that morning I got to write for two hours while Fiona napped, and for lunch she polished off (after two days of trying) the 6-ounce jar of slightly chunky, stage-3 baby food—a real feat for a kid with special needs who might have oral aversions and/or might not exactly know how to handle those chunky carrot bits. She munched. She swallowed. She smiled. She didn’t gag once.
No, the only thing about this day that made it not-my-best was me. And it started as soon as we wheeled into the first store, and I felt it, the familiar angst. I was about to buy size-3-month clothes for my 13-month kid. Again.
Fiona doesn’t grow out of clothes. She carrots out of them. That is, enough pureed carrots stain the collars that they need replacing. And something about this struck me as sad. Why? It’s not that big a deal, right? So my kid is very, very small. So every time I meet someone new, and they ask me, “How old?” and nod toward Fiona, the answer I give is always several months older than they can believe (and in time will be several years older). So what she’s small? I’ve counted Fiona’s blessings before and they are many: she can see, she can hear, her kidneys function well….
But I think there’s a biological imperative implanted in every mother’s coding to want her child to grow. Grow like a weed, kid. A fat, ever-widening, cheeky, thick-thighed weed. Grow grow grow. And kids with WHS do not abide by this imperative. Sometimes they even shrink. From time to time, they lose an ounce. Sometimes more. In the fall, Fiona will probably wear the same long-sleeved T-shirts that she wore last winter. They’ll fit her a bit tighter, but they’ll fit nonetheless.
“Racks are arranged by size and price,” the saleswoman said. “The fall stuff is against the wall. That’s on sale too,” she added, “in case you want to buy ahead!”
Buy ahead. I’d tried it before. I’d picked up outfits one size bigger than Fi was wearing in the hopes she’d fit them when the time came, and when the time came, she didn’t, and I stored them in a plastic bin. I now have an overflowing plastic bin. I thanked the woman.
I spent the rest of the hour hoping that the next salesperson and the next salesperson wouldn’t ask me the inevitable, “How old?,” which on some days I handle with honest, unabashed directness, but on this day I feared could choke me up. Because the answer leads to the inevitable, “Oh, wow,” and then, at best, “Well aren’t you petite,” and at worse, awkward silence as the stranger now stares at my daughter, not with that original smile and delight, but with suspicious eyes. I can almost see the cartoon bubble above their heads: “Why’s she so small? What’s wrong?”
I had to switch gears. I had to let her out of the stroller because she was steady whining, but I also had to switch emotional gears. To rejoice in my daughter and just sit and be. Which was why, after two onesies richer, and only five bucks poorer, Fiona and I found ourselves playing on the bench amidst the outdoor outlets of Greater Cincinnati.
There I was, holding her up in a supported stand, and there she was craning her neck to the sky. And then she leaned down on the bench, hands first as she likes to do, and stared intently at the seat. And then she pressed her hands into it. After a few moments she got on her knees. With my hands under her belly, she held a supported four-point for a solid fifteen seconds. Like getting on her hands and knees was the most natural urge in the world. Let me spell this one out: Unprompted, and after months of working on it in physical therapy, she held a supported four-point.
Look at you! I said. Oh my God! I said and beamed and teared up at my daughter, rocking a position I know a typical child half her age can achieve on his own. But when a typical kid holds supported—or even unsupported—four-point, it’s not a near-miraculous feat. It’s expected. Another checkmark on the usual milestones. When Fiona did it on this particular day, I felt elation. Pure joy. And I know that’s a catch-phrase, pure joy, but it was indeed pure, as in there was nothing else I felt in those few seconds. No worry about her size. No tallying up her next week’s worth of doctor’s and therapist’s appointments. Just rejoicing at this minor dazzling display on a park bench beside a shoe store.
I often hear parents of special needs’ kids say, “My life is better for it.” Meaning they genuinely feel they live richer lives as a result of their child’s health and/or developmental challenges. But in this, my first year as Fiona’s mother, there were a heavy handful of times when I did not feel this mantra was true, when I wished with everything I had that I could dig and dig in the dirt of some archeological field somewhere and discover, in my gloved hand and metal shovel, the missing pieces of the short arm of Fiona’s chromosome four. I’d stick those pieces into all her cells and “fix” her.
Namely, I did not feel the “My life is better for it” mantra the night I watched her lips turn blue as the clock ticked into the fourth minute of a tonic clonic seizure. It was eleven p.m. It was her second seizure. She stopped seizing before the ambulance came, but I spent that night with her in the E.R., and for a week after, I lived like I’d been hit by the emotional equivalent of a Mack truck, numb and joyless, feeling that no small number of daily delights could eclipse the agony of what I’d just seen in my daughter’s short breath, her repeated vomiting, her uncontrollable seizing, her bluer and bluer lips.
I realize that other mothers of special needs kids have walked with their kids through even more dire circumstances, that Fiona and her dad and I might be in for even tougher moments in the future, that maybe I’m a rookie and a tonic-clonic is really nothing to write home about. But I’m still relatively new to this. And blue lips do me in.
On the park bench on our shopping day, after she finally dropped from her supported four point, and after I pulled her up to standing, and while she got into playing with a crinkly bee toy that I like to pretend is her “favorite” but for which she seems to express only mild enthusiasm, I thought about the seizure. And in conjunction, I thought about the moment I’d just had—my deep, brief, tear-struck elation. The two seemed linked. The low making the high. The low of learning Fi might never walk creates the high of seeing her handle herself on her hands and knees, giving me a glimpse into a possibly crawling child, a possibly mobile child. For this, I was ecstatic. For this, I was thankful. For this—not just Fiona’s four-point but my gratitude—I was blessed.
I don’t know whether my life is “better because of Wolf-Hirschhorn,” but I know that it is more intense. Fiona’s syndrome offers more regularly the striking realization that this life is fickle, uncontrollable, fragile. And it offers the unabashed raw delight in the minor victories I would have otherwise taken for granted. And so I think it offers more obviously the thing we all have—the opportunity to awaken to the profoundness that is always right in front of our eyes.
Also, those onesies I bought—they were size 6-months. Go, Fi, go.