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.