We live in a land of strange luck.
We are lucky our daughter’s seizures have (thus far) stopped within a handful of minutes, rather than going on for hours.
We are lucky our daughter’s atrial septal defect—colloquially known as “a hole in her heart”—has closed on its own.
We are lucky her anomalous vertebrae curve 30-some degrees one way and then, in some fascinating act of perfection-via-imperfection, curve nearly the exact same number of degrees in the opposite direction, thus making her spine (so far) fairly straight.
We are lucky our daughter’s eyes can see.
Lucky her ears can hear.
Lucky she lets food into her mouth. And we are practically lottery-winners that she has learned to chew. None of these are givens for a kid with Wolf-Hirschhorn syndrome.
The luck extended back to the beginning, when I gave birth, although we didn’t know luck’s fat, grinning face like some Cheshire Cat lurking in the invisible tree above us: We were lucky she spent no time in the NICU. We had no idea how lucky we were.
I say all this because Fiona is sick with some bug right now that, in me became a sore throat, and in my husband and my one-year-old became nothing, but in Fiona became a fever resistant to meds. It resulted in a handful of seizures and eyelids swollen so bad she now looks like she’s wearing pink eye shadow. At least these seizures stopped on their own, I think. At least they didn’t last hours. At least she wasn’t hospitalized, intubated, administered multiple kinds of meds. At least, at least, at least. You know it’s strange luck when the absence of the above is what makes you feel lucky.
There are times when I am genuinely, big-as-sky grateful for all these good cards we’ve been dealt. I am grateful in a way that I would never think to be grateful if Fiona had a fourth chromosome as long as mine or yours. The sight of my child chewing can sometimes make me tear up with gratitude. My God! I think. Thank you! I think, and nod to the ether and the stars and the blessings and the luck.
There are even times when I feel somehow grateful, mysteriously grateful for the biggest card, the strangest odds, the one in 50,000: my daughter’s rare congenital anomaly. It’s not because I like to see her suffer, not because I like to suffer myself, but because to me her chromosomal difference is inextricably linked with who she is—with her fine, curly hair and her sapphire eyes and her affinity for cheese and her sibling jealousy and her desire to have whatever you’ve got, just because you’ve got it. I find myself adoring all of her, which yes, includes the syndrome, even though it—and she—have exploded and repaired and exploded my heart on more than one occasion.
But occasionally, I would like to know what it’s like to live in the land of un-strange luck. I suspect this is not a place where one wakes to one’s spouse saying seizure, where one flicks the bedside light on at 3 a.m. to see one’s daughter’s body jerking, eyes wide, face a pale milk-blue. I suspect this is not a place where, during dinner, one drops one’s fork and runs upstairs because the breathing on the monitor has turned rapid and rhythmic, and one finds one’s daughter in the same state—body jerking, eyes wide open, face milk-blue.
After the last instance, which happened yesterday, I wanted to do what I rarely ever want to do: I wanted to punch a wall. It was an unusual urge, and I didn’t punch a wall. I just stared at my sleeping kid, tired from a 2-minute tonic clonic. (Thank God for short seizures.) But now I think maybe I wanted to punch a wall so I could punch a portal into that different land. That land of no seizures at all, no scoliosis at all, no neurologists or nephrologists or geneticists at all, that land of un-strange luck.