Piper’s just today crossed some development threshold: she’s smiling in a way that seems almost, barely, on purpose. Or maybe it’s “vaguely in response to external stimulus” … or maybe Bob is the cognition-fairy. The smiling is way far from consistent, mind you, but there’s noticeably more of it than yesterday. Either that or all the books which say that babies start social-smiling at six weeks have influenced our sleep-addled brains and now we’re just interpreting the same facial tics and grunts as something new.
Also, after a long period of comatosity this morning while we brunched with Bob, she’s refused outright to nap this afternoon. Instead, she’s been lobbying for gazing adoringly at our faces (cute), crankily alerting us to imperfections in her diaper (necessary, though hardly endearing) and acting as an impromptu carpenters’ level by creaking whenever she lists sideways (this gets old quickly).
Earlier in the week, I took a trip up to Helen Hayes – at the request of the staff – to talk with a patient with GBS. Had a long and cheery conversation with her, with the strange double-vision of seeing the same halls and rooms I’d lived in through her eyes. She seemed to me to be in great shape, soon to return to school and very upbeat about her recovery. We talked about feeling constantly warm, foot pain, how friends react to odd and prolonged illness, and about the survivors’ guilt of the recovering paralytic amidst slowly- or non-recovering people.
On the way out, however, I ran into the family of another patient there with GBS: a guy who’s not nearly so sanguine. Found myself talking with him about how frustrating the relentless optimism of one’s family is while having to fight back the reflexive urge to tell him that he’d certainly get better from where he is now. Also found myself thinking about how, when I’d been at HHH for one week, I’d practiced a sort of … “active acceptance” of where I was, right then. I couldn’t sit up, it hurt to lie on my back, I was still sporting an active tracheostomy… and every single day I really tried not to look any farther ahead than that evening. Or lunch, some days. Had I looked any farther out, I’d have felt astoundingly helpless in the face of all that unknown.
And as to feeling helpless… Last night, on the way home from Queens, we had a very minor fender bender. We were stopped at a stoplight and a car tapped us from behind at probably 3 mph, no more. It was a solid jolt, though, and it startled the hell out of us and immediately woke Piper to squalling, dozing in her car seat. We made sure she was okay, got out, looked over the damage (nearly nothing on our car, and some nasty crunching on the grille of the ancient P.o.S. that had hit us), exchanged numbers with the driver, and weighed whether or not to call the cops and file an accident report, ultimately deciding not to. (The folks who hit us seemed eager, to say the least, not to have to involve the police or insurance, and since the damage to our fender looked minimal, we decided to take their offer of having our bumper fixed at their expense and not sit around waiting for police and paperwork. Naïve, maybe, but we’d had a long day and just wanted to go home and go to bed at that point.)
As we drove home, every other car on the road looked like a threat. All the vehicular motion around us was menacing, and the walls of our car felt paper thin. Piper was cranky and hungry, and her announcing this kept our nerves jangling. (I craned my arm around and volunteered my pinky finger as an impromptu pacifier, with which she happily calmed down, though my shoulder was not crazy about the angle of exertion required.) Got home, found a parking spot, and called the pediatrician just in case. They asked us some behavioral questions, wanted to make sure the latch on Piper’s abdomen hadn’t bruised her, wanted to make sure she wasn’t concussed, and then confirmed what we already intuitively felt like: she was fine.
That ride home, however, where we realized just how helpless we were before whatever the world threw at us, has stayed with me today. We went out walking to brunch; I jumped when cars drove by. A bee flirted with Bob and Bob’s breakfast at the table; I wondered where my long-expired epi-pen is living. It’s a hard thing, recognizing and accepting the limits of one’s power in the world, and it’s clearly something that needs to be practiced often if one is to retain calm in the face of motion, whether too much or not enough.