I should have written sooner, but it’s been a winter and a spring marked by surgery, hospitalizations, feeding difficulties, and gregarious giggling. It takes listing it as much–those startling rhythms–for me to note that perhaps there are good reasons for not having written, that this year has been so rough already, three months in, it seems anything but ordinary.
But while my attention has been swayed by nights in the hospital, the precise milliliter at which Lucia always seems to choke and aspirate, and the ramshackle solutions to trying to keep those calories inside her little body, I’m also starting an ethnographic project on disability and communication, and so I find myself watching the ordinary things we do together, too. Because she can’t see well and because we don’t have traditional conversations, I find myself instinctively doing things with Lucia that I wouldn’t do with anyone else. I place my face right up against hers as I’m speaking to her. When I say her name I watch for the flicker of recognition in her eyes. When I notice her lips are dry, I pick the large flakes from them and then apply balm, something she licks and smacks with eagerness, because she doesn’t eat by mouth. When her head begins to drop as it often does out of neurological lapse or fatigue, I guide her cheek and her chin back toward me without thinking. And when on the rarest of occasions, she turns her eyes to mine, I don’t know what it is about it, but I can tell she is really, really seeing me, and it is the holiest of moments, the simplest of pleasures, not just for her or for me, but for both of us–I’m certain of it.
Feeling so certain of these ordinances and our bond with one another is something I never expected to buoy us in this extreme world of uncertainty. And so at the end of a long Monday, where I shuttled her to a rather bleak nutrition appointment, and she’d made the rounds on errands and to my office, all the while coughing and sputtering her feeds, because there was no nurse, I realized that it wasn’t what ostensibly might qualify as a great day. And yet, when I looked into her eyes that evening, I also felt so far afield from those early days when she’d cried incessantly and I couldn’t do anything to comfort her, and I’d text her father in exhaustion and desperation. I’d wonder whether she even liked me, and people thought I was being facetious, but I really wondered whether she even knew her mother was there.
But here we are today. And suddenly, I felt it a great, extraordinary day, and choking back hot tears, I whispered to her greedily, “I wish I could keep you forever.” Because I realized that the really bad days and the great days and all the ordinary days in between, they will just never be enough. I’ve been so busy, struggling and surviving this particular climb through Lent that the hyper-ordinary had lost its resonance. But what I’ve been made to realize, especially with Easter so fast approaching, is how critically our family, as every family, lives in the space caught between abundant life and impending death.
It’s not something I readily acknowledge. How can you? How can you go on living your so ordinary life when you are often reminded how fleeting, precious, and truly extraordinary it is? Just a few years ago, when we had the opportunity to meet other families of kids with AGS at a conference, I saw a grown man gleefully pounce on his 90-pound teenage daughter laying on a mattress in the middle of a hospital conference room and it put a lump in my throat to see how similar their modes of communication were to ours and to realize that loving Lucia wouldn’t ever have to change if we were lucky enough to know her that long. We could go right on loving her with abandon and conviction if we were just brave enough to do it.
And on most days, especially because Lucia’s so joyful and go-lucky, she reminds us that there’s no reason to worry over a future that not just for us, but for all of us, is by nature highly uncontrollable and uncertain. But then again, when you’re so audaciously invited to taste pure, overflowing joy on a daily basis, there’s nothing ordinary about it, and it’s impossible to be grateful for your portion rather than ravenously thirst for more. So I try to acknowledge the precariousness of not just this life, but all our lives as the unbending site of where cups also runneth over, because we have received the gift of truly knowing our daughter, which I think every parent can agree, is actually altogether extraordinary.