I realized that it’s only fitting that I started blogging again yesterday during Lent, because as history serves, Lent has lent (I just can’t help with the puns…you know Easter is on April Fools, right?!) a good portion of inspiration.
So I’ve compiled, just in time for Good Friday, a dose of Lenten posts for your contemplative reading.
I pray that this season has been meaningful and full for you and that you find so much comfort and hope and peace even at the sight of our wounded savior on the cross. May we linger on that cross and the grave with renewed passion and waiting and expectation of the hope to come on Easter Sunday. Amen.
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.
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.