It was worn, tested, tried, and true. I repeated it probably millions of times over those earlier years when I first fell in love with the spiritual discipline of silence, of making room for God to move in ways that involved only clearing my mind, cultivating a space, and ushering in a countercultural reverence for stopping when the world refused to stand still.
Perhaps that’s why I’ve never really been able to get my mind around this word, why I’m not so good at abiding, or even praying about it.
I confess that recently my abiding has become dusty and decrepit, just like my centering prayer practice, beholden and bent to the cluttering of my life in which I’ve allowed little space for anything other than tasks and work and running–little space for silence, breath, let alone God.
And yet, in the recesses of my soul, God whispers more countercultural wisdom–that more can even be done with less rigor and muscle and strength. That, just as it’s been in the deliciousness of these last few mornings, when I’ve sat idle, letting the waking silence wash over me, I’ve felt most refreshed, most awake, most alive.
There’s this mystery about life with God, how when we resort to doing wholly nothing, that nothingness becomes holy in its luxury and extravagance, a sacrifice, an intention, a heartiness that can’t be achieved or earned and is yet, so much purer and better and good than all my blustery days.And that openness gives life and purpose and wisdom to our work and our justice and our advocacy–it exceeds us, because it so importantly comes for God and not from us.
It was an ordinary, sunny, Saturday morning when I crept downstairs into Lucia’s room to dismiss the night nurse. “It was a beautiful night,” one of Lucia’s nurses, Viktoriya, purred in her thick, Ukrainian accent, flashing a wide smile, gesturing toward Lucia, still sound asleep in her bed.
I smiled, too, and sighed in relief.
Lucia hadn’t been having “beautiful nights” as of late: for almost a year now, she’d been screaming and crying out in pain in the wee hours of the morning and as she was just waking up. The crying was so extreme that the nurses and even we, her parents, couldn’t comfort her. Finally, we’d figured out that she was experiencing muscle spasms and cramps because especially in her sleep, she can’t move purposefully, so a low dose of Valium had recently been providing some relief.
But with Viktoriya (who mind you was a doctor in Ukraine), Lucia often had “beautiful nights,” nights that Viktoriya never took credit for, but rather rejoiced in innocently, as one would a gift. And yet, we knew there was something special about Viktoriya, about the meticulousness of the care she gave, the extra knowledge she possessed about the medications Lucia was on and their interactions, even the way she played with Lucia, offering her therapy when she’d wake up early in the mornings.
As we neared the front door and we talked about the pulse oxygen machine–the pediatrician had asked to get the alarm rates to make sure Medicaid would approve its rental for the coming year–Viktoriya detailed with precision the attention she paid to Lucia’s heart rate. “You see, when her heart rate starts to climb, I can see she’s getting uncomfortable, so I do not wait for her to cry,” she said, “I turn her.” And she motioned. “I turn her from side to side all night and she never wake up,” she said cheerfully. “She sleep perfectly just like that.”
Even as I write these lines, I am in awe.
In awe of the devotion and care my daughter receives as not only she, but my husband and I all sleep through the night, all the while a nurse keeping watch, anticipating and aiding Lucia to find safety and comfort and rest. It’s just no small thing that in a world where life is so difficult for Lucia, where at night she faces seizures and breathing and pain, a nurse not only keeps watch for the big things, but guards her sleep, attentive to her every desire, a desire even to move.
As Viktoriya left that morning, I scribbled a post on Facebook, letting my little world know what she’d done and been doing for us, and why Medicaid has been such a boon, a comfort, a watchman for our Lucia and for our lives.
I did this before I knew Medicaid was about to come under threat yet again. I did this before I knew I’d begin losing sleep again not because of Lucia’s medical conditions but because of the care that may not be there in years, months, or weeks.
How I feel about Medicaid is how I feel about Viktoryia and so many of the nurses who have come into our lives–they are a gift. We can’t possibly pay for the healthcare that Lucia would need to live and that in itself is frightening and humbling. Yet the state and the federal government give us the support we need to live our lives as a thriving, joyful family, not just of 3, but of 9.
That’s about how many nurses, plus two parents, it currently takes to provide Lucia the round-the-clock care she needs to make it through the day. Or maybe it’s more like 16–that’s the addition of the five specialists that Lucia sees on a regular basis, her medical care that Medicaid, too, helps support. Or maybe it’s more like 20–that’s her therapists and her teacher at school, a special needs school where Medicaid helps supply equipment, her Medicaid-supplied nurse makes it possible to attend, and Lucia gets great education and therapy.
I could go on. I know the numbers are much higher still–it’s you, millions of people who pay taxes and the government, that help support families like ours, that make it possible for Viktoriya to play watchman at night so Lucia doesn’t seize uncontrollably, so she doesn’t wake up crying in pain, and so her parents don’t have to hold vigil night after night as they struggle to work and to care for her. It turns out, I’m not just in awe of Viktoriya, but the abundance we have received through Medicaid, which is in no small part thanks to all of you.
Thanks to so many of you who called, wrote letters, and spoke to your members of Congress, I feel like I can breathe again for the first time in weeks. I feel hope and lightness and strength, and I can’t thank you enough!
But most of all, I feel like the outpouring of support reminds me that while I can’t take it for granted and the fight to protect people with disabilities, the poor, the elderly, and the most vulnerable in our country is far from over, I hear that the voices who value those lives in this country have gotten louder, more expressive, and more proud. A few days ago, the burden that I felt to make my daughter’s story and her value known felt very singular and heavy. But what’s so sweet about hope is that burdens are lifted when responsibility and love and care become shared.
Thank you so much for sharing our burden, but most of all, thank you for realizing that Lucia’s life has never been and doesn’t deserve to present a burden to her or to us or to any family who just wants their child to grow and thrive. Let’s keep fighting so that we can all keep growing by living in a society that values so many different kinds of people and deems them all worthy of health, education, life, and love.
Onward, my friends. And thank you for renewing my hope!
When I finished typing the last few words I set aside my dissertation for about a week.
I was afraid to read it, because I knew there would be typos amidst that sea of words. It’s just impossible, not matter how many proofreaders, no matter how much time spent, to produce something perfect. And while I know that, I didn’t want to experience the pang of how those mistakes would mar the crisp, white pages. I wanted to believe that there was some way that all my hard work would pay off with perfection.
Like I said, that lasted about a week, and then I had to face reality. I read through it, in preparation for my dissertation defense, and there were many typos.
And it was still okay.
In fact, the typos reminded me that I’m not in pursuit of something perfect, but something human, something meaningful. What’s more, I could see beyond the typos to those people in China who changed my life. As I read, I was humbled to see and know that despite the congratulations that would be heaped on me and only me after the defense, this dissertation, was truly the work of many hands. The typos reminded me that despite the perfection that’s so idolized in academic fields, we academics are imperfect people who rely heavily on the minds, kindness, and generosity of others to produce our knowledge.
There were moments where the typos made me wonder whether I had any business defending a dissertation toward a Ph.D., but I’ve also realized that it’s great to recognize that while you have learned a lot, you still have much more to learn. It’s not so bad to see typos and be humbled and recognize that you’d rather be transformed and human and vulnerable than perfect and magnificent and independent.
This Thanksgiving, I’m thankful, in all circumstances, for typos, for friends, for family, for foster families in China, for dissertations, for new journeys, for imperfection, for growth, for love, for peace, and for God.