If we were having coffee, I would tell you how glorious May has been with its graduations (beginnings wrapped up as endings), breezes and flowers, and yes, even rain! The other morning when I saw birds whizzing around with big, fat worms in their beaks I realized how happy they were about the rain and it made it decidedly more tolerable!
When I began this year teaching in my new position at the seminary, I had braced for the challenge, the uphill newness of it all, but I never could have imagined the pride that has come at getting to know these students and having a small impact on their lives and ministry. This has been such a joy and yet, May has also brought necessary rest that I didn’t even know I needed. All of a sudden, the world seems lighter, more affable, with more space in it for creativity, thought, opening, and even play.
Lucia is thriving, too. She’s on a new formula that she’s tolerating so much better than in February or March. We’re steadily increasing her intake and speed, hoping she will be able to get more nutrition. We’re thankful for this respite, yet we know that nothing is forever or for certain. What we’re eternally grateful for is her sunny disposition through it all–in an overnight minor procedure last week, her smiles and giggles were so lovely to behold!
May is kind of the gateway to summer, so there’s also the fun now of expecting things. I put together my summer goals, which are quite simply fieldwork and revising my book on China, but I broke them down a bit on the whiteboard in my office. I realize that this time of year is so rejuvenating for me because it’s all aglow with ambition and possibility! Now if I can only realize these goals and maintain this steady pace of work and play throughout the summer.
On Friday, my husband and I take an overnight trip to New York City to celebrate ten years of marriage. We’re planning on dinner at the same French bistro I surprised him with last year. In truth, we’re forever trying to recreate our idyllic five year anniversary trip to Paris, which I’m totally okay with. I have the fondest memories from that trip and from ten years of marriage, with so many travels, our little girl, and a bright future ahead!
As we roll Lucia away from the face painting station on Saturday, a bright blue and yellow seahorse on her flushed cheek, I overhear the student ask the next little girl who’s climbed up into the chair how old she is. “Four,” she replies effortlessly. “Oh, you must be in preschool then?” the woman asks.
Lucia is four. Lucia is in preschool. But she doesn’t climb up on chairs or talk. I rather marvel at the young girl’s speech and motor-skills until I remember that my kid is the one people sometimes describe as “really disabled,” that my kid is the one who’s developmentally behind, delayed, atypical. It’s only in brief dissonant moments like these that I sense that my kid might be “other” to someone else or that our life might be considered atypical, because of course, to me, she’s just another four year-old with face paint, and we’re her parents.
But I’ve often felt like I’ve glimpsed something other-worldly in my daughter when she laughs, because the giggles tumble so uncontrollably out of her taut little body, erupting out of her, they seem to send ripples throughout the room. When we’re in public, I love to catch people, especially otherwise grouchy looking people, finding those giggles downright contagious, moved by the pure joy of the sound of her laughs, the generous, inclusive flash of her wide smile. She lacks words, but in these moments words are obliterated, unnecessary. She can’t really move on her own from her wheelchair and yet when Lucia laughs with true abandon, completely undeterred by anyone else around her, it strikes me that she is uniquely, utterly free.
Earlier that Saturday morning when Lucia and I sit there lazily in the living room, still in a stupor from a sleep study we completed the night before at a hospital an hour away from home, my husband says something astounding. He reminds me, the anthropologist, that the oppressing milestones of developmentalism inflict not just stress, but moral judgment on many a parent. Feeling as though it is up to you to usher your child through life’s varied stages with utmost precision is constraining and exhausting. And by that yardstick, our four year adventure in parenting is one colossal failure.
But then, we’ve also been set free.
We live life and we parent simply for the joy of it all. We don’t worry if we’re doing it right, because all we can do is seek comfort and happiness for our girl. We’re hurt when she hurts, of course, and there are times we wish we could fix things that we can’t. That pain that she feels and that hopelessness that we often feel are not to be understated. And yet, because of all the things we can’t do as parents and perhaps some of the things Lucia can’t do herself, we’re also very free.
We can’t hardly do anything but love her, and so we do, one joy-filled day at a time.
And it’s weird, precisely because Lucia does so little, I feel like it’s easier not to get lost in what she does, but to get to know her for who she is–a generous, patient, gregarious little soul–and it reminds me that none of us are the sum of our accomplishments anyway. So why do we let ourselves treat our kids that way? As if life is mostly gain and growth, when they’re all we’ve ever wanted, just as they are. Maybe it’s because deep down we’re not sure we’re really enough just as we are as people and parents. We could always be doing more, right? We are our own enemies of freedom, our own robbers of joy.
But before you say that we’re extraordinary or that Lucia’s extraordinary (okay, well that may be true!), let me tell you something else: there’s little in life that we actually control and when it comes down to it control is not at all what it’s cracked up to be. What’s extraordinary is that in a world of such chance and circumstance and chaos, we three get to live life together. We get granted these moments of joy and freedom that are other-worldly and grace-filled.
Now as a Christian, I tend to think joy is a gift from God, but whether you’re a person of faith or not, you may be able to agree that joy seems to come from elsewhere and only deigns to nestle itself between people with audacious graciousness–it’s always granted, never earned. That’s the one thing I guess we’ve come to understand about parenting, too. Its freedom is granted, but it also requires our willingness to let go of all the things we think are so important to receive it. I’m sure it may look like many of those things have been stripped from us, wrested from our control in becoming Lucia’s parents, but I just don’t see it that way.
Because when Lucia’s gone, I doubt I’ll remember or cherish how well she stood in her stander, how efficiently she swallowed bites of puree, or even mimicked the sounds of our voices, but I’ll never forget the sound of her laughter. I’ll pine for it, like I pine for nothing else. And I’ll pine for the way that laughter bid me to laugh alongside her, when I wouldn’t have had the courage to laugh with such abandon on my own. Without Lucia, I wouldn’t be a parent. Learning to love Lucia, I, too, have been set free.
The other evening a few of my friends indulged me in asking about my summer research project on disability and joy. I yammered on a bit about my excitement about what I might learn from families with persons with disabilities who are nonverbal, and then my husband spoke up. He talked about the presumed extremes and edges for families raising children with disabilities, especially children with rare and life-threatening conditions like ours. “Either you’re at one extreme, devoting all your time and energy into fighting this disease and finding a cure, or you’re slumped over on the couch, defeated and depressed, resigned and remorse that life is so cruel and painful.”
Of course, I’m paraphrasing. Although my husband has spoken of these extremes often, down to the very way he first framed our public announcement of Lucia’s diagnosis, I’m not sure it had ever occurred to me how these hostile extremes prey upon and distort the reality of life as we know it with Lucia. Why didn’t I think to frame my project this way, I thought? After all, isn’t it this insidious framing that makes the pairing of “disability and joy” so presumably unexpected and rare?
These stereotypes about parents of kids with special needs, made it and continue to make it really hard for me to open up as Lucia’s been in a really trying and uncertain period of feeding intolerance. In our first ethnographic interview for the project this week, one of the parents spoke eloquently about the burden of communication that’s placed on she and her husband to keep the world appraised of her child’s medical status and progress report. A few weeks ago on a Sunday where I’d finally resolved to open up about how overwhelmed my husband and I felt about Lucia’s feeding difficulties, I quickly found myself sandwiched between two platitudes–the one about God giving special kids to special parents and the other about kids being able to overcome their disabilities with hard work, and I just wanted to scream.
When well-meaning friends jump so quickly to wishing life was otherwise for us and striving to help we and Lucia overcome all her challenges, I feel shortchanged and silenced, because it starts to feel like our life’s everyday difficulties come as such disappointments to others, and then I feel the burden of having to help others find narratives of progress amidst our very chronic, circular story. Of course you wish the best for us, but when that comes at the cost of your narration and my silence, I can’t help but feel you’re wishing away so swiftly and expertly the difference between us, without acknowledging that that difference is where my family and I live. I know it may sound harsh, but in these moments I often feel as though people would rather experience my family’s thriving or failing as a spectator sport, watching from a distance, finding some sentimentality in it, and then going back to their regularly scheduled lives, buffered by that comfortable (manmade) chasm between us and our seemingly very different realities.
I’m aware that neither my humble ethnographic project nor my blog posts can suddenly or significantly alter the cultural scripts surrounding families with family members with disabilities (let alone people with disabilities, especially people who are nonverbal, but that’s for another post…), but I do believe there is great power in helping families tell their stories as they want them to be told.
When I came home from church that evening a bit emotionally battered and bruised, I thought about why those conversations stung so much. They stung because the truth was that amidst great hardship, I didn’t feel that things were just hard on the eve of Lucia’s fourth birthday, I also felt exceedingly grateful. And so I began to write parts of this post and I resolved to try again. Yet another Sunday, I told my story with its mix of grace and hardship and beauty and pain and joy, oh yes, deep, resounding joy, to a few members of another family during coffee hour. I remember the concerned look on their faces, their heads nodding, I don’t remember much of anything they said, but I certainly remember how I felt. To be accepted as I was, not really by their words, but by their nods and their faces and their hearts, was like a balm to my soul.
They did me the honor and ministry of letting my story hang between us, but what may have been slightly uncomfortable to them felt so freeing and resonant and powerful to me. I realized that I have tentatively decided to share my story on this blog over and over not always even so that others can understand, let alone feel better, but so that in this swarming world that buzzes and pulses and consumes and compresses my daughter’s life into sound bytes and platitudes and pity, I can simply hear my own voice. I know it sounds selfish to put it that way, but perhaps the battle that parents with kids with disabilities are fighting is not primarily one against disease or difficulties but against the perception that their kids lives don’t matter or that their kids aren’t like other kids or their families aren’t like other families, because they can be summed up in stereotypes that pronounce their differences in cruel, inhuman ways. The isolation isn’t primarily physical but social, one where you find yourself telling a story that should be yours but that either no one else wants to hear, or everyone else wants to narrate, resolve, and redress for you.
But stories always have more complexity, a life of their own, and depth beyond what we can ever imagine. They’re just one more fabulous aspect of what makes us human–that we all have a story to tell.
Thank you for letting me share some of mine. And thank you, most of all, for really hearing it.
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.
But as much as there is to share about what I’ve learned this year, there’s thanks in order to you, dear readers, for hanging in with me throughout all the feelings and frustrations and for your own listening ears, your caring, and your advocacy. Whether you’re a new reader, or you’ve been around for awhile, thank you for sharing our family’s struggle. I certainly hope you’ll let me know which posts continue to resonate with you, what you like best and what you like least about the blog, what you’ve learned in 2017 and what you’re looking forward to in 2018.
Here is a look back in hopes that these lessons learned from the year prior will carry us forward in making this world more just, more healthy, more good, and more compassionate:
On Saturday morning, after weeks of seeing proposed changes to this tax bill and fighting against the disastrous impacts it could have on people with disabilities, people who are sick, and people who are poor, I got lost in the numbers. You see, as I started to comb through the final outline of the bill, I started to wonder whether it was really all that bad. It does seem to be providing more generous tax cuts to many more people than initially forecasted. It’s possible cutting taxes for corporations could create economic growth. And they did remove some of the truly egregious aspects–taxes on graduate student tuition, while expanding medical expense deduction thresholds.
But then I scanned the text for the lectionary the following morning—Isaiah 61:1-4, which reads:
The spirit of the Lord God is upon me,
because the Lord has anointed me; he has sent me to bring good news to the oppressed,
to bind up the broken-hearted, to proclaim liberty to the captives,
and release to the prisoners; to proclaim the year of the Lord’s favour,
and the day of vengeance of our God;
to comfort all who mourn; to provide for those who mourn in Zion—
to give them a garland instead of ashes, the oil of gladness instead of mourning,
the mantle of praise instead of a faint spirit. They will be called oaks of righteousness,
the planting of the Lord, to display his glory. They shall build up the ancient ruins,
they shall raise up the former devastations; they shall repair the ruined cities,
the devastations of many generations.
And I was reminded that our God is a God of justice (by Isaiah, because he says so, in verse 8).
So tax bills, especially for us Christians, aren’t a matter of crunching the numbers but of seeing the bigger picture, and we simply cannot support policies that cut taxes for the wealthiest among us while ignoring the plight of the poor. Numbers aren’t just numbers. They represent people. And people who are struggling should be prioritized over tax cuts to those who are wealthy.
But that’s not what our government wants us to think.
But just stop for a moment and think about why you pay taxes and who you want those taxes to serve? Our family moved to a high-tax district but one that we knew would support Lucia’s special needs at school in spite of the cost, and I’m so thankful that those who live around us are willing to pay more so children can get a good education. Our family also benefits from services through the Medicaid program that is funded by federal and state tax dollars to support people with disabilities, people who are poor, and people who are old, especially those who have substantial medical need for daily living. Many elderly people who are sick and disabled benefit from the substantial Medicare program that threatens to be cut to support this bill.
So here we are again, cutting benefits for people who really need them, so rich people and corporations can get a tax break. For a moment, I accepted that there could be some breaks for all because that’s what the government is saying, but that’s not only fuzzy math, it’s fuzzy morals. Our taxes can’t pay for the things people really need and give huge breaks to the wealthy, and what’s more, they shouldn’t bother with making the rich richer, ever, because it’s wrong. The Old Testament prophets and Jesus, whose birth we celebrate in this season, make it clear that Christians are called to liberate those who are oppressed and to bring good news. This tax bill is not good news and we cannot ignore our responsibility, as unpopular as it may be, to speak otherwise. We cannot turn mourning into gladness unless justice is justice for all.
Wake up, American Christians, it’s almost Christmas, and we have work to do.
I can’t tell you how often these days my husband and I are brimming with joy as parents.
Every time our daughter smiles and giggles and babbles her sweet sounds, life–nearly four years of it together now–just doesn’t get any better. Indeed, when I look at photos like this, Lucia’s face pink and scarred from laying her cheeks in stomach acid night after night when she couldn’t tolerate her feed, I think just how far we’ve come.
But a lot of things have also stayed the same.
Lucia still needs a tube to feed during the day and overnight, she’s still prone to seizures, she’s having trouble breathing, and she’s scheduled for major surgery in 2018. Our family equilibrium isn’t typical, and it doesn’t come from a respite from medical complications, technological procedures, or nursing interventions. Rather, it is those very things and an incredibly spirited three-year old that often makes life so much fuller, grander, and more beautiful than we ever could have imagined. Ever since we got private duty nursing through Medicaid when Lucia was about a year and half old, not only her cheeks, but her lungs, her digestion, her joints, her nutrition, and her mood have all shown such growth.
In this season of thanks, we have so much to be thankful for.
And I can’t help but think about how the spirit of this Senate tax bill seems so out of sorts with this week’s cherished American tradition. They call it Thanksgiving, because it was one of the Pilgrims’ first corporate acts of giving thanks for the good harvest. And while the stories we tell our children about the miraculous sharing of a feast between the white colonialists and the Indians may not be entirely accurate, they reflect an idealized notion that thanks must be freely given and cannot be readily given unless there is peace, justice, and provision.
You give to my family every time you make a phone call to your senator and tell them that people with disabilities shouldn’t suffer so that this country can save money. You give to my family when you pay your taxes and portions of those taxes go to programs like Medicaid that support nursing care, medical coverage, and medical equipment for kids like Lucia who are deemed too costly by private providers. And you give to families, especially those who find themselves in need this season, when you make clear that we cannot celebrate tax cuts when the poor get poorer and the hungry go hungrier.
If this truly is not just the season of giving thanks but also of giving, then let us gather together to make not just my cup, but every cup of every parent in this country overflow with gladness. None of our journeys are typical, but that’s what makes this country so great. Let’s not let a few hard-hearted people in Washington make it otherwise, especially on Thanksgiving.
And from the bottom of my heart, for all your phone calls, prayers, and support,
Simply put, the welfare of our nation is hardly improved by an assault on the most vulnerable. And if this is the American way, our country will soon be defined not by its dreams and its opportunities, but by its exclusion of those in need.
Yesterday, my daughter and I struggled to get around in a crowded place–I had to get out to push shopping carts out of the handicap parking space (good thing I could even do so) and I struggled to push her wheelchair through a sea of tight twists and turns. Few people moved their chairs, and as we endured looks of disgust, glances of pity, and the fundamental unwelcome of barriers to entry, movement, and accommodation, my eyes filled with tears. As I sat down next to Lucia, I took her face in my hands and kissed her. I whispered in her ear, “They don’t know how special you are, but I do, and I’m so glad.”
You, politicians, cannot take our joy, but you are playing hard and fast with our very lives. As you go to vote this week, may we as the people continue to remind you that your task is actually to protect the weak, guard the sick, provide for the poor, rather than trade them for your own political gain. You are not doing right by my daughter and my family and something much more basic than our joy–her human dignity–is what’s at stake.
What will you do to make this world more inclusive? To give my daughter more opportunities and grant our family more dreams? Or will you continue to deny her the basic healthcare she needs to live her life? Will you not even give her that human dignity?
Take your cue from families like ours. With everything we’ve been through, we never give up on one another. Don’t you dare give up on 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.