Case in point: for several years after Lucia was born, because she needed and loved (and still loves) to be held, I struggled to find just ten minutes a day when my hands were free to sit in silence. But in the last ten months, I’ve finally realized something: I’m much better at praying when I’m holding Lucia. If I’m in my office alone, like I was this morning, I’m surrounded by my books and my responsibilities and distractions, and when an idea comes to me, my hands are instantly busied, trying to scratch down that idea on paper before it flees. My eyes flutter open and my attention floats away from prayer to the day ahead of me.
But if I’m holding Lucia, I can’t use my hands. When my eyes open or rest upon something, they often rest upon her, subtly bringing me back rather than away from the intention of it all. Lucia’s voiceless expectation, the hopeful way her eyes dart and wander and peek up at me lead me back to the very present act of holding her, and being with one another–and our just being with God.
What I often count as an aberration, an intrusion from the true beauty and solace of our backyard view of nature–the screech of a large truck coming to a halt or a car horn blaring–Lucia accepts with diligent curiosity, reminding me just how fickle and narrow my own attempt at spirituality can be.
Indeed, it is only through this quiet discipline that I’ve come to realize that acceptance, such willful abiding in God’s presence, is anything but passive. Rather it’s what I continue to yearn for after all these years, and that God has placed beside me a great spiritual teacher in my tender daughter is not so much a great irony, but a sweet revelation. I’ve always believed that you do not need words to pray, yet even my own beliefs can assert themselves so willfully that the prayer become secondary. But I’ve never so palpably felt the resonance and profundity of that quiet as when I’m in God’s presence with Lucia alongside me.
It was one of the last few days of the semester, the time when spring is tempting summer and so this particular student and I had elected to head outside to talk. As we settled onto the picnic table, she thanked me earnestly for all that she’d learned over the course of the semester, for my passion for ministry and students and for the class, but as she looked toward the exam she was to write, she had just one final question, she said.
“Do you really believe, Dr. Raffety, that people with disabilities have gifts for ministry?”
I could hardly believe what I was hearing, questioning whether I’d heard or understood her correctly, as she went onto qualify, quite sensitively, but definitively her disbelief in what I had believed to be the central tenet of the course–the one thing I’d been trying to get across all semester. It was a mixture of righteous indignation and bitter disappointment and bewilderment that took over me in that moment: just how might I convince her? Where could I even begin?
But might it work much the same way with gifts? I wondered. Because able-bodied people are looking for certain types of gifts in people with disabilities, gifts they’ve seen before in other able-bodied people and thus recognize, perhaps they literally don’t have the ability to perceive other gifts because they’re hovering under the surface, imperceptible to the able-bodied eye?
Less than a month into our study, a young woman from one of the families we interviewed died. I’ll still never understand how just a day after her sudden death, her mother had the wherewithal to contact a group of lowly researchers to let them know, but she did. One of our research assistants dutifully went to the funeral. Not only at her packed funeral but in a subsequent follow up visit, her parents shared the tremendous impact the young woman’s life had had on so many people around her, but also what they believed to be her unique abilities. As I listened to the interview, I noted how confidently her parents asserted, “She was an excellent judge of character. If she didn’t like someone, it was because she could tell they weren’t genuine… We often learned to take our cues from her reactions to people because she could really tell so much about them just from being with them,” her mother added. All this hypersensitivity and supreme ability from a 30 year-old woman who had physical and cognitive disabilities, limited purposeful movement and no words.
Was this family, especially still fresh in the throes of grief, generously but falsely attributing super powers to their daughter with disabilities? Or might it truly be possible, perhaps especially given their daughter’s presumed dis-abilities, that she had a unique way of interpreting and interacting with the world that has something to teach us?
I’ve always smarted at literature that pronounces the gifts of people with disabilities in terms that are limited and narrow–they’re notable for their wonder at the world, their slow ways of being, their vulnerability, even their joy. Those don’t seem like bad things on the surface, but the sparseness, simplicity, and uniformness of them, the suggestion that people with disabilities fall into these staid categories primarily because of their disabilities does not take full stock of their complicated ways of being human in the world that include but aren’t reduced to their disabilities. Of course, yet another suggestion, that people with disabilities exist as objects, not subjects through which able-bodied people can get in touch with their vulnerability and brokenness as distinct aspects of all our human nature, is also quite offensive.
There’s nothing broken about my daughter, thank you very much.
However, if I’m honest with myself, I’m not sure I’d ever contemplated how my daughter’s own differences in communication, brought forth by her disabilities, palpably registered in her limited movement, vision, and verbal invocations, might yield not just gifts of relationship or gifts of perspective but simply, gifts. I had long noticed that even when Lucia’s gaze was positively fixed on the ceiling or when she seemed little aware of her surroundings, when her father walked into the room, she’d giggle knowingly and even turn to smile in his direction. With low vision and limited head control, it’s pretty clear that she’s not seeing him, but sensing him otherwise; we’ve suspected that she “knows” him by the sound of the weight his carriage (and only his) induces upon our creaky floorboards, because she doesn’t react to anyone else coming into the living room that way.
I’ve long believed that Lucia also knows we’ve come home to our house and entered the garage by the way the light darkens inside the van and the bump into the threshold, at which she always starts smiling and giggling. But just a few days ago, she started smiling even as we pulled into the driveway! And when we came home late from our vacation a few days prior and deposited her asleep into her bed that night, but she ended up in our bed when she was crying the morning after, when I carried her downstairs into the living room, even before I could pronounce that we were home she beat me to it, erupting into giggles, without so much as turning her head to look around the room!
And so, a few days later when the child study team from Lucia’s school called and kept talking about how difficult Lucia is to reach, teach, and communicate with, I kept thinking, are we talking about the same kid? Sure, she doesn’t roll over and she can’t purposefully reach for objects, yet somehow, despite having low vision and not being able to purposefully turn her head with much precision, she knows who her father is. What’s the problem here, again? I wondered. My perspective had been so altered by what we had been seeing in our research study that I couldn’t see Lucia the way they saw her; in fact, I corrected them on it. I told them I didn’t want to hear anything more about how difficult my daughter was. Wasn’t it their job to perceive where communication was already happening and magnify it? Why were they approaching her as if something was wrong with her when it seemed something was wrong with them? (They didn’t like that very much.)
When I responded to my student’s question in May, I spoke from my experience regarding Lucia’s gifts for ministry and the gifts of some people with disabilities in our congregation. Just a few days after, I discovered this beautiful article from Amy Julia Becker, that could have been the anthem for my course, intentionally titled, after all as it was, “Ministry with People with Disabilities.”
But I feel convicted that even my own musings as a researcher, a scholar of disability, and a parent have been necessarily limited and incomplete. Looking back on months of our ethnographic study with families with children with disabilities who are nonverbal, nearly every single one of the families notes the gifts of their children with ease; a dramatic portion of them question whether their children are really cognitively impaired or if it’s just the world that’s disabling them. It makes so much sense–we believe that intelligence and gifts come in so many different forms. We say that all the time, but perhaps we don’t really believe it. But it was from the family of the 30-year old girl in our study, the person who had lived the longest, whose family arguably knew her the best and was the most familiar with her, from whom the most precise, dynamic assertion of gifts came.
The conviction of this research project has been that people with disabilities have so much to teach us about communication and joy and spirituality if we would just have ears to listen. But my student wasn’t the only one who needs to be rid of her own prejudice and obstacles and ableism to really appreciate the gifts of people with disabilities. That’s a lesson I’m learning everyday. Indeed, I might have replied:
“Yes, I do believe people with disabilities have gifts for ministry, but sometimes I may struggle to see them. That doesn’t mean they’re not there. It means I have a lot of growing to do. But I’m thankful that God has granted me a glimpse of them and I will continue to pray that I can learn to see differently and honor what God is doing in them and through them. I pray that God grants you that, too.”
We know that being needy makes you vulnerable in America, but whereas teenagers marching for “black lives matter” are vilified for lives lost, the white teenage activists from Marjorie Stoneman Douglas High are praised for their activism. It seems what we’re encountering is something even more pernicious than the inequalities themselves, rather the realization that not even all need is created equal. Since the election, I have been desperately sharing my own story to keep the lives of families with children with disabilities, alongside the lives of so many other marginalized families, in view; however, it only recently occurred to me that by telling our story, I may be rendering further invisible families like the ones being turned away at our borders.
You see, while my family’s need for life-sustaining Medicaid for our medically fragile child elicits incredible sympathy, that’s largely because my daughter’s disability is often viewed as an underserved tragedy that has befallen a white, educated, hard-working, affluent, heterosexual couple. But while so many other families on Medicaid (especially families of color), equally needy to mine, are belittled for their poverty, chastised or blamed for the presumed neglect, fraud, or abuse that put them into the system in the first place, a common response to my family’s vulnerability is not just pity, but often, congratulation. We are heralded for our love and our sacrifice for our daughter. Meanwhile, the very nurses employed through Medicaid who tend to our daughter, monitoring her heart rate, seizures, and breathing overnight, are immigrants like those being turned away at the border. They work in unsteady employment for low wages, rarely receive healthcare, and they have either already left their children behind in their countries of origin in order to provide for them, or they leave their children in the care of others, so that my family can sleep at night.
These migrant families are part of what scholars have called the global chains of kinship and reproduction, stratified care work that elevates some families on the backs of others. If you think about it, certain groups of immigrants, children who are “rescued” through inter-country adoption or born through international surrogacy, are uplifted, generously welcomed into our borders and our citizenship, while the families they came from, foster mothers, surrogates, nannies, and other care workers, languish in the shadows, families already torn apart yet silently, incrementally, with little fanfare. Thus, the separation of families at the border is but a visible demonstration of the invisible borders we often perilously draw around our own family lives.
The myth of the modern family and this tireless invocation of the need for “family values” suggests that each family stands alone. Yet, in articulating my family’s story of need I’ve become aware of the ways we are uncomfortably and unevenly indebted to one another. I’d like to believe that with the outcry on social media and the political pressure brought by the public upon the administration’s immigration policies, a new kind of family values is emerging that does not deny, yet makes visible these inequalities and the families who have endured them in the pursuit of wellbeing and freedom.
But the challenge comes in both maintaining our common humanity and acknowledging the injustices that bind and separate us from one another. We cannot afford to look away, for it will cost us all our humanity. But we also cannot afford to go on living our fictional, solitary lives while asylum is being criminalized, need is being stigmatized, racialized, and vilified, and children with families are being abused and institutionalized. My family, likely your family, needs these persecuted families, whether we choose to admit it or not. If we cannot break the global chains of inequality, perhaps we can at least qualify and dignify the emotional labor that families like mine benefit from everyday. We can refuse to participate in the politics that slander the need of some to elevate and fulfill the needs of others. We can turn away from pity and charity and toward justice, mercy, and grace.
And we can demand that America must do better by all of its families, especially those who have so painfully paid the price of vulnerability, so that others can thrive.
It’s not a finding in our research* just yet (although it very well may be), but the phrase the woman on my lectio and centering prayer app recites to me every morning to guide me into meditation and contemplation. But even though she’s been saying it for at least months, possibly years, it’s only recently stuck out to me as a sentence that matters, because my life is teaching me to listen.
A few weeks ago when I was conducting a delightful visit for our disability and joy research project, an insightful informant asked me if I myself am satisfied with the approach that they’re taking to Lucia’s communication at her school. It was a lightbulb moment for me. Of course it makes sense that as a parent of a nonverbal (although I really prefer the term extra-verbal) child with disabilities in conducting this project, I myself am searching for greater meaning, greater connection, and better communication with my kid.
But I realized, as so many parents in our project thus far, that what I’m really concerned about are the efforts and abilities of those around Lucia to appreciate her extra-verbal communications. There’s a tendency in our hyper-verbal culture to denigrate the extra-verbal contributions of people with disabilities or to spend all our time trying to make their communications like verbal people rather than appreciating them for what they are. There’s a tendency to rank modes of communication, to prioritize certain modes over others, rather than truly listen.
But what I know to be decidedly true is that I love being with Lucia. I talk sometimes when we’re together, but it’s never occurred to me that she doesn’t respond because she does, perhaps with a furtive glance, a sheepish smile, a dart in her eyes, a babble a chuckle, a startle, and more often than not, her silence is a gift. If I was with anyone else (in fact my husband just complained about this a few days ago!), I’d feel beholden to insert words to bind us together, but Lucia reminds me that words are not necessary, and that putting them on a pedestal, even for writers and poets and perhaps especially pastors tends to deny the stuff that makes the words–the people, their presence, their silence, the mystery–meaningful.
In one of our very first interviews one of the mothers told us earnestly and assuredly that her daughter was a terrific companion. And so is Lucia. And if I could have one thing in life I think it would be that others could experience that, know that, believe it, rather than pitying or assuming that what Lucia doesn’t do defines or mars her ability to communicate. The project itself comes from a deep conviction that we’re missing out on something about what it means to be human, because we haven’t learned to listen to people with disabilities, their families, and what it means to them to communicate. We haven’t honed this way of being human that is valid, that matters, and that is unique.
And so despite my introspection in that moment of research, to assume that I’m doing this project to make my kid a better communicator or to even tease out or enhance something that’s there but not just refined enough, would be antithetical to everything she has taught me and is teaching me. Conversation if you think about it, communication, demands and relies upon silence and space to make its meaning–without it, it’s cacophony, chaos, babel, just words. And it demands listening, attentiveness, paying attention not just to those words but to the space between.
In my love affair with centering prayer, I’ve found it so freeing to know that sighs to God are worthy, venerable, meaningful communication and that words are not necessary, not just to pray, but also for God to work. But when I’m in spiritual direction sometimes I smart because I feel like I circle back to the same insights about God and faith over and over and over again. Am I really growing if I keep coming back to the same lessons? I exasperatedly ask. And then my spiritual director reminds me that growth happens in circles, concentric circles that wind their way, but toward depth, not necessarily great breadth or height or length, as the world imagines learning to be.
And so here’s Lucia, patiently, quietly, daringly reminding her mama that being different, being quiet, listening, and leaning in are good things in this world of competing, calculated, cacophonous communication. If when it’s all said and done, she and the other families we have spent time with have only just taught us to listen, well, then we will have learned much more than we we started. We will have found a depth to communication that we often slight and ignore, we will have found a dignity in difference that we so often dismiss or deny, and we will have found out not just some things about words but about the people who somehow teach without them, the people who remind us that our humanity is so much more than just words.
*I’ve been leading an ethnographic research project with families with children with disabilities who are nonverbal and we’re studying cultures of communication and joy this summer. You can follow along with the research through some of my recent posts: Telling my story and How it feels to be free. (And I’m sure we’ll publish something academic-y someday, too.)
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 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 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.
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: