There have been all these memes and review about the rottenness of 2018: it’s very clear many of us are ready to say good riddance. It was not a banner year for our family either–Lucia had one surgery and two unplanned hospitalizations and both of those came during busy semesters. But, she and we also had one of the best summers of our lives! She was healthy and happy and we went on two vacations with friends and family.
When I look over this year, the lectures I got to give, the conference I got to plan, the articles I published and submitted, the major grants I’ve won, and the mentoring and ministry and preaching I’ve done, it means that much more that it didn’t happen in seasons where things were easy or seamless, and yet there is so much to treasure and cherish. Perhaps especially when things aren’t perfect, it really helps to look back. We rarely learn from triumphs and successes. We tend to just keep forging ahead. But disappointments, mistakes, and challenges are the sites where growth can take seed if we’re willing to own up to them.
In that spirit, I’m honored to share some of what I’ve learned with you in this year, and I invite you to do the same. What end of the year rituals do you have? What hopes do you have for 2019?
They are the social media forums that are the windows to our souls–an article about the lack of services for young adults with disabilities making the transition from school to work and out of the home is bookended by a comment from a mother whose daughter is only two and a half, but she says these are the very challenges that already keep her up at night. Another post in a Facebook group is from a mother who’s just given birth by emergency c-section but less than 24 hours later she’s writing to ask if there are other parents whose children had similar births. How were they affected? she asks. What did their futures hold?
A few weeks later I sit in the pews in the second week in Advent and the pastor up front tells us about a question put to her at the beginning of this school year that she’s still pondering in this season, over four months later, and she asks it of all of us:
“What are you waiting for?”
I am not waiting for my daughter to die, speaks a still, small voice inside of me.
It’s a statement that feels so foreign to my being that I’m altogether startled by it, as if I brushed up against it and now I’m disoriented and dizzied. No one waits for their child to die, I ponder…and yet we all do, in a way. In fact, how many of us really live our lives longing for, with an expectation for life, rather than death?
I think back to those message boards and I see people for whom the future is tyranny and agony and for whom waiting is shot through with worrying and fear, one might say even death and despair. As a parent of a child with a terminal disease I know that I would not be able to live with the tyranny of the future looming like that. I’m not saying that I do not have moments where I blink back tears, so starkly aware for just a moment that life without my daughter seems altogether bleak or meaningless. I have also had moments where her suffering seemed to be costing her too much in the land of the living.
And that thought didn’t come from nowhere. Clearly, I am not immune, as anyone who lives in this world, to the reality of the pain of death.
But I realized relatively early on that while embracing Lucia for who she was would mean embracing death, it would also mean living an extraordinary life quite impossible without her.
A few weeks ago as I preached that first week of Advent, ruminating on John the Baptist’s birth, a friend of mine pointed out that Zechariah and Elizabeth, like Mary and Joseph, would have their greatest longings for life granted in this child, only to find their greatest heartbreak in his death. Another friend of mine pointed out recently, and I’d never thought about it this way before, that these parents were living with children who had terminal diagnoses. Jesus was predestined to die a premature death.
But there’s so much more to the story, as we know. And Jesus’s story, even as it is often overshadowed by his bloody, violent crucifixion, was all about overcoming death–it was all about radiant, redeeming, everlasting–life.
What are you waiting for?
What are you waiting for??!
The question begins to scream at me. Because I can plainly see how the story of Jesus’s life, his parents’ lives, all our lives, are not so much about death, but about living life with abandon, with reckless, heartfelt love that bleeds out all over those around us who are suffering here on earth. What if that kind of all of us-all on love, is what life, not just death, is really about?
It strikes me that in this third week in Advent, as we light the candle of joy and we celebrate joy in Jesus’s birth, as well as Jesus’s life, death, and resurrection that the tyranny of the future really threatens to rob us of the joy of the present. That how we wait is as crucial as what we are waiting for.
So as for my family and I, the tyranny of the future can wait. We will go on living, looking for signs of life, not just in this season, but in every season. And we will wait with joy.
Over a year and a half ago now, we lost a wonderful man. He was a deacon at our church, a playful, yet wise soul, and he happened to be the husband of the pastor I work with at church. A month or so after he died the family sent out thank you notes with his photo and the caption read, “Just another day in paradise.”
That phrase was Pete’s response more often than not to the casual question, “how are you doing today?” It was maybe 20% conceit and 80% truth–you see, Pete was suffering from Multiple Sclerosis. He’d needed to ride in a wheelchair, and he had lots of body parts that didn’t work the way they once did after many years of living with the disease.
But if you got Pete talking on the subject of “paradise,” he’d almost always follow that up with something about his life being “an embarrassment of riches,” and that was something I know he meant with his whole heart. Even from his vantage point in his wheelchair, his body failing, Pete could see that what was important, even lavish was his own very life and the people in it, and they made that life worth living every single day.
But if you’re any reader of this blog, you know that my husband and I have tried to make way for at least a third option, one that kind of reminds me of how Pete lived his life. Because, although to some extent everyday is a struggle with and for our daughter Lucia, everyday it also somehow just as it should be. Pete’s perspective on an “embarrassment of riches” truly resonates now that we’ve had four years with a daughter we were never guaranteed. And that perspective, on the days where she’s struggling to keep any food down or inexplicably crying in pain, makes all the difference.
I guess the lifestyle philosophy I’ve learned from Pete, my life, my daughter and others around me goes something like this–you either wake up convinced that the world is not as it should be, or you trust that there’s some wisdom, some perspective, some peace to be found in acceptance of this precious life you’ve been given, and you go about living it not with resignation, but with gratitude. And gratitude, somehow, makes everything whole.
That’s what I saw and learned when I interacted with Pete, that he wasn’t papering over the difficulties and playing Pollyanna, but that in his wrestling, he’d found his way to sincere gratitude and that gratitude permeated every corner of his life. Someone noted the other day that even when I tell them about the difficult times with Lucia, I’m usually smiling. How can that be true? they wondered.
Because life with Lucia is a gift, plain and simple. And life with Pete was a gift, too.
Even on the roughest days, I can’t help but see life lived with Lucia as “another day in paradise,” “an embarrassment of riches.” It’s not trite, just true. And just as Pete taught me, I try to share that life of gratitude with others.
You can find my colleague, Beth Scibienski’s book, Who is God When We Hurt? that chronicles her life with Pete, her caregiving, her faith, and her grief by clicking here.
It somehow comes out both flippantly and emphatically from the podcast co-host’s mouth one afternoon: “As a mother, your job is to grow them up and get them out,” she says, “to get them to be independent,” she clarifies.
I’m sure most people would agree with something like that, but in an instant, I’m on the outside looking in. I’m tempted to consider that if I’m not mothering a child who will be independent, what am I mothering her for? I’m tempted to believe that motherhood is decidedly more bottles and bullies and backpacks and basketball than surgeries and standers and hospital stays and wheelchair repairs.
But what if it’s not? What if, even if motherhood isn’t shared, even if it’s different, it can still be valid? And what if some of those mothers on the margins can expand our ideas of what it means to mother, and what it means to care, to love, and to grow in relationship with our kids if we just let them in?
In her viral essay, “SuperBabies Don’t Cry,” writer, blogger, and mother Heather Lanier paints a similar picture. She talks about how she did everything “right” in her pregnancy and her child was born with a disability. She talks about how she blamed herself for her daughter’s disability, but she also talks about how blame suggests that we once had control in the first place. And underneath this blame often lies a fear of disability, of what is different. And what is different is emphatically part of being human. “Here’s the thing,” she writes. “If you buy into the false narrative that the body is controllable, that illness can always be prevented, then by proxy you are left with a disturbing, damaging, erroneous conclusion: the belief that a person’s disability is their fault.”
Like Lanier, part of my problem in seeing myself as a mother is that I’d subtly bought into some of these stereotypes about control, ease, and perfection, and so I don’t see myself as a mother so much as a keen strategist, a promising medical student, a scholar of disability, even. Maybe it’s because my early days as a mother were so bittersweet–snuggly and hopeful, yet tinged, marred by the words “failure to thrive,” an MRI at four months, vomiting, a neurological diagnosis, so I suddenly wondered where I would fit in. What could a mother bring to these difficulties? What’s a mother to a child who needs hospitals and eegs and feeding tubes to diagnose, treat, and survive?
Indeed, I remember the way I tried, as any mother would in those early days, so unsuccessfully to keep Lucia comfortable, to keep her from screaming, not just for her sake but for mine. If I could get her to stop screaming, we could all find some peace, I’d think, we could all be okay, maybe she would be okay.
And when I couldn’t even manage that, I knew I had failed. There was a moment where I had to drive all over town to find a pharmacy that would compound the medication that Lucia needed and on those drives she wailed in pain. As we sat just outside the pharmacy, me holding her as she cried, an older woman next to me chided, “You have to talk to her, mama. Talk to her, just don’t let her cry.” Oh if only my talking would have had any effect! If only my child knew I was there. And in that moment I felt that I had failed her as a mother. My mothering was a failure because my child was not okay, and while that wasn’t my fault, I could also barely offer anything to fix it, so sometimes retreating from her heart wrenching cries, willfully ignoring them, for instance, so I could keep my eyes on the road and my resolution all the way to the pharmacy in question or the hospital in many cases was the best I could do.
And of course, my best wasn’t just not good enough to make Lucia comfortable, it wasn’t good enough for me. I haven’t realized that until now that even though I’d navigated all the medical hurdles and the challenges with strength and grace, those triumphs didn’t seem to have much to do with mothering somehow, because behind the scenes everything still hurt. We were out of control. This was motherhood, too.
But gradually I realized that even though I couldn’t comfort her I could love her. I could accept her as she was. I was damn good at accepting her as she was, at loving her for who she is. She’d done the same for me somehow in those moments where I’d seemingly failed her, she’d always still receive me. There were more and more moments where as she opened up to the world I could see that she knew me and although I couldn’t fix things, she knew what it was like to have me nearby.
And so I began to write about this motherhood with all its aches and pains. After a semester of teaching on disability and raising my own child, I wrote an essay about a child who was not to be pitied, because she is a beloved child nonetheless. Today I realize that “I’m Not Sorry” was not just an essay about my daughter but also an essay about a kind of motherhood, my motherhood, which is not to be pitied but revered, respected, trusted, even included. Indeed, writers like Landsman and Lanier, both mothers of children with disabilities, have opened up a space where motherhood is getting just a bit broader and roomier for those of us who may not have thought we fit or had anything to add. Suddenly we wonder if the lessons from our motherhood have merit–if being both a mother and a nurse and a Medicaid expert and a therapist can be a tremendous combination, something that enhances the mother model rather than detracts from it.
On one recent morning when I’ve looked forward to working from home, stealing a Monday morning from students, distractions, and the need to jump out of my pajamas, Lucia begins to whimper and then wail in pain as her nurse begins to get her ready to school. And although Sylvia is fully capable of comforting her and getting her ready, I realize something so crucial: “but, I want to be with her in her pain,” I think. And I run down the stairs and I peer into her crib and I scoop her up, knowing I can’t fix it, but knowing perhaps more fully than I’ve known most things in my life that there’s nowhere else I’d rather be.
And I suddenly realize that what makes my mothering significant is these moments, too, these moments of strife and sorrow that I choose with this child, even when I can’t cure or comfort, but when I quietly accompany her, arrested of my own powers and control, to wherever we must go. I go with her faithfully and fully, because as hairy and fraught as it may sound, I’m grateful for even this moment because it is a moment with her. I grew to be a mother who learned through much strife and angst that it has never been my role to soothe or to fix it for my child, that I don’t control or choose the circumstances of our life, and without Lucia none of those lessons about loving or living would have been possible.
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.
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.