There is this phrase going around in Christian, perhaps primarily evangelical circles, that urges, just do the next right thing.
Lucia grins at mommy from her wheelchair post spit up…All photos mine.
Somehow, the phrase always feels a bit off to me, like it’s mocking me. Maybe the people who wrote it never had a kid with disabilities who’d throw up her food inexplicably every couple days and then grin at you as if nothing had happened (see above photo). Maybe they have a bit more control over their choices than I do. Or at least they feel like they do. Or they know right when they see it.
But I don’t.
It feels downright audacious to say that I know what’s right for me or for my kid anymore than I know what tomorrow may bring. And as I’ve grown older I’ve started to trust that maybe it’s not so much about getting it right by God as being faithful. Being faithful the best we can, and trusting and relying deeply on God for all of it, all the things.
So this morning after this little marvel spit up her breakfast and then looked around and smiled unfazed, we took a walk. We went walking past that old barn they’re refurbishing down the road, I picked a flower, I ran part of the way just to see the wind in her hair. I really think the right thing may have been to cradle her in my arms on the couch rather than expose her to the bugs and the heat and the Earth.
Refurbished barn down the road.Lucia holds the flower mommy picked for her on the walk.
But the faithful thing, savoring life with Lucia, has always reminded me of the extravagance that is God and the gifts God gives. And because God’s faithfulness is extravagant, it’s not just right, it’s also wild and free. So maybe we Christians, especially American Christians, have to be reminded that faithfulness is less self-reliance and more risky reliance on God. I wonder what our world would look like if we exchanged more risks for God for “right” steps.
A walk seems pretty tame in that light. But Lucia’s been a pretty good companion for such a journey, and maybe we’re just getting started…
In just a matter of days, we’ll come to the high point of the Christian tradition: the resurrection of Jesus. Pastors across the country will stand in the pulpit and use one of my favorite phrases–they’ll remind congregations that not just something has changed because of this resurrected Christ, everything has changed. The pastor I worked with started to talk about it last Sunday: because of the resurrection, “we are Easter people.”
Yet, I can’t help but wonder whether that resurrection life, in our current worldview, is really available to all people, not just in death, but in life.
There was an odd thread this semester connecting the two courses I taught, one on ministry with older adults and the other on young people, and it was the concept of “therapeutic culture.” For older people, this means we live in a culture that attempts to deny aging, because it smacks of weakness, failure, and bodily frailty. In our highly medicalized culture, we use therapeutic techniques to overcome these problems of the body, to fight against not just aging but also death. And we often prefer to live in the denial that we can win such a fight against time and mortality.
In contrast, in her book Chronic Youth, Julie Elman traces young people’s cultural evolution from “rebels” to “patients.” Today the same teenagers who were presumed innately rebellious and disruptive to society have become the object of therapeutic intervention and techniques. We are fascinated by the human brain, by young people’s ability to be conformed to the ideals of society and docile citizenship: the whole goal of adolescence becomes synonymous with young people being rehabilitated from their deficient youthful states to become obedient, accommodated citizens.
In theorizing adolescence through the lenses of therapeutic culture, rehabilitation, and conformity, Elman deftly shows how such a model leaves young people with disabilities behind. If they cannot be rehabilitated or conformed to suit or assimilate or accommodate to society, they cannot become capable, productive human beings.
Indeed, Elman’s work led me to puzzle through the concept and purpose of rehabilitation, which is something, as a parent of a child with multiple disabilities, that I’ve always felt uneasy about. When we constantly champion therapy as hope for young people with disabilities, how do we do so in such a way that maintains their integrity as unique and important human beings? When we stress the import of rehabilitation, especially for young people who are born with disabilities, I wonder what we think or hope they are being rehabilitated to? Because there is no prior state of health to often return to, perhaps rehabilitation is a never-ending, dehumanizing pursuit? Perhaps like those who are aging, young people with disabilities become victim to a spiral of therapeutic culture that champions a certain kind of person, a certain kind of life that they can never achieve?
I’ve struggled through this puzzle for so long, because my own child has been the recipient of meaningful, dignifying therapy–the kind that has appreciated who she is and at the same time spurred her on toward substantive goals of social interaction and self-expression. But that doesn’t mean I’m not fundamentally uncomfortable or unsatisfied with rehabilitation as one of the primary metaphors through which we instinctively interrogate the lives of people with disabilities. As anthropologist Gail H. Landsman points out in her study of mothers of children with disabilities, mothers clung to hope in therapy not because they really desired to change and alter their children, but because they thought it more plausible to change their children rather than change the way the world sees them. (A really poignant essay by Maria Rohan in Motherly discusses a similar challenge.)
But this has all got me thinking that if we truly are Easter people, if we truly are the church, we don’t have to buy into the gospel of rehabilitation, because we’ve got different, more transformative gospel at the heart of our faith. Rather than rehabilitation, especially for persons born with disabilities, surely resurrection, as a process of transformation, makes more sense in this world: people with disabilities, like all of us, live within the hope and promise and process of resurrection. They are not being rehabilitated or returned to some prior pure, whole, or able-bodied state, but they, too, are being transformed, made a new, dynamic, empowered, uplifted, exalted creation in Christ.
The problem, of course, is that too often a resurrection gospel has been far too therapeutic when it comes to people with disabilities. People with disabilities are implicitly told that resurrected life is either impossible because they can’t be rehabilitated as “normal,” or only narrowly possible in the hope of a miraculous overcoming or disappearance of their disability in life after death. But this is a false and human dichotomy, coopted by able-bodied imagination, hopes, and fears. This is why theologian Nancy Eiseland gave us such a powerful insight into resurrected life when she drew our attention to the scars and the wounds that Christ still possessed when he was raised from the dead. Christ’s body, imperfectly rehabilitated, yet fully resurrected in our midst, should remind us that signs of life among Easter people may look radically different than what therapeutic culture witnesses to.
And so here I am this morning, longing again, as one is wont to do in Lent, for resurrection in a fallen world. But what I continue to pray is that God would give me the wisdom to behold resurrection, in all its complexity, grace, and abundance. For when we preach of a mere gospel of rehabilitation as Christians we sell short the transformative, life-giving work God longs to do in this world in and through all of us as vessels.
But selling short people with disabilities is not just a problem for them, it’s a problem for all of us. For in a world in which we all grow old and die, therapeutic culture will never win the victory over death that has been won on the cross, a victory that doesn’t just involve the changing of a few lives, but the very world, the conditions, the parameters and limits in which we live. And living like Easter people, in light of that reality, means living with a promise that sees and uplifts and champions life among all people. It means we get to work in ministry that resurrects rather than rehabilitates, that points to who and where God is, even when the world may struggle to understand. And in so doing, that world, especially for people with disabilities, must and will be changed.
In the last few weeks, we’ve settled into a pretty natural rhythm with Lucia’s digestive struggles–constipation and screaming some days, vomiting others, and a lot of delight and sunshine in between. I feel like a broken record when people ask me how she’s doing, because we’re out of the woods we were in in 2018–pain management, feeding intolerance, hospitalizations–and yet, things are never easy. And if I’m honest with you and with myself, I’ve been feeling a bit weak and weary on this journey.
Lucia crying in pain in mommy’s arms. All photos mine.
It’s an unsettling, even repulsive feeling for me.
I don’t experience myself as a weak person. I don’t experience Lucia as a weak person either. References to weakness in common culture, even in Christian circles, often smart for me, because it seems like we prefer to instrumentalize and capitalize on other people’s weaknesses, particularly and presumably those with disabilities and diseases, rather than feel or examine our own.
Perhaps the problem is the blame, the shame we instinctively attach to weakness–for my own part it’s attached to the responsibility I carry as Lucia’s mother, a teacher to my students, a scholar in disability, a pastor to others–the feeling that I’ve got everything to lose and nothing to gain in embracing, showing, or even acknowledging my weakness. You can’t be weak when you need to be strong. And in a culture where mothers are so often blamed and scapegoated for society’s anxieties and ills, how can anyone be honest about their own trials, their own weaknesses, their own humanity?
But here’s an even greater truth I know: we’re not meant to heal ourselves.
In fact, if there’s one thing Jesus’s ministry teaches me it’s that healing is first and foremost connected and relational. It can’t happen if we keep to ourselves. No, Jesus’s healing ministry invites us in, all of us. It connects people to each other, in our own needs and messiness as humans.
And at the very center of it is a weak Jesus who wants to be with us in our own weakness! I kinda can’t get over that truth. I struggle to believe it, really.
Inside the Duke University Chapel on a recent trip.
But what if weakness–vulnerability–is more like permeability, surrender, yielding, and surprise–elements that, like Jesus, are so not of this world that we rarely recognize or behold them as God with us, rather they are conjured and dismissed as mere weaknesses when they appear in plain sight?
So this Lent, I feel myself being asked to do this wild, holy, dangerous thing of living boldly in my weakness–letting you know that I literally forgot to have the oil tank filled and my house had no heat a few weeks ago because I was so scattered and thin. And even then, Jesus didn’t shutter or scoff at my humanity, but loved me (and people loved me, too) anyway. As mothers we’re pretty good at being with our kids when they’re weak, but we cloak our own weakness lest it makes us reprehensible, permeable, out of control, irresponsible. And so last Tuesday, after I took Lucia to her usual doctor’s appointment, she came long to mine. I’d been trucking along with a painful sinus infection, too busy and preoccupied (although clearly not with heating my home!) to even feel or let feel my own weakness.
But a little holy weakness may be just what our world needs–let us not forget that in all this bustle and brilliance and appearances, we are all on our way back toward dust. So in my dusty moments, let me be reminded of not just death but the hope and healing of the cross. I mean, you really don’t have the cross without a fragile, incarnate God made weak, and yet holy. And so if weakness begets sanctification, let me be bold in my weakness, heartfelt in cleaving to God and to others in this world that worships strong.
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.
One of my favorite photos of our girl. My photo.
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.
My photo. Our family at Christmas.
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.
Lucia, also rolls through life with style. Pictured here in her Cinderella Halloween costume that her nana made for her.
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.
I was really humbled to preach the first sermon in Advent at chapel yesterday at the seminary. For those of you who have been asking, here is a transcript of the sermon.
As begin our journey in Advent this morning, we recall that the narrative of Jesus’s birth in Luke is intertwined with the parallel story of John the Baptist’s birth and his parents Zechariah and Elizabeth. In verses 5-20 of chapter 1, we are plunged into what Joel Green calls “the small town struggles of a little-known priest and his wife…the atmosphere is permeated by the piety of Second Temple Judaism and Jewish hopes for divine intervention.”
Now we’re living in a very different context than Zechariah and Elizabeth, but they feel like people we seminarians can relate to. They’re pretty faithful people. They’re really faithful people. Zechariah is a priest who’s given the honor of entering the sanctuary and offering incense in conjunction with sacrifices. The scripture tells us that he and his wife Elizabeth “were righteous before God, living blamelessly according to all the commandments and regulations of the Lord.”
But in placing their childlessness directly after their high religious and social status, the scripture isn’t just showing us their social disgrace but reminding us of their suffering. For Zechariah and Elizabeth who scripture tells us are “both getting on in years” we can only imagine that if they have been struggling to conceive for quite some time, they have likely known the pain of losing children, carrying hope and letting go of it.
And so when the angel of the Lord appears to Zechariah, fear overwhelms him and though he’s told he and his wife will rejoice at the birth of a son John who will be great in the sight of the Lord, he doesn’t believe it. “How will I know this is so? For I am an old man, and my wife is getting on in years.” We’ve been prepared for years for this, Zechariah thinks. We’re in the temple everyday, we’re faithful, we’ve prayed and yet our prayers have gone unanswered. How will we know this time will be any different?
I find some solace in this beginning to Advent, this hard place, this small story in which God comes close and carries out God’s very plans amidst our lives. But I struggle to believe, too. You see, I have been pregnant during Advent, filled with the expectation of a child, of hope, of new life, but I have also miscarried in this season. And a few years ago, during Advent, even after having a child, my husband and I were still waiting. Following our daughter’s seizures and hospitalizations, around 10 months they did some blood tests, they sent them away, and we waited for a diagnosis.
And when we got our daughter Lucia’s diagnosis, a progressive, genetic disease of the brain, I remember wanting to be prepared. I googled the symptoms, the treatments, the prognosis. “Death in early childhood” it read. And so I remember wanting to be prepared for when, for how, for what that would look like, so I googled a lot more. We got a diagnosis and now I wanted a prognosis. I remember wanting to be prepared.
But for what? So I could hold back just a little bit, so I could love her…just a little less? What?
Now I would be lying if I told you that as a parent of a child with disability and a scholar of disability that I wasn’t pretty uncomfortable with a text this morning that seems to use muteness, disability, as a punishment for doubt and disbelief.
But my own experience also makes me wonder if there’s more to what God is communicating here. Because I remember that feeling of seeing the beautiful child God had put before me and yet wanting even more reassurance that things would be okay. Maybe that’s where Zechariah was, too, after all that waiting, even with the angel’s proclamation, he just wanted reassurance that things would really be okay. Even the good news wasn’t good enough to overcome all his fears, his plans, his googling. Maybe for Zechariah and for me and for you, we have been tempted to continue doggedly on with our own plans, because at least it gives us some control. When we begin the story, Zechariah and Elizabeth are seemingly in control of their lives and where we end our lesson this morning, perhaps the problem is that Zechariah is still struggling for it. He’d rather cling to control than experience what God has in store.
And so silence that looks like a curse of Zechariah’s unfaithfulness may be the very reminder in this Advent season that God is active in our smalltown lives even when we don’t believe it to be so. That loss and heartache and suffering and pain are the very places where God seeks to meet us, but where we often try to control that God who wants to break into our lives and our world with radical, reckless love. The best thing that God did for me in that Advent season was not to give me a clear prognosis, a healthy child or a new computer where I could google my future to death, but like Zechariah, God invited me to lay beside my plans and just love the person in front of me. God gives us life to go on living, not always in the form of children, but always in the people beside us and the ordinary circumstances of our lives—reoriented, shifted, rerouted toward the extraordinary love of Jesus Christ, our savior.
That son who will be born to Zechariah, John, will go onto urge us to “prepare ye the way of the Lord.” But make no mistake this Advent, we are but participants in the saving work of God, Jesus, and the Spirit. Thank God that our preparations are not our own.
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.
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.
Face paint, complete with a smile. My photo.
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.
Lucia at her sleep study. My photo.
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.
Lucia smiling outside during spring. My photo.
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.
Resounding joy. My photo.
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.
little sacred space 