Category Archives: disability

Sharing stress (rather than sweeping it under the rug)

Well, we did it again.

We did this thing where we assumed that we could sweep Lucia’s feeding difficulties under the rug, live effortlessly in the unknown, and go about our regularly scheduled lives.

But on the same Monday after a weekend of both smiles and spit ups, even though we got her back to school, my husband and I were both feeling the weariness of acting like everything is okay when your kid’s not okay, of playing along, going through the motions, ignoring, burying, coping…repeat.

This is our life’s rhythm, our girdle of underlying stress that we often do manage so seamlessly that we never have to even acknowledge it’s there, because we calculatedly never move beyond the present. We stay faithful and attentive to smiles and vomiting for this morning, this day, and so, we are okay.

It’s definitely easier to notice the stress, though, creeping up on someone else–how my husband tenses, preps himself with every cough he hears from Lucia. Last night in the kitchen he remarks on the violence in the act of vomiting. As a baby, we watched Lucia struggle to eat, and despite the intervention of this feeding tube that has undoubtedly saved her life, it still often feels like feeding is a reckless and perilous pursuit. After all, aspiration, food entering her lungs due to lack of muscle coordination, all this coughing, and vomiting, could kill her, too. Feeding issues are why she was hospitalized two out of three times last year. And we will never say it aloud to one another, but deep down we both feel so lucky to have not had her hospitalized this year, even though it’s likely that for one reason or another we probably won’t be able to avoid it.

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My husband gives Lucia a respiratory treatment at home. All photos mine.

I’m foolishly caught off guard by the stress when I realize it’s there myself–Evan listens patiently to me as I list through everything but Lucia’s vomiting one day, like a woman who’s rustling through her life, yet wholly unsure of what she is looking for. He helps me find it that evening in the kitchen with his willingness to admit, “I think what’s been going on with Lucia has been affecting me more than I thought.” The girdle of stress droops a bit, sags rather than sinches–how good it feels to be found there for a moment. No more searching necessary, for an instant, the three of us are found, held, suspended, even safe.

You see, we’re not inspirations, we’re not superhumans, we just don’t talk about the stress all that much because we don’t know how. We’d just as soon it’d go away and on most days it is faint and pretty insignificant anyway.

But there are days and weeks and even months like these that also remind me that it’s real. There are few relationships I feel like I can be myself in and open up in because of it. There are too many memes and urgings out there to practice self-care as an antidote to it, as if stress is to be prevented or rooted out one cocktail or massage at a time.

But I imagine stress will always be there, no matter how (well or not well) we live this life. As a pastor, when other people tell me how much they hurt losing a loved one or seeing someone they love suffer, I often say to them, “It’s a good thing that you hurt, because it shows how much you care.”

When I read those words, my own words, the tears that never come, start to bubble toward the surface. You mean it’s okay to sometimes feel these things very deeply, to be torn apart and torn up by them, to have good days and bad days? You mean it’s okay to not be okay sometimes, precisely because you love your kid so damn much?

You mean sometimes by acknowledging the stress, we can bear it? That acknowledging it doesn’t mean we magnify fears or betray our children, but rather unearthing fear may be the true antidote to letting it weigh down so tightly?

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Evan cradles Lucia in his arms as she cocks her head to listen to him.

I don’t know about you, but I often feel like I live my life in incredibly pedantic, redundant circles, and it is so easy to chide–how is it that we’ve ransacked the whole house, only to find what was there all along, was there before, will always be there? And how the hell does that even help matters? But sometimes, it seems, by just acknowledging the stress out loud, we can bear it, we can face it, and facing it somehow disarms it, just a little bit. I felt the grace of that on Monday, that acknowledging stress doesn’t really magnify fears in the way we might suspect it would, and that the best care is not just self-care, but community care, care that holds and suspends and uplifts and acknowledges, and in so doing, disarms but doesn’t trivialize, shelters without saving.

The trouble is, neither Evan nor I ever want to be saved from a life with Lucia–in fact, we want that life more ravenously and deeply than we’ve ever wanted any other thing. We don’t even want it or need it to be perfect, and there’s a lesson in there about love, because it’s not always what we thought it might be, and yet, it’s right where we need to and want to be. So thank you for holding my stress and bearing it for just a moment alongside us–it reminds me that there are more moments like that one in the kitchen if we can be brave and bold to believe and trust that we’re not in this alone. It reminds me that stress is just a portion of a life well lived, so maybe it’s best not swept under the rug–maybe I can share it with you.

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Lucia cracks a smile.
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Why I prefer the (next) faithful thing to the next best thing

There is this phrase going around in Christian, perhaps primarily evangelical circles, that urges, just do the next right thing.

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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.

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Refurbished barn down the road.
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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…

Resurrection in the world

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.

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Inside Notre Dame, 2013. Photo by Evan Schneider.

Holy weakness

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.

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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.

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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.

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Happy moment with Lucia.

What I Learned in 2018

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.

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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?

  1. I am thankful for the ordinary–it is a gift and it is enough.
  2. There is freedom in telling our stories.
  3. The myth of the modern, American family is that each of us stands alone.
  4. Words are not necessary to communicate.
  5. People with disabilities have gifts for ministry.
  6. I am a mother, too.
  7. As for me and my house, we will wait with joy.

*If you want to see my posts from previous years, check out how I found my voice in 2017 and What I Learned in 2016.

Waiting with joy in Advent

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.

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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?

As she closed her sermon, the pastor talked about how so much of ministry is about waiting with people.  And suddenly it occurred to me that when people wait with me, they’re often assuming we’re waiting for Lucia’s death–they tiptoe, they want to walk with us gently and patiently toward an inevitable tragedy, an inevitable heartache.  But I just don’t think that’s how God sees Lucia and her life.  And that isn’t how God is with us, how God has waited with us all these years.

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Photo credit.

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.

A life of gratitude

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.

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Pete, rolling through life with style.

Around the time our daughter Lucia was diagnosed with a terminal, genetic, progressive disease of the brain, my husband heard a radio broadcast about other kids with a similar rare disease, to which parents mentioned two lifestyle options–you can either fight like hell seeking a cure, they encouraged, or you can sit in a corner and mourn this terrible disease.

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.

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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.

Our preparations are not our own

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.  

Blessings on your Advent preparations!

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Zechariah, Elizabeth, and John.  Photo credit: Sweet Publishing/FreeBibleimages.org.

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.

I am a mother, too.

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?

Recently as I’m writing up the research we did with kids with disabilities who are nonverbal and their families, I’ve been re-reading a treasure trove of a book by the anthropologist Gail H. Landsman on Reconstructing Motherhood in the Age of Perfect Babies.  In it, based on her research with hundreds of mothers, Landsman highlights the diminished motherhood of mothers of children with disabilities.  They have failed, she says to follow “the culturally appropriate trajectory,” which amounts to raising up a “normal child” (2009:10, 109).  Because ability is the “criterion for personhood” in the U.S., “the socially constructed reduced personhood of the [disabled] child is likened to the women’s experiences of motherhood” (50).

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.

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The moments I live for!  With Lucia on the porch.  My photo.

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.

Thanks to this child, I am a mother, too.

Praying without words

Somewhere around Thanksgiving I decided to try starting my day (again) with lectio and silence.  No matter how pressed I feel for time, when I get to my office or when I scoop up Lucia and head to the porch, I try to lend some space for breath and nothingness and silence.  Here I am in August and I’m still doing it, so there’s something.  But the reason I’ve been practicing some form of centering prayer for over a decade now is not because I’m good at it or because it’s easy, but because as with any discipline, it reminds me what a spiritual novice I really am.

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.

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Morning prayer with Lucia on the porch.  My photo.

And would you believe it?  My second prayer word that I’ve been wrestling and striving toward all these years so ungracefully and confusedly is none other than abide.  And in leading me away from myself and toward attention to others, to my world, and to God, God continues to urge me to appreciate and learn from different ways of being.

Different ways of being that are good and perfect gifts.  Different ways of being that are of God.  Different ways of being that change us for the better, that lead us to learn from such wordless, sanctified offerings of pure, unadulterated delight that God has so generously made.