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.

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?

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.

Lucia cracks a smile.

Why I prefer the (next) faithful thing to the next right thing

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…

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.

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.

Happy moment with Lucia.

Virtual Coffee Date

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.

Doesn’t she look demure with her irises?  My photo.

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!

I can’t help but smile when I see this picture.  My photo.

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.

I need a lot more color in my life, don’t I?  My photo.

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!

Pretty nice, right?  Photo by Evan Schneider.

What are you up to these days?  I’ve finally updated my Current Loves and What I’m Reading if you want to check them out!

How it feels to be free

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.

 

Telling my story

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?

Part of the announcement we made about Lucia back in 2015                                        (click here to link to the WHYY story).

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.

 

 

Why healthcare is about human dignity

It’s a new bill (this Graham-Cassidy repeal bill), but the same, old story.

Curb healthcare to the poorest, the sickest, the oldest, the neediest, the youngest, and the disabled to cut costs.  But without healthcare, without Medicaid,  not only will costs soar, most importantly, real people will suffer.  I think of my own family–without private duty nursing provided by Medicaid, especially those overnights–we’ll surely be in the emergency room with our medically fragile child far more often.  If Medicaid is removed and we’re forced to rely on our private insurance, even if we run through our savings, we’ll still seek healthcare for our daughter, and we’ll continue to struggle to care for her at home (which is why Medicaid exists), because that’s what families do.

Simply put, the welfare of our nation is hardly improved by an assault on the most vulnerable.  And if this is the American way, our country will soon be defined not by its dreams and its opportunities, but by its exclusion of those in need.

Yesterday, my daughter and I struggled to get around in a crowded place–I had to get out to push shopping carts out of the handicap parking space (good thing I could even do so) and I struggled to push her wheelchair through a sea of tight twists and turns.  Few people moved their chairs, and as we endured looks of disgust, glances of pity, and the fundamental unwelcome of barriers to entry, movement, and accommodation, my eyes filled with tears.  As I sat down next to Lucia, I took her face in my hands and kissed her. I whispered in her ear, “They don’t know how special you are, but I do, and I’m so glad.”

More happy whispers between Lucia and her dad.

As I wrote about recently, no matter how hard they try, no politician nor party nor hospital nor inhospitality can ever take away our family’s joy.  But as I look around the already trying, precarious nature of Lucia’s fragile life, I sure wonder why they try so hard–why they target families for whom society is already so unkind, for whom another year of life is hardly certain, families who know all too well pain and fear and heartache and who now face even more fear and uncertainty–financial, medical, and even physical.

You, politicians, cannot take our joy, but you are playing hard and fast with our very lives.  As you go to vote this week, may we as the people continue to remind you that your task is actually to protect the weak, guard the sick, provide for the poor, rather than trade them for your own political gain. You are not doing right by my daughter and my family and something much more basic than our joy–her human dignity–is what’s at stake.

What will you do to make this world more inclusive?  To give my daughter more opportunities and grant our family more dreams?  Or will you continue to deny her the basic healthcare she needs to live her life?  Will you not even give her that human dignity?

Take your cue from families like ours.  With everything we’ve been through, we never give up on one another.  Don’t you dare give up on us.

A Medicaid Story

It was an ordinary, sunny, Saturday morning when I crept downstairs into Lucia’s room to dismiss the night nurse.  “It was a beautiful night,” one of Lucia’s nurses, Viktoriya, purred in her thick, Ukrainian accent, flashing a wide smile, gesturing toward Lucia, still sound asleep in her bed.

I smiled, too, and sighed in relief.

Lucia hadn’t been having “beautiful nights” as of late: for almost a year now, she’d been screaming and crying out in pain in the wee hours of the morning and as she was just waking up.  The crying was so extreme that the nurses and even we, her parents, couldn’t comfort her.  Finally, we’d figured out that she was experiencing muscle spasms and cramps because especially in her sleep, she can’t move purposefully, so a low dose of Valium had recently been providing some relief.

But with Viktoriya (who mind you was a doctor in Ukraine), Lucia often had “beautiful nights,” nights that Viktoriya never took credit for, but rather rejoiced in innocently, as one would a gift.  And yet, we knew there was something special about Viktoriya, about the meticulousness of the care she gave, the extra knowledge she possessed about the medications Lucia was on and their interactions, even the way she played with Lucia, offering her therapy when she’d wake up early in the mornings.

As we neared the front door and we talked about the pulse oxygen machine–the pediatrician had asked to get the alarm rates to make sure Medicaid would approve its rental for the coming year–Viktoriya detailed with precision the attention she paid to Lucia’s heart rate.  “You see, when her heart rate starts to climb, I can see she’s getting uncomfortable, so I do not wait for her to cry,” she said, “I turn her.”  And she motioned.  “I turn her from side to side all night and she never wake up,” she said cheerfully.  “She sleep perfectly just like that.”

Even as I write these lines, I am in awe.

In awe of the devotion and care my daughter receives as not only she, but my husband and I all sleep through the night, all the while a nurse keeping watch, anticipating and aiding Lucia to find safety and comfort and rest.  It’s just no small thing that in a world where life is so difficult for Lucia, where at night she faces seizures and breathing and pain, a nurse not only keeps watch for the big things, but guards her sleep, attentive to her every desire, a desire even to move.

As Viktoriya left that morning, I scribbled a post on Facebook, letting my little world know what she’d done and been doing for us, and why Medicaid has been such a boon, a comfort, a watchman for our Lucia and for our lives.

Cuddles with my girl.

I did this before I knew Medicaid was about to come under threat yet again.  I did this before I knew I’d begin losing sleep again not because of Lucia’s medical conditions but because of the care that may not be there in years, months, or weeks.

How I feel about Medicaid is how I feel about Viktoryia and so many of the nurses who have come into our lives–they are a gift.  We can’t possibly pay for the healthcare that Lucia would need to live and that in itself is frightening and humbling.  Yet the state and the federal government give us the support we need to live our lives as a thriving, joyful family, not just of 3, but of 9.

That’s about how many nurses, plus two parents, it currently takes to provide Lucia the round-the-clock care she needs to make it through the day.  Or maybe it’s more like 16–that’s the addition of the five specialists that Lucia sees on a regular basis, her medical care that Medicaid, too, helps support.  Or maybe it’s more like 20–that’s her therapists and her teacher at school, a special needs school where Medicaid helps supply equipment, her Medicaid-supplied nurse makes it possible to attend, and Lucia gets great education and therapy.

I could go on.  I know the numbers are much higher still–it’s you, millions of people who pay taxes and the government, that help support families like ours, that make it possible for Viktoriya to play watchman at night so Lucia doesn’t seize uncontrollably, so she doesn’t wake up crying in pain, and so her parents don’t have to hold vigil night after night as they struggle to work and to care for her.  It turns out, I’m not just in awe of Viktoriya, but the abundance we have received through Medicaid, which is in no small part thanks to all of you.

But today, I am also weary.  Weary of the proposed cuts to Medicaid in this newest bill in the Senate, and weary of the plan to make savings from cutting people from healthcare who need it most.

Please join me in bombarding Congress with stories of gratefulness about children like Lucia and the gift of Medicaid by calling your Senators over the next few days.  Please share our story and Viktoriya’s story.  Please tell them that Medicaid is about people and long nights and “beautiful nights” and families like ours.  Please tell them what Medicaid has done for us.  And please tell them how thankful and in awe we are of the people who have provided for our daughter.

Psalm 130

¹ Out of the depths I cry to you, O Lord. 
²   Lord, hear my voice!
Let your ears be attentive
   to the voice of my supplications! 

³ If you, O Lord, should mark iniquities,
   Lord, who could stand? 
⁴ But there is forgiveness with you,
   so that you may be revered. 

⁵ I wait for the Lord, my soul waits,
   and in his word I hope; 
⁶ my soul waits for the Lord
   more than those who watch for the morning,
   more than those who watch for the morning. 

⁷ O Israel, hope in the Lord!
   For with the Lord there is steadfast love,
   and with him is great power to redeem. 
⁸ It is he who will redeem Israel
   from all its iniquities.

Why Christian calls for unity in the wake of Charlottesville may be both racist and theologically unsound

Whether it was the clergy in full vestments, arms linked facing down gun-wielding white supremacists or the torch-bearers chanting anti-semitic threats, it is abundantly clear that theology is not neutral in 21st century America.  And yet, in the wake of Charlottesville, many Christians have responded with opaque calls to unity and appeals to people of faith to “tear down the racial and cultural barriers that divide us.”

At first I thought such statements offended me merely as a cultural anthropologist.

You see, while it is powerful and poignant to condemn discrimination and racism, it seems a problematically ethnocentric, if not a positively white-privileged perspective to blatantly condemn “the racial and cultural barriers that divide us.”

Whose culture, whose race is dividing us?  Perhaps it seems like mere semantics, but when Christians posit that culture and race are problems that breed division, that they are the very evils that need to be stamped out, we reveal that our calls to unity run dangerously close to the rhetoric of those who rallied in Charlottesville last weekend (even if that was not the intent).

Even though race is a social construct, we do see color and it has socially and politically relevant power and effects that especially white Americans must grapple with rather than ignore.  The creative cultures that have emerged from communities of struggle and resistance among people of color in America are not barriers that divide us but rich resources to teach us about what America can and should become.

Not only do we have to choose our words carefully from an anthropological point of view, but we have to do so because the ministry and the integrity of Jesus Christ is at stake here.  Countless Christians have boldly quoted Galatians 3:28 in the face of racial division: “There is neither Jew nor Gentile, slave nor free, nor is there male or female, for you are all one in Jesus Christ.”  But Paul uses this passage to argue that all are liberated from the law and therefore, we do not need to become like one another to be in Christ and receive the gifts of the Holy Spirit; rather, in Christ, we can live as one with those who are radically different from us.

Indeed, we often forget that Jesus came into a culturally pluralistic world and honored the cultural practices in communities and peoples who were different from him, while preaching a gospel that sought to unify.  There are certainly passages in the Bible that also justify slavery, genocide, and division, but when we look at the whole of God’s ministry arose history and in Jesus Christ and the Holy Spirit, I believe we do see that redemptive reconciliation does not damn culture, difference, and the sacredness of varied human lives, but the ways in which we human beings often instrumentalize these differences as division.

There’s nothing theologically unsound about unity, but unity that obliterates, objectifies, and undermines difference falls short of the vision God has for the fullness of humanity in Jesus Christ.  Unity that maintains inequitable power structures is false and faithless.  And unity that fails to listen and value the struggles of people of color in America is not only anthropologically unsound but theologically dismissive.

If you’re a Christian, especially a white Christian like me, seeking healing, reconciliation, and unity, I recommend you read the PCUSA’s statement on “Facing Racism,” adopted in 1999 by the General Assembly as a policy document to guide the pursuit of racial justice.  Or read this exegetical lecture on Acts, where Princeton Seminary Professor Eric Baretto powerfully describes how differences are gifts from God.  You might check out my post on “Embracing Difference as a Spiritual Discipline” and consider the challenge in a theology where we recognize and affirm that although we belong to God, God does not belong to us.  And check out Christina Cleveland’s “Syllabus for White People to Educate Themselves.”

Of course, there’s so much more to read and do.  But at the very least, let’s check ourselves from parading around platitudes about unity at the expense of diversity, especially in the name of Christ.  Christians have got to stand for more than that.  We owe it to one another and especially to Jesus.

 

Virtual Coffee Date

If we were sitting together this morning having coffee I would tell you that life has lent its typical roller coaster as of late (seizure for Lucia- she’s doing great now, though; running over a deer carcass with my car for me-it still smells; no bus for Lucia’s first day back to summer school on Monday- a friend came to the rescue; nurse pulled out Lucia’s tube on Thursday morning-ugh; and we lost power on Thursday night during the storm-got it back early Friday morning)… and yet, as you see, with God’s help, we’re finding adventure in adversity and somehow holding it together!

Summer has been so full of unexpected joys–luxurious and productive staycation for us in June, thrilling aquatherapy sessions for Lucia covered by insurance and rides to and fro covered by Medicaid–even as it’s packed with challenges, too–I sent my book manuscript off to the editor in early June, have been teaching summer school at Princeton since July, and start a new job at the seminary in the fall.  All this while the healthcare wars rage on Capitol Hill and we worry as Lucia’s care seems to hang in the balance.

If I seem distracted, unable to focus even in the midst of a sentence, it’s because I am.

But I’m trying to trust that (with the exception of maybe the healthcare battle, deer carcass, and tube being pulled out) there’s a real abundance, blessing, and excess in the way my cup is brimming over, inviting me to embrace this season in its chaotic fullness and to testify to what God’s doing with a life and a heart fittingly overflowing with joy.

 

If this isn’t joy, I don’t know what is!? Lucia with her father.  My photo.

So that’s what I’m trying to do (more on how that later), not living a life in response to what others are doing but a life that responds to what God is clearly doing, in a big way in my life, my family’s life, and in this world.

Still, if we were talking this morning, I’d look you in the eye and thank you but urge you to keep making those phone calls on behalf of people who are on Medicaid, who need assurance that health care will be there, not just for the healthy but for the sick, the poor, and the needy.  I’ve put some links below that I’ve found helpful and important in wading through the excess of information out there.  I did a podcast on Medicaid that I hope you’ll share with family and friends who want to understand its benefits and even as I still feel that families with people with disabilities face such an uphill battle in terms of understanding and coverage, I am thankful for all the support and hopeful that concerned citizens are making their voices heard.

I was reading Margaret Mead for one of my seminary courses yesterday: I sat there for like two full hours just reading and devouring–it was incredible, and this quote of hers that has been on my mind for weeks sprung to my attention.  I leave it with you in hopes that you may believe that we can change the world, that God is with us even when we forget it, and that joy is abundant and ample and just as human as fear and defeat!

Some links for you:

• Medicaid Facts that Matter
• A video from the Atlantic about why Medicaid is so critical to helping people with disabilities lead independent lives
• My podcast interview on Medicaid and raising a child with disabilities
• Be encouraged: The Healthcare Resistance is Working!
• And the latest is that they’re planning to vote on one of these bills on Tuesday; let’s be ready with our phone calls to demand better for people with disabilities and others in need!