Category Archives: family

The inequalities that bind

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US-Mexico border, Agua Prieta, Mexico/Douglas, Arizona, 2003.  My photo.

This week we’ve seen children confined to cages, heard their screams as they’re ripped from their parents and witnessed our president bend to public and political pressure to amend his callous “zero tolerance policy” at the border. Yet, thousands of migrant children remain separated from their families, and I keep wondering if we’ve learned anything from all this. The government has wanted us to see a chasm between those families at the border and our own. In place of what could be a common humanity, a desperate dare-we-say American-like doggedness to seek a better life for their persecuted families, Trump and his allies have offered fraud, smuggling, and criminal behavior as self-inflicted explanations for migrant families’ plight. So perhaps what we’ve been faced with this week is the hearty evidence that not all families, let alone all childhoods, are created equal in America…

But isn’t this something we already knew?

We know that being needy makes you vulnerable in America, but whereas teenagers marching for “black lives matter” are vilified for lives lost, the white teenage activists from Marjorie Stoneman Douglas High are praised for their activism.  It seems what we’re encountering is something even more pernicious than the inequalities themselves, rather the realization that not even all need is created equal.  Since the election, I have been desperately sharing my own story to keep the lives of families with children with disabilities, alongside the lives of so many other marginalized families, in view; however, it only recently occurred to me that by telling our story, I may be rendering further invisible families like the ones being turned away at our borders.

You see, while my family’s need for life-sustaining Medicaid for our medically fragile child elicits incredible sympathy, that’s largely because my daughter’s disability is often viewed as an underserved tragedy that has befallen a white, educated, hard-working, affluent, heterosexual couple. But while so many other families on Medicaid (especially families of color), equally needy to mine, are belittled for their poverty, chastised or blamed for the presumed neglect, fraud, or abuse that put them into the system in the first place, a common response to my family’s vulnerability is not just pity, but often, congratulation. We are heralded for our love and our sacrifice for our daughter. Meanwhile, the very nurses employed through Medicaid who tend to our daughter, monitoring her heart rate, seizures, and breathing overnight, are immigrants like those being turned away at the border. They work in unsteady employment for low wages, rarely receive healthcare, and they have either already left their children behind in their countries of origin in order to provide for them, or they leave their children in the care of others, so that my family can sleep at night.

These migrant families are part of what scholars have called the global chains of kinship and reproduction, stratified care work that elevates some families on the backs of others. If you think about it, certain groups of immigrants, children who are “rescued” through inter-country adoption or born through international surrogacy, are uplifted, generously welcomed into our borders and our citizenship, while the families they came from, foster mothers, surrogates, nannies, and other care workers, languish in the shadows, families already torn apart yet silently, incrementally, with little fanfare. Thus, the separation of families at the border is but a visible demonstration of the invisible borders we often perilously draw around our own family lives.

The myth of the modern family and this tireless invocation of the need for “family values” suggests that each family stands alone. Yet, in articulating my family’s story of need I’ve become aware of the ways we are uncomfortably and unevenly indebted to one another. I’d like to believe that with the outcry on social media and the political pressure brought by the public upon the administration’s immigration policies, a new kind of family values is emerging that does not deny, yet makes visible these inequalities and the families who have endured them in the pursuit of wellbeing and freedom.

But the challenge comes in both maintaining our common humanity and acknowledging the injustices that bind and separate us from one another. We cannot afford to look away, for it will cost us all our humanity. But we also cannot afford to go on living our fictional, solitary lives while asylum is being criminalized, need is being stigmatized, racialized, and vilified, and children with families are being abused and institutionalized.  My family, likely your family, needs these persecuted families, whether we choose to admit it or not.  If we cannot break the global chains of inequality, perhaps we can at least qualify and dignify the emotional labor that families like mine benefit from everyday.  We can refuse to participate in the politics that slander the need of some to elevate and fulfill the needs of others. We can turn away from pity and charity and toward justice, mercy, and grace.

And we can demand that America must do better by all of its families, especially those who have so painfully paid the price of vulnerability, so that others can thrive.

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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.

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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!

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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.

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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!

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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.

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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.

 

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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.

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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?

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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 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.

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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.

 

 

The audacious ordinary

I should have written sooner, but it’s been a winter and a spring marked by surgery, hospitalizations, feeding difficulties, and gregarious giggling.  It takes listing it as much–those startling rhythms–for me to note that perhaps there are good reasons for not having written, that this year has been so rough already, three months in, it seems anything but ordinary.

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Lucia, with her father, waking up from hip surgery in January.

But while my attention has been swayed by nights in the hospital, the precise milliliter at which Lucia always seems to choke and aspirate, and the ramshackle solutions to trying to keep those calories inside her little body, I’m also starting an ethnographic project on disability and communication, and so I find myself watching the ordinary things we do together, too. Because she can’t see well and because we don’t have traditional conversations, I find myself instinctively doing things with Lucia that I wouldn’t do with anyone else.  I place my face right up against hers as I’m speaking to her.  When I say her name I watch for the flicker of recognition in her eyes.  When I notice her lips are dry, I pick the large flakes from them and then apply balm, something she licks and smacks with eagerness, because she doesn’t eat by mouth.  When her head begins to drop as it often does out of neurological lapse or fatigue, I guide her cheek and her chin back toward me without thinking.  And when on the rarest of occasions, she turns her eyes to mine, I don’t know what it is about it, but I can tell she is really, really seeing me, and it is the holiest of moments, the simplest of pleasures, not just for her or for me, but for both of us–I’m certain of it.

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Snuggling!

Feeling so certain of these ordinances and our bond with one another is something I never expected to buoy us in this extreme world of uncertainty.  And so at the end of a long Monday, where I shuttled her to a rather bleak nutrition appointment, and she’d made the rounds on errands and to my office, all the while coughing and sputtering her feeds, because there was no nurse, I realized that it wasn’t what ostensibly might qualify as a great day.  And yet, when I looked into her eyes that evening, I also felt so far afield from those early days when she’d cried incessantly and I couldn’t do anything to comfort her, and I’d text her father in exhaustion and desperation.  I’d wonder whether she even liked me, and people thought I was being facetious, but I really wondered whether she even knew her mother was there.

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Some of those early days…

But here we are today.  And suddenly, I felt it a great, extraordinary day, and choking back hot tears, I whispered to her greedily, “I wish I could keep you forever.”  Because I realized that the really bad days and the great days and all the ordinary days in between, they will just never be enough.  I’ve been so busy, struggling and surviving this particular climb through Lent that the hyper-ordinary had lost its resonance.  But what I’ve been made to realize, especially with Easter so fast approaching, is how critically our family, as every family, lives in the space caught between abundant life and impending death.

It’s not something I readily acknowledge.  How can you?  How can you go on living your so ordinary life when you are often reminded how fleeting, precious, and truly extraordinary it is?  Just a few years ago, when we had the opportunity to meet other families of kids with AGS at a conference, I saw a grown man gleefully pounce on his 90-pound teenage daughter laying on a mattress in the middle of a hospital conference room and it put a lump in my throat to see how similar their modes of communication were to ours and to realize that loving Lucia wouldn’t ever have to change if we were lucky enough to know her that long.  We could go right on loving her with abandon and conviction if we were just brave enough to do it.

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Lovin’ life.

 

And on most days, especially because Lucia’s so joyful and go-lucky, she reminds us that there’s no reason to worry over a future that not just for us, but for all of us, is by nature highly uncontrollable and uncertain.  But then again, when you’re so audaciously invited to taste pure, overflowing joy on a daily basis, there’s nothing ordinary about it, and it’s impossible to be grateful for your portion rather than ravenously thirst for more.  So I try to acknowledge the precariousness of not just this life, but all our lives as the unbending site of where cups also runneth over, because we have received the gift of truly knowing our daughter, which I think every parent can agree, is actually altogether extraordinary.

What I learned in 2017

Looking back, 2017 on the blog will be remembered as the year I broke my silence, the year my writing became resistance.  Only a year prior, I’d begun sharing Lucia’s story, but this year, that personal side of politics became something that as a mother, a pastor, and a professor who studies disability, I just couldn’t remain quiet about.

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Speaking at an event at Princeton University.  Photo by Evan Schneider.

But as much as there is to share about what I’ve learned this year, there’s thanks in order to you, dear readers, for hanging in with me throughout all the feelings and frustrations and for your own listening ears, your caring, and your advocacy.  Whether you’re a new reader, or you’ve been around for awhile, thank you for sharing our family’s struggle.  I certainly hope you’ll let me know which posts continue to resonate with you, what you like best and what you like least about the blog, what you’ve learned in 2017 and what you’re looking forward to in 2018.

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Love these two.  My photo.

Here is a look back in hopes that these lessons learned from the year prior will carry us forward in making this world more just, more healthy, more good, and more compassionate:

1.  Resistance is not just about marching and advocating, but writing, educating, and bridging the divides between us.

2.  It’s easy to underestimate people with disabilities, even for parents; thank God the joy God has given Lucia defies all odds! (And she is still loving school!)

3.  Unfortunately, people with disabilities cannot take healthcare for granted, but thank goodness for your advocacy this year!

4.  I’ve loved using the Enneagram as a tool to understand myself and those around me better.

5.  I’m so grateful for the differences God has made in all of us.

6.  “My Baby Wasn’t Born Healthy and Her Life Still Matters.”

7.  We must to learn to see differently.

8.  Christian calls for unity must not undermine difference.

9.  I fight because we are a Medicaid family and healthcare is about human dignity.

10.  There’s nothing like a little silence.

11.  And I will not give up in 2018!

(And a look back at What I Learned in 2016 if you’re so inclined…)

 

 

 

 

 

 

 

 

 

Thanks-giving

I can’t tell you how often these days my husband and I are brimming with joy as parents.

Every time our daughter smiles and giggles and babbles her sweet sounds, life–nearly four years of it together now–just doesn’t get any better.  Indeed, when I look at photos like this, Lucia’s face pink and scarred from laying her cheeks in stomach acid night after night when she couldn’t tolerate her feed, I think just how far we’ve come.

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…and smiling through it all!

But a lot of things have also stayed the same.

Lucia still needs a tube to feed during the day and overnight, she’s still prone to seizures, she’s having trouble breathing, and she’s scheduled for major surgery in 2018.  Our family equilibrium isn’t typical, and it doesn’t come from a respite from medical complications, technological procedures, or nursing interventions.  Rather, it is those very things and an incredibly spirited three-year old that often makes life so much fuller, grander, and more beautiful than we ever could have imagined.  Ever since we got private duty nursing through Medicaid when Lucia was about a year and half old, not only her cheeks, but her lungs, her digestion, her joints, her nutrition, and her mood have all shown such growth.

In this season of thanks, we have so much to be thankful for.  

And yet, I’d be lying if I told you that 2017 wasn’t anything but an incredibly trying year.  In the midst of all of Lucia’s persistent health challenges, we’ve also faced major threats to her healthcare and provisions for people with disabilities all year long.  Living life with this constant threat hurts more than the uncertainty we face with Lucia, because it’s complete manufactured and manmade.

And  I can’t help but think about how the spirit of this Senate tax bill seems so out of sorts with this week’s cherished American tradition.  They call it Thanksgiving, because it was one of the Pilgrims’ first corporate acts of giving thanks for the good harvest.  And while the stories we tell our children about the miraculous sharing of a feast between the white colonialists and the Indians may not be entirely accurate, they reflect an idealized notion that thanks must be freely given and cannot be readily given unless there is peace, justice, and provision.

So this week, the prospect of giving thanks when so many are facing the looming possibility of losing their healthcare, people who are poor and hungry will suffer because of the bill, and people with disabilities will lose benefits and supports because of it, seems downright trite and inhumane.  I wonder if when we go to celebrate this week, we might practice yet another storied, American tradition–that of patriotic protest, dissent, and advocacy and urge those we love and those around our tables to give as we give thanks.

You give to my family every time you make a phone call to your senator and tell them that people with disabilities shouldn’t suffer so that this country can save money.  You give to my family when you pay your taxes and portions of those taxes go to programs like Medicaid that support nursing care, medical coverage, and medical equipment for kids like Lucia who are deemed too costly by private providers.  And you give to families, especially those who find themselves in need this season, when you make clear that we cannot celebrate tax cuts when the poor get poorer and the hungry go hungrier.

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Miss Lucia laughing in her stander.

If this truly is not just the season of giving thanks but also of giving, then let us gather together to make not just my cup, but every cup of every parent in this country overflow with gladness.  None of our journeys are typical, but that’s what makes this country so great.  Let’s not let a few hard-hearted people in Washington make it otherwise, especially on Thanksgiving.

And from the bottom of my heart, for all your phone calls, prayers, and support,

thank you.

 

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.”

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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.

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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.

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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 they can’t take our joy

A few weeks ago a former student emailed to update me on her summer.  “How’ve you been?”  she asked spiritedly.  “I’ve spent the summer distracted by healthcare,” was the confessional, somber, and bitter beginning of my reply.

Indeed, in the last few months, alongside the very real threat of losing the ACA, Lucia’s Medicaid benefits, and healthcare for millions of Americans, there’s also been the more subtle feeling of frustration that this fight has also taken its toll on my academic and pastoral passions, reduced me to someone who wasn’t producing or creating so much as maintaining vigilance, waiting on others’ words and others’ actions–merely responding.

And I hate being in response mode.

I, like so many Americans, truly despise the discipline of waiting on anybody or anything–I’m even kind of lousy at waiting on God.

When there’ve been great gushes of joy as there are in everyday life alongside Lucia, I felt resentful that they still felt tinged by a foreboding, ominous fear.  How can you mess around with joy when you feel such aching fear and trembling, I’d cringe.  And then I’d smart because I’d be angry that 13 men in a private room were even threatening to take my joy from me.  How dare they do that?

This summer has been filled with ups and downs, victory and solace punctuated by deep uncertainty and angst—so many bills, so many promises, a little hope, very little peace.  So even the things that normally come naturally to me–forging ahead with bravery and decision–have been called into question, fretted and flummoxed by the helplessness and fatigue I’ve felt.  I’ve found that it’s easy to be brave when it’s just you, but it’s much harder with someone else depending on you.  Or when you’re made to feel that bravery is foolish or may count for little in the end.

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Speaking at the RunRAllWomen Rally on Friday night.  Photo by Evan Schneider.

But what has made all the difference in the last few weeks, through the wise spiritual counsel of trusted friends, is to discover that bravery is possible even in the face of tremendous fear and uncertainty, because joy is resilient, defiant, and knows no boundaries.  This is the message I shared last night about our life with Lucia at a rally for equitable healthcare–that joy may be an unlikely home for advocacy but it’s effective because it’s genuine and human and resounding.  That being human means sharing vulnerability and fragility but it can also mean finding joy in the most unlikely of circumstances and working together for change.

In these last couple of weeks, even before the Republicans voted against the repeal of the ACA, even before so many of you stood up for the needs of those on Medicaid (THANK YOU!!!), I realized that even if they take away Lucia’s healthcare and they deem her life of little value, our family will still have our joy in each other and in God, and we will rise in the face of all of it.  We will go on and create and make beauty from ashes because that’s what we do, and nobody can take that transformative joy that we’ve found in Lucia, one another, and in God away from us.  It doesn’t make any of it okay, of course–the assault on the healthcare of the most vulnerable in this country.  It almost makes it worse that in a world filled with real life challenges of health and life and death for kids like Lucia, it could be something manmade that’s the death of them.  But it reminds me that I’m not waiting on our government’s bills or decrees or approval to live my life–I never was.  Instead, I’m happily and graciously bound to a family and to a God and to people who love us and whose love is real and here and stable.

Of course, the one problem is that however lovely these words, they are tinged with privilege.  Many people won’t be able to lean on family or something as seemingly ethereal like creativity, but practically translated as amazing university employment.  People will be so hurt and scarred by revoking healthcare and Medicaid and those the most hurt won’t be me or my family but those whose dignity has not just recently come under assault but rather has long been denied by the classist, sexist, ableist, racist undertones of America’s unrelenting “greatness.”

But I do think it’s something–it’s certainly not nothing–to feel joy amidst fear and live to tell about it.  Indeed, this is what I find defying and powerful about so many saints of the church, champions for justice, and seemingly ordinary people who have gone before me.  Please, please don’t hear me wrong.  I’m not giving up, but rather recalibrating our fight.  I’m suggesting that we bravely, boldly live our joy-soaked lives even, perhaps especially in the face of such an assault.  Taking pleasure and joy in our humble lives becomes an act of resistance in itself, a luxury that many struggle to find.

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Our family celebrating at my sister’s installation service.  

And this is precisely why we must not measure ourselves by human standards because we see human standards faltering in our midst everyday.  I’m reminded these days that they can’t take our joy because our lives never belonged to them or even to us but to God.  And same thing with that joy.  It’s roots are deeper, wider, grander than many of these legislators have ever encountered.  May they feel its fury, its vibrance, its resilience and may they be led beyond fear, as I have, to seek justice.