Tag Archives: special needs parenting

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…

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.

Simply gifts

It was one of the last few days of the semester, the time when spring is tempting summer and so this particular student and I had elected to head outside to talk.  As we settled onto the picnic table, she thanked me earnestly for all that she’d learned over the course of the semester, for my passion for ministry and students and for the class, but as she looked toward the exam she was to write, she had just one final question, she said.

“Do you really believe, Dr. Raffety, that people with disabilities have gifts for ministry?”

I could hardly believe what I was hearing, questioning whether I’d heard or understood her correctly, as she went onto qualify, quite sensitively, but definitively her disbelief in what I had believed to be the central tenet of the course–the one thing I’d been trying to get across all semester.  It was a mixture of righteous indignation and bitter disappointment and bewilderment that took over me in that moment: just how might I convince her?  Where could I even begin?

That was in May.  Our study of disability, communication, and joy with families who have children with disabilities who are nonverbal began in April and has continued over the last few months.  And as we’ve spent time with these children and their families, we’ve been struck by how much the struggles of communication are exacerbated by, if not even caused not by the children with disabilities, but by an environment that refuses to consider or appreciate the variety of their attempts to communicate.  As one specialist commented to me, “Because people are often only looking for speech, they dismiss a lot of what is also communication.”

But might it work much the same way with gifts? I wondered.  Because able-bodied people are looking for certain types of gifts in people with disabilities, gifts they’ve seen before in other able-bodied people and thus recognize, perhaps they literally don’t have the ability to perceive other gifts because they’re hovering under the surface, imperceptible to the able-bodied eye?  

Less than a month into our study, a young woman from one of the families we interviewed died.  I’ll still never understand how just a day after her sudden death, her mother had the wherewithal to contact a group of lowly researchers to let them know, but she did.  One of our research assistants dutifully went to the funeral.  Not only at her packed funeral but in a subsequent follow up visit, her parents shared the tremendous impact the young woman’s life had had on so many people around her, but also what they believed to be her unique abilities.  As I listened to the interview, I noted how confidently her parents asserted, “She was an excellent judge of character.  If she didn’t like someone, it was because she could tell they weren’t genuine… We often learned to take our cues from her reactions to people because she could really tell so much about them just from being with them,” her mother added.  All this hypersensitivity and supreme ability from a 30 year-old woman who had physical and cognitive disabilities, limited purposeful movement and no words.

Was this family, especially still fresh in the throes of grief, generously but falsely attributing super powers to their daughter with disabilities?  Or might it truly be possible, perhaps especially given their daughter’s presumed dis-abilities, that she had a unique way of interpreting and interacting with the world that has something to teach us?  

I’ve always smarted at literature that pronounces the gifts of people with disabilities in terms that are limited and narrow–they’re notable for their wonder at the world, their slow ways of being, their vulnerability, even their joy.  Those don’t seem like bad things on the surface, but the sparseness, simplicity, and uniformness of them, the suggestion that people with disabilities fall into these staid categories primarily because of their disabilities does not take full stock of their complicated ways of being human in the world that include but aren’t reduced to their disabilities.  Of course, yet another suggestion, that people with disabilities exist as objects, not subjects through which able-bodied people can get in touch with their vulnerability and brokenness as distinct aspects of all our human nature, is also quite offensive.

There’s nothing broken about my daughter, thank you very much.

However, if I’m honest with myself, I’m not sure I’d ever contemplated how my daughter’s own differences in communication, brought forth by her disabilities, palpably registered in her limited movement, vision, and verbal invocations, might yield not just gifts of relationship or gifts of perspective but simply, gifts.  I had long noticed that even when Lucia’s gaze was positively fixed on the ceiling or when she seemed little aware of her surroundings, when her father walked into the room, she’d giggle knowingly and even turn to smile in his direction.  With low vision and limited head control, it’s pretty clear that she’s not seeing him, but sensing him otherwise; we’ve suspected that she “knows” him by the sound of the weight his carriage (and only his) induces upon our creaky floorboards, because she doesn’t react to anyone else coming into the living room that way.

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Lucia snuggling with her father on the couch.  My photo.

I’ve long believed that Lucia also knows we’ve come home to our house and entered the garage by the way the light darkens inside the van and the bump into the threshold, at which she always starts smiling and giggling.  But just a few days ago, she started smiling even as we pulled into the driveway!  And when we came home late from our vacation a few days prior and deposited her asleep into her bed that night, but she ended up in our bed when she was crying the morning after, when I carried her downstairs into the living room, even before I could pronounce that we were home she beat me to it, erupting into giggles, without so much as turning her head to look around the room!

And so, a few days later when the child study team from Lucia’s school called and kept talking about how difficult Lucia is to reach, teach, and communicate with, I kept thinking, are we talking about the same kid?  Sure, she doesn’t roll over and she can’t purposefully reach for objects, yet somehow, despite having low vision and not being able to purposefully turn her head with much precision, she knows who her father is.  What’s the problem here, again?  I wondered.  My perspective had been so altered by what we had been seeing in our research study that I couldn’t see Lucia the way they saw her; in fact, I corrected them on it.  I told them I didn’t want to hear anything more about how difficult my daughter was.  Wasn’t it their job to perceive where communication was already happening and magnify it?  Why were they approaching her as if something was wrong with her when it seemed something was wrong with them?  (They didn’t like that very much.)

When I responded to my student’s question in May, I spoke from my experience regarding Lucia’s gifts for ministry and the gifts of some people with disabilities in our congregation.  Just a few days after, I discovered this beautiful article from Amy Julia Becker, that could have been the anthem for my course, intentionally titled, after all as it was, “Ministry with People with Disabilities.”

But I feel convicted that even my own musings as a researcher, a scholar of disability, and a parent have been necessarily limited and incomplete.  Looking back on months of our ethnographic study with families with children with disabilities who are nonverbal, nearly every single one of the families notes the gifts of their children with ease; a dramatic portion of them question whether their children are really cognitively impaired or if it’s just the world that’s disabling them.  It makes so much sense–we believe that intelligence and gifts come in so many different forms.  We say that all the time, but perhaps we don’t really believe it.  But it was from the family of the 30-year old girl in our study, the person who had lived the longest, whose family arguably knew her the best and was the most familiar with her, from whom the most precise, dynamic assertion of gifts came.

As able-bodied people, we’ve got to actively stop denying and diminishing the contributions of people with disabilities because they’re not obviously or immediately available to us.  Just like the communication that is gainfully there, but simply different, the gifts are also decidedly there but often imperceptible given our own ableist lenses.  We’re going to have to learn to accept our own limitations in order to see differently, to believe, to anticipate that gifts come in seemingly curious forms.  They even disrupt the status quo, they disturb conventional knowledge, even knowledge of joy and humans and God.  

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Road tripping!  My photo.

The conviction of this research project has been that people with disabilities have so much to teach us about communication and joy and spirituality if we would just have ears to listen.  But my student wasn’t the only one who needs to be rid of her own prejudice and obstacles and ableism to really appreciate the gifts of people with disabilities.  That’s a lesson I’m learning everyday.  Indeed, I might have replied:

“Yes, I do believe people with disabilities have gifts for ministry, but sometimes I may struggle to see them.  That doesn’t mean they’re not there.  It means I have a lot of growing to do.  But I’m thankful that God has granted me a glimpse of them and I will continue to pray that I can learn to see differently and honor what God is doing in them and through them.  I pray that God grants you that, too.”

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.

 

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.

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.

Why we need to learn to see differently

It’s the stunning yet simple basis of all anthropological knowledge, really–this truism that we’re not all the same, we’re different.

Take my daughter, for instance.  Whereas most people get up out of bed every morning and walk, she giggles or cries until we come get her.  Whereas most kids her age start to brush their own teeth, put their own backpack on, eat breakfast through their mouth and head to school, we do the brushing, Lucia’s backpack hangs on her wheelchair, and she eats her meals through a feeding tube that’s attached to her stomach (she eats a lot of her food through the same tube overnight, which is actually pretty efficient!).

But even anthropologists who believe in the wisdom of learning from others are only human.  Because we, like everyone, only have one primary perspective, one pair of eyes and ears through which we experience the world, we still tend to succumb to ethnocentrism–the belief that not only are people who aren’t like us weird and different, they’re less than.

Lucia gets that a lot.

People presume that because she rides through life in a wheelchair or because she gets her feeds through a tube and perhaps most especially because her brain is different that all this comparatively limited functionality that she has amounts to a pretty pitiful and dull, if not brutal life.  They ask me if she will ever do certain things like walk or talk or eat, if she will “be like that” forever, and when I tell them she likely won’t walk or talk or eat in typical ways, they frown and shake their head or grimace.

But what if I told you that some of the very things that make you skeptical about her quality of life, like that wheelchair or that feeding tube, are the things that bring her mobility, joy, and comfort?  Lucia eats through a feeding tube because her body can’t process food orally without it heading into her lungs, which caused numerous scary and painful bouts of pneumonia until we got that tube.  Lucia rides in a wheelchair because that enables her to feel the wind in her hair, to head outside and to school, when otherwise she might be in the house all day.

What if I told you that a lot of the limits placed on Lucia don’t come from her differences but from the way we perceive her differences and from the supports and benefits that we deny her especially because she’s different from us?  When I invite my students to view the world anthropologically, through the lens of others, especially people with disabilities, it kind of blows their minds.  The fact that we able-bodied people are part of the problem for people with disabilities never really occurred to them.  It never occurred to them that subtly viewing someone else as less than and placing limits on their lives, compelling them to be someone they’re not, live in a society that’s only made for the able-bodied, and then wonder why they’re not thriving is discrimination, not liberation.  

This ethnocentric way of viewing people with disabilities as less than is called ableism and it’s not just endemic in American society and everyday interactions across differences, it’s front and center in this debate on healthcare.  Maybe you didn’t see it, because your ableism kept you from the truth, but denying life-giving services to people who are different on the basis of their differences–i.e. cutting Medicaid for people for who literally need it to live their daily lives–yeah, that’s discrimination.  Or reserving healthcare only for those whose bodies are “normal,” who don’t have preexisting conditions, or denying hospital services to those who are inevitably going to have to use the hospital because they’re made different and they’re living in a world that’s downright inhospitable to their differences–that’s textbook ableism.

But we all saw Donald Trump begin his campaign by mocking a reporter with disabilities.  We have all seen headlines that compare that same President who mocked someone with disabilities to people with mental illness.  We’ve heard about people with disabilities staging protests in the offices of Senators and being dragged out of their wheelchairs by security on Capitol Hill.

Open your eyes.

It’s not people with disabilities who need to make more concessions to the society that already demeans their existence, down to their very lives and whether they’re worth living–it’s you and me.  We all need to change our way of seeing our fellow human beings, our fellow Americans, as pitiful and less than and deficient.  What is deficient are our healthcare proposals that purport to deny people coverage based on innate differences.  What is deficient is our rhetoric that excludes and codifies people who we don’t want to accept or don’t understand.  What is deficient is a country that seeks to find its greatness at the expense of its very citizens.

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Lucia a home wearing a cap during her portable seizure study this past week.  My photo.

Please don’t shake your head or frown or grimace at my daughter’s quality of life.  Instead, please pick up the phone and call your Senator and shake your fist at them for failing to grant the necessary supports that make her different life possible.  Become an unlikely advocate and listen to the concerns of those who are different from you not just because they’re different but because we’re all human.

After all, the root of anthropology is anthropos, human being.  Providing good healthcare comes down to the recognition that we are all human beings but that we’ve constructed an able-bodied world that’s only fit for some.

So don’t cut my daughter’s Medicaid because she’s different.  Affirm the value of her life by keeping it.  Let’s keep the ACA and its supports for all kinds of people.  Let’s keep healthcare that’s working for people like you and me and people like my daughter.

 

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.

 

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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!

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Some links for you: