Monthly Archives: April 2018

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.

 

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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. 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.