Tag Archives: medically fragile kids

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.

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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.