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.

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.

The inequalities that bind

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.

Sweet hope

Yesterday, the AHCA vote was cancelled due to lack of support from both Democrats and Republicans, and not only Obamacare, but traditional Medicaid and the Medicaid expansion are safe for now.

Thanks to so many of you who called, wrote letters, and spoke to your members of Congress, I feel like I can breathe again for the first time in weeks.  I feel hope and lightness and strength, and I can’t thank you enough!

But most of all, I feel like the outpouring of support reminds me that while I can’t take it for granted and the fight to protect people with disabilities, the poor, the elderly, and the most vulnerable in our country is far from over, I hear that the voices who value those lives in this country have gotten louder, more expressive, and more proud.  A few days ago, the burden that I felt to make my daughter’s story and her value known felt very singular and heavy.  But what’s so sweet about hope is that burdens are lifted when responsibility and love and care become shared.

Lucia’s bright smile of hope!  My photo.

Thank you so much for sharing our burden, but most of all, thank you for realizing that Lucia’s life has never been and doesn’t deserve to present a burden to her or to us or to any family who just wants their child to grow and thrive.  Let’s keep fighting so that we can all keep growing by living in a society that values so many different kinds of people and deems them all worthy of health, education, life, and love.

Onward, my friends.  And thank you for renewing my hope!