Both Dean Heller of Nevada and Susan Collins of Maine have recently announced that they will not support the bill! If you have a Republican Senator please call them everyday this week until the vote to ask them to vote NO on the AHCA, and you’re welcome to use our story! If you’re from Alaska, West Virginia, Maine, Nevada, Arizona, Colorado, Ohio, Pennsylvania, Louisiana, or Arkansas, these are key states where your senators remain undecided and you should definitely call and there are daily call scripts for those states available here. If you have Democratic Senators, make sure they are speaking out against the bill and willing to use any means to block it. But the best thing you can do is reach out to friends and family in the ten states above and ask them to call!
One of the beauties of this blog is that I don’t know all of you personally but I feel like I’ve come to know you over the years. And I’d love to hear from you. Please leave a comment in the comment section and let me know where you’re from and who you’ve called.
I remember the box that the nurse from Medicaid checked when she came to evaluate Lucia–it read something like “qualifies for institutionalized level of nursing/medical care.” She’d been so empathic and caring, so visibly at ease seeing and talking about a child that was on a feeding tube and yet puked the contents of her stomach uncontrollably while we talked in my dining room. But when she left my heart skipped a beat–did she check that box because she thought Lucia belonged in an institution? I thought she’d been there to process Lucia’s Medicaid. Sure no one was going to take our child away?
Looking back I don’t remember being particularly fazed by the severity of Lucia’s medical needs. Growing up with my own health problems, a twin sister with asthma and respiratory problems, and a mother with multiple sclerosis (who is also a nurse!), I think I learned that while health challenges were part of life they didn’t prevent a person from being a person. We had good medical care and my parents were able to provide what we needed to thrive. Therefore, for my husband and I, when it came to Lucia, so much of that first year and a half was just wading through the newness of parenthood alongside the advent of seizures, abnormal MRIs, and feeding tubes without much distinction. We were coping and surviving with rare moments that glare through the blur with clarity and poignancy–the long nights of shrieking as we weaned our poor baby off of narcotics; the morning she woke up with her head and her eyes glued permanently to that the left and because she had special needs the ER doctors rather dismissively sent us home saying she probably had a cold; or the night a month later when I nursed her for the very last time in the glimmer of hospital monitors because that onset of brain damage (what had really sent us to the ER) had caused her to lose the ability to feed by mouth.
Yet those moments, as ingrained as they are in my memory, did not so much smack of worry and fear as heartache and pain. You see, by God’s grace my husband and I are not much of worriers. We’re eminently logical and practical people, people who sort of spring into action and competency when faced with crisis–as pained and bleary-eyed as any first-time parents may have been. We found this way to treasure those moments, laced with sorrow, with our precious child, precisely because the future was always so unknown and held in suspense. And when Lucia’s prognosis pointed to death in early childhood, it only made worry that much more the enemy of the present. We had the present. The luxury of worry was fleeting.
I’m sick that although my child is now even miraculously taking small spoonfuls of puree at school by mouth (go Lucia!), I’m wondering whether her special needs public school and feeding therapy will be on the chopping block next. I rejoice that Lucia’s God-given companion, her nurse Sylvia, has been with us for over a year and a half, but I worry how I will work when Lucia’s Medicaid gets cut, how Lucia will ride the bus to school or eat through her tube without Sylvia, or how my husband and I will ever sleep without a nurse in our house to monitor Lucia’s seizures, vitals, oxygen levels, feeds, and neurological pain. I’m worried because in the back of my mind I wonder if someday in the absence of Medicaid I may not longer be able to care for my own child, this precious, precious gift, because I actually can’t do it without in-home nurses and feeding pumps and pulse ox monitors and special education and therapy and seizure medication and durable medical equipment–all things that Medicaid provides.
Some friends along the way have insinuated that I’m being a bit dramatic here–that perhaps I should give Donald Trump, the Republicans, the AHCA, the budget negotiations more of a chance–perhaps I shouldn’t worry so much. Perhaps, according to them, I have nothing to worry about. But I can tell you this much: I didn’t worry for Lucia’s life or ours initially because those were so firmly and are so firmly in God’s hands. The rarity of her genetic disease, the onset of her brain damage and consequences, and the wisdom and beauty that God had in making her are so simply beyond me. But this politics and justice and being human stuff? God’s charged us with that. God’s charged us with preserving and caring for human life–all human lives–that’s ours to do. And as long as people like my daughter are cast aside in some human mishandling of God’s charge to God’s stewards, I reserve the right to be very angry. I reserve the right to be worried. And I reserve the right to fight like hell to preserve her life, like any of you would your own child’s, and my ability as a parent to care for her in my own home.
You can tell me not to worry, but it makes me feel as though you are not really listening as I tell my story. I learned how to live in the present a long, long time ago, and I’m telling you it’s become a downright inhospitable place for people with disabilities. It’s a present deeply in need of a change. Won’t you join me in being that change so none of us need worry about our children’s future?
I see the speculations and I hear the questions all the time. Do children get autism from the environment? Is Lucia the way she is because of something I ate during pregnancy? What is it that causes your child to be different? These questions all hinge on the belief that maybe there was a way to prevent these diseases and disorders and syndromes. And if we just knew more or were a bit more vigilant or worked harder, maybe we wouldn’t be left with autism or ALS or AGS (the genetic syndrome that makes my daughter different). I probably shouldn’t touch these discussions with a ten foot pole. They’re weighty and emotional and fraught; they’re not easy.
But all I know (and I want you to know) is, I don’t feel like I’ve been left with a syndrome–I’ve been gifted a child.
And the world is so full of blame and blame-shifting already. In fact, one of my students wrote a pretty wise paper this semester in which she claimed that most theories of disability are actually so intent on shifting blame (from societies to individuals to the environment, etc.) that they fail to take account of the people in front of them.
I’m somewhat ashamed to admit there was some relief in learning that Lucia’s diagnosis was genetic. There was practically nothing we could have done, short of not giving birth to her, to prevent the manifestation of AGS in her being. There, I thought, now no one could look around and blame me for her disability. I neglected, however, to realize that the revelation of a genetic cause for AGS could make the search for a cure just that much more fervent and earnest. I neglected to realize that control is yet another human propensity and curing a wildly passionate end.
Several months ago I sat with a dear friend of mine who has a child with autism and she asked a striking, heartfelt question. “Do you think,” she asked respectfully and therefore, trepidatiously, “that there’s some sort of freedom in the way that you all have been able to release Lucia from all of the developmental milestones and standards because of the severity of her disability?”
“Oh absolutely,” I replied. I went onto talk about how instructive this shift has been for my husband and I, enabling us to emphatically celebrate and truly love Lucia for who she is, not for what she does. And my friend went onto tearfully describe how crippling the pressure of fighting for her child’s every opportunity, providing for her child’s therapies, and keeping up with all the internal and external expectations had become for she and her husband. And her tears broke my heart.
“But wait a minute,” I stammered, also trepidatiously because her experience is not mine and mine not hers. “If the worst case scenario comes true–if your daughter struggles beyond belief in school and therapies ‘fail’ and she ends up dependent on you and then her sister or your family long after you’re gone, I imagine you will always feel as if you hadn’t done enough, right?” She nodded and I felt a little horrible for even forcing her to face her worst fears.
“But if she goes onto to defy all expectations, to succeed in school, to become independent, go to college, marry, all the typical things? I doubt you would credit yourselves, right? Surely you would chock all those things up to luck or providence.” And when she nodded, I’m afraid I may have very in-elegenatly replied something like,
“Well, that’s f***ed up.”
I didn’t mean it in the sense that my friend’s attitude toward herself or her child is so remiss and corrupt but just that the feeling that kids with disabilities need to be like everybody else to be successful and that their parents are so complicit in that makes the burden pretty impossible to bear. And when we ask, even innocently where children with disabilities come from and who is to blame for their existence, we often paint them as something other than human, some aberration from humanity. But people with disabilities will always be with us, and they are part of a shared humanity, reminding all of us and teaching us just what it means to be human no matter how much we fight that truth.
Today my husband and I rest in the present and embrace who Lucia is. While others fight aggressively for a cure for Lucia and others with her syndrome, we know that is not our battle; in fact, we reject the metaphor of a battle altogether, because we can’t help but notice that what the world wants and needs and strives for often seem the very opposite of all Lucia has taught us and has to give. Perhaps they’re not antithetical to some–this penchant for curing and this embrace of life in all its diversity–but I can’t help but think that when our understanding of disability tends toward a shifting of blame, we’ve audaciously and ironically wrested control away from the very people who might be able to teach us something about it. I can’t help but think that in my three humble years of mothering Lucia, I haven’t found her so much in need of changing as I’ve found myself in need of a different, better way of experiencing the world. I can’t help but think that however Lucia and your child and my friend’s child got to this earth, I’m so glad that they’re here.
And that if I’m to blame (which I most certainly am in part)–well frankly, I’m humbled and thankful and forever the better for it.