But as much as there is to share about what I’ve learned this year, there’s thanks in order to you, dear readers, for hanging in with me throughout all the feelings and frustrations and for your own listening ears, your caring, and your advocacy. Whether you’re a new reader, or you’ve been around for awhile, thank you for sharing our family’s struggle. I certainly hope you’ll let me know which posts continue to resonate with you, what you like best and what you like least about the blog, what you’ve learned in 2017 and what you’re looking forward to in 2018.
Here is a look back in hopes that these lessons learned from the year prior will carry us forward in making this world more just, more healthy, more good, and more compassionate:
A few weeks ago a former student emailed to update me on her summer. “How’ve you been?” she asked spiritedly. “I’ve spent the summer distracted by healthcare,” was the confessional, somber, and bitter beginning of my reply.
When there’ve been great gushes of joy as there are in everyday life alongside Lucia, I felt resentful that they still felt tinged by a foreboding, ominous fear. How can you mess around with joy when you feel such aching fear and trembling, I’d cringe. And then I’d smart because I’d be angry that 13 men in a private room were even threatening to take my joy from me. How dare they do that?
This summer has been filled with ups and downs, victory and solace punctuated by deep uncertainty and angst—so many bills, so many promises, a little hope, very little peace. So even the things that normally come naturally to me–forging ahead with bravery and decision–have been called into question, fretted and flummoxed by the helplessness and fatigue I’ve felt. I’ve found that it’s easy to be brave when it’s just you, but it’s much harder with someone else depending on you. Or when you’re made to feel that bravery is foolish or may count for little in the end.
But what has made all the difference in the last few weeks, through the wise spiritual counsel of trusted friends, is to discover that bravery is possible even in the face of tremendous fear and uncertainty, because joy is resilient, defiant, and knows no boundaries. This is the message I shared last night about our life with Lucia at a rally for equitable healthcare–that joy may be an unlikely home for advocacy but it’s effective because it’s genuine and human and resounding. That being human means sharing vulnerability and fragility but it can also mean finding joy in the most unlikely of circumstances and working together for change.
Of course, the one problem is that however lovely these words, they are tinged with privilege. Many people won’t be able to lean on family or something as seemingly ethereal like creativity, but practically translated as amazing university employment. People will be so hurt and scarred by revoking healthcare and Medicaid and those the most hurt won’t be me or my family but those whose dignity has not just recently come under assault but rather has long been denied by the classist, sexist, ableist, racist undertones of America’s unrelenting “greatness.”
But I do think it’s something–it’s certainly not nothing–to feel joy amidst fear and live to tell about it. Indeed, this is what I find defying and powerful about so many saints of the church, champions for justice, and seemingly ordinary people who have gone before me. Please, please don’t hear me wrong. I’m not giving up, but rather recalibrating our fight. I’m suggesting that we bravely, boldly live our joy-soaked lives even, perhaps especially in the face of such an assault. Taking pleasure and joy in our humble lives becomes an act of resistance in itself, a luxury that many struggle to find.
And this is precisely why we must not measure ourselves by human standards because we see human standards faltering in our midst everyday. I’m reminded these days that they can’t take our joy because our lives never belonged to them or even to us but to God. And same thing with that joy. It’s roots are deeper, wider, grander than many of these legislators have ever encountered. May they feel its fury, its vibrance, its resilience and may they be led beyond fear, as I have, to seek justice.
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?