If we were sitting together this morning having coffee I would tell you that life has lent its typical roller coaster as of late (seizure for Lucia- she’s doing great now, though; running over a deer carcass with my car for me-it still smells; no bus for Lucia’s first day back to summer school on Monday- a friend came to the rescue; nurse pulled out Lucia’s tube on Thursday morning-ugh; and we lost power on Thursday night during the storm-got it back early Friday morning)… and yet, as you see, with God’s help, we’re finding adventure in adversity and somehow holding it together!
Summer has been so full of unexpected joys–luxurious and productive staycation for us in June, thrilling aquatherapy sessions for Lucia covered by insurance and rides to and fro covered by Medicaid–even as it’s packed with challenges, too–I sent my book manuscript off to the editor in early June, have been teaching summer school at Princeton since July, and start a new job at the seminary in the fall. All this while the healthcare wars rage on Capitol Hill and we worry as Lucia’s care seems to hang in the balance.
If I seem distracted, unable to focus even in the midst of a sentence, it’s because I am.
But I’m trying to trust that (with the exception of maybe the healthcare battle, deer carcass, and tube being pulled out) there’s a real abundance, blessing, and excess in the way my cup is brimming over, inviting me to embrace this season in its chaotic fullness and to testify to what God’s doing with a life and a heart fittingly overflowing with joy.
So that’s what I’m trying to do (more on how that later), not living a life in response to what others are doing but a life that responds to what God is clearly doing, in a big way in my life, my family’s life, and in this world.
Still, if we were talking this morning, I’d look you in the eye and thank you but urge you to keep making those phone calls on behalf of people who are on Medicaid, who need assurance that health care will be there, not just for the healthy but for the sick, the poor, and the needy. I’ve put some links below that I’ve found helpful and important in wading through the excess of information out there. I did a podcast on Medicaid that I hope you’ll share with family and friends who want to understand its benefits and even as I still feel that families with people with disabilities face such an uphill battle in terms of understanding and coverage, I am thankful for all the support and hopeful that concerned citizens are making their voices heard.
I was reading Margaret Mead for one of my seminary courses yesterday: I sat there for like two full hours just reading and devouring–it was incredible, and this quote of hers that has been on my mind for weeks sprung to my attention. I leave it with you in hopes that you may believe that we can change the world, that God is with us even when we forget it, and that joy is abundant and ample and just as human as fear and defeat!
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?
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.
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!
Tears came to my eyes and my voice cracked as I told my mom over the phone today,
“It was only recently that we found a way to stop worrying that Lucia would die and decided to love her so fiercely and just live life together. And now we’re afraid everyday that she might lose the benefits that make her life so wonderful.”
How can we when our private employer insurance granted through one of the most prestigious universities in the world denies all the things she needs from in-home nursing services to wheelchairs to surgeries and nearly everything in between?
We’ve learned the hard way that private insurance companies will never cover Lucia’s needs because they’re deemed too expensive, too rare, too disadvantageous. So when Lucia was 6 months old, I began filling out paperwork for New Jersey state Medicaid, a process so complicated I could hardly navigate it, even though I have a Ph.D., a Masters, and a Bachelor’s degree. For 6 months we paid out of pocket for all the things that our employer plan wouldn’t cover and we racked up nearly $10,000 in medical expenses.
But things started to shift when we got the first person from the state’s Early Intervention program into our home; she took one look at Lucia shrieking in pain and me helpless to comfort my child and told me, “You shouldn’t have to do this alone. We can help.” And I will never forget those words. 6 months later when Lucia got onto the NJ State Medicaid MLTSS program (Managed Long Term Special Services for kids with outstanding medical needs and disabilities), everything changed. Suddenly, our secondary insurance through the state stepped in to pick up the tab on the myriad of services our private insurance denied. Those giant insurance bills and many of our worries about how we could pay and support her future melted away.
We felt that we had found an incredible safety net in the state of New Jersey. We bought a house here in a school district well-known for going above and beyond for supporting kids with special needs. And Lucia has been taking the bus to a wonderful special needs school; the social worker in our district has been undyingly supportive of our requests. The school district is willing to foot the bill for those bus trips, special equipment, and extra support in the classroom. And Lucia comes home from school everyday babbling (literally babbling) and smiling and laughing because she couldn’t be happier.
But I’m begging you to not take any of this (and this is really what makes America great) for granted either. Indeed, I am so thankful to live in a country where I can speak out and where my voice can make a difference. I have spoken to my member of Congress; he’s a Republican, but he’s willing to fight to protect both the NJ MLTSS program and the Medicaid expansion because he knows how much they matter to families like ours. And I’m thrilled. I have hope, but I am also stressed. Living and loving a child whose circumstances are so uncertain has never been easy. And doing so now when you feel like you have to fight for the very programs that have made such a difference is something I barely have time for in between all those medical appointments and insurance calls and nursing schedules and therapy visits.
But, you guessed it–I don’t take any of that for granted either.
I’ve noticed that when I write posts about our life with Lucia and I tell you about our family’s journey in getting to know, understand, and love our child with disabilities, we are met with such love, encouragement, and support. These posts have been such a deep point of connection for me with all of you because they show me how much you value children like Lucia, who have special needs. They encourage me that you see value in difference and that you understand some of our challenges, delight, and struggle, and this is no small thing.
So with sincere confusion and heartache and much trepidation, I want to ask, friends, why the silence when it comes to these issues of justice and provision and daily life for people with disabilities? Is it because we remain deeply divided in this country and that divide extends to the question of how best to care for, empower, and support people with disabilities? I guess I understand that. We are divided in this country about so many things.
But I want to tell you something–the main reason I began writing Lucia’s story this past year is because I realized that it was so worthy of being shared and that she has so much to teach us. But somewhere along the way, I also realized that when I write about my daughter with special needs on this blog, I do so in an ardent effort to bridge that very divide between us. In fact, I write Lucia’s story (sometimes gingerly and ambivalently) precisely because she doesn’t and she may never have the words to tell it herself. I write Lucia’s story because so many people with disabilities don’t have the hands and feet or the energy to call or march or lobby or fight for their own rights. Of course many of them do, and that is why we have federal legislation like the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA) because so many people with disabilities worked so hard to ensure that such persons are not denied basic rights to citizenship, employment, and education, but the ADA came along only in the 1990s and the IDEA is still imperfect and under threat even today.
But these are all best case scenarios–yes, that scenario in which you must quit your job but you get some benefits and you get paid minimum wage to care for your medically fragile child in your home, or our scenario where you have such great benefits but you’re literally trapped in the state, you can’t consider other jobs outside your state or a home closer to family because those states don’t have coverage–those are the best case scenarios. The worst cases are states that have so substantially cut their Early Intervention or Medicaid programs that families can’t afford these very expensive services that their kids need to grow, or worse, survive. The worst case scenarios are ones where children still sit idle in classrooms with no appropriate or adaptive equipment because states don’t have the necessary funding or won’t put it toward the challenges of kids with special needs. The worst case scenario is a country that becomes so divided that we fail to care for these kids and their families at both the federal and state level, a country wherein we’ve forgotten their rights and thus denied their humanity.
So when you hear politicians threatening to cut Medicaid and deny federal laws that protect children with special needs rights to education, will you remember our family and other families like ours and resolve to stand with us and not be silent? Will you realize and acknowledge that so many families who care for people with disabilities are currently scraping by with so little (nobody gets rich off of disability), and cuts to federal and state programming make it hard for their parents to work, hard for their kids to go to good schools, and hard for such children to get good medical care, supportive seating that helps them go places, and braces to walk, run, and stand? (There is still no comprehensive mandate across this country to enable these families to live sustainable lives–we’ve left that to the states and so many families are living the worst case scenarios everyday.)
These are the things I’ve perhaps neglected to tell as a part of Lucia’s story, because they’re personal and painful and arduous and inglorious but not any less true. But if I can’t humble myself to speak these truths, and if this part of being different goes unknown in this country, then I’ve become complicit in this silence as well.
So thank you from the bottom of my heart for loving our family, for supporting all of us, and for sharing our story. But most all, thank you for being part of a less raucous but no less valid and valiant movement in this country to seek understanding across our differences. Thank you for considering this challenge to advocacy–the charge to love us by lifting your voice on behalf of my family and others and to seek the best for all people, especially people with special needs. When you think about it, beyond Donald Trump’s mockery and Hillary Clinton’s platform, people with disabilities were again surprisingly absent from all this political jarring and sparring and posturing: where was the outcry against police violence toward people with disabilities (#criplivesmatter), or the righteous indignation over the exclusion of disabled people’s rights from the progressive Women’s March platform?
Let’s change this country, friends. They’re going after kids like mine, and it’s not right.
Let’s break the silence. One phone call, one story, many voices, together.
P.s. If you’d like to get started today,
Please call your Senator and oppose the appointment of Betsy DeVos for Secretary of Education and Jeff Sessions for Attorney General. You can read here and here why we don’t trust them when it comes to protecting our children with disabilities.
If we were hanging out this morning, I’d be sipping on my favorite casablanca mint tea. When I’m under the weather as I am currently am, I can’t stand the thought of my beloved coffee; I finally understand what’s so comforting about tea-drinking, and yet, I confess that’s why I always feel like a bit of an invalid when I’m drinking it!
It’s been a whirlwind of a week, packed with teaching for me and unpacking for my husband, but having his family in town broke up the projects and made the follies more tolerable, I think!
One little joy of having his family in town is watching our nieces, especially our youngest, play junior nurse with Lucia. I’ve noticed that when Lucia screeches and writhes for some unknowable reason and all our lips get a little tight and our hearts a bit anxious, Hannah stands by quite contentedly. I appreciate that many children, including her, seem to know how to stand by when there are tears and pain and carrying on, perhaps placing a comforting hand or offering a kind sigh, but not trying to rush us others through their feelings. What a lesson, I think, to be comfortable and at ease with one another’s distress, to be able to witness and hold but not press and prod, maybe offering the best consolation by just being human beings together.
That Hannah is a gem.
I’ve begun to allow myself to look forward to all the things we will do in this house, like baking scones in the kitchen, hosting our first overnight guests in just a week, and enjoying more beautiful evenings on the patio.
I’m also hoping there’s enough room left in August for me to get my book off to publishers, put the finishing touches on a few articles, and maybe conjure a few more writing projects! I’ve been trying to be better about setting and keeping writing goals, and I’ve been inspired by the progress of my students–it pushes me to be a better professor!
We are so thankful that Lucia continues to thrive in her new environment. There is much to be figured out and much to pray for–she has equipment cliic on Tuesday, her IFSP next week, and we’ll be looking into what to do for school for her, but again, we’re so blessed to be in a state that creates possibilities for our child with special needs. It reminds me that this anchor that we’ve put down here may yield some limitations, but it’s also what helps us keep our bearings and keep in view that many blessings we have.
It’s been a fabulous weekend celebrating my husband’s 35th birthday and enjoying the company of lots of friends and the lovely spring weather in NJ. In addition to a photo from one of those lovely walks with the babe, here are some great stories and posts around the internet for your enjoyment this weekend:
“The Five Lessons of Good Friday,” a great article to ponder during Eastertide: I love the nuanced points about suffering and the proclamation that suffering does not have the last word! For my own reflections on how to live in light of Easter, see last year’s post, “Holy everything.”
On the subject of men, women, and the workplace, “The Confidence Gap,” was a lengthy, but good read about what may be holding women back.
And, predictably, especially given the title of this blog and its content, I couldn’t agree more!
But I have to admit that I don’t always practice what I preach.
While I’ve been wildly productive when it comes to the dissertation and ticking things off the baby-prep list, I’ve been flittering away downtime with a host of media distractions.
This isn’t the end of the world, of course. Social media can be wonderfully connective, and much-needed breaks from the rigor of our working lives with tv, youtube, etc. are understandable. But when I think about what I really want to get out of life, I realize how much I don’t want to distract myself from what God’s doing. Rather than check out, I want to check in. And rather than emptying my mind, I want to be filled with the mind of God.
Through the distractions, I hear God’s invitation to breathe a little deeper. And this morning as my dear friend and I sat basking in the word of God, simply breathing together, we felt anew how good it is to simply be in the presence of God. I don’t love the phrase, “carving out space for God,” because I think it’s misleading to suggest that we’re the ones who should be doing the carving.
And yet, I think there’s something to be said for embracing the silence that God grants. There’s something to be said for choosing not to be distracted. And there’s certainly something truthful about remembering that the invitation to the spiritual life is just that, an invitation, which we can either accept, despite all its inconveniences, challenges, and grace, or decline for the meagerness of our own devices.
How can you embrace the silence, the invitation from God in your life to breathe a little deeper today, tomorrow, and this year?
This is a post I wrote for our church newsletter to give our community some direction and comfort while grieving. I hope that in whatever circumstance you find yourself this morning it may offer a reflection and a respite from your troubles.
Have you ever noticed the psalms and the psalmist are a veritable jumble of human emotions? When I first began personally reading through the Bible, I was vexed by the range of seemingly “unchristian” feelings in the psalms—despair, sorrow, rage, and vengeance—juxtaposed with the more expected and accepted—praise, wonder, and jubilation. I didn’t understand how laments, cries of anger and defeat, even one’s heaping of curses upon one’s enemy, could be included in a Bible we hold to be the word of God, and wholly Holy.
But over the years, I’ve come to find great comfort in the fact that nearly 70% of the psalms begin with lament, that the Bible is full of unseemly, broken characters who are vindictive, fearful, and impulsive, and that the psalms are not made obsolete by the death of Jesus, but all the more powerful, prophetic, and complete. For instance, I once heard a sermon about the fateful words that Jesus cries from the cross, lamenting, “My God, my God, why have you forsaken me?” (Matthew 27: 45-46). If Jesus is God, how could he, of all people, lose faith? we might ask. If God forsake Jesus, surely God may forsake us, we might fear.
However, in that sermon, the pastor drew attention to the fact that when Jesus spoke these words, he was actually quoting Psalm 22, a psalm that like so many, begins in lament and despair and then winds its way to praise and adoration. While the psalmist complains that God does not answer (verse 2), and he is but a worm, despised by others (v. 6), he also recalls that it was God who took him from his mother’s womb and kept him safe on his mother’s breast (v. 9). The psalmist remarks that dogs surround him (16), and much as Jesus experienced, “for my clothing they cast lots” (18). Yet, throughout the psalm, he cries out to God (2; 11; 19), and finally, feeling that God has heard him and rescued him (21), he turns to praise (23). He asks that the Lord be glorified by all (27), and promises that he will live for God (29).
By quoting a psalm so meandering and mixed emotionally, Jesus reminds us that to be human is to feel. To be human is to feel despair, anger, and fear, but the end of Christian life is not death, but resurrection—a sign that God never forsakes us. It’s comforting to realize that Jesus lamented, and also powerful to see that those cries to God echo a tradition that claims hope found in the midst of suffering, even death. When you’re weary, I invite you to turn to the psalms and embrace your emotions as the psalmists did, wandering the paths of the heart to faith. I invite you to ruminate on the fact that your wholly human self may be the best instrument to knowing our Holy God, that no emotions are “unchristian” or alien to our God, and that the God who invites us to lament and question, also promises resurrection and healing.