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.
We, like so many other parents across the globe, took our almost three year old to her first political protest on Saturday. And like so many, it was not necessarily the words of the speakers or the size of the protest that mattered so much, but the experience of standing alongside others in that damp, dreary weather and feeling the light and the warmth of knowing we’re not alone in the fight for the rights and dignity of all people in this country.
But when another pastor came up with his family to tell us that he had first started to take his now teenage son to protests when he was about Lucia’s age I have to admit that I was a little dismissive. Lucia would probably not be conscious of this protest anymore than ones she might attend in the future–in other words, I was emphatically aware of the cavernous difference between his able-bodied son and my disabled daughter, of his typical family and my not so typical one. Minutes later an elderly woman wanted to present Lucia was the paper crane she’d been fashioning while she stood beside us.
“Kids must be so bored at these things,” she whispered. “Perhaps she’d like something to play with.”
“Oh, well she can’t really use her arms,” I replied dryly.
“Well, can she see?” she persisted.
“No, not really,” I replied again, rather impatiently.
“But she can feel,” I finally acquiesced, flapping the tiny wings of the little bird against Lucia’s cheek to the woman’s contentment.
Even then, despite this woman’s resolute patience, I felt a pang of ambivalence. I perceived her persistence to be a reflection of her own desire to give her gift, whether or not it might be appropriate to give or whether Lucia could really receive of it. Despite the myriad of people who encircled us to tell us that they liked our “#disabled lives matter” sign and smile at our toddler with special needs, I realized how was possible it was to feel disconnected to the 7500 people with which we stood.
Nonetheless, not only the Trenton march, but the hundreds across the globe, especially the march on Washington, were an enormous success, and on Sunday as we stood in the church hallway, the other pastor and I chatted excitedly about what it feels like to be part of history. I remarked on how deeply moved I was by all the supportive responses to the piece I published on Thursday on this blog and Friday in the Huffington Post and how emotional it was when friends texted me photos of themselves marching in name for our daughter, Lucia, and disabled people across the country. But then again, almost before the words were out of my mouth, I realized I didn’t like how they sounded: I realized I was being dismissive again. I said something like how loved we felt, how Lucia had been so happy all day, but of course, she didn’t understand much of what really was going on, although it still meant something to us, to her parents.
“Oh, I don’t know,” my colleague replied graciously and carefully with something like, “I think love is love. I’m not sure we really know how people love, how it works, or how they receive it, but I think we can feel it. I think everyone can feel it.”
I swallowed, a big lump rising in my throat, and I thought about the pastor and his kids and the woman with the paper crane. I thought about the 7500 people marching in Trenton and millions of others across the globe. I thought about the words I’d written last week, and I realized that in the midst of calling for Lucia’s rights and for real love for her, I, too, have the ability to silence her.
It’s not up to me to decide what’s love or whether or how Lucia receives it. I realize that as much as I understand the reality of my daughter’s differences, I am not in a position to fathom what love really feels like to her, how she receives it, and how she experiences it. Those are my own limitations, and it’s not for me to constantly assert her differences when other people see common ground, or to presume that there’s a right or a wrong way to love her. I realize that perfect love isn’t about the most appropriate gift or words or gesture, but it’s about the desire to engage, to stand with, and to keep trying, even when the caverns seem massive and deep.
So with a humble heart and a contrite spirit, I realize just how tremendous and miraculous your outpouring of support has been, how deeply thankful I am to all of you not only because you’re fighting the good fight, you’ve got my girl’s back, and you’re doing everything you can to be a voice for justice, but because you remind me and are teaching me everyday about what love really means. You’re teaching me what it really means to let go and let Lucia love and be loved by you. And it’s not necessarily how I would have imagined it.
But thank God for that.
Thank God that despite our limitations, God somehow uses people to enable love to break through and remind us that God is love–that perfect love looks like undeniable kinship between so seemingly different families, paper cranes, spirited marches, letters to Congress, Lucia’s happiness, and so much in between.
Love is love and God is love and that’s why, despite our best (and flawed) human efforts, we’re never really alone.
P.s. The Betsy DeVos vote has been postponed until Jan. 31 so that gives you a week to call your Senator! See my previous post post-script (hehe) on why DeVos is bad on disability rights and how to call.
P.p.s. The Jeff Sessions vote could be as early as tomorrow! Call your Senator now to oppose and read this article to see why he’s bad for disability rights, too.
P.p.p.s. Letter writing is effective! Learn how here and please write to your Congress-people (you have one rep and three senators) asking them to protect state and federal Medicaid for families with disabilities!
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.
This season I’ve been intentionally quiet, quiet mostly in the mornings but also quiet on the blog. This Advent, I’ve tapped back into my practice of Lectio and Centering Prayer. I’ve been reading the prophetic scriptures from Isaiah and the journey to Bethlehem in Luke as the Syrian city of Aleppo crumbles, lives are lost, and great fear reigns throughout our world.
I haven’t known how to respond to all the darkness, have you?
I should speak out, I think, say something like Isaiah, the prophet, reminding us how to follow a God who is not of this world, a king who is not violent, but gentle and humble and an outsider.
Is silence surrender in the face of such great evil, especially in a season that proclaims resounding joy, reconciliation, and peace?
I strive to work for justice in fits and spurts, donating, signing petitions, calling my congresspeople, but in the mean time, in a faraway land from where our savior was born, I hope that my silence meets God’s faithfulness. You see, what I have always found so powerful about centering prayer is that I’m not doing anything–and that’s the point. Because if prayer is just one more thing that we do, let alone one more thing that I presume to muster of my own wisdom and accord, then it is anything but a holy offering or a right relationship to God.
And so as we wonder how to respond, I wonder, whether as always, if it isn’t less about us and more about God–God’s saving action in the world? I am patient in this season to listen but not to listen without responsibility. I listen and trust and charge God with all God is always doing to offering healing, respite, and reprieve. And I wait for God to give me the words, the actions, and the steps to be an instrument of peace this Advent season.
If you’re interested, there are over 30 posts in the category “Centering Prayer” on the blog.
Here are also a few posts from past Advent reflections and practices:
Finally, I’d be interested in hearing from any of you who are struggling in waiting this season. It strikes me that waiting and silence feel particularly cheap in a season where this so much violence and need. What is God teaching you? Where is God leading you?
We’ve spent the last few weeks caring for our daughter who just had surgery. She was in a fog for about three days from the anesthesia and all the pain killers, and though she had no major complications, we felt like we lost her for five days or so to that medicine-induced haze and the severe pain she experienced intermittently. Leaving home last weekend and this past Monday to head to work was particularly difficult because she wasn’t fully healed (she still isn’t), and she certainly wasn’t yet herself.
And when people asked well meaning questions I felt most qualified to answer them from my experience–my husband and I were struggling so much with seeing her usual bubbly self all comatose and uncomfortable. Caring for someone who is in pain is painful. Despite the seeming wisdom of it, then, when people tried to move past the pain–“but the surgery was successful, right?” “But she’ll feel better soon,” or even, “Well, of course she’s in pain…”–it made me feel very misunderstood. It felt like other people were trying to look past the real pain and grief of my experience because it wasn’t very palatable, convenient, or acceptable. They wanted to resolve my grief for me, but when I came home and found Lucia limp in my husband’s arms or screaming in pain, I felt so alone.
Precisely because I was grappling so ungracefully with my own grief these past few weeks, I immediately recognized something similar in my students’ tear-stained faces, slumped shoulders, and speechless, flustering sighs the Wednesday morning after the election. Truth be told, given my own personal grief, I didn’t quite feel like beholding the grief of another. But something nudged me that a void remains a void (or becomes even worse) unless a leader, even a trepidatious and imperfect one, steps into it. And so, armed with some words of wisdom, some humility (after all, I knew that some students’ grief would be juxtaposed with other students’ celebration), and a deep conviction, I showed up to class that morning.
I showed up and told them I wasn’t really equipped to moderate their discussion but felt that we needed to acknowledge what happened, our varied feelings, but mostly that for the 15-20 minutes as a class we would covenant to make our space safe for all people, and to be respectful to especially those who were grieving. Many students cried, other students aired frustrations, some students tried to move forward. Very gently I nudged them back toward their grief. When one student tried to tell others they were overreacting, I did the same.
I tried to carve out a space where grief was acceptable and welcome, recalling how alone I’d felt just that past weekend when my grief had been too much for others to bear. It was only 20 minutes. My students have a paper due this weekend. Life goes on.
But I wonder sometimes what our country might have been this past week if we could have bore one another’s grief a bit more consciously and transparently and reverently over these past 18 months leading put to the election. It seems so much anger, righteousness, and denial in both campaigns speak to distinct places and manifestations of grief in more palatable clothes. It’s always more acceptable in America to express anger as opposed to weakness, righteousness over fear, blame rather than humility. But it feels decidedly too little too late when so many in this country were already hurting, but we mistook their grief for the ugly face-value emotions they presented.
Perhaps my greatest comfort in these trying personal and corporate experiences of grief is knowing that even when we fail, God’s empathy is deep enough for us all. When we think we’re alone in our grief, we never really are. But God is also not “on our side” as we in America are always tempted to think; God does not rejoice in our clanging campaigns of strength and righteousness but in our genuine holy moments of listening to one another.
In the dramatic days after the election, despite our penchant for progress, there have been holy moments of grief. They are moments we want to move past, but what if they’re just the beginning? What if they are moments that truly matter? I learned this past week that even when we are weak, God can make us strong. We can make space for those who are grieving to be heard, and while it may seem a simple step, it’s a vital one to healing.
We cannot heal if we do not break apart. We cannot lead if we assume God is looking for wholeness and greatness and power. Perhaps God can use us just as we are. Perhaps our lament is pleasing to God’s ears, too.
However, as we drove home from the hospital after a successful surgery with Lucia yesterday, I reflected that in so many ways this attitude of understanding our children’s lives as cause for celebration rather than burden is bolstered by the support systems we share. My husband and I are so thankful to live in a state that invests in Lucia’s care, to have insurance, that despite its shortcomings, generally covers all that she needs, and to have friends and family that love Lucia unconditionally, pray for her, and care for us!
It is difficult to imagine how we might view Lucia’s disability if with every medical intervention we had to also sweat the finances or insurance coverage or if we had to worry that someone caring for her didn’t have the proper resources or training. These are the very important supports that often go unstated in the words I write about Lucia, and this morning, I am thankful for them. I am also deeply prayerful that families who don’t have such support will find it in gracious lawmakers, caring social workers, more humane insurance policies, and more state programing for kids and families with special needs.
The pending election in this country may seem positively incongruous with this month in which we aim to practice gratitude by naming our blessings when so many, like the ones above, go unacknowledged. But this morning, I began to wonder what it might look like to practice a spirit of gratitude despite the strife and division in this country and the world.
How would our attitudes toward one another shift if we were to focus our attention on all that we in America have to be grateful for, what we are grateful for in the candidates we support, or what we are grateful for when it comes to the provisions of our country and state (rather than only so very critical of)? Thanksgiving invites us to pause and offer God the praise that God is due, and as we can see, this in and of itself, in an election season can be very powerful and countercultural! Could such thanksgiving invite us to more civility and less hate? Could it remind us of our common human needs, desires, and goodness? Could it point us back to God when our human ways are frail and flawed?
I realize, perhaps more personally than many this election season, how dire and in jeopardy such supports for people with disabilities are, and I do not discount these challenges, but I wonder if gratitude is still an appropriate way to reflect on the hardships in the midst of the blessings. After all, God has taught me so much about how to experience blessings despite the challenges as we’ve gotten know Lucia!
So this morning, I am thankful for…
The amazing nursing care provided through Medicaid in the state of New Jersey, for my daughter, Lucia, and the opportunity for her to attend a school come February that will meet her special needs.
Students at a historically black college who protested a KKK speaker in their auditorium and people protesting a pipeline that will disrupt Native American lands. Thankful for those who lift their voices, use their bodies, and engage in brave, peaceful protest for those in need in this country.
A democratic country with peaceful elections, robust debate, and freedom of speech.
All those who love Lucia so well, celebrating rather than mourning or pitying her life.
What are you thankful for this morning? What countercultural words do you have this election season? Feel free to link up with this post and write your own #thanksgivingforelectionseason.
We’ve spent the weekend moving into our new (but I really should say old) house!
Here it is and it’s older than the constitution!
The house was built circa 1785 and is part of this teeny crossroads historic town in the NJ countryside. It’s been a huge ordeal just getting here as the move-in date was pushed back months and months due to repairs and negotiations. Despite it being built so long ago, from all accounts it’s actually in great shape. I can’t decide if it’s the best decision we’ve ever made or if we’re bats**t crazy, but a friend who knows us well and is pretty truthful grinned when I said that and replied, probably a little bit of both!
The best news is that Lucia really seems to love her big, light-filled room, there’s views of a gorgeous, historic church across the street, and I’ve already seen tons of butterflies, birds, and bunnies out here. We’ve been really thankful not to be in a flood zone this weekend and for all the help from friends with meals and unpacking. Can’t wait to get out and explore the area when things dry and would love to hear all your favorite links for home knick knacks and furniture!
But we’re settling in on this torrential downpour of a weekend, and with internet and a morning off from church, I thought I’d post some links, too. Hope you’re staying dry and hanging in!
“The only means of strengthening the intellect is to make up one’s mind about nothing–to let the mind be a thoroughfare for thought.” -John Keats, 1819
My husband and I don’t really understand the hullabaloo around the RNC and the DNC. As he snarkily commented, “Are these the same people who enjoyed pep rallies in high school?” I love that people are getting excited about something, especially when the world has been so dark as of late, when our problems seem so immense.
But to me, it’s mostly just rhetoric. Is that maybe all it is?
Our responses to all this are not much better: we either seem to rally around the least offensive rhetoric or cry cynicism because the politics is truly so off-putting. But cynicism really is the height of laziness because it’s fully dependent, accusatory, and glib (and most definitely not an agent for change), and vapid enthusiasm isn’t much better, because it doesn’t teach us anything about who we really are, it doesn’t heal wounds, it doesn’t create solutions.
So where’s the inspiration this morning? Well, I think it begins with us.
As I’ve been hearing all these great words these past few weeks, I’ve been thinking, let us not wait for someone to inspire us, America, because what we need is less of politics and more of real life. Let us do the inspiring by telling our everyday stories to one another, by sharing our problems, our triumphs, our solutions.
A few nights ago I had to run out to Walmart to grab a few things. I actually love going to Walmart because whatever your politics, it is one of the most diverse places around here. I hate going to Walmart though because it always takes so damn long. But I noticed something on that extra warm evening–people who didn’t look anything like each other, who don’t speak each other’s languages, and who come from very different cultural backgrounds, were going out of their way to be kind to one another. The young black guy behind the counter, so deferential to the Spanish-speaking family in front of me, the woman with the headscarf behind me, and to me, the young white woman. The lines were jammed up against the registers but people were patient; I watched a couple young black men let an Indian family with a full cart go in front of them in line.
I thought to myself, not bad, New Jersey, not bad.
This kind of stuff that we do everyday in America goes unnoticed but it needs to be celebrated. It’s not going to make the papers, it’s not going to make the speeches, but it’s inspiring and it’s life well lived. By sharing such a simple story, I don’t mean to paper over the real differences and the real problems in our country either–but I guess when I think in terms of inspiration, I’d rather find something concrete that I see in front of me, in my backyard, that’s real and right and true. I’d rather take my cues from the diverse group of students in my classroom that cultivate meaningful but respectful conversation everyday as points of inspiration rather than the words of a few. I’d rather think critically with folks in my congregation about how to build community rather than watch someone else pontificate about who or what America is or will be.
I guess my plea for inspiration this morning is for us to take heart and hold of the good things around us that often go unnoticed–to report them to somebody and to someone, and to talk together, to begin to share and pave real community solutions where rhetoric may fall short. I’m not saying that we can’t watch the RNC or the DNC and we can’t have passion for the candidates that inspire us, but I guess I’m saying that I think, we the people, need to do the real work of inspiring.
And if we look around, even in the most seemingly ordinary places, we just might find it.
If we were having coffee today, I’d tell you that it’s been a thrilling week teaching in the Freshman Scholars Institute program at Princeton, talking with my new students (about Plato, Freire, Hitchcock, and Du Bois), and also hearing some of their stories and their passions. When I sat with them on Sunday evening during dinner, I noticed that while they were saddened by the violence in their country, they were not defeated by it–their hope for the future is inspiring.
I’d tell you how challenging I think it may be for me to keep a handle on my writing projects and professional goals with this busy summer semester course. A month ago at the Frederick Buechner Writer’s Workshop Institute at Princeton Theological Seminary, several workshop presenters talked about the efficacy of collaborative writing partnerships. In one pair, two academics set quarterly writing goals and checked in with each other on writing schedules once a week, also exchanging work, and talking about writing over a weekly call. I’m striving to set and keep writing goals myself and considering such a partnership as one possibility.
How do you keep your writing goals? What are your best tips? Would love to hear from you!
Finally, I’d talk to you about all the excitement and anticipation my family and I have about moving into a new house in the coming weeks. As you know, we’ve been living in other people’s apartments, and God’s been providing for us so effortlessly, but at this last stage, I feel the anxiety creeping over me. It’s been easier, I think, to be faithful with little, and I struggle with the grandeur and responsibility of moving into a bigger place. Also moving is just the worst, and the thought of that upheaval leaves me weak.