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 had this one fear when I realized that Lucia had Aicardi-Goutieres Syndrome and would likely live a rather unconventional life. It wasn’t that she would be different–as an anthropologist (and a minister), I’ve learned to embrace difference, and the foster mothers I studied in China had enumerated the ways in which people very different from us often expand our very knowledge of ourselves and what it means to be human.
But I whispered to a few people and I worried in my heart of hearts that while Lucia might be able to receive love, she might never be able to give or express it.
I don’t think I worried it selfishly (although certainly naively), but I just thought about my own life and how much I’ve learned and received and grown by the very challenging act of learning to love others–not just receiving love–and I guess I couldn’t quite imagine, amidst days on end of shrieks of pain, colossal brain damage, and multiple disabilities, what that would really look like for Lucia.
On the eve of her first day of school and just past her third birthday, however, I not only finally see how much I underestimated her and God but how much a person can say without much purposeful movement, without words, or without rolling or crawling or walking or talking. I underestimated how much joy can emanate from such tiny, immobile person–how by the age of 3 Lucia has taught me more about love than I’d learned in maybe three whole decades–how her way of loving would change everything I thought I knew about God and life and love.
“Do you think she knows you?” people will ask my husband and me, and there are things we will tell them, like how she cocks her head and her eyes focus for just a split second when she’s really listening or when perhaps her limited vision has allowed her to take in some glimpse of the world. Or how she recently started to erupt into fits of giggles when she hears her daddy make farting noises or how a slow smile seems to creep over her face when my husband or I set foot upon the creaky boards in our noisy house. Or how there are times when you take her in your arms and she seems to wrap her rigid little arms around you in a way that makes you feel known and held and real.
But it’s all very hard to tell or describe, because you can’t break joy or love down to a science. How do you know your child loves you? You just do. There’s a feeling between you and it doesn’t go just one way when it’s felt–it’s a shared cultivation, this business of living and being loved. And how I ever thought it possible for that love to be unrequited now feels so distant and so foolish and so naive.
And so I can’t really find it in myself to worry about how Lucia will do when she goes to school. Lucia will do just fine. We know she will grow so much by being around other kids and by learning and by moving–she’ll thrive in a social environment, for sure. But those people around her–I’m almost more excited for them. Because they will be loved with a joy so deep and so profound and so beyond any of our imaginations that they will grow in these ways that none of us ever imagine to be possible.
Lucia reminds me how much more there is to be learned from those who seem the least capable, the most impaired, the least adept at the things in life and that there’s something of God’s love in every speck of our beings however imperfectly or perfectly made we may appear.
We love because God first loved us. Every single one of us. Even my Lucia.
The first year I was teaching in the writing program Lucia was diagnosed with Aicardi-Goutieres Syndrome just a month after her first birthday. I remember that despite the cake and the guests, there was a somberness to that first birthday. Lucia couldn’t eat the cake we made, because she’d just begun feeding through a tube a few months prior. We worried that she’d spit up violently during the party like she often did or that she’d scream in pain most of the time. But mostly we felt intent to celebrate because we didn’t know how many birthdays we’d have and we were desperate and determined to have that first one even if it wasn’t perfect.
Later that summer I began to wonder what God was doing.
I’d spent years doing research in China studying foster families who raise children with disabilities; disability in China had become so unexpectedly a professional, academic interest. And then we had our own child with special needs and it all felt a bit too close for comfort. People wondered about the order of things: surely you planned to study disability because of your own child? No, it was the other way around? They’d shake their heads disconcertedly, unnerved, perplexed. It felt reductive to presume God had been equipping us in China to be Lucia’s parents or a bit simplistic and crass to pronounce that Lucia’s disability and our relationships with families in China had all been a part of God’s plan, but it was also hard not to see it that way either.
But somewhere along the way, I began to embrace what God was doing even if I didn’t gully understand it. I began to dream that summer about a writing course about disability, but would students want to take such a course, I wondered. When we develop our writing courses our directors always encourage us to get inside the minds of 18 year olds arriving at college, and so the most popular classes are on madness, New York, extra-terrestrials, and film. Would a course on disability really be something freshman students would care about?
I’m not sure how popular my course has been, but every semester, two groups of twelve students walk in the door. Many of them come because they have a family member who has a disability, and they want to understand and talk about it. Some of them are just curious. I’m sure for several of them, my course wasn’t their first choice and they just ended up there by chance.
But I try to make the most of that chance.
The course considers disability as a form of diversity, a form of difference, and challenges the students to think beyond what they thought they knew about disability to reconsider how disability can teach us more about what it means to be human. At an elite, ivy league university, the thought that people with intellectual disabilities might be insightful when it comes to our knowledge about humanity it a particularly challenging, counter-cultural thought. For some of my students that dissonance, having a brother back at home who struggles to speak because of his autism, while they are thousands of miles away, toiling for the mere self-improvement of their own mind, is nearly too much to bear. During a routine writing conference, one such student broke down and told me, “I just had to take your course. When I look at all the ones on campus, it is the only one that seems to matter.”
I am not a miracle worker, but I do try to offer those students shelter and companionship within the world of academia. I know just how inhospitable such a world can be to the daughter I love most, the daughter who has taught me more about myself, life, and God than nearly any other human being on the planet–and yet to so many, she is broken, disabled, lacking. Together with twenty-four students each semester in this small, windowless classroom, we encounter just that kind of prejudice and exclusion toward people with disabilities, and I invite them to see otherwise.
What happens each semester is powerful.
Not only are there brave, open-minded students who have little contact with people with disabilities but come because they want to learn, but there are students with disabilities in my classroom who find that they are not alone and they are valued. There are students who leave impassioned to work with and learn more about people with disabilities even though they came in somewhat hesitant.
And at the end of the semester, when I have the students write narratives and Op-Eds about what they’ve learned about disability, I am overwhelmed. At the end of a semester of rigorous academic writing, they are invited to share their hearts, and I sit there with my coffee and my computer, humbled and honored to be invited into their beautiful, painful lives. So many students have written about how religious leaders have been so limited in their understanding of disability, hurting their family members, denying their humanity. So many have written about their own struggles with learning disabilities or mental illness that they’ve often kept to themselves on a campus that doesn’t have time for any inkling of weakness. Still others find the language of disability and difference a provocative opening to reconsider their experiences of race, class, gender, or body issues.
Every semester these disability narratives blow me away.
I learn so much from my students. Indeed, it was with that first class that I began to write about my own experiences–“I’m Not Sorry” was my disability narrative that I wrote alongside them, because I told them that I couldn’t ask them to be so brave if I wasn’t willing to try, too. These students have made me realize that the collision of my personal and professional life is both a gift and a responsibility. As I read over these narratives this past week, I realized that students leave my classroom better equipped to appreciate what is sacred in people who are different from them. And the hope that welled up in my heart when I read those narratives was distinct and surprising and so thrilling, because these students will resist attempts to belittle those who are different and those with disabilities. I know they will. These students will use their knowledge for good. It is because of these students that I can’t help but find purpose in my life and Lucia’s life; the opportunity to serve them and to grow alongside them is just too precious, too unique.
A few days ago, I snidely posted the following words to my social media account,
“Apparently there’s an inauguration today. Meanwhile, I have rearranged my office for maximum coziness while I get to read the exams where my students explore what they’ve learned about disability and difference over the course of our semester. How’s that for a protest, Mr. Trump? Three semesters (and counting) of students who will value and advocate for people with disabilities: we will make America great with or without you.”
So you see, this class, while it’s not overtly political is a distinct act of resistance in a world that is far too close-minded, cruel, and careless when it comes to the lives of people with disabilities. It’s resistance that comes from knowledge and hope and love. It is the resistance that I choose and that has chosen me. And I will carry on because just a few years removed from Lucia’s first birthday, I no longer question God at all. Rather all I can do is thank God for God’s incredible vision and a life so humble and yet, so grand.
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.
A few months ago my husband said something to somebody about relishing the times when Lucia was a little baby (even though she was screaming all the time), because they were lovely and quaint and we’ll never get them back.
I remember so vividly how I just looked at him like he was an alien when he said that, because I couldn’t have felt more differently.
But I think I finally know what he meant.
I’m not sure, but I think there might be some great misnomer out there that life with children with special needs is abominably hard and painful all the time rather than also delightful and sweet and radiant and good.
Like one might assume that being in the hospital all the time sucks, and it really, really does, but then again, it also creates these long stints where we get this built-in family time and we really talk to each other and love and care for each other. Our memories might be punctuated by hospital stays, but they’re also punctuated by moments we got to know our kid better and our love for her became fiercer.
Or what about the moments in between the screaming Lucia did as a newborn when she collapsed into our chests or fell asleep with her head in our hands? Or how even though feeding her seemed to be practically killing her, walks in the fresh air were a balm to her soul?
I think what my husband realized even more than me is that the hard months that came very quickly after Lucia’s birth, the challenging diagnosis, and all the hospital stays can’t, don’t, and won’t crowd out the truth or mar the delight we have in her and the fondness with which we always think on her and the family she has made us.
“My husband and I have become parents to a precious child with profound special needs. It has changed and will change our life forever. And it is good.”
It is good. It has always been good.
There was the truth right there, writ all over my announcement to the world of who Lucia is and how our life has been and will be with her. Do I often wish that we could heal her wounds swiftly and eliminate her pain? Of course! Do I pain to see her struggle to do simple things and sometimes just survive? Why yes. Do we all not know what to make of some of these challenges and decisions sometimes? Precisely.
But does God, in all of his infinite wisdom find her so perfect and so good that there’s not a question in my mind that we are distinctly and deeply blessed? Definitely.
“It was good,” God said when God made all of creation. And he meant it. Though life may be flawed and time may bring wounds and pain and hardship, all goodness is transcendent, true, and from God.
And I am deeply thankful to see and know Lucia in all her goodness, one day at a time.
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 examined all the evidence, talked to multiple doctors, and made the decision for Lucia to have a minor, preventive procedure next week. But given that nearly every one of Lucia’s surgeries, despite its long-term success, has resulted in substantial consequences and complications, no decision ever seems so minor, no surgery decision ever completely or clearly obvious or secure.
When I was a kid, I used to think that being adult meant that when you made decisions you made them because you knew what to do–because you could distinguish between right and wrong, good and bad in the way one prunes the dead branches from an otherwise life-filled tree or discards bruised and rotting fruit.
But I think I find this so hard because I’m an 8 (on the enneagram). I make decisions swiftly, like it’s my job. In fact, it’s a job people often, with great, hearty, thankful sighs, outsource to me. I’m proud of my forthright and decisive nature, because it contributes to my vision. I can often see very clearly the path forward when others are still hemming and hawing over the myriad of options.
But I do not enjoy one bit playing God with my daughter’s comfort, life, future, and pain.
I really wish there was someone to outsource all of that to.
But then I’d be someone else’s parent and she’d be someone else’s child. And she’s my conviction, all twenty-three pounds of her is what motivates every excruciating decision and prayer and hope and risk.
Because when it comes down to it, complacency and inaction and passivity are all luxuries as well. As Mary Oliver so starkly put it, “Tell me, what is it you plan to do with your one wild and precious life?”
At my bravest and perhaps most decisive, I realize that Lucia is already living this life, and we are merely striving to find the conviction to live it just as fully with her. So we strive to outsource the burden of those decisions to God so the weight of them, whatever they may be and whatever may come, feels just a bit lighter. We decide to live each day with conviction, because perhaps it’s not so scarce after all or just reserved for big decisions. Perhaps conviction lies in embracing the everyday moments that compel us to see just how blessed we are to live this life with Lucia and one another.