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!
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?
“No parent wants their child to be different,” she said passionately yet nonchalantly, looking innocently into the camera in this week’s premiere episode of a new season of the reality tv show, Little People, Big World. She was talking about the possibility that their baby would be born with dwarfism, while meanwhile her husband, a little person, shifted uncomfortably in his chair, trying to parse the divide, forgive her somehow for saying that his very difference, one she presumably accepted and loved, was so naturally undesired, bad–something to be feared.
I don’t mean to pick on her specifically.
I think many of us bristle at the presentation of disease and disability as unwanted variations and aberrations in nature’s otherwise rather painstaking track record for miracles, successes, and beauty. But what if I told you there were all sorts of dormant mutations in your own genetic material? What if I told you that nature “makes mistakes” all the time and it’s just that some of these variations are visible while others are less so? What if I told you that Lucia, my own daughter, was the result of one of those presumed “mistakes,” so rare, so different, yet so deeply loved and wanted? Might that change your mindset that difference is always something to be naturally avoided or eschewed at all costs?
Underneath the reality tv star’s seemingly innocent words ran a subtle, yet deep vein of privilege and conceit. Anyone who cared would prevent difference if they could, she presumed. But different to whom, I wondered. Black kids are born into a pretty inhospitable world, but it’s not their blackness that’s a problem but the normative white culture that devalues their lives. Gay and transgender kids aren’t really all that different than any other kids and yet their difference is targeted as an assault on heteronormative culture that reproduces itself through fear and exclusion. As long as difference remains the much feared, undesirable cultural alternative to healthy and white and straight and male, we desecrate the true variety and value of human life that God has made because we play God ourselves–even if it is ever so subtly with our wishing away of certain babies like mine.
And yet, this world, this country specifically, is becoming extremely inhospitable toward my daughter month by month. As a parent of a child with special needs, I want to live in a country that accepts and loves and cherishes children who are different– not with asterisks or snide comments or fearful glances or knowing pity or minimal health care or scant education–but full stop. Don’t tell me how expensive my child’s medical expenses are or how arduous her special education is, how different her needs are from a typical child, how wildly incompatible they are with this cutthroat ability-obssessed culture we live in, because I really do know. I know this isn’t easy because I’m living it alongside her.
But I made peace with Lucia’s challenges years ago; we’ve gone on living this incredibly full life and we’ve been buoyed by our church, friends, family, and the incredible array of services NJ Medicaid provides. Our family has found refuge in a state that truly values her life, but for how long? How long will you continue to live by the conceit or the privilege that your life is somehow any different from ours? How long will you fear rather than embrace difference, support legislation that carves us off from one another by our differences, asserts hierarchy in nature when you know not what mutation, future, or controversy may come–legislation that makes health the luxury and priority of the rich?
Control over the progression of my daughter’s disease is a true illusion, but the choice to value her life and give her every chance possible–that’s firmly in your hands and mine.
For those of you who know me well, you know I’ve spent the last year reading almost everything I can get my hands on about the Enneagram and I’ve become somewhat of an evangelist for the personality tool among my friends and family.
Ironically my first foray into the Enneagram was not so entrancing–when I had to do a routine psych evaluation for ministry preparation, the instructor rather used my found type against me, arguing that perhaps it explained my aggression, hostility, and even atypical masculine characteristics! Among people who know the Enneagram well, it’s not a secret that female 8s get a bad rap and are often misunderstood. So that’s why it’s all the more profound that a few days ago, I think I finally realized what’s so powerful and meaningful about being an 8 in this world–a personality I haven’t always found so compelling or easy to live with.
Now if you’re new to the Enneagram, it may sound like I’m speaking another language. But simply put the Enneagram is a personality system that groups our personalities into 9 types, but unlike Myers-Briggs or other personality systems, you’re not easily diagnosed through a test, because it’s a dynamic, interactive, relational system. According to the Enneagram, the best parts of you are also the worst parts of you, so people don’t always find it “easy” or “happy” to find out their types, but thankfully, the system also allows for and encourages dynamic growth.
For my own part, and especially as an anthropologist, I think the Enneagram’s best, most basic reminder is that even if we’re from the same family, we don’t necessarily see the world the same way. But other ways of seeing aren’t bad; in fact, they’re what make the world a much more interesting and beautiful place! One of the best takeaways for me from learning the Enneagram is not just understanding myself better but also building more compassion inside myself for others in respecting and empathizing with the beautiful, perplexing ways they approach life that make the world a much more complicated, but fuller place. Essentially the Enneagram affirms one of the basic tenets of anthropology: our differences make us human!
Therefore, if you’re interested in learning more about the Enneagram and even figuring out your type, I’d recommend that you read about all the types, and perhaps in lieu of taking a test, read some of these great descriptions of each type, paying attention to the core values, the things that make you tick (you can scroll down for my suggestions for further resources below). Enneagram types are complex in that they don’t tell you what a person’s vocation will be or whether they will be successful, but rather tell you more about that person’s motivation in life and some of the challenges they face and gifts that they possess.
But as I mentioned, when a lot of people find out their Enneagram type, they recognize it primarily because of the flaws they can see so clearly in themselves, while they fail to acknowledge or hone the strengths that inhabit their way of seeing the world. As an 8 (with a 7 wing), “the challenger,” someone who is a natural born leader, makes decisions incredibly quickly, and is fearless, I had been really struggling with an experience of vocational discernment as of late. In fact, because of these impetuous and quick-witted qualities, I kept remarking to my “spiritual director” that I suck at discernment: the waiting game, the listening game, the methodical weighing of options is just not me. And as someone who is much more inclined to rely on my mind rather than my heart, I bemoaned my lack of intuition.
However, this type of thinking ignores some of the qualities which make 8s truly exceptional. Because of my gusto, I am truly and uniquely fearless. This certainly becomes a weakness in that I may struggle to emphasize and understand the insecurities others often face on a daily basis, but in my own life, when I see a challenge, I am invigorated, affirmed, and inspired. Sign me up, I think. I’m all about taking risks, I scoff. Bring it on!
Thus, in my life when I have been able to reframe uncertainty and discernment as a challenge, I’ve been able to very quickly embrace the adventure that God has in store for me, not worrying about the consequences or the trials of that risk but plowing full steam ahead. (As I told one of my friends recently, I may be a battering ram, but I can be a battering ram for Jesus!) What I’ve noticed in discernment and uncertainty, though, is that I have a tendency, as many of us do, to try to usurp control (how very 8 of me) from God. I spin into full-on planner mode, determined to think through the details of my future, when the very best that God has for me may not even be visible yet.
My spiritual director has invited me to ponder God’s faithfulness by asking me, “Think of the five greatest things in your life. Which ones were you responsible for? Now which ones did God provide?” Indeed, as a person of faith, in spite of any Enneagram personality knowledge, I am committed to living the life that God has for me. And I’ve realized that this involves abdicating my long-term planning role to God. Ironically, uncertainty and long-term planning are two things that in my penchant to control, send me spiraling out of control, leading away from my strengths and gifts as a passionate 8 who leads with vision and conviction.
I’m not alone in these insights, though. There are many, many people of faith who have begun to draw upon the Enneagram for wisdom not just about who we are, but who we are in God. For me, I’ve started to see how unique it is that I love a good challenge and that I’m not afraid, and I’ve become even more convicted to strive toward the unique vocation (somewhere between anthropology and ministry) that God has for me, even though the world may not always understand that call. 8s are often known for being resilient and strong, and I realize now that this takes “guts.” Even though I may lack for what I termed intuition, I am at my best when I’m relying on and hungering after God, throwing all of myself into that new challenge and adventure!
How has the Enneagram helped you live more fully into your purpose in God? What lessons have you learned about God and faith by getting to know yourself better?
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!
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!
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.