If we were having coffee, I would tell you how glorious May has been with its graduations (beginnings wrapped up as endings), breezes and flowers, and yes, even rain! The other morning when I saw birds whizzing around with big, fat worms in their beaks I realized how happy they were about the rain and it made it decidedly more tolerable!
When I began this year teaching in my new position at the seminary, I had braced for the challenge, the uphill newness of it all, but I never could have imagined the pride that has come at getting to know these students and having a small impact on their lives and ministry. This has been such a joy and yet, May has also brought necessary rest that I didn’t even know I needed. All of a sudden, the world seems lighter, more affable, with more space in it for creativity, thought, opening, and even play.
Lucia is thriving, too. She’s on a new formula that she’s tolerating so much better than in February or March. We’re steadily increasing her intake and speed, hoping she will be able to get more nutrition. We’re thankful for this respite, yet we know that nothing is forever or for certain. What we’re eternally grateful for is her sunny disposition through it all–in an overnight minor procedure last week, her smiles and giggles were so lovely to behold!
May is kind of the gateway to summer, so there’s also the fun now of expecting things. I put together my summer goals, which are quite simply fieldwork and revising my book on China, but I broke them down a bit on the whiteboard in my office. I realize that this time of year is so rejuvenating for me because it’s all aglow with ambition and possibility! Now if I can only realize these goals and maintain this steady pace of work and play throughout the summer.
On Friday, my husband and I take an overnight trip to New York City to celebrate ten years of marriage. We’re planning on dinner at the same French bistro I surprised him with last year. In truth, we’re forever trying to recreate our idyllic five year anniversary trip to Paris, which I’m totally okay with. I have the fondest memories from that trip and from ten years of marriage, with so many travels, our little girl, and a bright future ahead!
As we roll Lucia away from the face painting station on Saturday, a bright blue and yellow seahorse on her flushed cheek, I overhear the student ask the next little girl who’s climbed up into the chair how old she is. “Four,” she replies effortlessly. “Oh, you must be in preschool then?” the woman asks.
Lucia is four. Lucia is in preschool. But she doesn’t climb up on chairs or talk. I rather marvel at the young girl’s speech and motor-skills until I remember that my kid is the one people sometimes describe as “really disabled,” that my kid is the one who’s developmentally behind, delayed, atypical. It’s only in brief dissonant moments like these that I sense that my kid might be “other” to someone else or that our life might be considered atypical, because of course, to me, she’s just another four year-old with face paint, and we’re her parents.
But I’ve often felt like I’ve glimpsed something other-worldly in my daughter when she laughs, because the giggles tumble so uncontrollably out of her taut little body, erupting out of her, they seem to send ripples throughout the room. When we’re in public, I love to catch people, especially otherwise grouchy looking people, finding those giggles downright contagious, moved by the pure joy of the sound of her laughs, the generous, inclusive flash of her wide smile. She lacks words, but in these moments words are obliterated, unnecessary. She can’t really move on her own from her wheelchair and yet when Lucia laughs with true abandon, completely undeterred by anyone else around her, it strikes me that she is uniquely, utterly free.
Earlier that Saturday morning when Lucia and I sit there lazily in the living room, still in a stupor from a sleep study we completed the night before at a hospital an hour away from home, my husband says something astounding. He reminds me, the anthropologist, that the oppressing milestones of developmentalism inflict not just stress, but moral judgment on many a parent. Feeling as though it is up to you to usher your child through life’s varied stages with utmost precision is constraining and exhausting. And by that yardstick, our four year adventure in parenting is one colossal failure.
But then, we’ve also been set free.
We live life and we parent simply for the joy of it all. We don’t worry if we’re doing it right, because all we can do is seek comfort and happiness for our girl. We’re hurt when she hurts, of course, and there are times we wish we could fix things that we can’t. That pain that she feels and that hopelessness that we often feel are not to be understated. And yet, because of all the things we can’t do as parents and perhaps some of the things Lucia can’t do herself, we’re also very free.
We can’t hardly do anything but love her, and so we do, one joy-filled day at a time.
And it’s weird, precisely because Lucia does so little, I feel like it’s easier not to get lost in what she does, but to get to know her for who she is–a generous, patient, gregarious little soul–and it reminds me that none of us are the sum of our accomplishments anyway. So why do we let ourselves treat our kids that way? As if life is mostly gain and growth, when they’re all we’ve ever wanted, just as they are. Maybe it’s because deep down we’re not sure we’re really enough just as we are as people and parents. We could always be doing more, right? We are our own enemies of freedom, our own robbers of joy.
But before you say that we’re extraordinary or that Lucia’s extraordinary (okay, well that may be true!), let me tell you something else: there’s little in life that we actually control and when it comes down to it control is not at all what it’s cracked up to be. What’s extraordinary is that in a world of such chance and circumstance and chaos, we three get to live life together. We get granted these moments of joy and freedom that are other-worldly and grace-filled.
Now as a Christian, I tend to think joy is a gift from God, but whether you’re a person of faith or not, you may be able to agree that joy seems to come from elsewhere and only deigns to nestle itself between people with audacious graciousness–it’s always granted, never earned. That’s the one thing I guess we’ve come to understand about parenting, too. Its freedom is granted, but it also requires our willingness to let go of all the things we think are so important to receive it. I’m sure it may look like many of those things have been stripped from us, wrested from our control in becoming Lucia’s parents, but I just don’t see it that way.
Because when Lucia’s gone, I doubt I’ll remember or cherish how well she stood in her stander, how efficiently she swallowed bites of puree, or even mimicked the sounds of our voices, but I’ll never forget the sound of her laughter. I’ll pine for it, like I pine for nothing else. And I’ll pine for the way that laughter bid me to laugh alongside her, when I wouldn’t have had the courage to laugh with such abandon on my own. Without Lucia, I wouldn’t be a parent. Learning to love Lucia, I, too, have been set free.
The other evening a few of my friends indulged me in asking about my summer research project on disability and joy. I yammered on a bit about my excitement about what I might learn from families with persons with disabilities who are nonverbal, and then my husband spoke up. He talked about the presumed extremes and edges for families raising children with disabilities, especially children with rare and life-threatening conditions like ours. “Either you’re at one extreme, devoting all your time and energy into fighting this disease and finding a cure, or you’re slumped over on the couch, defeated and depressed, resigned and remorse that life is so cruel and painful.”
Of course, I’m paraphrasing. Although my husband has spoken of these extremes often, down to the very way he first framed our public announcement of Lucia’s diagnosis, I’m not sure it had ever occurred to me how these hostile extremes prey upon and distort the reality of life as we know it with Lucia. Why didn’t I think to frame my project this way, I thought? After all, isn’t it this insidious framing that makes the pairing of “disability and joy” so presumably unexpected and rare?
These stereotypes about parents of kids with special needs, made it and continue to make it really hard for me to open up as Lucia’s been in a really trying and uncertain period of feeding intolerance. In our first ethnographic interview for the project this week, one of the parents spoke eloquently about the burden of communication that’s placed on she and her husband to keep the world appraised of her child’s medical status and progress report. A few weeks ago on a Sunday where I’d finally resolved to open up about how overwhelmed my husband and I felt about Lucia’s feeding difficulties, I quickly found myself sandwiched between two platitudes–the one about God giving special kids to special parents and the other about kids being able to overcome their disabilities with hard work, and I just wanted to scream.
When well-meaning friends jump so quickly to wishing life was otherwise for us and striving to help we and Lucia overcome all her challenges, I feel shortchanged and silenced, because it starts to feel like our life’s everyday difficulties come as such disappointments to others, and then I feel the burden of having to help others find narratives of progress amidst our very chronic, circular story. Of course you wish the best for us, but when that comes at the cost of your narration and my silence, I can’t help but feel you’re wishing away so swiftly and expertly the difference between us, without acknowledging that that difference is where my family and I live. I know it may sound harsh, but in these moments I often feel as though people would rather experience my family’s thriving or failing as a spectator sport, watching from a distance, finding some sentimentality in it, and then going back to their regularly scheduled lives, buffered by that comfortable (manmade) chasm between us and our seemingly very different realities.
I’m aware that neither my humble ethnographic project nor my blog posts can suddenly or significantly alter the cultural scripts surrounding families with family members with disabilities (let alone people with disabilities, especially people who are nonverbal, but that’s for another post…), but I do believe there is great power in helping families tell their stories as they want them to be told.
When I came home from church that evening a bit emotionally battered and bruised, I thought about why those conversations stung so much. They stung because the truth was that amidst great hardship, I didn’t feel that things were just hard on the eve of Lucia’s fourth birthday, I also felt exceedingly grateful. And so I began to write parts of this post and I resolved to try again. Yet another Sunday, I told my story with its mix of grace and hardship and beauty and pain and joy, oh yes, deep, resounding joy, to a few members of another family during coffee hour. I remember the concerned look on their faces, their heads nodding, I don’t remember much of anything they said, but I certainly remember how I felt. To be accepted as I was, not really by their words, but by their nods and their faces and their hearts, was like a balm to my soul.
They did me the honor and ministry of letting my story hang between us, but what may have been slightly uncomfortable to them felt so freeing and resonant and powerful to me. I realized that I have tentatively decided to share my story on this blog over and over not always even so that others can understand, let alone feel better, but so that in this swarming world that buzzes and pulses and consumes and compresses my daughter’s life into sound bytes and platitudes and pity, I can simply hear my own voice. I know it sounds selfish to put it that way, but perhaps the battle that parents with kids with disabilities are fighting is not primarily one against disease or difficulties but against the perception that their kids lives don’t matter or that their kids aren’t like other kids or their families aren’t like other families, because they can be summed up in stereotypes that pronounce their differences in cruel, inhuman ways. The isolation isn’t primarily physical but social, one where you find yourself telling a story that should be yours but that either no one else wants to hear, or everyone else wants to narrate, resolve, and redress for you.
But stories always have more complexity, a life of their own, and depth beyond what we can ever imagine. They’re just one more fabulous aspect of what makes us human–that we all have a story to tell.
Thank you for letting me share some of mine. And thank you, most of all, for really hearing it.
Simply put, the welfare of our nation is hardly improved by an assault on the most vulnerable. And if this is the American way, our country will soon be defined not by its dreams and its opportunities, but by its exclusion of those in need.
Yesterday, my daughter and I struggled to get around in a crowded place–I had to get out to push shopping carts out of the handicap parking space (good thing I could even do so) and I struggled to push her wheelchair through a sea of tight twists and turns. Few people moved their chairs, and as we endured looks of disgust, glances of pity, and the fundamental unwelcome of barriers to entry, movement, and accommodation, my eyes filled with tears. As I sat down next to Lucia, I took her face in my hands and kissed her. I whispered in her ear, “They don’t know how special you are, but I do, and I’m so glad.”
You, politicians, cannot take our joy, but you are playing hard and fast with our very lives. As you go to vote this week, may we as the people continue to remind you that your task is actually to protect the weak, guard the sick, provide for the poor, rather than trade them for your own political gain. You are not doing right by my daughter and my family and something much more basic than our joy–her human dignity–is what’s at stake.
What will you do to make this world more inclusive? To give my daughter more opportunities and grant our family more dreams? Or will you continue to deny her the basic healthcare she needs to live her life? Will you not even give her that human dignity?
Take your cue from families like ours. With everything we’ve been through, we never give up on one another. Don’t you dare give up on us.
It was an ordinary, sunny, Saturday morning when I crept downstairs into Lucia’s room to dismiss the night nurse. “It was a beautiful night,” one of Lucia’s nurses, Viktoriya, purred in her thick, Ukrainian accent, flashing a wide smile, gesturing toward Lucia, still sound asleep in her bed.
I smiled, too, and sighed in relief.
Lucia hadn’t been having “beautiful nights” as of late: for almost a year now, she’d been screaming and crying out in pain in the wee hours of the morning and as she was just waking up. The crying was so extreme that the nurses and even we, her parents, couldn’t comfort her. Finally, we’d figured out that she was experiencing muscle spasms and cramps because especially in her sleep, she can’t move purposefully, so a low dose of Valium had recently been providing some relief.
But with Viktoriya (who mind you was a doctor in Ukraine), Lucia often had “beautiful nights,” nights that Viktoriya never took credit for, but rather rejoiced in innocently, as one would a gift. And yet, we knew there was something special about Viktoriya, about the meticulousness of the care she gave, the extra knowledge she possessed about the medications Lucia was on and their interactions, even the way she played with Lucia, offering her therapy when she’d wake up early in the mornings.
As we neared the front door and we talked about the pulse oxygen machine–the pediatrician had asked to get the alarm rates to make sure Medicaid would approve its rental for the coming year–Viktoriya detailed with precision the attention she paid to Lucia’s heart rate. “You see, when her heart rate starts to climb, I can see she’s getting uncomfortable, so I do not wait for her to cry,” she said, “I turn her.” And she motioned. “I turn her from side to side all night and she never wake up,” she said cheerfully. “She sleep perfectly just like that.”
Even as I write these lines, I am in awe.
In awe of the devotion and care my daughter receives as not only she, but my husband and I all sleep through the night, all the while a nurse keeping watch, anticipating and aiding Lucia to find safety and comfort and rest. It’s just no small thing that in a world where life is so difficult for Lucia, where at night she faces seizures and breathing and pain, a nurse not only keeps watch for the big things, but guards her sleep, attentive to her every desire, a desire even to move.
As Viktoriya left that morning, I scribbled a post on Facebook, letting my little world know what she’d done and been doing for us, and why Medicaid has been such a boon, a comfort, a watchman for our Lucia and for our lives.
I did this before I knew Medicaid was about to come under threat yet again. I did this before I knew I’d begin losing sleep again not because of Lucia’s medical conditions but because of the care that may not be there in years, months, or weeks.
How I feel about Medicaid is how I feel about Viktoryia and so many of the nurses who have come into our lives–they are a gift. We can’t possibly pay for the healthcare that Lucia would need to live and that in itself is frightening and humbling. Yet the state and the federal government give us the support we need to live our lives as a thriving, joyful family, not just of 3, but of 9.
That’s about how many nurses, plus two parents, it currently takes to provide Lucia the round-the-clock care she needs to make it through the day. Or maybe it’s more like 16–that’s the addition of the five specialists that Lucia sees on a regular basis, her medical care that Medicaid, too, helps support. Or maybe it’s more like 20–that’s her therapists and her teacher at school, a special needs school where Medicaid helps supply equipment, her Medicaid-supplied nurse makes it possible to attend, and Lucia gets great education and therapy.
I could go on. I know the numbers are much higher still–it’s you, millions of people who pay taxes and the government, that help support families like ours, that make it possible for Viktoriya to play watchman at night so Lucia doesn’t seize uncontrollably, so she doesn’t wake up crying in pain, and so her parents don’t have to hold vigil night after night as they struggle to work and to care for her. It turns out, I’m not just in awe of Viktoriya, but the abundance we have received through Medicaid, which is in no small part thanks to all of you.
Whether it was the clergy in full vestments, arms linked facing down gun-wielding white supremacists or the torch-bearers chanting anti-semitic threats, it is abundantly clear that theology is not neutral in 21st century America. And yet, in the wake of Charlottesville, many Christians have responded with opaque calls to unity and appeals to people of faith to “tear down the racial and cultural barriers that divide us.”
At first I thought such statements offended me merely as a cultural anthropologist.
You see, while it is powerful and poignant to condemn discrimination and racism, it seems a problematically ethnocentric, if not a positively white-privileged perspective to blatantly condemn “the racial and cultural barriers that divide us.”
Whose culture, whose race is dividing us? Perhaps it seems like mere semantics, but when Christians posit that culture and race are problems that breed division, that they are the very evils that need to be stamped out, we reveal that our calls to unity run dangerously close to the rhetoric of those who rallied in Charlottesville last weekend (even if that was not the intent).
Even though race is a social construct, we do see color and it has socially and politically relevant power and effects that especially white Americans must grapple with rather than ignore. The creative cultures that have emerged from communities of struggle and resistance among people of color in America are not barriers that divide us but rich resources to teach us about what America can and should become.
Not only do we have to choose our words carefully from an anthropological point of view, but we have to do so because the ministry and the integrity of Jesus Christ is at stake here. Countless Christians have boldly quoted Galatians 3:28 in the face of racial division: “There is neither Jew nor Gentile, slave nor free, nor is there male or female, for you are all one in Jesus Christ.” But Paul uses this passage to argue that all are liberated from the law and therefore, we do not need to become like one another to be in Christ and receive the gifts of the Holy Spirit; rather, in Christ, we can live as one with those who are radically different from us.
Indeed, we often forget that Jesus came into a culturally pluralistic world and honored the cultural practices in communities and peoples who were different from him, while preaching a gospel that sought to unify. There are certainly passages in the Bible that also justify slavery, genocide, and division, but when we look at the whole of God’s ministry arose history and in Jesus Christ and the Holy Spirit, I believe we do see that redemptive reconciliation does not damn culture, difference, and the sacredness of varied human lives, but the ways in which we human beings often instrumentalize these differences as division.
There’s nothing theologically unsound about unity, but unity that obliterates, objectifies, and undermines difference falls short of the vision God has for the fullness of humanity in Jesus Christ. Unity that maintains inequitable power structures is false and faithless. And unity that fails to listen and value the struggles of people of color in America is not only anthropologically unsound but theologically dismissive.
Of course, there’s so much more to read and do. But at the very least, let’s check ourselves from parading around platitudes about unity at the expense of diversity, especially in the name of Christ. Christians have got to stand for more than that. We owe it to one another and especially to Jesus.
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!
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!
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.