Tag Archives: special needs parenting

Thanks-giving

I can’t tell you how often these days my husband and I are brimming with joy as parents.

Every time our daughter smiles and giggles and babbles her sweet sounds, life–nearly four years of it together now–just doesn’t get any better.  Indeed, when I look at photos like this, Lucia’s face pink and scarred from laying her cheeks in stomach acid night after night when she couldn’t tolerate her feed, I think just how far we’ve come.

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…and smiling through it all!

But a lot of things have also stayed the same.

Lucia still needs a tube to feed during the day and overnight, she’s still prone to seizures, she’s having trouble breathing, and she’s scheduled for major surgery in 2018.  Our family equilibrium isn’t typical, and it doesn’t come from a respite from medical complications, technological procedures, or nursing interventions.  Rather, it is those very things and an incredibly spirited three-year old that often makes life so much fuller, grander, and more beautiful than we ever could have imagined.  Ever since we got private duty nursing through Medicaid when Lucia was about a year and half old, not only her cheeks, but her lungs, her digestion, her joints, her nutrition, and her mood have all shown such growth.

In this season of thanks, we have so much to be thankful for.  

And yet, I’d be lying if I told you that 2017 wasn’t anything but an incredibly trying year.  In the midst of all of Lucia’s persistent health challenges, we’ve also faced major threats to her healthcare and provisions for people with disabilities all year long.  Living life with this constant threat hurts more than the uncertainty we face with Lucia, because it’s complete manufactured and manmade.

And  I can’t help but thinking about how the spirit of this Senate tax bill seems so out of sorts with this week’s cherished American tradition.  They call it Thanksgiving, because it was one of the Pilgrims’ first corporate acts of giving thanks for the good harvest.  And while the stories we tell our children about the miraculous sharing of a feast between the white colonialists and the Indians may not be entirely accurate, they reflect an idealized notion that thanks must be freely given and cannot be readily given unless there is peace, justice, and provision.

So this week, the prospect of giving thanks when so many are facing the looming possibility of losing their healthcare, people who are poor and hungry will suffer because of the bill, and people with disabilities will lose benefits and supports because of it, seems downright trite and inhumane.  I wonder if when we go to celebrate this week, we might practice yet another storied, American tradition–that of patriotic protest, dissent, and advocacy and urge those we love and those around our tables to give as we give thanks.

You give to my family every time you make a phone call to your senator and tell them that people with disabilities shouldn’t suffer so that this country can save money.  You give to my family when you pay your taxes and portions of those taxes go to programs like Medicaid that support nursing care, medical coverage, and medical equipment for kids like Lucia who are deemed too costly by private providers.  And you give to families, especially those who find themselves in need this season, when you make clear that we cannot celebrate tax cuts when the poor get poorer and the hungry go hungrier.

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Miss Lucia laughing in her stander.

If this truly is not just the season of giving thanks but also of giving, then let us gather together to make not just my cup, but every cup of every parent in this country overflow with gladness.  None of our journeys are typical, but that’s what makes this country so great.  Let’s not let a few hard-hearted people in Washington make it otherwise, especially on Thanksgiving.

And from the bottom of my heart, for all your phone calls, prayers, and support,

thank you.

 

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Why healthcare is about human dignity

It’s a new bill (this Graham-Cassidy repeal bill), but the same, old story.

Curb healthcare to the poorest, the sickest, the oldest, the neediest, the youngest, and the disabled to cut costs.  But without healthcare, without Medicaid,  not only will costs soar, most importantly, real people will suffer.  I think of my own family–without private duty nursing provided by Medicaid, especially those overnights–we’ll surely be in the emergency room with our medically fragile child far more often.  If Medicaid is removed and we’re forced to rely on our private insurance, even if we run through our savings, we’ll still seek healthcare for our daughter, and we’ll continue to struggle to care for her at home (which is why Medicaid exists), because that’s what families do.

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.”

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More happy whispers between Lucia and her dad.

As I wrote about recently, no matter how hard they try, no politician nor party nor hospital nor inhospitality can ever take away our family’s joy.  But as I look around the already trying, precarious nature of Lucia’s fragile life, I sure wonder why they try so hard–why they target families for whom society is already so unkind, for whom another year of life is hardly certain, families who know all too well pain and fear and heartache and who now face even more fear and uncertainty–financial, medical, and even physical.

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.

Why we need to learn to see differently

It’s the stunning yet simple basis of all anthropological knowledge, really–this truism that we’re not all the same, we’re different.

Take my daughter, for instance.  Whereas most people get up out of bed every morning and walk, she giggles or cries until we come get her.  Whereas most kids her age start to brush their own teeth, put their own backpack on, eat breakfast through their mouth and head to school, we do the brushing, Lucia’s backpack hangs on her wheelchair, and she eats her meals through a feeding tube that’s attached to her stomach (she eats a lot of her food through the same tube overnight, which is actually pretty efficient!).

But even anthropologists who believe in the wisdom of learning from others are only human.  Because we, like everyone, only have one primary perspective, one pair of eyes and ears through which we experience the world, we still tend to succumb to ethnocentrism–the belief that not only are people who aren’t like us weird and different, they’re less than.

Lucia gets that a lot.

People presume that because she rides through life in a wheelchair or because she gets her feeds through a tube and perhaps most especially because her brain is different that all this comparatively limited functionality that she has amounts to a pretty pitiful and dull, if not brutal life.  They ask me if she will ever do certain things like walk or talk or eat, if she will “be like that” forever, and when I tell them she likely won’t walk or talk or eat in typical ways, they frown and shake their head or grimace.

But what if I told you that some of the very things that make you skeptical about her quality of life, like that wheelchair or that feeding tube, are the things that bring her mobility, joy, and comfort?  Lucia eats through a feeding tube because her body can’t process food orally without it heading into her lungs, which caused numerous scary and painful bouts of pneumonia until we got that tube.  Lucia rides in a wheelchair because that enables her to feel the wind in her hair, to head outside and to school, when otherwise she might be in the house all day.

What if I told you that a lot of the limits placed on Lucia don’t come from her differences but from the way we perceive her differences and from the supports and benefits that we deny her especially because she’s different from us?  When I invite my students to view the world anthropologically, through the lens of others, especially people with disabilities, it kind of blows their minds.  The fact that we able-bodied people are part of the problem for people with disabilities never really occurred to them.  It never occurred to them that subtly viewing someone else as less than and placing limits on their lives, compelling them to be someone they’re not, live in a society that’s only made for the able-bodied, and then wonder why they’re not thriving is discrimination, not liberation.  

This ethnocentric way of viewing people with disabilities as less than is called ableism and it’s not just endemic in American society and everyday interactions across differences, it’s front and center in this debate on healthcare.  Maybe you didn’t see it, because your ableism kept you from the truth, but denying life-giving services to people who are different on the basis of their differences–i.e. cutting Medicaid for people for who literally need it to live their daily lives–yeah, that’s discrimination.  Or reserving healthcare only for those whose bodies are “normal,” who don’t have preexisting conditions, or denying hospital services to those who are inevitably going to have to use the hospital because they’re made different and they’re living in a world that’s downright inhospitable to their differences–that’s textbook ableism.

But we all saw Donald Trump begin his campaign by mocking a reporter with disabilities.  We have all seen headlines that compare that same President who mocked someone with disabilities to people with mental illness.  We’ve heard about people with disabilities staging protests in the offices of Senators and being dragged out of their wheelchairs by security on Capitol Hill.

Open your eyes.

It’s not people with disabilities who need to make more concessions to the society that already demeans their existence, down to their very lives and whether they’re worth living–it’s you and me.  We all need to change our way of seeing our fellow human beings, our fellow Americans, as pitiful and less than and deficient.  What is deficient are our healthcare proposals that purport to deny people coverage based on innate differences.  What is deficient is our rhetoric that excludes and codifies people who we don’t want to accept or don’t understand.  What is deficient is a country that seeks to find its greatness at the expense of its very citizens.

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Lucia a home wearing a cap during her portable seizure study this past week.  My photo.

Please don’t shake your head or frown or grimace at my daughter’s quality of life.  Instead, please pick up the phone and call your Senator and shake your fist at them for failing to grant the necessary supports that make her different life possible.  Become an unlikely advocate and listen to the concerns of those who are different from you not just because they’re different but because we’re all human.

After all, the root of anthropology is anthropos, human being.  Providing good healthcare comes down to the recognition that we are all human beings but that we’ve constructed an able-bodied world that’s only fit for some.

So don’t cut my daughter’s Medicaid because she’s different.  Affirm the value of her life by keeping it.  Let’s keep the ACA and its supports for all kinds of people.  Let’s keep healthcare that’s working for people like you and me and people like my daughter.

 

Virtual Coffee Date

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.

 

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If this isn’t joy, I don’t know what is!? Lucia with her father.  My photo.

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!

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Some links for you:

 

Why I’m Worried: An Inhospitable Present for People with Disabilities

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?

When we spoke over the phone a few days later she explained that she had to check that box for Lucia to qualify for the highest level of nursing care.  She explained to me that while many years ago kids like Lucia couldn’t be cared for in their homes, today modern technology, skilled in-home nursing care, and the Managed Long Term Special Services (MLTSS) Medicaid program in New Jersey were trying to do just that–support families with children with special needs to allow them to care for their children at home.

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.

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Lucia wakes up from a recent surgery in the hospital.  All photos mine.

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.

Fortunately you know there is so much more to the story.  Lucia is thriving today thanks to New Jersey Medicaid, loving family and friends, her own irrepressible spirit, great doctors at Children’s Hospital of Philadelphia, and God.

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Lucia on the porch with her mom and her aunt.

And yet, I’m more riddled with worry than I’ve ever been.  I’m more confused and angry and scared because everyday I know I’m waking up in a world where her life is not instinctively and supremely valued–rather her ways of life, costly though they may be, fall definitively at the bottom of a decisively immoral federal budget that sees fit to do without them.  As an intellectual and a person of faith, I really try to overcome these worries with logic and prayer, but they remain apparent, diffuse in the backdrop of our otherwise grace-soaked lives, hopefully dormant but palpably there.

This is my new present and it makes me sick.

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?

Please call your members of Congress today to urge them to oppose Medicaid cuts in the President’s budget and call your Senators to urge them to vote against the AHCA and the proposed cuts for Medicaid.  Let them know that more than 80% of Medicaid’s budget goes to children with disabilities, poor children and the elderly; only 15% of Medicaid funding goes to healthcare for able-bodied adults.  You can find other great talking points to make your phone call here.

Why I’m grateful my child was born different

“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?

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Image Credit.

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.

The day after legislation that devalues the life of people like my daughter, people who are poor, people who are sick, people who are women, people who are victims of rape, and people who are old passed through the House, I still have the audacity to dream differently.  And I have my daughter to thank for that.  I don’t want to live in a world that she is not in, because I would not know the fullness of what God has given and imagined for human beings.

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.

And God knows, I’m still so very grateful that my child was born different.

*If you want to learn more, read this piece on “5 Things to Watch as GOP Health Bill Moves to the Senate,” and if you want to act on behalf of families like ours and kids like mine, call your Senator and tell them our story!

What I don’t take for granted

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.”

You’ve seen me write about it on this blog countless times–the life so grand that we couldn’t have possibly imagined, a life for which we are never sorry but so deeply grateful. Our daughter, Lucia, who was born with a terminal, genetic disease of the brain, is the greatest gift we’ve ever been given.

But we don’t take that gift for granted.

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.

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Lucia smiling on the porch after a great day at school.  My photo.

But we can’t take that for granted.

A proposal passed by two House committees last week looks to slowly trim over $880 million dollars from Obama’s Medicaid expansion and also cap annual federal payments to state Medicaid programs.  I realize that my daughter is on the traditional Medicaid program and not the expansion under the NJ MLTSS, but here’s what I also know to be true as a parent in state with incredible benefits.  First, those benefits are rare–most states have long waiting lists for such special programming (if they even have it) and so those who benefit may not even be those most in need.  Many of these families are covered, however, under the Medicaid expansion.  Furthermore, only 50% of the funding for the MLTSS program comes from the state of NJ, the other 50% comes from the federal government.  That means cuts would certainly affect NJ’s ability to provide the programs it has in the past.  And finally, in striving to be an advocate for my child, I’m also not taking for granted what’s been given only to us.  ALL children should have the rights to attend free public school that meets their needs, receive services that they need to not only live but thrive, and we are not doing enough in this country for the least of these–and trust me, that’s who’s on Medicaid–kids, people with disabilities, seniors, and people struggling with addiction.

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.  

Please call your representatives and your senators today and tell them you want to protect both the Medicaid expansion and traditional Medicaid for all families who find themselves in need.   For so many families whose lives are already marked by hospitalizations and seizures and circumstances of life and death, let’s not make them marred and complicated and undermined and burdened by insurmountable insurance bills, poor or little access to healthcare, schools that may or may not accept their children, and policies that do not value the lives of their children with special needs.  Tell them it pains you to live in a world where we can’t take for granted that those most in need won’t go without.  Tell them how thankful you are for programs like Medicaid and all that they do.  As Heather Kirn Lanier said so eloquently, “my kid’s doing awesome, and it’s not just because of me.”  

It truly takes a village to raise any child.  Will you be part of our village?  It’s a motley crew for sure, but boy, is it full of unexpected, underserved gifts.

 

 

How I know my daughter will be (more than) okay on her first day of school

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.

My fear wasn’t even that she wouldn’t be loved.  How grateful I am that I’ve never really feared that given what an amazing community of individuals God has placed in Lucia’s life who so dearly value her and endeavor to love her just the way God made her.

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.

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Lucia enjoying her balloons on her birthday.

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.

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Celebrating Lucia’s third birthday this February.

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.

Thanks again.

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.

 

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Photo credit.

“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.

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Protesting at the Trenton Women’s March.  My photo.

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.

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Amy Gabriel of marches in South Jersey.  Photo by Dave Hernandez (Burlington County Times).

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.  

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Our happy smiles on Saturday.  My photo.

Love is love and God is love and that’s why, despite our best (and flawed) human efforts, we’re never really alone.

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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!