What I learned in 2017

Looking back, 2017 on the blog will be remembered as the year I broke my silence, the year my writing became resistance.  Only a year prior, I’d begun sharing Lucia’s story, but this year, that personal side of politics became something that as a mother, a pastor, and a professor who studies disability, I just couldn’t remain quiet about.

Speaking at an event at Princeton University.  Photo by Evan Schneider.

But as much as there is to share about what I’ve learned this year, there’s thanks in order to you, dear readers, for hanging in with me throughout all the feelings and frustrations and for your own listening ears, your caring, and your advocacy.  Whether you’re a new reader, or you’ve been around for awhile, thank you for sharing our family’s struggle.  I certainly hope you’ll let me know which posts continue to resonate with you, what you like best and what you like least about the blog, what you’ve learned in 2017 and what you’re looking forward to in 2018.

Love these two.  My photo.

Here is a look back in hopes that these lessons learned from the year prior will carry us forward in making this world more just, more healthy, more good, and more compassionate:

1.  Resistance is not just about marching and advocating, but writing, educating, and bridging the divides between us.

2.  It’s easy to underestimate people with disabilities, even for parents; thank God the joy God has given Lucia defies all odds! (And she is still loving school!)

3.  Unfortunately, people with disabilities cannot take healthcare for granted, but thank goodness for your advocacy this year!

4.  I’ve loved using the Enneagram as a tool to understand myself and those around me better.

5.  I’m so grateful for the differences God has made in all of us.

6.  “My Baby Wasn’t Born Healthy and Her Life Still Matters.”

7.  We must to learn to see differently.

8.  Christian calls for unity must not undermine difference.

9.  I fight because we are a Medicaid family and healthcare is about human dignity.

10.  There’s nothing like a little silence.

11.  And I will not give up in 2018!

(And a look back at What I Learned in 2016 if you’re so inclined…)

 

 

 

 

 

 

 

 

 

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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.

…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 think 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.

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.

 

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.”

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.

A Medicaid Story

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.

Cuddles with my girl.

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.

But today, I am also weary.  Weary of the proposed cuts to Medicaid in this newest bill in the Senate, and weary of the plan to make savings from cutting people from healthcare who need it most.

Please join me in bombarding Congress with stories of gratefulness about children like Lucia and the gift of Medicaid by calling your Senators over the next few days.  Please share our story and Viktoriya’s story.  Please tell them that Medicaid is about people and long nights and “beautiful nights” and families like ours.  Please tell them what Medicaid has done for us.  And please tell them how thankful and in awe we are of the people who have provided for our daughter.

Psalm 130

¹ Out of the depths I cry to you, O Lord. 
²   Lord, hear my voice!
Let your ears be attentive
   to the voice of my supplications! 

³ If you, O Lord, should mark iniquities,
   Lord, who could stand? 
⁴ But there is forgiveness with you,
   so that you may be revered. 

⁵ I wait for the Lord, my soul waits,
   and in his word I hope; 
⁶ my soul waits for the Lord
   more than those who watch for the morning,
   more than those who watch for the morning. 

⁷ O Israel, hope in the Lord!
   For with the Lord there is steadfast love,
   and with him is great power to redeem. 
⁸ It is he who will redeem Israel
   from all its iniquities.

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.

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.

 

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!

Some links for you:

• Medicaid Facts that Matter
• A video from the Atlantic about why Medicaid is so critical to helping people with disabilities lead independent lives
• My podcast interview on Medicaid and raising a child with disabilities
• Be encouraged: The Healthcare Resistance is Working!
• And the latest is that they’re planning to vote on one of these bills on Tuesday; let’s be ready with our phone calls to demand better for people with disabilities and others in need!

 

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.

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.