Tag Archives: advocacy

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?

construction-of-baby-heads
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.

16938869_10154934027926153_6350866115862414107_n
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.

 

 

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.

 

handsholdingredcrane
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.

16195699_10154830334266153_1506768195962813851_n
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.

5883cc3471ada-image
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.  

16195168_10154831031231153_2425409272932371911_n
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.

—–

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!