Tag Archives: New Jersey

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.

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Why I’ve learned to see gifts where others see limitations

The tenure track job.

It came up again today in conversation and I heard myself explaining away Lucia as somewhat of a limitation, a barrier to my acceptance of a prestigious position at a faraway university, and the words stung on my lips.  I didn’t like the way they sounded, not because of what they necessarily made Lucia out to be, but as to what they failed to communicate about my life with her. We may not be in China or Europe or even the Midwest anytime soon given that moving, let alone traveling with Lucia is daunting, but I’m starting to see that parameters aren’t always limitations, but often, good and wonderful gifts.

When I focus on the things I can’t or no longer do as Lucia’s mother, I neglect the way in which our tax payment to the state of New Jersey took on new, holy meaning this year, as we’ve become so gracious for the services our daughter receives from the state everyday.  Even the fact that we are seemingly grounded here because of Lucia’s state services misconstrues the amazing provision that we just happened to have a special needs child in one of the states with the greatest benefits for such kids.  Lucia wasn’t accidentally born into such a blessing, but wonderfully, purposefully so.

And then there’s the incredible academic rebirth I’ve had as a result of learning to love Lucia.  Whereas I was already studying foster children with disabilities in China, my experience with Lucia pushed me to develop and teach a new course on “Disability and Difference” at Princeton, to write on my personal experiences, and to begin to combine my scholarly and personal pursuits.  My journey alongside Lucia to reconceptualize diversity, justice, and faith through the lens of disability has been revelatory, and I am so grateful for her guidance.

There’s a really mixed bag here because I often suffer with Lucia, and I also struggle to comfort her, understand her, and help her.  I feel firmly that Lucia’s daily struggles shouldn’t be eclipsed by my own growth or edification.  But several years after God acquainted me with foster families raising children with disabilities in China who made us want to become parents, then God granted us our one-in-a-million Lucia.  I seek to embrace what God has shown me as God teaches me so profoundly that my daughter is fearfully and wonderfully made.

Another thing that I see is God melding these seemingly separate lives–that of the scholar, the pastor, and the parent–in far more intentional ways than I ever could.  In other words, we have partially stayed in New Jersey because of Lucia’s special needs, but I’ve also stumbled upon an opportunity to minister and teach and care for my child here that is life-giving and good.  The gift of living life alongside Lucia has taught me that life is not always as it seems, because there is blessing in what God builds amidst difficulty, sacrifice, and challenges.

In a recent blog post, a friend of mine wrote about how much his son with special needs has taught him not just about life but about the Bible and about God.  The truth is so much of Lucia’s giftedness is in revealing to me my own limitations, in enlightening me in what God is already doing, and in inspiring me to be a better follower, servant, and mother.  Lucia shows me the fullness of life, not in her limitations, but in our mutual, challenging, deep relationship, and I am deeply grateful.  Lucia continues to push me to fulfill my purpose in God and for others.

I might have said then, that Lucia is hardly a limitation–rather she is a gift.

She is a person that has made my life so much more meaningful than it could have been otherwise.  From one vantage point, her life has placed certain constraints on my own, but I believe she has also grounded me to see and experience the gifts and the goodness of God anew.  She has pushed me to reevaluate that tenure track job, not because I can’t have it or she doesn’t want me to have it, but because it doesn’t necessarily represent promise, privilege, or prestige that really matters.  She pushes me to live a life that matters, a life worthy of the calling I have received: she makes me whole in a way I could never have conceived.

And so I say, thank you God, for this good and perfect gift.

Lucia and Daddy
Lucia staring into her Daddy’s eyes during a recent hospital stay.  My photo.

 

Dirt

As I headed out to the canal path yesterday afternoon for my first run since the baby, I was dismayed to find that between winter and spring in New Jersey (and many other parts of the world) comes another less beloved season: the season of mud.

It seemed no sooner had the ground thawed that the bulldozers came to clear the path, pressing the treads of their tires deep into the fresh earth and leaving behind nothing but brown as far as the eye could see.

But as I plugged along, bemoaning the stark landscape and the thick frosting of mud quickly coating my tennis shoes, I caught a whiff of something fresh, crisp, and almost sweet.  And as the smell of fresh, earthy mud wafted through my nostrils, I was reminded that beneath that brown soil lay roots, soon to be buds, soon to be new life.

I was reminded that we can’t have the new life without the dirt and the worms and the mud.

We often want to skip over the hard parts in life.  In our spiritual lives, we want to be rid of the dark nights of the soul, the calls to accountability, the wandering in the desert.  But it’s no accident that Easter falls at the end of the season of mud, which we call Lent, a season caked with sins that can’t be wiped clean unless we unveil them in the light of day.

The other morning in the wee hours while I nursed my baby, I listened to a sermon by our pastor on Jesus washing the disciples’ feet.  In it, she asks, what is the dirt that sticks to us when the day is done?  (11:00), and who are the people who we would let interact with our dirt? (14:12)  

In other words, while Lent is in many ways a personal and solitary journey of coming to grips with our own sin and the sacrifice Jesus made for us on the cross, it’s also a corporate season of sharing our joys, our fears, and our darkness, and of washing the dirt from one another’s feet, just as Christ first washed the feet of his disciples.

Botanical gardens in Massachusetts.  My photo.
Botanical gardens in Massachusetts. My photo.

So as spring draws near and as we walk through this holy season of Lent together, I encourage you not to eschew the muddy bits of your life, but to let God and others behold that dirt, from which will spring new, eternal life.  I encourage you to let Christ lift your muddy feet into his clean hands, and to anticipate the miracle of the cross to come.

Amen.

Counter-cultural living

In 2007, I began a seminary field education placement that would lead to a part-time ministry during my Ph.D. coursework with a pair of multicultural congregations in North Jersey.  One is a biracial congregation whose integrated demographics had survived the Newark Race Riots and welcomed a few African and Caribbean immigrants in recent years.  The local community, however, had been in transition, and the church’s numbers dwindled as more and more Spanish-speaking immigrants poured into the area.

The other congregation meets in the sprawling building’s chapel and boasts members from nearly twenty Latin American countries.  Forty-eight years ago they were established as a mission of the presbytery and they worship in their native Spanish, enduring the challenges of leaving families behind in unstable, impoverished, and war-torn countries, and navigating new immigration processes, jobs, schools, and life in a new country.

Iglesia Presbiteriana Nuevas Fronteras, 2011.
Iglesia Presbiteriana Nuevas Fronteras, 2011.

This past Sunday, members from both congregations gathered in the stately, hundred year-old sanctuary to celebrate something new: the Spanish-speaking congregation became a chartered and organized church of the Presbyterian Church (USA).  We worshipped for three hours in Spanish and English, led by the youthful chorus of the praise band and the words of former interns, church members, local pastors, and even the moderator of the PCUSA.

For Evan and I, despite our Caucasian backgrounds and our recent two years in China, it felt distinctly, like coming home.

This was the place where my own call to ministry had been nurtured by these generous people who allowed me to pray for their struggles that I could often hardly fathom, who welcomed me into their homes, and who dismissed the jumbled Spanish of a gringa woman in their midst.  I hadn’t realized until I looked around that multi-colored room this past Sunday what a powerful a witness these two little congregations in North Jersey had made.

I’d been the fourth in a long line of seminary interns, but the first who wasn’t from a Latino, Carribbean, or African American background, and yet, they’d hardly made me aware of that difference.  They’d welcomed me when they had every reason to look at the color of my skin and hear my accent and find ample reason to keep their fellowship insulated from the America which often doesn’t show them anything like hospitality, equality, or dignity.  They’d taught me when they had every reason to be suspicious of my willingness to learn or my ability to leave the privilege that had gotten me to halls of higher education and power at the door of that little chapel.  They’d ministered to me when they had precious little, the English-speaking church few members and resources, the Spanish-speaking church little funds or time to spare given their busy lives caring for children and working several jobs.

Some of the former interns of Nuevas Fronteras and UPC.
Some of the former interns of Nuevas Fronteras and UPC.

But as we celebrated on Sunday, as ministers struggled to characterize the length of their struggle as forty-eight years in the wilderness, as waiting on the timing of God, the members of the congregation who got up to speak subtly, yet confidently proclaimed the truth that despite the importance of what was happening that day, they had always been a church.  They didn’t need (and hear I sound like a bit of a Presbyterian heretic but I’m willing to take that risk) the approval of their denomination, a piece of paper, or a service full of pomp and circumstance to allow them to minister, because they’d been doing it, for those in the community, those in the church, and people like me, for forty-eight years.

Their ministry reminds me that when we take what little we have and we put it into God’s hands, far greater things than we could possibly imagine come to pass.  The trouble is, we’re usually so hesitant to trust, so hell-bent on recognition for our service, and so afraid to believe.  It’s counter-cultural to take everything that you have, especially when you don’t have much, and faithfully thrust it into Jesus’s hands, it’s counter-cultural to minister without much recognition to communities in need, and it’s counter-cultural to admit those to your fellowship who don’t look much like you and in fact, represent a lot of the power structures that give you hell on an everyday basis.

Over the years this Spanish-speaking mission, now chartered church, has trained sixteen interns and raised up twelve candidates for pastoral ministry in the PCUSA.  Those are stats that congregations with three times their size and three times their history only dream of.  But somehow along the way this little church has understood that miracles don’t happen by our own muscle, but by God’s grace, and that faithfulness is not for the in between times, but faithfulness is what life is all about.

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They have always been a church.  They have always been ministering.  Thank you, Iglesia Presbiteriana Nuevas Fronteras, and United Presbyterian Church, for always ministering to me.

Comfort foods

Well, I’ve been stricken with the sniffles here in NJ.

I’m pretty certain it’s just allergies, but those of you who have allergies know that there’s no such thing as just allergies.  I keep wondering where this special kind of torture came from (ragweed? pollen?) and thinking rather indignantly, China never did this to me!

The special kind of gorgeous on the D&R Canal, Princeton, NJ that may just be responsible for these allergies. Photo by Evan Schneider.

Of course, it’s funny the ways in which China has rubbed off on me.  For instance, I’m fairly convinced these sniffles are caused by the weather, and a dramatic change in pressure, and I stood around for at least a half an hour last night in order to avoid going out in the rain, in which I was convinced I’d catch a cold!

Yes, China has either made me into your grandmother, your mother, or…Chinese!

But as I dragged by tired self home last night (in a cab with a new Chinese friend I’d met on the side of the road, no less!), and I thought of what to cook up that would make right these snuffles and sniffles, I realized that my comfort foods are still decidedly American.

Last night I sauteed up some onions, garlic, spinach, mushrooms, and zucchini with olive oil and soy sauce, which I added to a steaming bowl of chicken ramen soup.  I also like the accoutrement with a bowl of rice, but last night I needed the chicken soup!

Vegetables and rice.

And if you read this blog with any regularity, you won’t be surprised that I made peanut butter and banana oatmeal for breakfast this morning.  We’ve been trying almond milk in our coffee, so I boiled the oatmeal with the almond milk this time and it worked nicely.

My love affair with peanut butter and banana oatmeal that began in China…

That’s something China doesn’t have–almond milk…or allergies.

What are your favorite comfort foods?