Category Archives: health

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.

 

 

Breaking the silence: why I’m asking you to be an advocate for children like mine

I’ve noticed that when I write posts about our life with Lucia and I tell you about our family’s journey in getting to know, understand, and love our child with disabilities, we are met with such love, encouragement, and support.  These posts have been such a deep point of connection for me with all of you because they show me how much you value children like Lucia, who have special needs.  They encourage me that you see value in difference and that you understand some of our challenges, delight, and struggle, and this is no small thing.

But I’ve noticed something else, too.  

I’ve noticed that when I post a video to my Facebook page showing Donald Trump mocking a reporter with a disability or an article that explains some of the challenges people with disabilities face if Medicaid or Obamacare are to be cut, or even an article that questions the President Elect’s secretary of education nominee’s understanding and value for the federal government’s protection of the civil rights of people with disabilities, there is no such outpouring of love and support, no litany of encouraging comments or outcries for justice.  Save for a few courteous likes, in fact, you are mostly silent.

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Photo credit.

So with sincere confusion and heartache and much trepidation, I want to ask, friends, why the silence when it comes to these issues of justice and provision and daily life for people with disabilities?  Is it because we remain deeply divided in this country and that divide extends to the question of how best to care for, empower, and support people with disabilities?  I guess I understand that.  We are divided in this country about so many things.

But I want to tell you something–the main reason I began writing Lucia’s story this past year is because I realized that it was so worthy of being shared and that she has so much to teach us.  But somewhere along the way, I also realized that when I write about my daughter with special needs on this blog, I do so in an ardent effort to bridge that very divide between us.  In fact, I write Lucia’s story (sometimes gingerly and ambivalently) precisely because she doesn’t and she may never have the words to tell it herself.  I write Lucia’s story because so many people with disabilities don’t have the hands and feet or the energy to call or march or lobby or fight for their own rights.  Of course many of them do, and that is why we have federal legislation like the Americans with Disabilities Act (ADA) and the Individuals with Disabilities Education Act (IDEA) because so many people with disabilities worked so hard to ensure that such persons are not denied basic rights to citizenship, employment, and education, but the ADA came along only in the 1990s and the IDEA is still imperfect and under threat even today.

There is so much to be done.

We live in New Jersey because when it comes to children with special (medical) needs, the NJ state program is one of the best around.  But we lucked into that with Lucia being born here rather than in say, Indiana or Texas.  And we can’t move out of this state because so few states offer the comprehensive skilled nursing care and Medicaid-sponsored secondary insurance that Lucia’s needs require, and these are the services that allow our child to get the care she needs so both my husband and I can work.  In so many other states where benefits are scant, one parent must stay home, and even when they receive benefits, it is these parents’ hard work that actually saves the state and the federal government hundreds of thousands of dollars a year because it’s way cheaper for parents to care for their kids in their homes than for governments to institutionalize them.

But these are all best case scenarios–yes, that scenario in which you must quit your job but you get some benefits and you get paid minimum wage to care for your medically fragile child in your home, or our scenario where you have such great benefits but you’re literally trapped in the state, you can’t consider other jobs outside your state or a home closer to family because those states don’t have coverage–those are the best case scenarios.  The worst cases are states that have so substantially cut their Early Intervention or Medicaid programs that families can’t afford these very expensive services that their kids need to grow, or worse, survive.  The worst case scenarios are ones where children still sit idle in classrooms with no appropriate or adaptive equipment because states don’t have the necessary funding or won’t put it toward the challenges of kids with special needs.  The worst case scenario is a country that becomes so divided that we fail to care for these kids and their families at both the federal and state level, a country wherein we’ve forgotten their rights and thus denied their humanity.

So when you hear politicians threatening to cut Medicaid and deny federal laws that protect children with special needs rights to education, will you remember our family and other families like ours and resolve to stand with us and not be silent?  Will you realize and acknowledge that so many families who care for people with disabilities are currently scraping by with so little (nobody gets rich off of disability), and cuts to federal and state programming make it hard for their parents to work, hard for their kids to go to good schools, and hard for such children to get good medical care, supportive seating that helps them go places, and braces to walk, run, and stand?  (There is still no comprehensive mandate across this country to enable these families to live sustainable lives–we’ve left that to the states and so many families are living the worst case scenarios everyday.)

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Lucia smiling with her father.  My photo.

These are the things I’ve perhaps neglected to tell as a part of Lucia’s story, because they’re personal and painful and arduous and inglorious but not any less true.  But if I can’t humble myself to speak these truths, and if this part of being different goes unknown in this country, then I’ve become complicit in this silence as well.

So thank you from the bottom of my heart for loving our family, for supporting all of us, and for sharing our story.  But most all, thank you for being part of a less raucous but no less valid and valiant movement in this country to seek understanding across our differences.  Thank you for considering this challenge to advocacy–the charge to love us by lifting your voice on behalf of my family and others and to seek the best for all people, especially people with special needs.  When you think about it, beyond Donald Trump’s mockery and Hillary Clinton’s platform, people with disabilities were again surprisingly absent from all this political jarring and sparring and posturing: where was the outcry against police violence toward people with disabilities (#criplivesmatter), or the righteous indignation over the exclusion of disabled people’s rights from the progressive Women’s March platform?

Let’s change this country, friends.  They’re going after kids like mine, and it’s not right.  

Let’s break the silence.  One phone call, one story, many voices, together.

P.s. If you’d like to get started today,

  • Please call your Senator and oppose the appointment of Betsy DeVos for Secretary of Education and Jeff Sessions for Attorney General.  You can read here and here why we don’t trust them when it comes to protecting our children with disabilities.
  • Sign up for news and alerts to fight for disability rights.
  • Talk to a family you know about their struggles and advocate on their behalf.
  • Carry a sign at one of the marches this weekend that makes it clear that you value and support the rights of people with disabilities–let’s make these marches truly progressive and inclusive!

 

 

 

Virtual tea date

If we were hanging out this morning, I’d be sipping on my favorite casablanca mint tea.  When I’m under the weather as I am currently am, I can’t stand the thought of my beloved coffee; I finally understand what’s so comforting about tea-drinking, and yet, I confess that’s why I always feel like a bit of an invalid when I’m drinking it!

It’s been a whirlwind of a week, packed with teaching for me and unpacking for my husband, but having his family in town broke up the projects and made the follies more tolerable, I think!

One little joy of having his family in town is watching our nieces, especially our youngest, play junior nurse with Lucia.  I’ve noticed that when Lucia screeches and writhes for some unknowable reason and all our lips get a little tight and our hearts a bit anxious, Hannah stands by quite contentedly.  I appreciate that many children, including her, seem to know how to stand by when there are tears and pain and carrying on, perhaps placing a comforting hand or offering a kind sigh, but not trying to rush us others through their feelings.  What a lesson, I think, to be comfortable and at ease with one another’s distress, to be able to witness and hold but not press and prod, maybe offering the best consolation by just being human beings together.

That Hannah is a gem.

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Our evening bliss.  Photo by Evan Schneider.

I’ve begun to allow myself to look forward to all the things we will do in this house, like baking scones in the kitchen, hosting our first overnight guests in just a week, and enjoying more beautiful evenings on the patio.

I’m also hoping there’s enough room left in August for me to get my book off to publishers, put the finishing touches on a few articles, and maybe conjure a few more writing projects!  I’ve been trying to be better about setting and keeping writing goals, and I’ve been inspired by the progress of my students–it pushes me to be a better professor!

We are so thankful that Lucia continues to thrive in her new environment.  There is much to be figured out and much to pray for–she has equipment cliic on Tuesday, her IFSP next week, and we’ll be looking into what to do for school for her, but again, we’re so blessed to be in a state that creates possibilities for our child with special needs.  It reminds me that this anchor that we’ve put down here may yield some limitations, but it’s also what helps us keep our bearings and keep in view that many blessings we have.

…oh, and the Olympics!  I’m so excited!!!

What are you up to this weekend?

 

 

 

 

Weekend Links

It’s been a fabulous weekend celebrating my husband’s 35th birthday and enjoying the company of lots of friends and the lovely spring weather in NJ.  In addition to a photo from one of those lovely walks with the babe, here are some great stories and posts around the internet for your enjoyment this weekend:

“The Five Lessons of Good Friday,” a great article to ponder during Eastertide: I love the nuanced points about suffering and the proclamation that suffering does not have the last word!  For my own reflections on how to live in light of Easter, see last year’s post, “Holy everything.”

On the subject of men, women, and the workplace, “The Confidence Gap,” was a lengthy, but good read about what may be holding women back.

“Saving Minds Along with Souls,” the latest installment from Anthropologist of Religion, Tanya Luhrmann, provides a great challenge to the church to love, include, and care for the mentally ill.  For other posts on Luhrmann’s work, see  “What it means to be a child of God” and “God behind the scenes.”

“China On Track to Become the World’s Largest Christian Country by 2025, Experts Say,” …and in my non-expert opinion, it may be even sooner.  For more posts on Christianity in China on this blog, see “Chinese churches” and “Church Renewal from Below.”

FInally, another gem to ponder this week from Zen Habits, “The Reality of This Moment.”

What if we lived in this moment rather than the fantasy of our worries and fears about the future? 

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Have a wonderful weekend! 

An invitation to breathe deeper

Apparently Huffington Post has dubbed 2014 the “year of mindful living,” and TIME magazine alleges there’s a “mindful revolution” in the wings.**

There’s been all sorts of talk about the value of the creative pause, the importance of sacred space (I swear I’ve linked to this article before, but it’s still great), and the benefits of meditation.  

And, predictably, especially given the title of this blog and its content, I couldn’t agree more! 

The snowy Princeton campus.  Photo by Serena Stein.
The snowy Princeton campus. Photo by Serena Stein.

But I have to admit that I don’t always practice what I preach.  

While I’ve been wildly productive when it comes to the dissertation and ticking things off the baby-prep list, I’ve been flittering away downtime with a host of media distractions.

This isn’t the end of the world, of course.  Social media can be wonderfully connective, and much-needed breaks from the rigor of our working lives with tv, youtube, etc. are understandable.  But when I think about what I really want to get out of life, I realize how much I don’t want to distract myself from what God’s doing.  Rather than check out, I want to check in.  And rather than emptying my mind, I want to be filled with the mind of God.

Through the distractions, I hear God’s invitation to breathe a little deeper.  And this morning as my dear friend and I sat basking in the word of God, simply breathing together, we felt anew how good it is to simply be in the presence of God.  I don’t love the phrase, “carving out space for God,” because I think it’s misleading to suggest that we’re the ones who should be doing the carving.

And yet, I think there’s something to be said for embracing the silence that God grants.  There’s something to be said for choosing not to be distracted.  And there’s certainly something truthful about remembering that the invitation to the spiritual life is just that, an invitation, which we can either accept, despite all its inconveniences, challenges, and grace, or decline for the meagerness of our own devices.

Pretty Princeton in the glow of snow.  Photo by Serena Stein.
Pretty Princeton in the glow of snow. Photo by Serena Stein.

How can you embrace the silence, the invitation from God in your life to breathe a little deeper today, tomorrow, and this year?

**Check out The Huffington Post’s critique of the TIME article here.

Feeling our way to God

This is a post I wrote for our church newsletter to give our community some direction and comfort while grieving.  I hope that in whatever circumstance you find yourself this morning it may offer a reflection and a respite from your troubles.

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All photos by Evan Schneider, taken at Merrill Creek Reservoir, NJ.

Have you ever noticed the psalms and the psalmist are a veritable jumble of human emotions?  When I first began personally reading through the Bible, I was vexed by the range of seemingly “unchristian” feelings in the psalms—despair, sorrow, rage, and vengeance—juxtaposed with the more expected and accepted—praise, wonder, and jubilation.  I didn’t understand how laments, cries of anger and defeat, even one’s heaping of curses upon one’s enemy, could be included in a Bible we hold to be the word of God, and wholly Holy.

But over the years, I’ve come to find great comfort in the fact that nearly 70% of the psalms begin with lament, that the Bible is full of unseemly, broken characters who are vindictive, fearful, and impulsive, and that the psalms are not made obsolete by the death of Jesus, but all the more powerful, prophetic, and complete.  For instance, I once heard a sermon about the fateful words that Jesus cries from the cross, lamenting, “My God, my God, why have you forsaken me?” (Matthew 27: 45-46).  If Jesus is God, how could he, of all people, lose faith? we might ask.  If God forsake Jesus, surely God may forsake us, we might fear.

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However, in that sermon, the pastor drew attention to the fact that when Jesus spoke these words, he was actually quoting Psalm 22, a psalm that like so many, begins in lament and despair and then winds its way to praise and adoration.  While the psalmist complains that God does not answer (verse 2), and he is but a worm, despised by others (v. 6), he also recalls that it was God who took him from his mother’s womb and kept him safe on his mother’s breast (v. 9).  The psalmist remarks that dogs surround him (16), and much as Jesus experienced, “for my clothing they cast lots” (18).  Yet, throughout the psalm, he cries out to God (2; 11; 19), and finally, feeling that God has heard him and rescued him (21), he turns to praise (23).  He asks that the Lord be glorified by all (27), and promises that he will live for God (29).

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By quoting a psalm so meandering and mixed emotionally, Jesus reminds us that to be human is to feel.  To be human is to feel despair, anger, and fear, but the end of Christian life is not death, but resurrection—a sign that God never forsakes us.  It’s comforting to realize that Jesus lamented, and also powerful to see that those cries to God echo a tradition that claims hope found in the midst of suffering, even death.  When you’re weary, I invite you to turn to the psalms and embrace your emotions as the psalmists did, wandering the paths of the heart to faith.  I invite you to ruminate on the fact that your wholly human self may be the best instrument to knowing our Holy God, that no emotions are “unchristian” or alien to our God, and that the God who invites us to lament and question, also promises resurrection and healing.

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Learning contentment

I rejoice in the Lord greatly that now at last you have revived your concern for me; indeed, you were concerned for me, but had no opportunity to show it. Not that I am referring to being in need; for I have learned to be content with whatever I have. I know what it is to have little, and I know what it is to have plenty. In any and all circumstances I have learned the secret of being well-fed and of going hungry, of having plenty and of being in need. I can do all things through him who strengthens me. –Philippians 4:10-13

For a variety of reasons, my morning runs on the canal path have been a bit slower as of late.

The D & R Canal in Princeton at the height of summer.  Photo by Evan Schneider.
The D & R Canal in Princeton at the height of summer. Photo by Evan Schneider.

That’s not like me.

My type of running is usually a 3-4 mile sprint in which I push myself to the ultimate limit for thirty minutes, cramming in a brisk workout in an equally jam-packed day.  I’ve never been good at pacing myself out there on the trail, and when I’m out of shape and trying to get back to the grind, I have to remind myself over and over not to push, lest I get injured or expend the limited energy that I have.

I don’t think it’s a bad thing for us to push ourselves in life, but jogging this new rhythm, I’ve started noticing things I never saw at the breakneck pace– a hornet’s nest precariously dangling from a slight branch, a plush feather falling to the path, birds, turtles, snakes, and the ever-so-slight glimpses of fall in the reddening of the trees’ leaves.

I’ve started learning something like contentment in all circumstances.

Things are far from perfect, and yet God seems to be opening my eyes to the wisdom and gift of a slower pace, the grace that peeks out when we’re willing to take it in, and the goodness that is God beneath the ups and downs of this world.  Underneath contentment lies acceptance, and under acceptance, a deep, firm layer of mutual trust between God and me that seems to know no end.  It’s like firmament or insulation from this rough and tumble world, this world that pushes, that runs along at breakneck pace…

The first glimpses of fall.  Photo by Evan Schneider.
The first glimpses of fall. Photo by Evan Schneider.

But I’m discovering that we don’t have to.

We are meant to notice, we are meant to praise.  We are meant to live in God’s grace and lift up God’s glorious name in all circumstances.  Paul writes above that he has learned “the secret…of having plenty and of being in need,” and that secret is confidence, faith, and trust in God.  And I think when it’s at it’s best, it’s mutual.  As I trust God more with my life, with everything in it, I feel God trusting me to minister to others, to follow my call, and to speak words of wisdom in times of trial.

I’m discovering the depth of what it means to be content, to remain steadfast in our hope and faith in God, despite the wavers of this world.  And I’m discovering the overflowing gratitude that comes from it (I think it no coincidence that the verses previous to the ones from Paul in Philippians 4 are the ones that call us to rejoice and to focus on the true, the honorable, the pure, the just, the pleasing, that which is worthy of excellence and praise [Phil. 4:4-8]).

God is so good.

Skyping on the balcony with a friend in China.  My photo.
Skyping on the balcony with a friend in China. My photo.

Contentment is not a trite command to push ourselves to be positive in times of sorrow, but an invitation to notice the grace in this fallen world, and to take heart and trust that God is with us in all circumstances.

How is God teaching you about contentment today?

Greeting the day

Photos from the end of summer on the D&R Canal, Princeton, NJ. By Evan Schneider.

It’s inevitably the case that I can rise and get myself going much better on the first few days of the week, and greet the day, just as the sun is rising and the crispness of the morning provides all the confirmation anyone needed that fall is here.

Photos from the end of summer on the D&R Canal.

As I run along the canal, I chase the fog, always visible out in the distance, yet elusive once I near it.  Still, it lingers over the waters, enchanting, haunting, tempting.

So I keep on, hoping to glimpse the heron take to flight like I did last week, its majestic wings flapping with exquisite rhythm.  Or stumble on the sun’s rays peeking through the towering, thin trees onto the dewy ground across the waters.

And I feel gracious for those moments, when I am alone with my thoughts, but hardly alone with all the birds, the animals of the forest, the life sprouting and fading in my midst.  I feel wild, too– free, and strong, if only for a moment.

And it is good.

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?