Category Archives: weekends

Why healthcare is about human dignity

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

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

Simply put, the welfare of our nation is hardly improved by an assault on the most vulnerable.  And if this is the American way, our country will soon be defined not by its dreams and its opportunities, but by its exclusion of those in need.

Yesterday, my daughter and I struggled to get around in a crowded place–I had to get out to push shopping carts out of the handicap parking space (good thing I could even do so) and I struggled to push her wheelchair through a sea of tight twists and turns.  Few people moved their chairs, and as we endured looks of disgust, glances of pity, and the fundamental unwelcome of barriers to entry, movement, and accommodation, my eyes filled with tears.  As I sat down next to Lucia, I took her face in my hands and kissed her. I whispered in her ear, “They don’t know how special you are, but I do, and I’m so glad.”

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More happy whispers between Lucia and her dad.

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

You, politicians, cannot take our joy, but you are playing hard and fast with our very lives.  As you go to vote this week, may we as the people continue to remind you that your task is actually to protect the weak, guard the sick, provide for the poor, rather than trade them for your own political gain. You are not doing right by my daughter and my family and something much more basic than our joy–her human dignity–is what’s at stake.

What will you do to make this world more inclusive?  To give my daughter more opportunities and grant our family more dreams?  Or will you continue to deny her the basic healthcare she needs to live her life?  Will you not even give her that human dignity?

Take your cue from families like ours.  With everything we’ve been through, we never give up on one another.  Don’t you dare give up on us.

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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.

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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.

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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 Christian calls for unity in the wake of Charlottesville may be both racist and theologically unsound

Whether it was the clergy in full vestments, arms linked facing down gun-wielding white supremacists or the torch-bearers chanting anti-semitic threats, it is abundantly clear that theology is not neutral in 21st century America.  And yet, in the wake of Charlottesville, many Christians have responded with opaque calls to unity and appeals to people of faith to “tear down the racial and cultural barriers that divide us.”

At first I thought such statements offended me merely as a cultural anthropologist.

You see, while it is powerful and poignant to condemn discrimination and racism, it seems a problematically ethnocentric, if not a positively white-privileged perspective to blatantly condemn “the racial and cultural barriers that divide us.”

Whose culture, whose race is dividing us?  Perhaps it seems like mere semantics, but when Christians posit that culture and race are problems that breed division, that they are the very evils that need to be stamped out, we reveal that our calls to unity run dangerously close to the rhetoric of those who rallied in Charlottesville last weekend (even if that was not the intent).

Even though race is a social construct, we do see color and it has socially and politically relevant power and effects that especially white Americans must grapple with rather than ignore.  The creative cultures that have emerged from communities of struggle and resistance among people of color in America are not barriers that divide us but rich resources to teach us about what America can and should become.

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Not only do we have to choose our words carefully from an anthropological point of view, but we have to do so because the ministry and the integrity of Jesus Christ is at stake here.  Countless Christians have boldly quoted Galatians 3:28 in the face of racial division: “There is neither Jew nor Gentile, slave nor free, nor is there male or female, for you are all one in Jesus Christ.”  But Paul uses this passage to argue that all are liberated from the law and therefore, we do not need to become like one another to be in Christ and receive the gifts of the Holy Spirit; rather, in Christ, we can live as one with those who are radically different from us.

Indeed, we often forget that Jesus came into a culturally pluralistic world and honored the cultural practices in communities and peoples who were different from him, while preaching a gospel that sought to unify.  There are certainly passages in the Bible that also justify slavery, genocide, and division, but when we look at the whole of God’s ministry arose history and in Jesus Christ and the Holy Spirit, I believe we do see that redemptive reconciliation does not damn culture, difference, and the sacredness of varied human lives, but the ways in which we human beings often instrumentalize these differences as division.

There’s nothing theologically unsound about unity, but unity that obliterates, objectifies, and undermines difference falls short of the vision God has for the fullness of humanity in Jesus Christ.  Unity that maintains inequitable power structures is false and faithless.  And unity that fails to listen and value the struggles of people of color in America is not only anthropologically unsound but theologically dismissive.

If you’re a Christian, especially a white Christian like me, seeking healing, reconciliation, and unity, I recommend you read the PCUSA’s statement on “Facing Racism,” adopted in 1999 by the General Assembly as a policy document to guide the pursuit of racial justice.  Or read this exegetical lecture on Acts, where Princeton Seminary Professor Eric Baretto powerfully describes how differences are gifts from God.  You might check out my post on “Embracing Difference as a Spiritual Discipline” and consider the challenge in a theology where we recognize and affirm that although we belong to God, God does not belong to us.  And check out Christina Cleveland’s “Syllabus for White People to Educate Themselves.”

Of course, there’s so much more to read and do.  But at the very least, let’s check ourselves from parading around platitudes about unity at the expense of diversity, especially in the name of Christ.  Christians have got to stand for more than that.  We owe it to one another and especially to Jesus.

 

Virtual Coffee Date

If we were sitting together this morning having coffee I would tell you that life has lent its typical roller coaster as of late (seizure for Lucia- she’s doing great now, though; running over a deer carcass with my car for me-it still smells; no bus for Lucia’s first day back to summer school on Monday- a friend came to the rescue; nurse pulled out Lucia’s tube on Thursday morning-ugh; and we lost power on Thursday night during the storm-got it back early Friday morning)… and yet, as you see, with God’s help, we’re finding adventure in adversity and somehow holding it together!

Summer has been so full of unexpected joys–luxurious and productive staycation for us in June, thrilling aquatherapy sessions for Lucia covered by insurance and rides to and fro covered by Medicaid–even as it’s packed with challenges, too–I sent my book manuscript off to the editor in early June, have been teaching summer school at Princeton since July, and start a new job at the seminary in the fall.  All this while the healthcare wars rage on Capitol Hill and we worry as Lucia’s care seems to hang in the balance.

If I seem distracted, unable to focus even in the midst of a sentence, it’s because I am.

But I’m trying to trust that (with the exception of maybe the healthcare battle, deer carcass, and tube being pulled out) there’s a real abundance, blessing, and excess in the way my cup is brimming over, inviting me to embrace this season in its chaotic fullness and to testify to what God’s doing with a life and a heart fittingly overflowing with joy.

 

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

So that’s what I’m trying to do (more on how that later), not living a life in response to what others are doing but a life that responds to what God is clearly doing, in a big way in my life, my family’s life, and in this world.

Still, if we were talking this morning, I’d look you in the eye and thank you but urge you to keep making those phone calls on behalf of people who are on Medicaid, who need assurance that health care will be there, not just for the healthy but for the sick, the poor, and the needy.  I’ve put some links below that I’ve found helpful and important in wading through the excess of information out there.  I did a podcast on Medicaid that I hope you’ll share with family and friends who want to understand its benefits and even as I still feel that families with people with disabilities face such an uphill battle in terms of understanding and coverage, I am thankful for all the support and hopeful that concerned citizens are making their voices heard.

I was reading Margaret Mead for one of my seminary courses yesterday: I sat there for like two full hours just reading and devouring–it was incredible, and this quote of hers that has been on my mind for weeks sprung to my attention.  I leave it with you in hopes that you may believe that we can change the world, that God is with us even when we forget it, and that joy is abundant and ample and just as human as fear and defeat!

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Some links for you:

 

Why I Love Being an 8 on the Enneagram

For those of  you who know me well, you know I’ve spent the last year reading almost everything I can get my hands on about the Enneagram and I’ve become somewhat of an evangelist for the personality tool among my friends and family.

Ironically my first foray into the Enneagram was not so entrancing–when I had to do a routine psych evaluation for ministry preparation, the instructor rather used my found type against me, arguing that perhaps it explained my aggression, hostility, and even atypical masculine characteristics!  Among people who know the Enneagram well, it’s not a secret that female 8s get a bad rap and are often misunderstood.  So that’s why it’s all the more profound that a few days ago, I think I finally realized what’s so powerful and meaningful about being an 8 in this world–a personality I haven’t always found so compelling or easy to live with.

Now if you’re new to the Enneagram, it may sound like I’m speaking another language.  But simply put the Enneagram is a personality system that groups our personalities into 9 types, but unlike Myers-Briggs or other personality systems, you’re not easily diagnosed through a test, because it’s a dynamic, interactive, relational system.  According to the Enneagram, the best parts of you are also the worst parts of you, so people don’t always find it “easy” or “happy” to find out their types, but thankfully, the system also allows for and encourages dynamic growth.

For my own part, and especially as an anthropologist, I think the Enneagram’s best, most basic reminder is that even if we’re from the same family, we don’t necessarily see the world the same way.  But other ways of seeing aren’t bad; in fact, they’re what make the world a much more interesting and beautiful place!  One of the best takeaways for me from learning the Enneagram is not just understanding myself better but also building more compassion inside myself for others in respecting and empathizing with the beautiful, perplexing ways they approach life that make the world a much more complicated, but fuller place.  Essentially the Enneagram affirms one of the basic tenets of anthropology: our differences make us human!

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Love this visual of the different Enneagram types and their values.

Therefore, if you’re interested in learning more about the Enneagram and even figuring out your type,  I’d recommend that you read about all the types, and perhaps in lieu of taking a test, read some of these great descriptions of each type, paying attention to the core values, the things that make you tick (you can scroll down for my suggestions for further resources below).  Enneagram types are complex in that they don’t tell you what a person’s vocation will be or whether they will be successful, but rather tell you more about that person’s motivation in life and some of the challenges they face and gifts that they possess.

But as I mentioned, when a lot of people find out their Enneagram type, they recognize it primarily because of the flaws they can see so clearly in themselves, while they fail to acknowledge or hone the strengths that inhabit their way of seeing the world.  As an 8 (with a  7 wing), “the challenger,” someone who is a natural born leader, makes decisions incredibly quickly, and is fearless, I had been really struggling with an experience of vocational discernment as of late.  In fact, because of these impetuous and quick-witted qualities, I kept remarking to my “spiritual director” that I suck at discernment: the waiting game, the listening game, the methodical weighing of options is just not me.  And as someone who is much more inclined to rely on my mind rather than my heart, I bemoaned my lack of intuition.

However, this type of thinking ignores some of the qualities which make 8s truly exceptional.  Because of my gusto, I am truly and uniquely fearless.  This certainly becomes a weakness in that I may struggle to emphasize and understand the insecurities others often face on a daily basis, but in my own life, when I see a challenge, I am invigorated, affirmed, and inspired.  Sign me up, I think. I’m all about taking risks, I scoff.  Bring it on! 

Thus, in my life when I have been able to reframe uncertainty and discernment as a challenge, I’ve been able to very quickly embrace the adventure that God has in store for me, not worrying about the consequences or the trials of that risk but plowing full steam ahead.  (As I told one of my friends recently, I may be a battering ram, but I can be a battering ram for Jesus!)  What I’ve noticed in discernment and uncertainty, though, is that I have a tendency, as many of us do, to try to usurp control (how very 8 of me) from God.  I spin into full-on planner mode, determined to think through the details of my future, when the very best that God has for me may not even be visible yet.

My spiritual director has invited me to ponder God’s faithfulness by asking me, “Think of the five greatest things in your life.  Which ones were you responsible for?  Now which ones did God provide?”  Indeed, as a person of faith, in spite of any Enneagram personality knowledge, I am committed to living the life that God has for me.  And I’ve realized that this involves abdicating my long-term planning role to God.  Ironically, uncertainty and long-term planning are two things that in my penchant to control, send me spiraling out of control, leading away from my strengths and gifts as a passionate 8 who leads with vision and conviction.

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My twin sister and I taking in the views of the dragon’s neck rice terraces in Guangxi.                Photo by Evan Schneider.

I’m not alone in these insights, though.  There are many, many people of faith who have begun to draw upon the Enneagram for wisdom not just about who we are, but who we are in God.  For me, I’ve started to see how unique it is that I love a good challenge and that I’m not afraid, and I’ve become even more convicted to strive toward the unique vocation (somewhere between anthropology and ministry) that God has for me, even though the world may not always understand that call.  8s are often known for being resilient and strong, and I realize now that this takes “guts.”  Even though I may lack for what I termed intuition, I am at my best when I’m relying on and hungering after God, throwing all of myself into that new challenge and adventure!

How has the Enneagram helped you live more fully into your purpose in God?  What lessons have you learned about God and faith by getting to know yourself better?

If you’d like to learn more about the Enneagram, I’d recommend listening to the Liturgists extensive podcast on all nine types,  reading a bit about each type and then taking the “Essential Enneagram” test by David Daniels and Virginia Price, which is really just a series of paragraphs that you read seeing which one best describes you.  I think this is the best way to discern your type, but the most important things are to 1) gain an appreciation for all types and 2) to take your time in discerning your type.

I also really like the Podcast, The Road Back to You, based on the book by Suzanne Stabile and Ian Morgan Cron, because it gives you an opportunity to listen to other people talking about their journeys in understanding themselves, others, and God through their types.

 

 

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.

 

 

It was always good.

A few months ago my husband said something to somebody about relishing the times when Lucia was a little baby (even though she was screaming all the time), because they were lovely and quaint and we’ll never get them back.

I remember so vividly how I just looked at him like he was an alien when he said that, because I couldn’t have felt more differently.

But I think I finally know what he meant.

I’m not sure, but I think there might be some great misnomer out there that life with children with special needs is abominably hard and painful all the time rather than also delightful and sweet and radiant and good.

Like one might assume that being in the hospital all the time sucks, and it really, really does, but then again, it also creates these long stints where we get this built-in family time and we really talk to each other and love and care for each other.  Our memories might be punctuated by hospital stays, but they’re also punctuated by moments we got to know our kid better and our love for her became fiercer.

Or what about the moments in between the screaming Lucia did as a newborn when she collapsed into our chests or fell asleep with her head in our hands?  Or how even though feeding her seemed to be practically killing her, walks in the fresh air were a balm to her soul?

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Baby Lucia and I on one of those early, perfect walks in the woods.  My photo.

I think what my husband realized even more than me is that the hard months that came very quickly after Lucia’s birth, the challenging diagnosis, and all the hospital stays can’t, don’t, and won’t crowd out the truth or mar the delight we have in her and the fondness with which we always think on her and the family she has made us.

There can be, and there is in life, so much that is distinctly and perfectly good even when it’s hard and rotten and difficult.

This year when I looked back to my very first post of 2016, when I started sharing Lucia’s journey and ours alongside hers, I was struck by the words I used to describe it all:

“My husband and I have become parents to a precious child with profound special needs.  It has changed and will change our life forever.  And it is good.”

It is good.  It has always been good.  

There was the truth right there, writ all over my announcement to the world of who Lucia is and how our life has been and will be with her.  Do I often wish that we could heal her wounds swiftly and eliminate her pain?  Of course!  Do I pain to see her struggle to do simple things and sometimes just survive?  Why yes.  Do we all not know what to make of some of these challenges and decisions sometimes?  Precisely.

But does God, in all of his infinite wisdom find her so perfect and so good that there’s not a question in my mind that we are distinctly and deeply blessed?  Definitely.

“It was good,” God said when God made all of creation.  And he meant it.  Though life may be flawed and time may bring wounds and pain and hardship, all goodness is transcendent, true, and from God.

And I am deeply thankful to see and know Lucia in all her goodness, one day at a time.

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Some 2017 smiles.  My photo.  Happy New Year!

 

 

Quiet in Advent

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This clever sketch with its caption, “A nativity scene without Jews, Arabs, Africans, or refugees,” has been circulating on social media.

This season I’ve been intentionally quiet, quiet mostly in the mornings but also quiet on the blog.  This Advent, I’ve tapped back into my practice of Lectio and Centering Prayer.  I’ve been reading the prophetic scriptures from Isaiah and the journey to Bethlehem in Luke as the Syrian city of Aleppo crumbles, lives are lost, and great fear reigns throughout our world.

I haven’t known how to respond to all the darkness, have you?  

I should speak out, I think, say something like Isaiah, the prophet, reminding us how to follow a God who is not of this world, a king who is not violent, but gentle and humble and an outsider.

Is silence surrender in the face of such great evil, especially in a season that proclaims resounding joy, reconciliation, and peace?

I strive to work for justice in fits and spurts, donating, signing petitions, calling my congresspeople, but in the mean time, in a faraway land from where our savior was born, I hope that my silence meets God’s faithfulness.  You see, what I have always found so powerful about centering prayer is that I’m not doing anything–and that’s the point.  Because if prayer is just one more thing that we do, let alone one more thing that I presume to muster of my own wisdom and accord, then it is anything but a holy offering or a right relationship to God.

And so as we wonder how to respond, I wonder, whether as always, if it isn’t less about us and more about God–God’s saving action in the world?  I am patient in this season to listen but not to listen without responsibility.  I listen and trust and charge God with all God is always doing to offering healing, respite, and reprieve.  And I wait for God to give me the words, the actions, and the steps to be an instrument of peace this Advent season.

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My little setup at the new home.  My photo.

If you’re interested, there are over 30 posts in the category “Centering Prayer” on the blog.

Here are also a few posts from past Advent reflections and practices:

This Advent, Share Joy.

Advent and Breaking In

Advent: Reorienting Expectations

Thinking on Advent

Mary’s Song: Advent Expectations

God can take it

God, making weakness holy for over 2014 years

Finally, I’d be interested in hearing from any of you who are struggling in waiting this season.  It strikes me that waiting and silence feel particularly cheap in a season where this so much violence and need.  What is God teaching you?  Where is God leading you?

 

Thanksgiving (in an election season)

A couple days ago I talked with a friend who has a daughter who faces similar special needs as Lucia.  It was refreshing to speak with someone who has such a kindred attitude toward celebrating his daughter’s life, despite the challenges and the hardships.

However, as we drove home from the hospital after a successful surgery with Lucia yesterday, I reflected that in so many ways this attitude of understanding our children’s lives as cause for celebration rather than burden is bolstered by the support systems we share.  My husband and I are so thankful to live in a state that invests in Lucia’s care, to have insurance, that despite its shortcomings, generally covers all that she needs, and to have friends and family that love Lucia unconditionally, pray for her, and care for us!

It is difficult to imagine how we might view Lucia’s disability if with every medical intervention we had to also sweat the finances or insurance coverage or if we had to worry that someone caring for her didn’t have the proper resources or training.  These are the very important supports that often go unstated in the words I write about Lucia, and this morning, I am thankful for them.  I am also deeply prayerful that families who don’t have such support will find it in gracious lawmakers, caring social workers, more humane insurance policies, and more state programing for kids and families with special needs.

The pending election in this country may seem positively incongruous with this month in which we aim to practice gratitude by naming our blessings when so many, like the ones above, go unacknowledged.  But this morning, I began to wonder what it might look like to practice a spirit of gratitude despite the strife and division in this country and the world.

How would our attitudes toward one another shift if we were to focus our attention on all that we in America have to be grateful for, what we are grateful for in the candidates we support, or what we are grateful for when it comes to the provisions of our country and state (rather than only so very critical of)?  Thanksgiving invites us to pause and offer God the praise that God is due, and as we can see, this in and of itself, in an election season can be very powerful and countercultural!  Could such thanksgiving invite us to more civility and less hate?  Could it remind us of our common human needs, desires, and goodness?  Could it point us back to God when our human ways are frail and flawed?

I realize, perhaps more personally than many this election season, how dire and in jeopardy such supports for people with disabilities are, and I do not discount these challenges, but I wonder if gratitude is still an appropriate way to reflect on the hardships in the midst of the blessings.  After all, God has taught me so much about how to experience blessings despite the challenges as we’ve gotten know Lucia!

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Photo credit.

So this morning, I am thankful for…

The amazing nursing care provided through Medicaid in the state of New Jersey, for my daughter, Lucia, and the opportunity for her to attend a school come February that will meet her special needs.

All those working to welcome refugees to the abundance this land and its people can provide.

A country free from war and where so many live free from poverty, hunger, and despair.

A presidential candidate who has made disability rights a platform in her campaign.

Students at a historically black college who protested a KKK speaker in their auditorium and people protesting a pipeline that will disrupt Native American lands.  Thankful for those who lift their voices, use their bodies, and engage in brave, peaceful protest for those in need in this country.

A democratic country with peaceful elections, robust debate, and freedom of speech.

All those who love Lucia so well, celebrating rather than mourning or pitying her life.

What are you thankful for this morning?  What countercultural words do you have this election season?  Feel free to link up with this post and write your own #thanksgivingforelectionseason.