Category Archives: theology

How to embrace summer strokes

There is this thing we do, especially over in academia, but also in life, where we presume that complicated, busy, and grandiose is better.

Especially in my professional corner of the world, people often speak in belabored language and write long-winded sentences, and it’s all emperors new clothes until we realize that nobody can actually understand what we’re saying, no matter how profound it may be.

In my personal life, that version of over-complicated also takes the form of swimming upstream, presuming that every moment needs to be set to a purpose, and that things like pause and sabbath, leisurely strolls, or even hearty laughs defy the Protestant ethic in a decidedly unfaithful way.  

But surely that’s not what God intended for us…especially in the summer!

I have to admit that I once looked at offices that recognized summer hours–leaving early on Fridays–as flat out lazy.  Sure, summers are afforded teachers for restoration given the demands of the academic year, but I always felt a little guilty about that, too.  Indeed, for professors, summers are not breaks or vacations, but our best research and writing is supposed to be scrunched into these three hot summer months.

156544_4157654031750_707857148_n
Summer on the D&R canal.  Photo by Evan Schneider.

But I’m starting to see the wisdom in simple, summer strokes, going with the flow, and finding a rhythm in this slower season of life that embraces restoration, intention, and the sacred pause.

When my writing time was cut in half these past few weeks because of nursing vacancies, I initially panicked, but as I let my pen wander between lofty goals of articles and future plans, ordinary blog posts like these, and my book project, somehow my productivity multiplied.  Somehow in the slower strokes of summer, the steady motions of my pen, however pedantic, became productive.

I’ve taken walks these past few weeks just to take walks.  I’ve read books just because they’re fun or because they speak to a deep but unexplored interest.  And I’m still plotting a spur of the moment (is that completely paradoxical?) trip to the beach, just me and Lucia, before the summer ends.

The less I’ve tried to fight this slower pace, the more meaningful it has become.  

And slow spirituality?  Oh yes.  

At church this past Sunday, when I had all the reason to worry about which word needed to be preached to our desperate and hurting world, the kids on our mission trip, coming off their retreat from their own realities and their own summer strokes, were spouting this wisdom about not necessarily getting to see a job completed but doing your part, or loving the person in front of you.  And that was precisely the word that God had prepared.

The second we start to believe that God can’t do anything with ordinary lives is the second we’ve lost faith in the extraordinary God we serve.  But the moment we start to trust in the slow, deep work of God, when we trust in the abundance of God’s divine work in the world, when we go with the flow, if you will, all those seemingly singular actions, persons, and moments start to add up.  We start to see them as not incidental or momentary or fleeting, but the real stuff of life and faith.  What if we treated sabbaths not as the mere moments between what we really matters, but as life-giving rhythms for our ordinary lives?

I know summer can’t last forever, but I’m aching to hold onto its cadence as long as possible.

The benediction this Sunday, reprinted below, came from Paul’s letter to the Romans, paraphrased.  May your “ordinary, sleeping, eating, going-to-work and walking-around-life” slow down just a bit this week to encounter and embrace God’s extraordinary brush strokes upon it:

So here’s what I want you to do as God helps you.  Take your everyday, ordinary life–Your sleeping, eating, going-to-work and walking-around-life–and place it before God as an offering.  Embracing what God does for you is the best thing you can do for God.  Amen.

Lament for a gun-spangled America

On Sunday morning, I preached a sermon on 2 Corinthians 4, in which I struggled to find a modern metaphor for clay jars, Paul’s metaphor for the wild inappropriateness of our weak, fragile broken bodies as vessels for the gospel.  

On Monday, July 4, 2016, America celebrated its independence day.

On Tuesday, two police officers fatally shot Alton B. Sterling in Baton Rouge, Louisiana.

On Wednesday evening, a police officer fatally shot Philando Castile during a traffic stop in Falcon Heights, Minnesota.

Last night, five police officers were killed by snipers during an otherwise peaceful protest held in downtown Dallas.

This morning, practically paralyzed by the events of this week, grief stricken and broken hearted, I wrote this lament to our gun-spangled America.

936ea5a0ff3d9a7cf44685345ded8a6c
Photo Credit.

**********

I woke up this morning, and like so many wondered naively, will things be different?  Will things be different on a morning where birds chirp, where it seems possible to be hopeful, the heavy, oppressive heat yet to descend upon us?

Who are you, this shadowy America, and what have you done with the free and the brave?

How heavy your burden of history and violence and oppression, how heavy the present fear and death you inflict upon black men and black women, America.

How heavy that fear descends upon law enforcement, for even their guns will not free them from this madness!

And it seems we have no choice–to put down our guns is surrender, but to leave them raised is death.  We have all become perpetrators.  We have all become victims.

And so I scoffed bitterly, I want no part in your gun-spangled America, in the weapons you wave that display not freedom or strength but cowardice and fear!

These guns, these guns are illusions, nay, allusions to protect, to intimidate the very fight out of war, yet with each gunshot we’ve slowly come to the realization that America is at war with itself.  That what seems unfathomable because of our modernity, our civilization, has come not in spite but because of it.  We fail to accept our common mortality, our common humanity, and so we wage war upon our brothers and sisters in a paradoxical desire to protect our own.

But we live with death at work within us (2 Cor 4:12), so painfully and palpably now, we are bearers of not only the body of the death of Jesus martyred by the state (2 Cor 4:10), but 566 people killed by the U.S. police in 201653 American officers killed in the line of duty in 2016, and now overall 7088 gun related deaths in the U.S. in 2016.  

Scripture tells us that we carry that death so that the life of Jesus may be made visible in our mortal flesh (2 Cor 4:11), but with death among us and America’s shadows, I worry that the resurrection is only for another world.  We find hope in resurrection because it’s a respite from our self-inflicted madness; our world crowds out light and peace and resurrection–our gun-spangled America–and I want no part in that.

And yet, I must wake to this world, because my own blood-stained hands have helped form it.

I must be one to put down my gun–not just a literal gun–but my very real fears and prejudices and selfishness and insults and division that I had once thought might keep me safe.  I must be one to carry death inside, but to also live with defiance when life itself has been marred.  I must be one to show my face, to preach the kingdom of God in this inconvenient moment and in this wounded nation.  I must be one to cry out for the fragility and the brokenness of our human condition, but also the deep meaning in lives lost, to cleave to something beyond the madness–so that gun-spangled madness won’t be what life in America is all about.

Who are we, shadowy America, and what have we done with the free and the brave?

Who are we, both perpetrators and victims of madness?

Who are we, children of God?

 

 

Speak your truth (the whole truth), America

486166_4450241426252_1341685246_n
Plymouth, MA.  All photos by Evan Schneider.

Last night, after yet another independence day celebration, yet another weekend of flags, festivities, and fireworks, I read a rather apologetic post from one of the new co-moderators of the PUCSA.  In it, she writes that although she doesn’t want to be a “Debbie Downer,” on the fourth of July, she is also painfully aware of the transgressions of our nation, especially with regards to slavery and civil rights, and our present problems like gun violence, torture, pollution, and racism.  She writes that while she will celebrate, she recognizes that others will grieve.

But I say, don’t apologize, Rev. Edmiston, for speaking your truth.  

We need voices of dissent in this country, even as we have those who cry out (and I would remark unapologetically, as well as uncritically) to “make America great again.”  We need  a fuller appreciation of our tattered history to find a more purposeful present.  In our zeal for patriotism, we often forget that our founders, flawed as they were, were hearty dissenters!

484622_4450242826287_739203129_n
Plymouth Rock.  

Why is it that we in America today are so afraid of the dissenters?  Why, despite years of good and bad, do we espouse to have all the answers?  Don’t we know that what makes America great is insight and innovation, change and adaptation, that can only come with critical reflection upon our very mistakes?

My truth this morning is that love is not enough.  We need justice.  We need change.

We need change because it’s not just in Medina and Baghdad and Dhaka and Istanbul but everyday, sometimes twice a day, that gun violence on American soil intervenes to take the lives of young men, mothers, and children.

We need justice because faith has been compromised; justice would choose a fast that breaks the chains of poverty, discrimination, and sexism, chains that we often prefer not to see even in our very history of liberation and our present struggle.

We need truth, because real truth, the ugly, full, challenging, meaningful, both star striped and tattered truth, does and can set us free.  Dissenters are part and parcel of that truth.

What is your truth to speak, America?  How will you go on, despite, in spite, to fight injustice?

74266_4450243906314_1518371871_n
Native American protest at the Massasoit Indian Statue up the hill from Plymouth Rock on Thanksgiving Day, 2012.

In the words of the poet, Langston Hughes,

O, yes,
I say it plain,
America never was America to me,
And yet I swear this oath—
America will be!

Out of the rack and ruin of our gangster death,
The rape and rot of graft, and stealth, and lies,
We, the people, must redeem
The land, the mines, the plants, the rivers.
The mountains and the endless plain—
All, all the stretch of these great green states—
And make America again!

 

Virtual coffee date

If we were having coffee this week, I’d let you in on a few things…

I’d tell you that it’s already been a week packed with doctors visits and hospital tests like usual, but something has shifted.  It shifted when I realized that despite checking “no” to all the tasks listed on Lucia’s 24-month questionnaire, I also got to check “no” to the question, “does anything about your child worry you?”  In the midst of moments where I could have been discouraged, I counted myself so blessed, because of the much needed perspective our daughter with special needs brings to our lives and my faith.

(Here’s another great perspective on children with disabilities I saw this week!)

374218_2482419751940_2107114143_n
Countryside in Yunnan, China. Photo by Evan Schneider.

I’d also let you in on how incredibly thrilling it was to find an email in my inbox this morning entitled, “你好 from China” from a former student who with her broad interests in Native American culture, architecture, and history, I never thought would quite end up there!  She wrote,

“Also Professor Raffety, China is wonderful. Granted there are many moments of ‘ahh, what am I doing’ but those are minimal in comparison to my many moments of ‘ahh, so much goodness.’ My co-workers, new friends, are brimming with patience, generosity and a eagerness to converse and teach me. I’m sure you have experienced many of these same moments. And of course, the food is new, but oh so flavorful.

I hope all is well with you and your family, your faith and teaching.”

I’m tickled not just because she’s having this encounter with China that I once had that was so powerful and earth-shattering and meaningful but because there’s this subtle affirmation of my call that I also read in her generous words–some mutual recognition of something more than just teacher and student, something more like our vocational and spiritual lives intermingling for something greater.  She had me musing this morning, during a season when I’ve been lacking a bit of pedagogical inspiration, “See this is why I can’t not teach!”

And finally, I’d tell you that I really should be writing my sermon instead of this blog post, but that I think it can all pretty much be summed up in these words from Glennon Doyle Melton that speak to the curious balance of conviction and humility that it takes to live the Christian life:

c2df22d0c394931c72934d4805f7b020

What are you up to this week?  Grab a cup of coffee and let me in on it!

Why the Church Needs People with Disabilities

 

science-tv-dr-who-daleks-cartoons-punch-magazine-birkett-1981-08-05-235
This is the cartoon on the front of my students’ syllabus!

Over the past five years or so, this blog has taken a massive shift in trajectory toward exploring the lives, needs, and gifts of people with disabilities, in China, in our local church, and through my own experience with my daughter.  (In fact, I’m realizing how much I need a new tab for disability on here!  Coming soon…)

What I’ve found as I’ve only just begun to embrace this collision of my anthropological, theological, and spiritual life is that our theologies, when it comes to understanding disability, are quite limited.  They’re often not broad enough to consider the gifts of the Spirit people with disabilities possess, because they’re caught up in a rhetoric of healing, medicine, suffering, or overcoming.  Or they’re plagued by an anthropology that makes disability some surface form of neoliberalist inclusion rather than a deep paradigm shift for us all in what diversity and its value really confers.

We human beings are searching for theologies of disability that ring true when it comes to the light, challenge, and wisdom people with disabilities bring to life–theologies that confront our hollow concepts of both diversity and God.  But we need to learn and hone and witness to these theologies through practice rather than mere intellectualism, recognizing the transformative experience of life lived with other and with God.

I’m excited about being part of a recent series on Youth Ministry and Disability organized through The Institute for Youth Ministry at Princeton Theological Seminary because the authors are making the case that the Church needs people with disabilities rather than the another way around!  I think this is a really exciting moment for the theology of disability, and I hope you will read all the posts and leave your comments and continue the conversation.  I’m including mine below, but please do swing by this one from my colleague, Joel Estes, and one of the great theologians of disability, John Swinton, among others!

********

On Being Transformed

“You never know. Maybe she will get up and walk. Maybe she will be able to eat and talk like other kids…maybe someday she will be normal.” 

I have often heard these well-meaning words from friends, colleagues, and church folk about my daughter, Lucia, who was born with a progressive genetic disease of the brain. From the time she was just a couple months old, from her seizures, to her feeding tubes, and onto her diagnosis, our family has been confronted with the idea that Lucia is abnormal. But perhaps especially because she’s our first child and we know no differently, or perhaps because my husband and I have learned so much from her, I bristle at statements that suggest life would be better for us or Lucia if she would conform a bit more to the standards we hold for other kids. As a person of faith, I often wonder what God would have to say about our ideas of normal and how God might use children and youth like Lucia to fight against a culture that (perhaps un-self-consciously) worships ability and regards disability as a problem.

Keep Reading at The Institute for Youth Ministry…

Finding your discomfort

Yesterday as I drove to church I heard the news that a gunman had opened fire in a nightclub in Orlando; it was a beautiful, breezy morning here in New Jersey, and on our way into worship we joked that it was the kind of weather we might find in the Florida Keys.

The sermon this Sunday was on Genesis 12, the call of Abram, and my colleague invited us to see how Abram builds altars along his journey to an unknown land, and to stop and notice what God is doing and what God has done with our lives.  We made a list of the adjectives that come to mind when we think of our own church community, recognizing, as she said, that we were different last year and that we would be different a year from now.

427210_3001879458108_961133086_n
Camels and Cairo on the horizon.  Photo by Evan Schneider.

But I couldn’t help being drawn, as she spoke, to a slightly different message.

As she remarked that Abram was near 75 years old when the Lord asked him to up and move to an unknown land, and that he didn’t know where he was going, I was struck, as I have been so many times before, by how being Christian does not have anything to do with being comfortable.  Flipping back through the pages of Genesis to the flood just a few chapters before or forward to the epic journey in the wilderness in Exodus, we find a God whose challenges far exceed his comforts.

What I find so powerful about this message is that while God is always instructing us to get up, to go, to go do something, or greet someone, or explore something, God does promise to go with us.  God often promises to go before us, but it’s pretty clear from scripture that we can’t experience the grace and the goodness of God just on our couches.

I think this message was so poignant to me, because I have been someone who has traveled to faraway lands many times in my life, and I’ve often associated my purpose or calling in ministry with that type of journey.  But for those of you who have been reading my blog, these past few years since we returned from China certainly smack of a more stationary season, and I’m not sure I realized until yesterday how important it is to find our wilderness even if we’re close to home.  In Abram’s story and the countless other narratives of transformation in the Bible, I see God reminding us that while some journeys take place closer to home, all journeys toward God involve some discomfort, some wilderness, and a lot of disruption.

comfort-zone

So my question to you (and my question to myself) this morning is where is God leading you, disrupting you, pushing you, and prodding you?  Where, like Abram, is your unknown land, the journey that will be long, involving pit stops and altars, and probably fear and regret?  But where will you go, not because you want to and not because it’s fitting, but because God is leading you there, and you want to be transformed?

When I turned on the radio after church, there was special programming from NPR about the shooting confirming that over 50 had died and now this is the worst shooting in our sordid national history.  On social media, my peers cried out for answers, mourned in solidarity, and wondered how things might ever change.  This morning, I’m rather certain that things won’t change swiftly, comfortably, or easily for any of us, but that real change, as it does in the Bible, will require uneasy, disruptive, totalizing transformation, that our country has clearly resisted since my childhood.

I pray desperately that we as people of faith may not just sit on our couches any longer but leap toward our zones of discomfort, following God and not our complacency, seeking disruptive love rather than cheap and easy respite–we can’t wall ourselves off from parts of our country or parts of our history that are dark.  We need to go toward them, scrutinize them, and even embrace them, in order to change.  

These were the words from a prayer in our bulletin this weekend:

 

Turn over the tables in our hearts, minds, and churches, and make room for your grace to dwell.  We pray in the name of the One who disrupts the world with love, Jesus the Christ.

Amen.

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.

 

Forgoing security for faith

253347_10200582342833132_2045833360_n
Inside Notre Dame, Paris. Photo by Evan Schneider.

A few months ago I stood in the sanctuary of our church on Good Friday and held a rock in my hand on which I had scrawled the word, “security.”  In my adult life, I have found it consistently difficult to live amidst uncertainty, but I don’t know what in that particular moment compelled me to pray to let go in that holy season of Lent of my preoccupation with security.

But I did.  And the journey forth from that point has been anything but smooth.

In March I was offered a very good tenure-track job at an elite Christian institution–a dream job on paper–but one I ended up turning down because the social services in the Midwest couldn’t accommodate my daughter with special needs, there’d be no job for my husband there, and I couldn’t imagine leaving behind my church ministry for a full time academic job.  Then in the following months as we began to look for houses in New Jersey, we lost a bid on a particularly promising house.  When our offer was finally accepted on another, the negotiation proved so arduous that the deal looked to be off any second.  Even now as we are poised to close on the house, the date has been so far shifted back due to repairs that we find ourselves with a month and a half gap in housing, with a special needs baby and a slew of nurses in tow!

As it looked less and less likely that we’d settle with the sellers on this house, my usually dogged, meticulous husband became strangely calm.  At first I mistook his stoicism for resignation, fearing him despondent, assuming he’d given up.  Perhaps he had given up in  a way, but as he described his feelings I realized he’d found solace in either outcome–he wasn’t complacent but rather his perspective had been remarkably altered by our circumstances.  He’d given up on the ideal of the house, but in so doing he’d found a certain measure of security.

A week or so later, knowing we had very little money for his birthday presents this year, I looked at him with tears in my eyes and told him that I’d discovered that a house would be lovely, but he and Lucia are my real home.

Facing a few months of being a nomad is relatively moderate when we are seeing some of the greatest refugee crises unfold around the world.  In fact, just a few prior, I preached on the trite act of tidying up amidst such forced evacuations.  But I also have rather wanted to shake God for so dramatically “answering” my prayer these past few months.  What do you want me to learn here, Lord, I find myself puzzling.  Why must it all be such a struggle, I wonder, exasperated.

And then I wonder how I would have arrived at these conclusions, this notion of home, without wandering a bit in the wilderness, and I realize that I, like my husband, am also dogged and obstinate.  Sure, I am deeply intellectual, thought-filled, and intricate, yet, even I could not think myself through these insecurities, but rather had to ultimately feel my way to faith.  In the poverty of my thoughts, my own excruciating inability to provide for myself and my family I have found, perhaps, the greatest provisions–the gifts of family that God has so graciously given.  I have found in God not comfort but a depth of security that though practically confounding is deeply needed.  I am learning, I think, how to struggle less and live a bit more, to hold life’s riches close to and let the rest fall away.  

I am learning, I think, to live by faith.

13173688_10154108360431153_7631922841176347560_n
Lucia on the porch enjoying the sun.  My photo.

What God Did

A few weeks ago I sat in the pews as my colleague and senior pastor led the prayers of the people, and I lifted one for Lucia’s upcoming surgery.  My voice wavering, I asked for prayers not just for the doctors, for health, and for our little girl, but for my husband and for me.  I explained that in facing another surgery that could have mixed results, I’d grown a bit weary and leery, and my faith was faltering.  It’s so hard as a parent to make decisions for your child that involve both risk and reward.  Lucia was doing so well, and I wondered whether another surgery was the most faithful decision.  Could the congregation be my faith, could they lift prayers for us even as we were feeling weak? I wondered aloud.

Mind you, I’m one of the pastors of this church, and I wasn’t sure how prayers for faith from one of the spiritual leaders in their midst would be received.  But not a person came up to me that Sunday scolding me for my weakness, my fears, or my lack of faith.  Instead, I remember lots of assurances that prayers would be lifted, many looks of concern on their faces as I spoke my prayer, and many knowing, earnest nods as I let them know that even for a pastor, sometimes faith is hard to come by.

PTS Snow
Fresh snowfall on the Princeton Seminary campus.  All photos are mine.

Several weeks have passed, and Lucia’s surgery has not only brought her incredible comfort from reflux, but she is now feeding into her stomach (instead of her small intestine), an intervention that seems to bring her the satisfaction of feeling full and the comfort and freedom of having natural breaks from feeding throughout the day.  However, it is hard to describe the extent of the intangible transformation for her and for us: it feels as if there’s a part of her spirit that has been set free, and we are all growing closer, as she’s more alert, communicative, and joyful.

As I reflect on the miraculous results of this surgery and this transformation, I am left with no other explanation than that God did that.  This summer I felt that Lucia’s intestinal feeding tube had provided her unprecedented comfort, happiness, and tranquility, but these past few weeks, a transformed Lucia has smiled up at us, and I am in awe and so deeply grateful.

Snow and blue skies
Blue skies and the grad tower peek through the snowfall.  

But God didn’t just surprise us by transforming Lucia; rather such transformation is apparent in us as parents because of the faithful who love Lucia for who she has been, will be, and who she is.  I’m writing this today because it’s so important to talk about what God has done and what God can do even when we struggle to believe, how God’s faithfulness transcends our wildest imagination.  And I believe that those people in the pews who love Lucia so unconditionally are part and parcel of who I know God to be.  What a gift it is to be part of a community of faith who accept me for my weaknesses, who pray for my child, and who do these things not because they expect results or know what’s in store, but because they desire to trust God–they are the faithful.

And I am so grateful that in faith, we don’t have to go it alone–that God’s transformation happens through people, through prayer, and in us.  I am so grateful that after all these years God is still full of surprises and one of those is that even when you falter, there’s faith enough for the least of these, for the faithless, the weary and the leery.  In a world which doesn’t always recognize Lucia as fearfully and wonderfully made, it’s kind of miraculous that I’m surrounded by people who actually keep reminding me of that.

And the fact that God did all that–well, these days my faith runneth over!  And you can borrow it when you need it someday, I’m deliriously humbled and happy to owe you all a prayer or two.  Perhaps that how faith works: we owe it all to God and to one another, but in being bound to one another, we are set free.

Lucia smiles
One of those sweet smiles that makes the world stop!

 

I’m Not Sorry

As many of you know this semester I had the privilege of teaching a freshman writing seminar on “Difference and Disability,” and I’ve just finished poring over the final assignments this morning.  As many scholars with disability have written poignantly about their own experiences in order to help us understand more about the experience of disability and the relationships between able-bodied and disabled people in society and culture, I charged my students with writing disability narratives as the final assignment of the semester.

However, I didn’t feel I could ask my students to pour their hearts on paper if I didn’t make the effort to do the assignment myself, so I took some time to write my own disability narrative.  I’d love to share all of theirs with you, but in lieu of that right, I’ll share some of my thoughts on mothering a disabled child and coming to terms with an “I’m sorry culture” that often makes me feel really misunderstood.  Although the tone of the essay is a bit provocative, I’ve been grateful along the way for so many who do endeavor to accompany and understand our journey.  I see these words as further effort along that journey–to make my experience known so that the bridges between us can be broken down just a bit, so that our words can aid and not harm, and so that we can grow, as this blog aims to do, to love and understand one another just a bit better.

*************

I’m Not Sorry

I remember the months before my daughter, Lucia, was born, how people from all walks of life would look knowingly at my pregnant belly and give me heaps of unsolicited advice. A lot of times it was really annoying, because even though pregnancy and birth are fairly universal experiences, it’s hard to generalize. But their excitement, their anticipation, and their joy was contagious: there’s nothing like the expectation of a new baby to get people dreaming and scheming with abandon and so there was something lovely about all their words, fumbling and intrusive though they could be.

These days, now that Lucia is almost two but cannot walk, talk, or move purposefully, people still gaze knowingly at us, but their smiles quickly turn to quizzical looks when they realize she’s not really a baby—she’s a toddler with a progressive, terminal genetic disease of the brain. And when they ask what’s wrong with her or what condition she has, there’s an incredible series of misrecognitions and disconnects: her disease is so rare, one in a million, 200 to 300 cases reported worldwide, that no one has ever really heard of it. So the disease, Aicardi-Goutieres, confounds rather than explains, and its symptoms—seizures, feeding through a tube for a lifetime, progressive brain damage, and often death in early childhood—inspire fear and pity rather than understanding or connection. When I tell people that Lucia has Aicardi-Goutieres, they always respond with two to three heartfelt words.

“I’m so sorry.”

Oh, how it pains me to hear those well-meaning, little words. We are an “I’m sorry” culture. We bump into another person in the grocery store—“I’m sorry.” We inquire for directions—“I’m sorry, but can you tell me…” Even the semblance of inconvenience is prefaced or buttressed by these efforts to make life more pleasant, to paper over the disconnects, to find a way in and out of our busy lives without too much discord, difference, or distance. I know it’s just culture and custom when people instinctively respond by saying, “I’m so sorry” regarding my daughter’s disability, but it both cheapens and chafes against my experience.

You see, while others were dreaming about the child I would have, imagining what she would be like, and giving me advice fit for an able-bodied child, I was thinking about the foster mothers and the foster children I had met in China. I was thinking about how I had never wanted to have children of my own until I had met these children with disabilities and their foster parents who loved them with abandon. I was thinking about how that love, an extraordinary love, had changed me forever. And when most people seemed only to be able to dream in able-bodied terms or to conjure families that might exclude these extraordinary forms, it cheapened my own desire to have a family. It chafed against the love that I knew was possible.

When people say they’re sorry to hear about Lucia’s disability I’m really not sure I know what they mean. Perhaps they’re sorry that she has to suffer pain or medical procedures to stay alive. Perhaps they’re sorry that she won’t walk or talk or go to college or that her life will be cut short by all the complications of the disease. Perhaps they’re sorry that we as her parents have to see her suffer, that we have to fight so hard to get the care that she needs, and that sometimes taking care of her is really challenging.

I guess I understand most of that. Life with Lucia is hard. Life for people with disabilities is a real challenge in this world. But when people say they’re sorry that my daughter has Aicardi-Goutieres, I feel like it also implies that there’s been some kind of loss, some kind of inconvenience, great or small, some type of profound unpleasantry which needs to be apologized for. And suddenly that joy that everyone was filled with anticipating the birth of my child starts to feel so far away, so carefully and cautiously reserved for whole and healthy children rather than for all life, or for my daughter’s life.

“I’m not sorry,” I’ve taken to saying.

I stare into their wide-eyes and I tell them that to me Lucia’s life is not a tragedy, that there’s nothing to be sorry for. I explain to them that the limits the world sees are not necessarily Lucia’s limits but our limits to communicate, to love, to care. And I guess I try to remind them that joy and life and expectation are not perfect or painless or even convenient but that love is always extraordinary. I try to be me in a world that is always sorry, and I wonder if my little inconvenient words might actually bring some of us closer together rather than farther apart.

Lucia with her cousins this Christmas.  Photo by Arwin Ray.
Lucia with her cousins this Christmas. Photo by Arwin Ray.