Monthly Archives: January 2016

Doing What Matters

Suppose we did our work

like the snow, quietly, quietly.

leaving nothing out.

–Wendell Berry

It hit me in the midst of another inglorious diaper change, the consequence of some digestive discomfort following Lucia’s recent surgery, on a late Saturday afternoon on which we, like nearly everyone else on the east coast, were holed up riding out the incessant blizzard.  We’d rushed home from the hospital on Friday night, eager to get ahead of the storm and heal together only to find that the new feeds were irritating Lucia’s bowels, she was still achey from her incisions, and on account of the snow, we were stranded without nursing assistance.  As I washed my hands and looked rather grumpily into the mirror, I had one of those flickering thoughts laden with resentment, wondering what it was exactly that I’d been doing all weekend.

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A view of the storm from Lucia’s room.  My photo.

When I began spending time with foster mothers in China I found that if they didn’t live in farming villages or shacks on the outskirts of the city, they lived in dilapidated six or seven story walkups–big, domineering concrete shells with no elevators.  For slight elderly women (the people of Guangxi are extremely small-boned) whose knees had long grown tired from years of hard work and whose backs were already curved, such daily climbs were challenging enough.  But when I first watched one of these women sling a foster daughter of about eight who couldn’t walk to her back to take the stairs, I gasped.  Observing these women climb six or seven flights of stairs with such enormous burdens strapped to their backs over and over, I admit that I often wondered, what are they doing?  Why are they doing this day after day, week after week, year after year?

Like any good Westerner, obsessed with efficiency, ingenuity, and supervising, I also marveled at the ridiculousness of it all.  It rather pained me not necessarily that the sacrifice was so grand but so unnecessary, so overwrought, and that it had become so mundane and accepted.  Many of the foster mothers had husbands and other children who presumably could have stayed home with their immobile foster children, yet they chose to carry them up and down the stairs.

Why?

Years later as I barely sweat to change yet another disposable diaper in my warm home, I’m sure I will never quite comprehend the backbreaking work that those foster mothers did, but I think I know now why they did it, and why they continued to do it.

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A foster mother with her son in Guangxi, China.  Photo by Evan Schneider.

Because it matters.

In doing that daily work of caring for their children with special needs–climbing, bathing, and feeding–they were doing work that matters.  And I think that care mattered not only to the children who wouldn’t have been able to venture outside, have a home, or even a mother without them, but also to the foster mothers themselves.  I remember many times catching a glimpse of a seemingly impossible smile upon their faces, a laugh upon their lips, or even a lightness to their steps as they climbed and climbed those stairs.    The smiles weren’t always present by any means: caring is hard work, and I don’t want to diminish it as such, but I think the care that foster mothers gave their children mattered, because they did it not to their children, but with them.

I think there’s an emphasis on making the time we have in this life, especially in this country, count.  There’s an emphasis on being efficient, responsible, and wise with the way we spend our time.  I even hear people talking about doing things because they’re wanting to “make memories” for their children for the future.  And I think there’s a lot of good in responsibility, wisdom, and intention, but I gulp a bit when I think how viciously and flippantly I began to judge those matter-ful moments spent together this past weekend.  It will always be easy to assume that things can be done better and time certainly is a scarce resource.  But I there’s something upended about judging some memories wanting and others foreordained, in dismissing some work as mundane and inefficient, and failing to see what matters most.

What did I do all weekend?  I rose when my baby cried, I tried to ease her pain and comfort her, I wiped her bottom and changed her pants too many times to count, I snuggled with her by the fire, I worried about her, and I doubted myself for a moment.  But today as I threw her in the stroller to venture out into the white, white snow, I thought of those long treks up and down the stairs in China, and I smiled.

It’s work that matters: it matters to our kids and it matters to me, too.

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Silly Sunday Selfie.

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Thank you.

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Look at this cheeky little thing! Photo by Evan Schneider.

I published the words I did on Wednesday to begin a conversation about ableist and “I’m sorry” subcultures, discourse and dominant beliefs that subtly exclude certain families and children.  I should point out that while I only recently did that disability narrative assignment with my students, those some 750 words were nearly two years in the making, so forgive me if these ones are a bit rough.

During those two years I’ve certainly felt misunderstood and excluded at times, but the courage to speak about these feelings and these concerns rests upon a church community who has consistently offered love and acceptance rather than questions; family like those little girls in the photo and many others who love Lucia with abandon and without exclusion; and countless friends (and foster mothers!) who have modeled love and grace with their own lives and walked with us step by step.

My words are personal, because they are my story.  But if these past few days have taught me anything, it is that words are never narrowly what they seem, because they take on a life beyond themselves.  I’m still not sorry, but I’m also deeply grateful for all those who have said and are saying, “Thank you for sharing.”  Your thank yous inspire me, because like the intention and provocation of my not being sorry, I believe they do some really holy work to break down the distance between us.  When you say, “thank you for sharing,” I feel wonderfully and righteously and graciously heard by you.

And that has not always been the case.

Whenever I am asked if my baby was born healthy, whenever I am peppered with questions about how there couldn’t have been any complications during pregnancy or at birth when Lucia lives as she does these days, whenever I answer question after question regarding a disease that holds very little answers or insight into the future (and by the way, none of us knows our future, but that’s for another post), I wince a bit.  I feel as though the world wants an explanation for what’s “wrong” with baby Lucia, or how things could have gone so “wrong,” but we’re at an impasse, because I refuse to offer one.  I will probably never be able to stop having to answer these pedestrian, medical, intrusive questions either, but the thank yous I’ve heard this week are reverberating with joy in my soul.

When you reply and have replied, “thank you for sharing,” I hear you wanting to understand.  I hear you recognizing the value of this story, the value of all our stories, the value of many different lives, and most specifically, that of baby Lucia.  I hear you wanting to include us as we so want to be included alongside other families.  I hear you not being sorry for my child or any other, but recognizing that we can grow as a society and a people to make space for all lives, for all families, and for all children.

So from the bottom of my heart, from my little girl, from my soul, may I offer you in return, a holy thank you.

(…and then I really promise to stop writing posts with such cryptic, prosaic titles!)

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Love this list of countercultural thank yous by Yao Xiao.

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.

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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.

 

Lingering on Epiphany

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Princeton University Chapel.  Photo by Evan Schneider.

Our pastor shared this poem, from Jan Richardson with us, on Ephiphany, and it has stuck with me.  In fact, though Ephiphany has passed and we are eleven days into the new year, I find myself still eagerly greeting others with “Happy New Year,” still lingering over the blessings of Jesus’ birth and a holy season.

Perhaps, as the poem conjures, I’m both reluctant and eager to tread this new path, to embrace and forge ahead into this new year.  Whatever the case, here are some beautiful blessings for the journey, for all those traversing new ground:

For Those Who Have Far to Travel
An Epiphany Blessing

By Jan Richardson

If you could see
the journey whole
you might never
undertake it;
might never dare
the first step
that propels you
from the place
you have known
toward the place
you know not.

Call it
one of the mercies
of the road:
that we see it
only by stages
as it opens
before us,
as it comes into
our keeping
step by
single step.

There is nothing
for it
but to go
and by our going
take the vows
the pilgrim takes:

to be faithful to
the next step;
to rely on more
than the map;
to heed the signposts
of intuition and dream;
to follow the star
that only you
will recognize;

to keep an open eye
for the wonders that
attend the path;
to press on
beyond distractions
beyond fatigue
beyond what would
tempt you
from the way.

There are vows
that only you
will know;
the secret promises
for your particular path
and the new ones
you will need to make
when the road
is revealed
by turns
you could not
have foreseen.

Keep them, break them,
make them again:
each promise becomes
part of the path;
each choice creates
the road
that will take you
to the place
where at last
you will kneel

to offer the gift
most needed—
the gift that only you
can give—
before turning to go
home by
another way.

– See more at: http://paintedprayerbook.com/2011/12/31/epiphany-blessing-for-those-who-have-far-to-travel/#sthash.CPxxKxqo.dpuf

A New Year

My last post was in July 2015, and it’s been an interesting five months away from blogging.

I wasn’t sure I’d return.

I’ve been treading cautiously, because there are big changes in my life, and I’ve been trying to wrap my head around them.  Bluntly, my professional life and my personal life have collided over the past few years.  As my daughter nears two, I’m finally comfortable sharing her story and mine, which I will do on the blog for the foreseeable future.

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.

But I needed time and space to come to grips with that reality and who God is calling me to be.  And in the past half of a year so much has changed alongside that reality–I took a job as a quarter time pastor at a wonderful church, and I am teaching a writing seminar on disability.  And though I’ve struggled to apprehend it, it all feels so good and full and right.  I think I’m where I’m supposed to be.

And so while I’m still treading lightly, I’m ready to do so a bit more publicly.  I’m ready to share my journey again.  And I’m hoping it will encourage you, too.  When I began this blog nearly NINE years ago, I never imagined it would take this turn.  But then again, I’d only begun to conjure China, a Ph.D., a life betwixt amidst anthropology and theology.  I’m thankful for the ways that life is continually coming into view, and prayerful that the unknowable steps will follow God’s lead and God’s call on my life.  I’m excited for the ways Lucia’s life is transforming not only my personal but also my professional life for the better.

It’s been interesting and painful to learn that despite our penchant for understanding the breadth of humanity in all its difference, we anthropologists have not shown much passion for understanding people with disabilities.  In the new year, my blog will continue to grapple with culture and difference and faith, and I will refine this commitment to exploring and understanding disability.  I hope you will continue to journey with me into little sacred spaces.