I had a dear friend come out to visit me a few weeks ago. Several times while we were hanging out she looked me straight in the eye and said things like,
“I miss these conversations.”
“I like talking this way with you.”
“I’m having such a great time this weekend.”
It was so poignant to reflect in the midst of the moment upon the moment, finding it to be so true and so real, savoring it before it had even passed.
A couple months ago I had seen the meme above on Facebook and realized how often I have been reflecting with my spiritual director on living in the moment and how delicious it is to look upon our moments in life and realize in those very moments how blessed we truly are.
I think on that line in the Bible, in the story of the rich young ruler (Mark 10:21), where Jesus, being asked how to inherit the kingdom of heaven, before answering, looks squarely at such a tortured, faithful man, and loves him. “Jesus looked at him and he loved him.”
That same friend and I will turn 35 this year, and it feels decidedly old to do so. It feels like ages have passed. And given all that passage of time, I’m so thankful for her willingness to look on me and love me.
When we were young, we thought everything was ahead of us. But now that we’re literally greying and wrinkling, we find that life is not so much ahead of us, but within us, beside us, amongst us. To me, this is the wisdom and the beauty of getting older–that we don’t miss anything because we are so resolved to live the life that already is.
How do you savor the moment even before it has passed? What does it mean to you, to be getting older?
The Sunday morning crush–those moments after worship lets out and as a pastor you spiral through the gauntlet of requests, cordialities, and pastoral care where in a matter of condensed minutes nearly everyone wants a piece of you. Across these moments I struggle to keep track of all of the information, making mental notes, hoping against hope that I won’t lose the important stuff amidst the sea of bodies and sounds and breaths. And then, just as suddenly, one of our congregants with special needs descends upon me, with increased intensity and concern. She has seen something on the news that is bringing her to tears; he becomes angry as he struggles to remember what he just said to me; she can see nothing but darkness through the thick depression that plagues her.
I do not mean to paint disability here as unilateral or un-diverse, but many of the people in our congregation with special needs where their hearts on their sleeves. They plough into me, a person who’s a bit sensitive to touch, with eager, forceful hugs. They launch into detailed descriptions and litanies–lists of weekly activities without warrant and ad nauseum. They foist their feelings upon me in thrusts of emotion, seemingly without warning or reason.
And in so doing, they are deeply needy.
Their bare, disruptive, palpable need right there in the midst of more palatably, socially-aware displays of contained emotion, less barrier-breaking touch, and less audacious requests clashes with my own sensibilities. It’s too much, I think to myself, this business of trying to minister to folks with special needs alongside more “neurotypical “folks, which is the dance in which our church has become messily entangled over the past few years. I can’t help but think about the imbalance special needs present not just during Sunday morning but within the life of a church–how I, as a pastor, can’t shirk the sense that in attending to these needy folks other more subtle needs may be lost. In trying to provide classes and worship and counsel that is suitable for all modes of learning, my colleague in ministry, church leaders, and I may be spreading ourselves thin, engaged in some cruel, impossible quest to meet needs that are unreasonable and insatiable along others that are more comprehensible and predictable.
But in pondering neediness I am reminded of the poor, elderly foster mothers whom I met in China and the way their vulnerability rocked and assaulted the sensibilities of the orphanage monitors. Such women, many of whom had been abandoned by their own biological children, so desperately relied upon and needed their orphaned, disabled children to recreate life-giving family bonds in contemporary China. In their need, they reminded middle-aged orphanage monitors of their own failures to care for their aging parents or their neglect of their only children. They reminded these orphanage monitors, powerfully, uncomfortably, and disruptively of their own human and yet deeply repressed and seemingly inappropriate needs for love, compassion, and care.
And here I do mean to compare the need of these foster mothers to the need of folks with disabilities and to the needs we all have as human beings. I am reminded of Jesus’s ministry to deeply needy people–to the perceived inconvenience of the poor, disorderly women, especially those pouring lavish ointments over his head and touching the hem of his garment. I am reminded of the metaphors so often associated with need and disability–the unclean, the contaminators, the sinful–and I am aghast that in erecting divisions between people with disabilities and myself, I find that I am the one who is fragile, human, and sinful. I am suddenly aware that the crush of bodies on Sunday morning and these raw emotions, hugs, and pressing needs that seem so inconvenient and disruptive are both deeply human and deeply holy.
And I begin to see that ministry and life (for in Jesus’s life), were not and are not about balance or containment or arbitration, because then life becomes about division. Then I am led to believe that some people are needy while I am not or that need isn’t so fundamentally human, that it’s not part and parcel of Jesus’s incarnation and ministry. So I try and I struggle and I pray to let go of my economist tendencies and submit to such a mysterious ministry of mercy and care and love. I try not to mediate the crush; I try just to pay attention.
But I am also reminded that it’s not just paying attention, and how painfully aware I become in these moments of my own need–my need for self-acceptance, other’s acceptance–and my need for Jesus. And I become thankful that there are some in our midst who aren’t necessarily having such divisive thoughts or harboring such divisions, some who are so deeply, honestly, beautifully needy. I become happily convinced that “we” have gone about this ministry all wrong, for “we” have so much to learn. I become convinced, so richly and powerfully as I do over and over because of God’s ministry to us, that it is not I who is ministering but it is I who am being ministered to.
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.
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.
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.
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.
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.
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.
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.
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!)
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.
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
might never dare
the first step
that propels you
from the place
you have known
toward the place
you know not.
one of the mercies
of the road:
that we see it
only by stages
as it opens
as it comes into
There is nothing
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
to keep an open eye
for the wonders that
attend the path;
to press on
beyond what would
from the way.
There are vows
that only you
the secret promises
for your particular path
and the new ones
you will need to make
when the road
you could not
Keep them, break them,
make them again:
each promise becomes
part of the path;
each choice creates
that will take you
to the place
where at last
you will kneel
to offer the gift
the gift that only you
before turning to go
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.
A few weeks ago, I preached a sermon on the trust psalms, particularly Psalm 27, entitled, “Trust, Perseverance, and Doggedness.” When I went hunting for a closing hymn for the service, I stumbled upon a relatively new one entitled, “Faith Begins by Letting Go.”
While I ended up selecting it for the service, I felt a bit puzzled by the title, the lyrics, and the sentiment. The first stanza is as follows:
Faith begins by letting go Giving up what had seemed sure Taking risks and pressing on Though the way feels less secure Pilgrimage both right and odd Trusting all our life to God
I wasn’t sure I believed that faith begins by letting go of our foundation, taking risks, and that one’s pilgrimage should feel “both right and odd.” Still, something about the hymn seemed to resonate with the content of my sermon, especially the ode to one of the great contemporary spiritual writers, Anne Lamott, on perfectionism and they way in which our writing cramps up around our wounds as in life.
These past few weeks I’ve encountered my own cramps and struggles to write, and am starting to believe in this whole wisdom of letting go.
You see I was having a lot of trouble getting my thoughts to find substance and clarity on the page, writing and rewriting pages and pages of an article on my research with foster mothers in China. I kept thinking that despite my frustrations, I needed to have faith that these meanderings, however seemingly futile, had some semblance of progress and that I would eventually find my way if I kept at it.
However, this morning during my prayer time I realized that in the writing process, I’d started to lose the joy and excitement that is so genuine to my work with families in China. And I decided to give myself the freedom to reflect freely on what I learned and what I love about the families I worked with. In a away, I decided to free myself from the burden of writing something smart and relevant and pertinent to the academy and instead tap back into what these families, this culture, and these people taught me about God and life.
And suddenly I was at no lack for thoughts, ideas, and even words on the page.
I’m so thankful for the wisdom of letting go today–not only because it’s getting me closer to getting this article down on the page, but because it’s taking me to a revelation that I couldn’t have found on my own, by my own strength, might, or wisdom. It’s making clear my need to rely on God and others for insight, faith, encouragement, grace, and communion.
And despite how scary that is, it’s an an amazing place to be.
It’s been quite awhile since I posted anything and to be honest, I’m not sure how much life this blog has left. It’s been such a joy over the years to write about faith and anthropology and China and life and share, but when that doesn’t come easily or isn’t one of my first impulses, it makes me wonder if there is a new chapter on the horizon.
Lately, life has simply gotten in the way, and blogs that feel they have to make apologies for that have always been (for me) some of the most arduous reads! So I will be praying and thinking about what this blog may or may not become and be faithful to you by giving an answer sometime in the near future.
For the moment, great changes are in the mix for our family and all in the span of a few weeks: a surgery for my daughter and recovery, packing and moving to a new apartment, my graduation from Ph.D. program, and a trip to the beach with my family. Sometimes in the midst of all these things when I feel particularly out of control, I’m tempted to cry out, “God, what are you doing? I’ve got big plans here!”
And then I realize how righteous and petulant and silly that must sound to God. Sure, I have plans, but God has the present, the future, and everything between in God’s hands. I’m still working to trust God with the big things rather than struggling to swim upstream and wrest control from God. And to trust and believe that God’s plans include the impossible, the not-yet-dreamed, and goodness beyond my wildest imagination.
Where are you struggling to trust God these days? What are you learning?