Tag Archives: God

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!

 

 

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.

 

 

 

 

On enjoyment and spirituality

Can I confess something?

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Lucia and I on the patio, the leaves catching the first glimpse of fall.  All photos mine.

I really, really, really love our house.

That may seem like the most obvious thing to say.  I’m supposed to love it, right?  When you spend months and months anticipating something, it seems inevitable that your spirit would sigh a bit when you finally experience and live into what you’ve been anticipating.

Maybe it’s my Protestant ethic or my missionary soul, but it feels like a confession to make and it’s been a little hard to let me give in and love this house, because I have a hard time loving any-thing so much.  Things aren’t supposed to make us happy, I scold myself. Happiness should be intangible, inwardly grounded, yet that which sets its sight on lofty and pure ways–contentment in all circumstances.

But it just makes me so deliriously happy to share this place with friends; to sit on the porch and watch my daughter, despite her limited vision, explore the beauty of the trees and the dappled light and shift her head from one side to the other in search of birds and cars and sounds; to watch my husband cook for friends and for me in the light-filled kitchen; to linger on the porch into the evening enjoying being outdoors and in one another’s company; to work fervently inside my office these days and creep down to watch Lucia solider on in her therapies in her new room; and to dream about the times that will be had here, the way we can share and reinvent and live into and enjoy our space.

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Lucia on the patio and my prosecco and grapefruit juice ready to greet the weekend.

And suddenly enjoyment of this space, the way in which it invites me to hope and dream and pray, doesn’t seem so bad, so ill-advised, decidedly worldly, so spiritually vapid.  I find that my spirituality these days is constantly unfolding, being remolded and reshaped to see God in more places, and I think that is good.  I find that my Puritan tendencies that push back against my instinct to revel in this place and its grandeur cannot always be trusted.  Indeed, my own sense of what is good and pure and right can sometimes lead me astray, whereas Lucia, nature, sharing, my marriage, and life well-lived can be much better guides.

There’s no way I will ever shirk my missional aspirations, nor do I want to fully.  I remain convicted that this house is not a final destination or a treasure to be hoarded, but a beginning and a challenge that must be regarded with care, responsibility, and humility.

What will you do with this great blessing?  I often hear God asking.

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Exploring one of the lush country roads together.

And I am intent to respond, share it freely, use it to bless others, and remember that it is not my own.

But somewhere in there, I think God wants us to enjoy it, too.

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.

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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.

Why the Church Needs People with Disabilities

 

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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!

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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…

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.

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Lucia staring into her Daddy’s eyes during a recent hospital stay.  My photo.

 

On big plans

The woods beside the D&R Canal.  My photo.
The sunny summer woods beside the D&R Canal. My photo.

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?

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Embrace YOUR life

My husband and I have both been reflecting on the amazing perspective afforded by gratitude and the way that reflecting on our blessings even in the midst of hardship, fear, and sadness can be deeply healing and refreshing.

But that perspective is often lost on me.

It’s really tempting to look around and idolize other peoples’ lives, to assume that they’re better, perfect, or more satisfying than my own.

But this is but a distraction from a vital, necessary, but often perplexing step to contentment: acceptance.

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It wouldn’t even matter how perfect someone else’s life is or isn’t, because it’s not mine.  

And while this kind of language often sounds like settling or becoming complacent with unhappiness, you’d be surprised how freeing it is to rule out the pressure of living anyone else’s life but yours.  We simply can’t be anyone else or live anyone else’s life but our own and by embracing that fact, suddenly a bit of the dissonance clears and we are free to focus on what we’ve been given, what we are thankful for, and what we might want to change.

Lately I’ve been trying to be passionately committed to embracing my own life as it is.  And when I look around with eyes for only my life, I realize how richly God has blessed me and how thrilled I am to be living this life that is uniquely my own.  I try (though I don’t always succeed) at even embracing the hard stuff, the bad with the good, praising God for it all.  And when I reflect on who God has uniquely called me to be in this life, there’s also some wonder in the clarity.  Things that do not help me fulfill that purpose can fall by the wayside; things that can help me serve God more fully can be added.

Try it this weekend.

Take a few moments to let the lives of others’ around you fade into the background and focus on embracing  your life as it is.  What can you see that perhaps went unnoticed before?  Where is God fiercely, actively, passionately loving you in your life now? How can you better serve God with the life and the resources you have?  How can you maintain that attitude of gratitude everyday?

Faithful with this moment

 As 2015 has begun, I’ve been filled with this desire to be faithful to God.  But what does that mean?

As I’ve reflected on all the uncertainty in my own life and the world, I continue to struggle with trusting God with the future and what is beyond my knowing.  When I picture the future, my wildest dreams still sometimes tend toward anxiety, and I begin to worry, doubt, fear, and breed resentment.  I know these are not faithful feelings, and I worry that I’m just not cut out for this life of faith.

Awning and lights in Paris, France.  All photos by Evan Schneider.
Awning and lights in Paris, France. All photos by Evan Schneider.

But I’ve also realized something.  When my daughter cries, I turn without thinking to wrap her in my arms.  When a student in front of me needs counsel, I listen intently and reply with carefully chosen words.  When those around me are hurting or in need, I lift them up in prayer, and I strive to serve them.

When it comes to one moment, I think I can be faithful.  I can be faithful with this moment rather than fearful of what I do not know.  And suddenly faithfulness becomes not something unattainable or fleeting, but a daily practice of breathing and walking with the God of this moment.  

A couple days ago I found myself saying to a tearful student in my office,  “I know at this moment, you have no idea what decision you will make in the future and how you will make it.  But you are a capable person.  You are doing everything you can to gather all the information and be prepared to make a good decision.  Therefore, I trust and believe that you will make a good one when the time  comes.”

The River Seine at night.
The River Seine at night.

I love saying those words.  

I love letting others know that when the world and uncertainty fill them with doubt and fear, there is reason to trust otherwise.  I love believing in a God who is invested so deeply in our lives, in making us capable, faithful people, rather than leaving us to our own devices.  And I love knowing that faithfulness isn’t just about some lofty goal or distant future, but is the stuff of now, of taking care of this moment, with God never far away.

Now, if I could only listen to my own advice…

10 Things I learned in 2014

Christmas lights in NYC.

This is one of my favorite posts to write, because it forces me to go through all the lessons of the previous year and cull together all that God has taught me and all that God is doing.  2014 was such an eventful year for me personally, with the birth of my daughter and the defense of my dissertation.  Both of those have opened up some exciting conceptual space for me to dream and imagine my future vocation and God’s work in my life.

Sometimes that opening is scaring, because it’s always been hard for me to trust God with the future.  But if there’s one thing a new year brings, it is an opportunity to reframe what’s in front of us and see life through the eyes of God rather than our own limited vision.

A lovely cup of coffee. One of my favorite things.

Here’s what I learned this year.  What about you?

1.  Contentment is about living faithfully with uncertainty.

2.  Our lives are fuller when we yield to God and one another.

3.  We can’t have new life without the dirt and the worms and the mud.

Hoping for snow in 2015..

4.  Living as Easter people means risking earthly things for eternal ones.

5.  True love demands a shift in the way we view and live life.

6.  I desire to live with the humble heart of a student.

7.  When we view the world with open eyes, we find grace in our everyday circumstances.

8.  Stress-filled lives are also beautiful and holy, because God is present even in the thick smog of stress, enabling us to breathe.

9.  Everyday we choose whether to live in a world of abundance or one of scarcity.

10.  Whatever you’re feeling, God can take it.

* And the most viewed posts of 2014 were Five Chinese Phrases to Get You By,  International Travel Tips, and Imitating Christ’s Humility = Being “Like-minded.”