Tag Archives: thanksgiving

A life of gratitude

Over a year and a half ago now, we lost a wonderful man.  He was a deacon at our church, a playful, yet wise soul, and he happened to be the husband of the pastor I work with at church.  A month or so after he died the family sent out thank you notes with his photo and the caption read, “Just another day in paradise.”

That phrase was Pete’s response more often than not to the casual question, “how are you doing today?” It was maybe 20% conceit and 80% truth–you see, Pete was suffering from Multiple Sclerosis.  He’d needed to ride in a wheelchair, and he had lots of body parts that didn’t work the way they once did after many years of living with the disease.

But if you got Pete talking on the subject of “paradise,” he’d almost always follow that up with something about his life being “an embarrassment of riches,” and that was something I know he meant with his whole heart.  Even from his vantage point in his wheelchair, his body failing, Pete could see that what was important, even lavish was his own very life and the people in it, and they made that life worth living every single day.

Pete
Pete, rolling through life with style.

Around the time our daughter Lucia was diagnosed with a terminal, genetic, progressive disease of the brain, my husband heard a radio broadcast about other kids with a similar rare disease, to which parents mentioned two lifestyle options–you can either fight like hell seeking a cure, they encouraged, or you can sit in a corner and mourn this terrible disease.

But if you’re any reader of this blog, you know that my husband and I have tried to make way for at least a third option, one that kind of reminds me of how Pete lived his life.  Because, although to some extent everyday is a struggle with and for our daughter Lucia, everyday it also somehow just as it should be.  Pete’s perspective on an “embarrassment of riches” truly resonates now that we’ve had four years with a daughter we were never guaranteed.  And that perspective, on the days where she’s struggling to keep any food down or inexplicably crying in pain, makes all the difference.

Cinderella
Lucia, also rolls through life with style.                                                                                                   Pictured here in her Cinderella Halloween costume that her nana made for her.

I guess the lifestyle philosophy I’ve learned from Pete, my life, my daughter and others around me goes something like this–you either wake up convinced that the world is not as it should be, or you trust that there’s some wisdom, some perspective, some peace to be found in acceptance of this precious life you’ve been given, and you go about living it not with resignation, but with gratitude.  And gratitude, somehow, makes everything whole.

That’s what I saw and learned when I interacted with Pete, that he wasn’t papering over the difficulties and playing Pollyanna, but that in his wrestling, he’d found his way to sincere gratitude and that gratitude permeated every corner of his life.  Someone noted the other day that even when I tell them about the difficult times with Lucia, I’m usually smiling.  How can that be true? they wondered.

Because life with Lucia is a gift, plain and simple.  And life with Pete was a gift, too.  

Even on the roughest days, I can’t help but see life lived with Lucia as “another day in paradise,” “an embarrassment of riches.”  It’s not trite, just true.  And just as Pete taught me, I try to share that life of gratitude with others.

You can find my colleague, Beth Scibienski’s book, Who is God When We Hurt? that chronicles her life with Pete, her caregiving, her faith, and her grief by clicking here.

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Thanks-giving

I can’t tell you how often these days my husband and I are brimming with joy as parents.

Every time our daughter smiles and giggles and babbles her sweet sounds, life–nearly four years of it together now–just doesn’t get any better.  Indeed, when I look at photos like this, Lucia’s face pink and scarred from laying her cheeks in stomach acid night after night when she couldn’t tolerate her feed, I think just how far we’ve come.

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…and smiling through it all!

But a lot of things have also stayed the same.

Lucia still needs a tube to feed during the day and overnight, she’s still prone to seizures, she’s having trouble breathing, and she’s scheduled for major surgery in 2018.  Our family equilibrium isn’t typical, and it doesn’t come from a respite from medical complications, technological procedures, or nursing interventions.  Rather, it is those very things and an incredibly spirited three-year old that often makes life so much fuller, grander, and more beautiful than we ever could have imagined.  Ever since we got private duty nursing through Medicaid when Lucia was about a year and half old, not only her cheeks, but her lungs, her digestion, her joints, her nutrition, and her mood have all shown such growth.

In this season of thanks, we have so much to be thankful for.  

And yet, I’d be lying if I told you that 2017 wasn’t anything but an incredibly trying year.  In the midst of all of Lucia’s persistent health challenges, we’ve also faced major threats to her healthcare and provisions for people with disabilities all year long.  Living life with this constant threat hurts more than the uncertainty we face with Lucia, because it’s complete manufactured and manmade.

And  I can’t help but think about how the spirit of this Senate tax bill seems so out of sorts with this week’s cherished American tradition.  They call it Thanksgiving, because it was one of the Pilgrims’ first corporate acts of giving thanks for the good harvest.  And while the stories we tell our children about the miraculous sharing of a feast between the white colonialists and the Indians may not be entirely accurate, they reflect an idealized notion that thanks must be freely given and cannot be readily given unless there is peace, justice, and provision.

So this week, the prospect of giving thanks when so many are facing the looming possibility of losing their healthcare, people who are poor and hungry will suffer because of the bill, and people with disabilities will lose benefits and supports because of it, seems downright trite and inhumane.  I wonder if when we go to celebrate this week, we might practice yet another storied, American tradition–that of patriotic protest, dissent, and advocacy and urge those we love and those around our tables to give as we give thanks.

You give to my family every time you make a phone call to your senator and tell them that people with disabilities shouldn’t suffer so that this country can save money.  You give to my family when you pay your taxes and portions of those taxes go to programs like Medicaid that support nursing care, medical coverage, and medical equipment for kids like Lucia who are deemed too costly by private providers.  And you give to families, especially those who find themselves in need this season, when you make clear that we cannot celebrate tax cuts when the poor get poorer and the hungry go hungrier.

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Miss Lucia laughing in her stander.

If this truly is not just the season of giving thanks but also of giving, then let us gather together to make not just my cup, but every cup of every parent in this country overflow with gladness.  None of our journeys are typical, but that’s what makes this country so great.  Let’s not let a few hard-hearted people in Washington make it otherwise, especially on Thanksgiving.

And from the bottom of my heart, for all your phone calls, prayers, and support,

thank you.

 

There are typos in my dissertation

When I finished typing the last few words I set aside my dissertation for about a week.

I was afraid to read it, because I knew there would be typos amidst that sea of words.  It’s just impossible, not matter how many proofreaders, no matter how much time spent, to produce something perfect.  And while I know that, I didn’t want to experience the pang of how those mistakes would mar the crisp, white pages.  I wanted to believe that there was some way that all my hard work would pay off with perfection.

Like I said, that lasted about a week, and then I had to face reality.  I read through it, in preparation for my dissertation defense, and there were many typos.

And it was still okay.

One of my last dissertating sessions.  My photo.
One of my last dissertating sessions. My photo.

In fact, the typos reminded me that I’m not in pursuit of something perfect, but something human, something meaningful.  What’s more, I could see beyond the typos to those people in China who changed my life.  As I read, I was humbled to see and know that despite the congratulations that would be heaped on me and only me after the defense, this dissertation, was truly the work of many hands.  The typos reminded me that despite the perfection that’s so idolized in academic fields, we academics are imperfect people who rely heavily on the minds, kindness, and generosity of others to produce our knowledge.

There were moments where the typos made me wonder whether I had any business defending a dissertation toward a Ph.D., but I’ve also realized that it’s great to recognize that while you have learned a lot, you still have much more to learn.  It’s not so bad to see typos and be humbled and recognize that you’d rather be transformed and human and vulnerable than perfect and magnificent and independent.

This Thanksgiving, I’m thankful, in all circumstances, for typos, for friends, for family, for foster families in China, for dissertations, for new journeys, for imperfection, for growth, for love, for peace, and for God.

What about you?

Armfuls of grace and mashed potatoes

I feel like I’ve entered a phase where I’ve been forced to live here a bit more, to let others care for me, and receive the grace and abundance of this community.

The gates of Princeton University. Photo by Evan Schneider.

And while sometimes I feel sad and confused that China and her people are feeling more distant to me day by day, at my wisest, with God’s presence near, I realize it’s not an either/or.  God doesn’t want me to or ask me to choose between people in China and people here, but to believe that God’s omnipotence leads to impossible community and connection.

Not last night’s presentation but another one from this season.  Photo by Evan Schneider.

But it’s not just God, it’s God’s people who do that kind of work–the people in my life who generously let me babble about the foster mothers I’ve met until I’m breathless, the people who sat through my presentation last night and inspired and encouraged me with their enthusiasm for my study of families in China, and the people who value and understand that work is not just work to me, but the stuff of vocation, passion, and calling.

Photo by Kayla Nymeyer, Yunnan province.

And so as we enter this season of giving thanks season, and China feels further and further away, I count the blessings so near and pray for God to come closer.  Not just closer to me and mine, but to God’s people in China and people everywhere, because that’s God’s thing–doing the impossible globe-trotting ministry of presence.  

More beauty in Yunnan.

And the rest–the believing and the boldness and the taking in big armfuls of grace just as we do extra helpings of mashed potatoes and turkey–well, that’s all up to us.