There have been all these memes and review about the rottenness of 2018: it’s very clear many of us are ready to say good riddance. It was not a banner year for our family either–Lucia had one surgery and two unplanned hospitalizations and both of those came during busy semesters. But, she and we also had one of the best summers of our lives! She was healthy and happy and we went on two vacations with friends and family.
When I look over this year, the lectures I got to give, the conference I got to plan, the articles I published and submitted, the major grants I’ve won, and the mentoring and ministry and preaching I’ve done, it means that much more that it didn’t happen in seasons where things were easy or seamless, and yet there is so much to treasure and cherish. Perhaps especially when things aren’t perfect, it really helps to look back. We rarely learn from triumphs and successes. We tend to just keep forging ahead. But disappointments, mistakes, and challenges are the sites where growth can take seed if we’re willing to own up to them.
In that spirit, I’m honored to share some of what I’ve learned with you in this year, and I invite you to do the same. What end of the year rituals do you have? What hopes do you have for 2019?
I was really humbled to preach the first sermon in Advent at chapel yesterday at the seminary. For those of you who have been asking, here is a transcript of the sermon.
Blessings on your Advent preparations!
As begin our journey in Advent this morning, we recall that the narrative of Jesus’s birth in Luke is intertwined with the parallel story of John the Baptist’s birth and his parents Zechariah and Elizabeth. In verses 5-20 of chapter 1, we are plunged into what Joel Green calls “the small town struggles of a little-known priest and his wife…the atmosphere is permeated by the piety of Second Temple Judaism and Jewish hopes for divine intervention.”
Now we’re living in a very different context than Zechariah and Elizabeth, but they feel like people we seminarians can relate to. They’re pretty faithful people. They’re really faithful people. Zechariah is a priest who’s given the honor of entering the sanctuary and offering incense in conjunction with sacrifices. The scripture tells us that he and his wife Elizabeth “were righteous before God, living blamelessly according to all the commandments and regulations of the Lord.”
But in placing their childlessness directly after their high religious and social status, the scripture isn’t just showing us their social disgrace but reminding us of their suffering. For Zechariah and Elizabeth who scripture tells us are “both getting on in years” we can only imagine that if they have been struggling to conceive for quite some time, they have likely known the pain of losing children, carrying hope and letting go of it.
And so when the angel of the Lord appears to Zechariah, fear overwhelms him and though he’s told he and his wife will rejoice at the birth of a son John who will be great in the sight of the Lord, he doesn’t believe it. “How will I know this is so? For I am an old man, and my wife is getting on in years.” We’ve been prepared for years for this, Zechariah thinks. We’re in the temple everyday, we’re faithful, we’ve prayed and yet our prayers have gone unanswered. How will we know this time will be any different?
I find some solace in this beginning to Advent, this hard place, this small story in which God comes close and carries out God’s very plans amidst our lives. But I struggle to believe, too. You see, I have been pregnant during Advent, filled with the expectation of a child, of hope, of new life, but I have also miscarried in this season. And a few years ago, during Advent, even after having a child, my husband and I were still waiting. Following our daughter’s seizures and hospitalizations, around 10 months they did some blood tests, they sent them away, and we waited for a diagnosis.
And when we got our daughter Lucia’s diagnosis, a progressive, genetic disease of the brain, I remember wanting to be prepared. I googled the symptoms, the treatments, the prognosis. “Death in early childhood” it read. And so I remember wanting to be prepared for when, for how, for what that would look like, so I googled a lot more. We got a diagnosis and now I wanted a prognosis. I remember wanting to be prepared.
But for what? So I could hold back just a little bit, so I could love her…just a little less? What?
Now I would be lying if I told you that as a parent of a child with disability and a scholar of disability that I wasn’t pretty uncomfortable with a text this morning that seems to use muteness, disability, as a punishment for doubt and disbelief.
But my own experience also makes me wonder if there’s more to what God is communicating here. Because I remember that feeling of seeing the beautiful child God had put before me and yet wanting even more reassurance that things would be okay. Maybe that’s where Zechariah was, too, after all that waiting, even with the angel’s proclamation, he just wanted reassurance that things would really be okay. Even the good news wasn’t good enough to overcome all his fears, his plans, his googling. Maybe for Zechariah and for me and for you, we have been tempted to continue doggedly on with our own plans, because at least it gives us some control. When we begin the story, Zechariah and Elizabeth are seemingly in control of their lives and where we end our lesson this morning, perhaps the problem is that Zechariah is still struggling for it. He’d rather cling to control than experience what God has in store.
And so silence that looks like a curse of Zechariah’s unfaithfulness may be the very reminder in this Advent season that God is active in our smalltown lives even when we don’t believe it to be so. That loss and heartache and suffering and pain are the very places where God seeks to meet us, but where we often try to control that God who wants to break into our lives and our world with radical, reckless love. The best thing that God did for me in that Advent season was not to give me a clear prognosis, a healthy child or a new computer where I could google my future to death, but like Zechariah, God invited me to lay beside my plans and just love the person in front of me. God gives us life to go on living, not always in the form of children, but always in the people beside us and the ordinary circumstances of our lives—reoriented, shifted, rerouted toward the extraordinary love of Jesus Christ, our savior.
That son who will be born to Zechariah, John, will go onto urge us to “prepare ye the way of the Lord.” But make no mistake this Advent, we are but participants in the saving work of God, Jesus, and the Spirit. Thank God that our preparations are not our own.
As we roll Lucia away from the face painting station on Saturday, a bright blue and yellow seahorse on her flushed cheek, I overhear the student ask the next little girl who’s climbed up into the chair how old she is. “Four,” she replies effortlessly. “Oh, you must be in preschool then?” the woman asks.
Lucia is four. Lucia is in preschool. But she doesn’t climb up on chairs or talk. I rather marvel at the young girl’s speech and motor-skills until I remember that my kid is the one people sometimes describe as “really disabled,” that my kid is the one who’s developmentally behind, delayed, atypical. It’s only in brief dissonant moments like these that I sense that my kid might be “other” to someone else or that our life might be considered atypical, because of course, to me, she’s just another four year-old with face paint, and we’re her parents.
But I’ve often felt like I’ve glimpsed something other-worldly in my daughter when she laughs, because the giggles tumble so uncontrollably out of her taut little body, erupting out of her, they seem to send ripples throughout the room. When we’re in public, I love to catch people, especially otherwise grouchy looking people, finding those giggles downright contagious, moved by the pure joy of the sound of her laughs, the generous, inclusive flash of her wide smile. She lacks words, but in these moments words are obliterated, unnecessary. She can’t really move on her own from her wheelchair and yet when Lucia laughs with true abandon, completely undeterred by anyone else around her, it strikes me that she is uniquely, utterly free.
Earlier that Saturday morning when Lucia and I sit there lazily in the living room, still in a stupor from a sleep study we completed the night before at a hospital an hour away from home, my husband says something astounding. He reminds me, the anthropologist, that the oppressing milestones of developmentalism inflict not just stress, but moral judgment on many a parent. Feeling as though it is up to you to usher your child through life’s varied stages with utmost precision is constraining and exhausting. And by that yardstick, our four year adventure in parenting is one colossal failure.
But then, we’ve also been set free.
We live life and we parent simply for the joy of it all. We don’t worry if we’re doing it right, because all we can do is seek comfort and happiness for our girl. We’re hurt when she hurts, of course, and there are times we wish we could fix things that we can’t. That pain that she feels and that hopelessness that we often feel are not to be understated. And yet, because of all the things we can’t do as parents and perhaps some of the things Lucia can’t do herself, we’re also very free.
We can’t hardly do anything but love her, and so we do, one joy-filled day at a time.
And it’s weird, precisely because Lucia does so little, I feel like it’s easier not to get lost in what she does, but to get to know her for who she is–a generous, patient, gregarious little soul–and it reminds me that none of us are the sum of our accomplishments anyway. So why do we let ourselves treat our kids that way? As if life is mostly gain and growth, when they’re all we’ve ever wanted, just as they are. Maybe it’s because deep down we’re not sure we’re really enough just as we are as people and parents. We could always be doing more, right? We are our own enemies of freedom, our own robbers of joy.
But before you say that we’re extraordinary or that Lucia’s extraordinary (okay, well that may be true!), let me tell you something else: there’s little in life that we actually control and when it comes down to it control is not at all what it’s cracked up to be. What’s extraordinary is that in a world of such chance and circumstance and chaos, we three get to live life together. We get granted these moments of joy and freedom that are other-worldly and grace-filled.
Now as a Christian, I tend to think joy is a gift from God, but whether you’re a person of faith or not, you may be able to agree that joy seems to come from elsewhere and only deigns to nestle itself between people with audacious graciousness–it’s always granted, never earned. That’s the one thing I guess we’ve come to understand about parenting, too. Its freedom is granted, but it also requires our willingness to let go of all the things we think are so important to receive it. I’m sure it may look like many of those things have been stripped from us, wrested from our control in becoming Lucia’s parents, but I just don’t see it that way.
Because when Lucia’s gone, I doubt I’ll remember or cherish how well she stood in her stander, how efficiently she swallowed bites of puree, or even mimicked the sounds of our voices, but I’ll never forget the sound of her laughter. I’ll pine for it, like I pine for nothing else. And I’ll pine for the way that laughter bid me to laugh alongside her, when I wouldn’t have had the courage to laugh with such abandon on my own. Without Lucia, I wouldn’t be a parent. Learning to love Lucia, I, too, have been set free.
I realized that it’s only fitting that I started blogging again yesterday during Lent, because as history serves, Lent has lent (I just can’t help with the puns…you know Easter is on April Fools, right?!) a good portion of inspiration.
So I’ve compiled, just in time for Good Friday, a dose of Lenten posts for your contemplative reading.
I pray that this season has been meaningful and full for you and that you find so much comfort and hope and peace even at the sight of our wounded savior on the cross. May we linger on that cross and the grave with renewed passion and waiting and expectation of the hope to come on Easter Sunday. Amen.
I should have written sooner, but it’s been a winter and a spring marked by surgery, hospitalizations, feeding difficulties, and gregarious giggling. It takes listing it as much–those startling rhythms–for me to note that perhaps there are good reasons for not having written, that this year has been so rough already, three months in, it seems anything but ordinary.
But while my attention has been swayed by nights in the hospital, the precise milliliter at which Lucia always seems to choke and aspirate, and the ramshackle solutions to trying to keep those calories inside her little body, I’m also starting an ethnographic project on disability and communication, and so I find myself watching the ordinary things we do together, too. Because she can’t see well and because we don’t have traditional conversations, I find myself instinctively doing things with Lucia that I wouldn’t do with anyone else. I place my face right up against hers as I’m speaking to her. When I say her name I watch for the flicker of recognition in her eyes. When I notice her lips are dry, I pick the large flakes from them and then apply balm, something she licks and smacks with eagerness, because she doesn’t eat by mouth. When her head begins to drop as it often does out of neurological lapse or fatigue, I guide her cheek and her chin back toward me without thinking. And when on the rarest of occasions, she turns her eyes to mine, I don’t know what it is about it, but I can tell she is really, really seeing me, and it is the holiest of moments, the simplest of pleasures, not just for her or for me, but for both of us–I’m certain of it.
Feeling so certain of these ordinances and our bond with one another is something I never expected to buoy us in this extreme world of uncertainty. And so at the end of a long Monday, where I shuttled her to a rather bleak nutrition appointment, and she’d made the rounds on errands and to my office, all the while coughing and sputtering her feeds, because there was no nurse, I realized that it wasn’t what ostensibly might qualify as a great day. And yet, when I looked into her eyes that evening, I also felt so far afield from those early days when she’d cried incessantly and I couldn’t do anything to comfort her, and I’d text her father in exhaustion and desperation. I’d wonder whether she even liked me, and people thought I was being facetious, but I really wondered whether she even knew her mother was there.
It’s not something I readily acknowledge. How can you? How can you go on living your so ordinary life when you are often reminded how fleeting, precious, and truly extraordinary it is? Just a few years ago, when we had the opportunity to meet other families of kids with AGS at a conference, I saw a grown man gleefully pounce on his 90-pound teenage daughter laying on a mattress in the middle of a hospital conference room and it put a lump in my throat to see how similar their modes of communication were to ours and to realize that loving Lucia wouldn’t ever have to change if we were lucky enough to know her that long. We could go right on loving her with abandon and conviction if we were just brave enough to do it.
If we were sitting together this morning having coffee I would tell you that life has lent its typical roller coaster as of late (seizure for Lucia- she’s doing great now, though; running over a deer carcass with my car for me-it still smells; no bus for Lucia’s first day back to summer school on Monday- a friend came to the rescue; nurse pulled out Lucia’s tube on Thursday morning-ugh; and we lost power on Thursday night during the storm-got it back early Friday morning)… and yet, as you see, with God’s help, we’re finding adventure in adversity and somehow holding it together!
Summer has been so full of unexpected joys–luxurious and productive staycation for us in June, thrilling aquatherapy sessions for Lucia covered by insurance and rides to and fro covered by Medicaid–even as it’s packed with challenges, too–I sent my book manuscript off to the editor in early June, have been teaching summer school at Princeton since July, and start a new job at the seminary in the fall. All this while the healthcare wars rage on Capitol Hill and we worry as Lucia’s care seems to hang in the balance.
If I seem distracted, unable to focus even in the midst of a sentence, it’s because I am.
But I’m trying to trust that (with the exception of maybe the healthcare battle, deer carcass, and tube being pulled out) there’s a real abundance, blessing, and excess in the way my cup is brimming over, inviting me to embrace this season in its chaotic fullness and to testify to what God’s doing with a life and a heart fittingly overflowing with joy.
So that’s what I’m trying to do (more on how that later), not living a life in response to what others are doing but a life that responds to what God is clearly doing, in a big way in my life, my family’s life, and in this world.
Still, if we were talking this morning, I’d look you in the eye and thank you but urge you to keep making those phone calls on behalf of people who are on Medicaid, who need assurance that health care will be there, not just for the healthy but for the sick, the poor, and the needy. I’ve put some links below that I’ve found helpful and important in wading through the excess of information out there. I did a podcast on Medicaid that I hope you’ll share with family and friends who want to understand its benefits and even as I still feel that families with people with disabilities face such an uphill battle in terms of understanding and coverage, I am thankful for all the support and hopeful that concerned citizens are making their voices heard.
I was reading Margaret Mead for one of my seminary courses yesterday: I sat there for like two full hours just reading and devouring–it was incredible, and this quote of hers that has been on my mind for weeks sprung to my attention. I leave it with you in hopes that you may believe that we can change the world, that God is with us even when we forget it, and that joy is abundant and ample and just as human as fear and defeat!
I had this one fear when I realized that Lucia had Aicardi-Goutieres Syndrome and would likely live a rather unconventional life. It wasn’t that she would be different–as an anthropologist (and a minister), I’ve learned to embrace difference, and the foster mothers I studied in China had enumerated the ways in which people very different from us often expand our very knowledge of ourselves and what it means to be human.
But I whispered to a few people and I worried in my heart of hearts that while Lucia might be able to receive love, she might never be able to give or express it.
I don’t think I worried it selfishly (although certainly naively), but I just thought about my own life and how much I’ve learned and received and grown by the very challenging act of learning to love others–not just receiving love–and I guess I couldn’t quite imagine, amidst days on end of shrieks of pain, colossal brain damage, and multiple disabilities, what that would really look like for Lucia.
On the eve of her first day of school and just past her third birthday, however, I not only finally see how much I underestimated her and God but how much a person can say without much purposeful movement, without words, or without rolling or crawling or walking or talking. I underestimated how much joy can emanate from such tiny, immobile person–how by the age of 3 Lucia has taught me more about love than I’d learned in maybe three whole decades–how her way of loving would change everything I thought I knew about God and life and love.
“Do you think she knows you?” people will ask my husband and me, and there are things we will tell them, like how she cocks her head and her eyes focus for just a split second when she’s really listening or when perhaps her limited vision has allowed her to take in some glimpse of the world. Or how she recently started to erupt into fits of giggles when she hears her daddy make farting noises or how a slow smile seems to creep over her face when my husband or I set foot upon the creaky boards in our noisy house. Or how there are times when you take her in your arms and she seems to wrap her rigid little arms around you in a way that makes you feel known and held and real.
But it’s all very hard to tell or describe, because you can’t break joy or love down to a science. How do you know your child loves you? You just do. There’s a feeling between you and it doesn’t go just one way when it’s felt–it’s a shared cultivation, this business of living and being loved. And how I ever thought it possible for that love to be unrequited now feels so distant and so foolish and so naive.
And so I can’t really find it in myself to worry about how Lucia will do when she goes to school. Lucia will do just fine. We know she will grow so much by being around other kids and by learning and by moving–she’ll thrive in a social environment, for sure. But those people around her–I’m almost more excited for them. Because they will be loved with a joy so deep and so profound and so beyond any of our imaginations that they will grow in these ways that none of us ever imagine to be possible.
Lucia reminds me how much more there is to be learned from those who seem the least capable, the most impaired, the least adept at the things in life and that there’s something of God’s love in every speck of our beings however imperfectly or perfectly made we may appear.
We love because God first loved us. Every single one of us. Even my Lucia.
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’s bad blogger etiquette, isn’t it, to post about this season of fullness and never fill one another in on what the true challenges and joys are, and generally how it’s going?
For me, fullness is a mixed blessing. It’s been finishing the writing and revising of my dissertation on Sunday mornings, which has been necessary and fulfilling, but has taken us away from our dear church community and made me wander a bit from God. So fullness, ironically, in the vein of confession, has included a spiritual desert for me, in which I’ve been reticent to go to God with all of my worries and concern, for fear of finding answers that I haven’t wanted to hear or face. Fullness, though, has also been the everyday work of plodding along with life, filled with the everyday joy of seeing our daughter and our family grow together. It’s included brave car trips with a screaming baby, on the end of which we were fortunately met by treasured friends.
I’m starting to come to terms with the idea (and this was evident to me as I peered through tears writing the acknowledgements to my dissertation in the wee hours of another Sunday morning feeling so humbled by so many people who had a hand in it) that when we are in the blessing and sacred presence of others, despite our own penchants to push God away, God is never far away at all. I am amazed that despite my tendency to drift in this season, God keeps close through the ministry of others. As our pastor reminded us this Sunday, “that’s how God gets things done.”
I’ve been so focused on getting my own things done in this season of fulness that I often forget how faithfully God has stood beside me at this time and all along. In returning to acknowledge God, it makes sense that my first action, before repentance even, would be praise. Even as this makes cognitive sense to me, I’m still struggling a bit this morning. I pray that I find those words of praise even as my spirit is weak.
Where has God stood beside you in your life? What is God doing for you now? How is your season of fullness coming along?
The Lord is my shepherd, I shall not want. He makes me lie down in green pastures; he leads me beside still waters; he restores my soul. He leads me in right paths for his name’s sake.
Even though I walk through the darkest valley, I fear no evil; for you are with me; your rod and your staff— they comfort me.
You prepare a table before me in the presence of my enemies; you anoint my head with oil; my cup overflows. Surely goodness and mercy shall follow me all the days of my life, and I shall dwell in the house of the Lord my whole life long.
Psalm 23 is so short and sweet and familiar that for many of us the words tumble off our lips without a thought. But it’s no wonder that so many have clung to it over the ages, repeated its promises in the darkest hours and been comforted by its imagery in the depths of despair. Its simplicity and eloquence are timeless and poignant.
And yet, there’s more to it than comfort and consolation. There are practical assurances that we will walk through dark valleys in this life despite our faith, that we will encounter enemies, and that these hardships are not mutually exclusive from goodness and mercy.
These past few weeks I’ve been a little overwhelmed by the busy-ness of my life: childcare and feedings crammed between preparing for classes, editing my dissertation, and applying to jobs. And since I’m so averse to busy-ness, somewhere along the way, it occurred to me that framing that stress and pressure not as busy-ness but as fullness allow me to better see and experience the wash of blessings, difficulties included, in my life.
There is so much comfort for me in sleepless nights and rushed days to trust and believe that this season is not simply busy, but wonderously full. Full of hard work and deep joy, full of hard decisions and deep love, and full of uncertainty, but filled with grace. I take heart and solace in the fullness of life and the promise that goodness and mercy are not fleeting, but that I shall forever dwell in the house of the Lord.