Tag Archives: surgery

The audacious ordinary

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.

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Lucia, with her father, waking up from hip surgery in January.

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.

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Snuggling!

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.

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Some of those early days…

But here we are today.  And suddenly, I felt it a great, extraordinary day, and choking back hot tears, I whispered to her greedily, “I wish I could keep you forever.”  Because I realized that the really bad days and the great days and all the ordinary days in between, they will just never be enough.  I’ve been so busy, struggling and surviving this particular climb through Lent that the hyper-ordinary had lost its resonance.  But what I’ve been made to realize, especially with Easter so fast approaching, is how critically our family, as every family, lives in the space caught between abundant life and impending death.

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.

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Lovin’ life.

 

And on most days, especially because Lucia’s so joyful and go-lucky, she reminds us that there’s no reason to worry over a future that not just for us, but for all of us, is by nature highly uncontrollable and uncertain.  But then again, when you’re so audaciously invited to taste pure, overflowing joy on a daily basis, there’s nothing ordinary about it, and it’s impossible to be grateful for your portion rather than ravenously thirst for more.  So I try to acknowledge the precariousness of not just this life, but all our lives as the unbending site of where cups also runneth over, because we have received the gift of truly knowing our daughter, which I think every parent can agree, is actually altogether extraordinary.

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When grief is unpalatable

We’ve spent the last few weeks caring for our daughter who just had surgery.  She was in a fog for about three days from the anesthesia and all the pain killers, and though she had no major complications, we felt like we lost her for five days or so to that medicine-induced haze and the severe pain she experienced intermittently.  Leaving home last weekend and this past Monday to head to work was particularly difficult because she wasn’t fully healed (she still isn’t), and she certainly wasn’t yet herself.

And when people asked well meaning questions I felt most qualified to answer them from my experience–my husband and I were struggling so much with seeing her usual bubbly self all comatose and uncomfortable.  Caring for someone who is in pain is painful.  Despite the seeming wisdom of it, then, when people tried to move past the pain–“but the surgery was successful, right?”  “But she’ll feel better soon,” or even, “Well, of course she’s in pain…”–it made me feel very misunderstood.  It felt like other people were trying to look past the real pain and grief of my experience because it wasn’t very palatable, convenient, or acceptable.  They wanted to resolve my grief for me, but when I came home and found Lucia limp in my husband’s arms or screaming in pain, I felt so alone.

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Lucia and her father cuddling on a Sunday afternoon.  My photo.

Precisely because I was grappling so ungracefully with my own grief these past few weeks, I immediately recognized something similar in my students’ tear-stained faces, slumped shoulders, and speechless, flustering sighs the Wednesday morning after the election.  Truth be told, given my own personal grief, I didn’t quite feel like beholding the grief of another.  But something nudged me that a void remains a void (or becomes even worse) unless a leader, even a trepidatious and imperfect one, steps into it.  And so, armed with some words of wisdom, some humility (after all, I knew that some students’ grief would be juxtaposed with other students’ celebration), and a deep conviction, I showed up to class that morning.

I showed up and told them I wasn’t really equipped to moderate their discussion but felt that we needed to acknowledge what happened, our varied feelings, but mostly that for the 15-20 minutes as a class we would covenant to make our space safe for all people, and to be respectful to especially those who were grieving.  Many students cried, other students aired frustrations, some students tried to move forward.  Very gently I nudged them back toward their grief.  When one student tried to tell others they were overreacting, I did the same.

I tried to carve out a space where grief was acceptable and welcome, recalling how alone I’d felt just that past weekend when my grief had been too much for others to bear.  It was only 20 minutes.  My students have a paper due this weekend. Life goes on.

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But I wonder sometimes what our country might have been this past week if we could have bore one another’s grief a bit more consciously and transparently and reverently  over these past 18 months leading put to the election.  It seems so much anger, righteousness, and denial in both campaigns speak to distinct places and manifestations of grief in more palatable clothes.  It’s always more acceptable in America to express anger as opposed to weakness, righteousness over fear, blame rather than humility.  But it feels decidedly too little too late when so many in this country were already hurting, but we mistook their grief for the ugly face-value emotions they presented.

Perhaps my greatest comfort in these trying personal and corporate experiences of grief is knowing that even when we fail, God’s empathy is deep enough for us all.  When we think we’re alone in our grief, we never really are.  But God is also not “on our side” as we in America are always tempted to think; God does not rejoice in our clanging campaigns of strength and righteousness but in our genuine holy moments of listening to one another.

In the dramatic days after the election, despite our penchant for progress, there have been holy moments of grief.  They are moments we want to move past, but what if they’re just the beginning?  What if they are moments that truly matter?  I learned this past week that even when we are weak, God can make us strong.  We can make space for those who are grieving to be heard, and while it may seem a simple step, it’s a vital one to healing.

We cannot heal if we do not break apart.  We cannot lead if we assume God is looking for wholeness and greatness and power.  Perhaps God can use us just as we are.  Perhaps our lament is pleasing to God’s ears, too.

 

What God Did

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.

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Fresh snowfall on the Princeton Seminary campus.  All photos are mine.

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.

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Blue skies and the grad tower peek through the snowfall.  

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.

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One of those sweet smiles that makes the world stop!