Tag Archives: parenting

Holy weakness

In the last few weeks, we’ve settled into a pretty natural rhythm with Lucia’s digestive struggles–constipation and screaming some days, vomiting others, and a lot of delight and sunshine in between. I feel like a broken record when people ask me how she’s doing, because we’re out of the woods we were in in 2018–pain management, feeding intolerance, hospitalizations–and yet, things are never easy. And if I’m honest with you and with myself, I’ve been feeling a bit weak and weary on this journey.

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Lucia crying in pain in mommy’s arms.  All photos mine.

It’s an unsettling, even repulsive feeling for me.

I don’t experience myself as a weak person. I don’t experience Lucia as a weak person either. References to weakness in common culture, even in Christian circles, often smart for me, because it seems like we prefer to instrumentalize and capitalize on other people’s weaknesses, particularly and presumably those with disabilities and diseases, rather than feel or examine our own.

Perhaps the problem is the blame, the shame we instinctively attach to weakness–for my own part it’s attached to the responsibility I carry as Lucia’s mother, a teacher to my students, a scholar in disability, a pastor to others–the feeling that I’ve got everything to lose and nothing to gain in embracing, showing, or even acknowledging my weakness. You can’t be weak when you need to be strong. And in a culture where mothers are so often blamed and scapegoated for society’s anxieties and ills, how can anyone be honest about their own trials, their own weaknesses, their own humanity?

But here’s an even greater truth I know: we’re not meant to heal ourselves.

In fact, if there’s one thing Jesus’s ministry teaches me it’s that healing is first and foremost connected and relational. It can’t happen if we keep to ourselves. No, Jesus’s healing ministry invites us in, all of us. It connects people to each other, in our own needs and messiness as humans.

And at the very center of it is a weak Jesus who wants to be with us in our own weakness! I kinda can’t get over that truth. I struggle to believe it, really.

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Inside the Duke University Chapel on a recent trip.

But what if weakness–vulnerability–is more like permeability, surrender, yielding, and surprise–elements that, like Jesus, are so not of this world that we rarely recognize or behold them as God with us, rather they are conjured and dismissed as mere weaknesses when they appear in plain sight?

So this Lent, I feel myself being asked to do this wild, holy, dangerous thing of living boldly in my weakness–letting you know that I literally forgot to have the oil tank filled and my house had no heat a few weeks ago because I was so scattered and thin. And even then, Jesus didn’t shutter or scoff at my humanity, but loved me (and people loved me, too) anyway. As mothers we’re pretty good at being with our kids when they’re weak, but we cloak our own weakness lest it makes us reprehensible, permeable, out of control, irresponsible. And so last Tuesday, after I took Lucia to her usual doctor’s appointment, she came long to mine. I’d been trucking along with a painful sinus infection, too busy and preoccupied (although clearly not with heating my home!) to even feel or let feel my own weakness.

But a little holy weakness may be just what our world needs–let us not forget that in all this bustle and brilliance and appearances, we are all on our way back toward dust. So in my dusty moments, let me be reminded of not just death but the hope and healing of the cross. I mean, you really don’t have the cross without a fragile, incarnate God made weak, and yet holy. And so if weakness begets sanctification, let me be bold in my weakness, heartfelt in cleaving to God and to others in this world that worships strong.

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Happy moment with Lucia.
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How it feels to be free

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.

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Face paint, complete with a smile.  My photo.

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.

 

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Lucia at her sleep study.  My photo.

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.

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Lucia smiling outside during spring.  My photo.

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.

 

Why luck’s got very little to do with it

“Your daughter is so lucky to have you as parents.”

It’s a phrase we hear quite often from kind people around us who must sense and feel how treasured our daughter, Lucia, who has special needs, is by us.  And I suppose they mean to compliment us, too, to tell us what every parent yearns to hear from time to time from his or her village–that all that work of parenting, the stuff that you do in the trenches doesn’t go unnoticed–that it’s not all for nothing, that even when you don’t feel like it, someone saw you doing a good job and took the time to notice it.

But especially when Lucia was really little, crying day in and day out from neurological and gastric distress, and even sometimes nowadays, phrases like these are often followed by a confession, something like, “I certainly couldn’t do what you do.”

When we were first learning about Lucia’s special needs, my husband confided in me how hard it was to hear words like these, well meaning though they were.  For him, especially, the notion that we were doing anything differently from other parents, or that we were different from other parents, smarted against the ordinary we knew ourselves to be.

I’ve also noticed that such ordinary phrases. not unlike “I’m sorry,” often have the power to divide rather than unite.  When I used to run off to far away places like Mexico or Puerto Rico or China and get to know Christians there, people used to tell me similar things, that they could never do what I was doing, that I was amazing, and that my life seemingly mattered more than theirs.  But that smarted against the reality I knew God to be creating: certain people are not better equipped, because it’s God who does the equipping.  I wasn’t more courageous or better or bolder, I’d had my own doubts and my own fears, and the words that conveyed that I was beyond those insecurities and inadequacies while others lived with them constructed a false reality, a world of dichotomies, a world in which some are quite extraordinary but others are not.

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Illustration by Giselle Potter that accompanied a recent article by Courtney Lund, a woman with a brother with AGS (the same condition as Lucia) in the NYT.

But here’s the thing: parents do extraordinary things for their children all the time, because love is a seeping, pervasive, unwieldy, extraordinary thing that causes us to do all sorts of things we never imagined we could or would do.  And I guess neither my husband nor I want people to forget that.  Sure, we feel encouraged to know that people see Lucia and we as a fabulous unit, but we also don’t want to exist in some weird, alternative special needs universe, where our family is abnormal or an anomaly, so much as one example among many examples of what love can do.

And that’s also what I’m learning.  I’m realizing that whereas it used to feel fundamentally uncomfortable to hear these words and these accolades, I can choose the way I respond.  And I’m beginning to love hearing them, because I get to respond by saying, “Well, we feel truly blessed to be Lucia’s parents.”  And that truth is one that I’m so blessed and compelled to say aloud–that despite the tears and the pain and the heartache, there have been just as many moments of elation, warmth, and joy.  I want people to see the joy and the delight that we have in Lucia, just as any parent has in his or her child.  Something about this response, perhaps like the response “I’m not sorry,” makes me feel that I have a bit more to contribute and to give to this world, rather than an ethos that sets me apart or above it.

Because the truth is also that my husband and I are in the trenches beside all of you, trying to sort our parenthood and do our very best, though our patience often fails us and our compassion can run dry.  But it’s our kids that keep us going.  It’s all our kids–the love that we have for them that is so much better than us–the people we become when we let that love lead us, the people that we are becoming that makes this all something more than luck that we’ve found one another, but rather grace that we get to love one another.

And that’s how I’ve begun to feel when I hear those words, “Your daughter is lucky to have you.”  I’m filled with humility and gratitude and grace, because it’s not so much true that Lucia is lucky.  But I know it to be true that it’s by the grace of God that we’ve been blessed with one another.

 

Signs of a life well-lived

I remember before Lucia was born pondering the items we put on our baby registry and strategizing with my husband about how we could keep the baby stuff to a minimum.  We have a really small apartment and we didn’t want to buy all sorts of unnecessary items that would clutter our space and our lives.

Nearly six months after her birth, I would say we’ve stuck to that minimalist lifestyle rather faithfully–we have a few larger baby items, but most of those are borrowed or used, and we’ve been calculating regarding the toys and small items we’ve acquired over time.

However, keeping all of those items we use daily in their right and perfect place in another story and a losing battle.  Inevitably pacifiers, books, toys, and burp cloths clutter the coffee table and couch, Lucia’s play gym remains on the guest bed in her bedroom, and the bathroom becomes overladen with washcloths in the sink and hanging to dry.

What’s funny is this very thing that we agonized about–having Lucia’s clutter take over our apartment and our lives–is something that now brings me great joy.  Now that she’s here, I don’t mind living with her stuff, being reminded of who she is by the things that mark her very central place in our life.  In fact, I’m very happy to let her things lay strewn about our apartment as a sign that we’re living life with her, not perfectly, but with deep commitment and love.

This is one of the things that’s surprised me about life and parenthood–learning to love the mess of it all more than I imagined I could.

What wisdom of the messes in your own life have surprised you?

**I liked my friend Erin Lane‘s post on a related topic, and this Washington Post article by a man who admits blaming his wife for a messy house and being in the wrong.

 

On true love and throwing progress to the wind

I’m slowly realizing that one of the most challenging parts of parenting is that it’s incredibly difficult to predict or gauge progress.

The Delaware Raritan Canal at the height of spring.  My photo.
The Delaware Raritan Canal at the height of spring. My photo.

I’m so eager to know what I’m doing, the energy that I’m putting into my daughter, is being directed toward a purpose.  Perhaps this comes from years of being a student, where hours of reading and writing usually directly translate into better grades, admittance into higher education programs, or awards and grants.  I am addicted to progress, but I’m realizing that it’s a worldly ideal that can often be crippling in its hegemonic and normalizing ways.

That led me to thinking the other night, what if we threw progress and developmental markers and perfect sleep to the wind as parents and focused on loving the children in front of us?  I remember when I was awaiting this baby my spiritual director told me that children first and foremost need love, and I remember feeling empowered, thinking, now that I can do.

But love isn’t always easy.

There are a million human ways we  complicate and condition and crowd out love.  Suddenly love begins to look and feel more like precision, weight, or caution, because we’ve replaced it with our own ideals, our desires, or our own assuming needs.

But true love is life altering in that it demands a total shift in the way we view and live life.  We must change if we are to love graciously and selflessly rather than greedily and humanly.

D&R Canal.  My photo.
D&R Canal. My photo.

This is why, I think, with parenting the “progress” is always paradoxically barely perceptible and earth-shattering.  We find that simultaneously across the long nights and endless crying, both nothing and everything has shifted.  We realize that despite our being wedded to a hegemonic view of progress, change and growth took their meandering course.

Not surprisingly, no amount of sheer human will and determination moves our children to progress, but rather the painstaking effort of love nurtures their being.  Our children rely so perfectly on us, but we come only by struggle to rely on God.  And yet the release of our lives to God is simply the greatest source of change imaginable.

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No longer searching or bound by our desire for progress, we are released into grace and love.  We are able to love because God first loved us.  And when we live with the knowledge of that fact, we find joy and contentment in the children that we have, not merely the people that they are becoming.

Grace for eternity

Spring on the university campus.  Iphone photo by the husband.
Signs of spring on the university campus. Iphone photo by the husband.

There is a mantra among new parents, oft repeated and spoken with a mix of exhaustion and hope, that “everything is temporary.”  

That is, the sleepless nights, the afternoons filled with crying, the growth spurts, they’re all necessary phases, but blips on the map of childhood so quickly turning to youth and adulthood, and life.  Young parents remark that if you can keep this perspective that everything is temporary, you can endure anything…temporarily.

I do find this advice helpful and comforting, not only for parenting, but for other aspects of life.  And I find it similar and perhaps more poignant alongside the wisdom that we are to abide in God as God abides in us.

Abiding has always been instructive to me, because it reminds me not to project outward from my fears, but to trust that there is more than this moment.  Rather than the existential promise of all of life being temporary, abiding reminds me of the importance of choosing and praying for faithactive, strident faith–that humbly believes and resolute, unswerving hope to accompany it.

It is only through abiding with God, gladly placing some of my fear and worry at his feet, and coming plainly to him with my raw hunger and thirst, that I am reminded that God abides with me not temporarily, but for eternity, ordering all moments around a life-giving sacrifice that brings eternal grace and peace.

This is what I choose and try to fixate on when life seems mundane and contrived, that what is extraordinary about the ordinary is God’s grace that makes each morning fresh and new, grace for more than this moment–for eternity.

 

Welcome to the world, my daughter

As I write this, my daughter is asleep in the other room.

And as I write them, the words feel so deliciously surreal.

She was born this past week  in the wee hours of the morning as the snow came down.  I was so looking forward to the surprise of whether she’d come out a boy or a girl.  We’d waited so patiently for her, through days and days of painful prelabor, during which we’d walked in endless circles around our apartment complex, through the snow, and waded through sleepless nights.  But I’ll always remember how when they finally held her up for me to see, it never even occurred to me to think whether she was a boy or a girl.

She was a gift.  She was my child.  She is our joy.

As the three of us settle into our new life of feedings, changings, and lots of sleeping (for her not necessarily, us!), I’m so touched by husband’s strong desire to be with his daughter during every waking and sleeping moment.  As I banged out some last minute work on my dissertation this weekend and he held her, it occurred to me that his requests for me to put her in his arms signal his willingness to adjust his life to her, while I had been merely trying to fit her into my already existing one.

With all the parenting buzz and blogs (and no, this isn’t about to become another one of them, don’t worry!), not to mention our time in China, we’re acutely aware of the missteps one can take by making their child the center of the universe.  But there is a shift in the orbit it seems.  And that’s not a bad thing.  Perhaps, and at best, I think, we’re all adjusting to one another, learning to yield and depend and be graceful with one another, and it’s making us stronger and better along the way.  We’re stumbling a bit in the newness of it all, but I want to welcome my daughter into new life, not just my life, but a shared, God-given, grace-filled one.

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Welcome to the world, Lucia Jayne.  Your name means light, and suddenly everything feels new.  The cliche is true: things will never be the same again.