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How to Fit In

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New shoes.

New shoes.

The other morning I drove away from my house and family toward work, an act always fraught with dueling impulses: the urge to go back and never leave again battling the temptation to head south for the beach and just take a few days for moi.

As I turned the corner on our street, my ambivalence already in full gear thirty seconds into the ride, I spotted a teenage girl ahead on the next corner: hand gripping the straps on her backpack, waist twisting her torso side to side in a rhythm born of boredom or anxiety–I could tell which if I knew her. And in that moment, I felt that I did know her, simply because I had been her. The girl at the bus stop trying to figure out what to do with my hands, how to either fit in with the kids around me or at the least fly under their radar so I wouldn’t have to talk and inevitably say something awkward. The feeling of being alone wherever I was. Of never quite fitting in. There in the pre-dawn haziness of a new day, I was transported twenty years back in time, and the familiarity of my awkward teenage-dom, unreduced in potency by the years, stole my breath. Some things never go away.

I have always struggled to find my place.

Growing up painfully shy left my nose buried in a book and my confidence at a constant low. The Mom told me I needed to smile more–“people won’t assume you’re shy, they’ll assume you’re not nice.” I remember thinking I was okay with that if it meant I didn’t have to make regular eye contact or conversation.

Now I’m a wife and mother and have settled into what feels like my spot in the world. But that doesn’t keep some moments from feeling off, or me from feeling misplaced within them. You know, like how I was supposed to be the mom in Target with the perfectly silent, poised and well-behaved children? Instead I’ve got Little Brother babbling at me like he’s trying to be heard over the band at a concert, and The Kid screeching because I didn’t take the route that leads past the donut counter.

My children read exactly none of the books on discipline that Amazon sent while I was pregnant.

As the years have gone on, I’ve found my place in waiting rooms, next to MRI machines, on hospital beds, miscarrying in the bathroom at work, sitting at therapists’ offices and across the desk from neurosurgeons who shrug way too often given their amount of training. In bed at night, I’ve complained to management that I signed up for none of these places. I’ve been assured none of it is a mistake.

That doesn’t make it easier. But it does make me reevaluate my fighting stance. It gets exhausting holding that pose–my legs tend to cramp.

“I was a hypersensitive kid—one of those kids who just thought that everyone was judging and hating them,” Mindy Kaling said recently in an interview. “Most of the people I know who experienced that as children end up being writers. They find creative outlets where they can use that–it’s sort of like the gift that they’re given later in life.”

When I read that quote, I wanted to both forgive her for the direction in which she took The Mindy Project its second season, and put down my copy of InStyle magazine to take a spiritual breather. Because all of a sudden, so much made sense.

There are gifts that come wrapped as pregnancies without a hitch, three-night hospital stays and a ten-minute ride home with the baby. Then there are gifts that can only be opened in the NICU after surgery at two days old and weeks of uncertainty and waiting. There are gifts of friends who live five minutes away with matching demographics and clothing sizes. Then there are gifts that come in the form of a weekday 3 pm phone call because we both happen to be free, when he tells me about his latest boyfriend and I talk about Little Einsteins–and how did we go from Manhattan and happy hours to this?–and then he tells me, “You know I’m always thinking about y’all, right? That I’m always here for you?” And I remember that there is a friend who sticks closer than a brother. There are the shoe-shopping trips that take five minutes and end in stickers and ice cream, and there are the ones that end in his screaming and my tears, which have mercifully managed to hold off until the parking lot.

There are the gifts we ask for and the ones we get. And somehow, they are all good. They are all willed. As a friend emailed recently: “What’s the alternative? Shitty stuff just happens with no purpose, no redemption?”

So where does that leave us? For me, it means a total redefinition of all of it: good. Bad. Gifts. Fitting in. Because the way I’m beginning to see it, I always have fit in–exactly where I was supposed to. I always do fit in–exactly where I’m meant to be. I’ve just spent way too much time trying to find a different spot. A better view. Then the current one sneaks up on me and I’m blown away. Like this:

Last Friday I took him shoe shopping. I told him about it before we left, in the car, on the way in. I even left the stroller in the trunk–something I swore I’d never do again after one trip that left me in the fetal position with a bottle of bourbon (Kidding!…?). We walked into the mall and crossed the Stride Rite threshold, a step that has always kicked off the tears. I braced myself.

No tears.

The salesperson held out the foot measurer. He balked, stepped back. “Remember? How I told you?” I whispered. He gingerly stepped forward. The trip ended with a triumphant dance at the outdoor fountain, our grins matching, conspiratorial: we had done it.

Sunday morning, we head to our small church, where two of the staff members have kids with challenges similar to TK’s. And that night, a girl in our small group at our small church talks about her calling to work with kids, how music therapy has brought them back to life in so many ways, and The Husband and I look at each other–seriously, there’s a therapy we haven’t heard of?!–and twenty minutes later I’m sitting on the floor in front of her, pouring out our story, right where I’m meant to be.

“But willingness comes from the pain,” writes Anne Lamott, and I can see now how sometimes that’s the only way he could have gotten me to finally say yes–to it all. To all the gifts. By showing me that they all are. Just take one step forward. “Remember? How I told you? How I showed you?” grace whispers, and I sink further into the couch where the two boys with matching faces are leaning into me, listening as I read a story they’ve heard a hundred times.

Peace Be with You

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beachGrace threatens all my normalities. –Gerald May

The Husband and I started visiting our current church about six months ago, after a “chance” (no such thing) meeting in New York that was preceded by a prolonged maternity leave from our previous community. We had both gotten comfortable in our Sunday-mornings-off schedule–a little too comfortable–ostensibly accommodating Little Brother’s naps while actually indulging our introversion and exhaustion. But after six months and a seemingly undeniable divine directive, we Google-mapped our way to Anglicanism.

Having grown up a religious mutt (charismatic, Episcopalian, Assembly of God, Church of Christ, Baptist, Insane Clown Posse) before finally settling in a Methodist church, I had no problem shopping around with denominations. It was helpful that I knew nothing about any of the theology and could make judgments based on youth group size and coffee-hour snacks. Once I entered the Reformed tradition, though (keep reading–I promise this gets less boring soon), I knew I’d never leave. Luther, Calvin, Augustine–you can’t go wrong with that kind of pedigree; plus, Redeemer kind of saved my life, what with introducing the novel idea of grace and all. But this new Reformed animal, the Anglican one, with its prayers and liturgy–it was an adjustment. Particularly the weekly practice of passing the peace, which immediately became my least favorite part of the service, due to all the talking to people that it involved. (Hey, at least it ended in a meal.)

After a few weeks, though, I noticed that everyone was actually saying it: peace. Not just, “Hey, I’m Bob.” (Which would have been weird indeed, as there are no Bobs that I know of.) Then I drove an hour southeast and met (in person) an already-friend who, it turned out, was also Anglican, and she said it as LB and I were leaving: “Peace be with you.” And she, like our fellow Sunday attenders, appeared to really mean them, these ancient and oft-repeated words that, despite their ancient-ness and oft-repeated-ness, had not lost their meaning. Then my other friend told me about how much she misses her former Anglican community, about the sacredness of the liturgy and the hole it leaves behind when not uttered each week, and I started thinking about this whole peace-passing thing. About peace, period.

When I decided to move from Alabama to New York, my mom engaged in some serious prayer. I didn’t know the details of it all until much later, once I had returned safely from the big city. One thing she divulged was a very specific request she made of God: that he would protect me with a big African American angel.

Yes, you read that correctly: a big African American angel.

weirdI thought this request was oddly specific, particularly considering my Southern heritage–after all, what would my grandparents have said? (Spoiler alert: something racist.) Then I remembered the time I was running along the East River and a gaggle of girls surrounded me, taunting me, then for no apparent reason (certainly not my resting bitch face, which was in the “off” position due to exertion) glanced around me, turned the other way, and took off. I’m not saying that an invisible-to-me African American dude materialized before their eyes, but I’m also not saying it’s impossible. All I’m saying is that I won’t be surprised if I get to heaven and Jesus is all, “Hey, sister. Let me introduce you to Jerome.” I mean, have you met God? He can kinda do everything.

Which I was reminded of recently, when I picked The Kid up from school.

On Mondays, I collect him thirty early for horse therapy. Every time, it’s the same: I give his name to the front office, enter our info into the computer, and wait in the area between the two sets of glass doors. I gaze down the hallway, and within a couple of minutes I see them.

Them.

One large brown hand enveloping TK’s small white one. One hulking six-foot-five frame alongside one bouncy thirty-nine-inch one. TK loves Mr. S, lights up as soon as he sees him walking down the hall toward him and the other kids in the morning at pick-up. Guess who else has two thumbs, believes in angels, and loves Mr. S?

I’ve had more of a comradeship with anxiety than I have with peace over the years: the nights spent lying awake worrying over everything from terrorism to whether I put the chicken out to thaw; the weeks of eyelid-twitching and heart-racing that sent me to a cardiologist in New York, who fitted me with a monitor that I wore until I quit that wonky job and the twitch and racing went away and I sent the monitor back; every time I send TK through the glass doors and away from me. I grew up with a fear that every time my mom got in the car, she wouldn’t come back–a fear that I’ve since transferred onto TH. How cute, this functional fear, this practical atheism that discounts the theology that formed me, the love that created me–the sovereignty and plan of grace thrown out for the illusion of control. For God’s sake, this past weekend, TH and I went to the beach for a work conference for me (read: for a kid-free, restaurant-hopping getaway for us) and cut to me in a conference room staring at the tilted chandelier, envisioning a Phantom of the Opera scene unfolding in the midst of a mouth sore discussion. Or cut to me later at the spa–a site of some of my deepest anxieties, due largely to the fact that I’m not doing it right unless I’m RELAXED–and I see an hourglass with sand seeping down and all I can think about is how my kids are getting older so fast.

Then cut to TH and I riding bikes on the island and a girl breezes past us on hers, blond hair barely contained by helmet as it floats behind her, and she’s grinning at us, like, “Can you believe this? HOW MUCH FUN ARE WE HAVING?” And TH remarks about how her smile, it reminds him of The Niece’s, that constant joy that comes with being cared for, loved. At peace. And I know that for so long, I called peace by the wrong names: lack of disturbance. Circumstantial. Storm-free. While all this time, I could have been a girl on an island near a hurricane, flying downhill with my hair in the wind and a grin on my mug?

“You would be very ashamed if you knew what the experiences you call setbacks, upheavals, pointless disturbances, and tedious annoyances really are. You would realize that your complaints about them are nothing more nor less than blasphemies–though that never occurs to you. Nothing happens to you except by the will of God, and yet [God’s] beloved children curse it because they do not know it for what it is,” wrote Jean Pierre de Caussade.

I can make peace with peace. I can even pass it, instead of just the control issues and the anxieties and the clamoring, to TK and LB. I can know it and I can pass it because it’s not what I thought it was. Nothing is really what I thought it was. Which is, I think, why they call it good news.

It’s evening, and I’ve just come out of TK’s room, where he signed for “more”–after I asked if he wanted more mommy. I lower myself into the bathtub and the water rises all around me but it doesn’t rise above me, and as I think about TK I’m not fretting. I’m not anxious. I get a glimpse beyond the veil, and I see the beautiful, epic lives that my children will have. And for the first time in a while–especially this time of day–I’m excited. I’m giddy, even–grinning, my hair floating behind me. And it feels like peace.

It’s Complicated

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horseyIt’s Monday afternoon, and I’m crying beside a stable.

Conveniently, I’m wearing sunglasses to hide this humiliating public display of emotion. If only I had been wearing some yesterday in the multipurpose room of the high school where our church gathers and the people sang: Holy, holy, holy. Merciful and mighty. I didn’t expect the tears at that moment, though I’ve grown used to them on Sunday mornings ever since finding churches that preach grace and letting that grace take hold of my heart. Even more so since having kids and finding all the feelings so much closer to the surface, unprotected by years-formed layers of defensiveness because those layers were stripped away by the exfoliating work of grace. By the conversion from a heart of stone to one of flesh, which is so annoying because those hurt a lot more. The tears flowed during the song–the same song that caused tears ten years ago in a sanctuary in Birmingham where I sat alone–as I was overwhelmed once again by what the words mean; by how holy is beautiful and awful and everything, but most of all for me lately, and in this moment, it is real. In this moment when all the worries and fears and highs and lows of the week rise together and bow down to what is bigger. In this moment when I am so uncomfortably and gorgeously confronted with how much I am loved and held.

A couple of days later, I’m waiting in the same jury room I waited in not two years before, and–status updates aside–I’m finding that I’m not quite as angry as I was then, not as curled up into myself and my own bitterness. And this is progress! I think–because I have three hours to do nothing but that–about all the revisitations I’ve been allotted in life. About how, when I was growing up, I prayed the never-ending prayer for others’ conversions, especially my dad’s, because that was when I thought there was one way to get saved and it went like this: NOW. By ME. I reduced the work of grace to bent knees in the family room, immediate church attendance, and a falling in line with what everyone else’s family did. I wanted salvation more for myself, from the inconveniences I felt, than for anyone else, but it sure sounded better when I put another name than mine in the prayer. And what I didn’t see, what I refused to see, was how heavily engaged I was in the business of trying to control people, of trying to turn them–with good intentions, mind you, which is often just the molten asphalt they pour on the path to the pit–into someone other than who they were. As if salvation were not my narrative to live but my job to enact.

I remember all this, and I think of The Kid, and I pray not for the saving of him from being the person he’s meant to be but from my efforts to change any of that. From my best intentions, which I easily confuse with the best plan. Because I am not meant to save him from any path as much as I was made to walk with him on this one. I pray to appreciate him for all he is instead of trying to turn him into someone else. To not reduce my dad to one sinner’s prayer or my son to one problem to be solved, but to see it all as a mystery to be lived.

Because there are times when we’d all rather be somewhere else, I think, as I visit my pregnant friend in the hospital, where she has held her breath for six weeks on the high-risk floor without knowing what will happen next. I think about my friends who would kill to be here themselves, because then it would mean that the needles and pills and disappointments were over and that it had all worked. I think about how grace nearly always threads beauty and struggle together so tightly that any time I’ve attempted to extricate one I’ve just ended up with one big tangle–how they must come together. I think about how many times I’ve tried to tease apart the different strands that make up TK, identify causes and diagnoses and answers, only to remain mystified–and then look up and see his incomparable grin and resolve to stop missing it.

We saw the neurologist last week, and he waved me over to the computer while TK lined cars up on the floor, holding up the tractor so I’d name it, and the doctor pointed to the MRI and read it to me. Named it while keeping the mystery intact. He ordered blood tests and, in his thick Italian accent, said it: You have a complicated kid. I’d smiled, saying, “Fuckin’ A, man”–in my head, of course, where most of my conversations take place–and thought about how the last time I’d heard an Italian accent that thick it was in Italy and I wonder how quickly I could get on a flight to Rome? Then TK held up a guitar and grinned at me and I thought about how much an “anywhere but here” mentality misses the point. Misses the grace. Misses the ride.

I’ve been in the business of measuring when I’m being asked to count: laps around the horse ring, laughs from the belly, blessings in my lap. The horse ambles back with TK astride it, grinning when he sees me wave. He didn’t cry at all this week, while I did, in between breaths of thank you. THANK YOU. As I wait for him to return to me, I think about how this isn’t the first stable to be the site of a miracle, how this moment is another revisitation, how they all are when grace is at play. I think again about what PW said, how it grabbed my heart and turned a light on, that it’s been the key this whole time: to relax and enjoy the ride.

Will Write for Attention

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troy abedLouis CK does a bit about marriage (it’s an old bit; he’s since gotten divorced, which makes the content both sad and prescient) in which he recounts his therapist’s recommendation that he take his wife on a date. “I went on a date with my wife, and you know what? I’m not going to call her again.”

My husband reminded me of this joke recently upon returning from our “vacation.”

I use quotes because, as anyone with kids knows (and some have written), any temporary relocation of the family unit would be more aptly described as a trip. I’ve been on vacations before, and they involve some combination of the following: free-flowing adult beverages, relaxed seaside dinners, aimless strolls through picturesque villages, books read cover to cover. Given these standards, the last vacation my husband and I took was our honeymoon.

This recent trip involved our family of four flying cross-country to California for the accomplishing of multiple goals (there’s another red flag–no vacation description includes the word goals), which you may cross-reference with the aforementioned list: a day at the West Coast office for my husband, meeting with a neurosurgeon for our son, my running a half-marathon (you can put running in the same quotes that enveloped vacation), and, finally, a family reunion. See any similarities with the Vacation Activities List? I didn’t think so.

We were on a trip.

Read the rest over at Mockingbird!

In the Dark?

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sunsetThe cries are changing–no longer do pterodactyl squeals pierce the night every other hour. Fading, too, are the urgent feed-me-now-or-I’ll-starve cries of the immediate post-newborn period. Now we have the whines of a four-month-old who wouldn’t mind a snack and a hug but can survive without them. It’s getting him there–teaching him to get through the night without both–that’s our job.

And it’s harder than the first time around, with The Kid, because he wore off all my outer layers and the defenses perched around my heart and that, along with the exhaustion of parenting a three-year-old and a baby, has left me raw and tender and open and vulnerable and all sorts of things that look risky, and risky seems bad.

Or it all can be, I’m finding, the very opposite of bad.

I pre-emptively warned The Husband that this next stage–the Getting Him Through It stage–may require more help of the masculine, milk-less variety, and he acquiesced. But when I threw in a mention of a possible night away for me just to nail it all down, perhaps a hotel? Well, then he laughed. Which was not an appropriate response. Because, after all, there has to be some benefit in becoming a human soda fountain for half a year and I know, I know, there’s the bonding and the magic and the precious baby and all the other wonders but here’s the thing: my life isn’t a hashtag (#sweetbaby #dearhusband #breastmilkisbest) and there’s room for shades of light and grey (fifty, apparently) and I would really love to sleep through the night sometime in the next decade, thank you.

But until then, there is the 1 am wake-up call. And all that comes with it.

Which, as it turns out, isn’t all bad either. In an “I’ll miss you when you’re gone…maybe” way that will make what is difficult now special in hindsight. And special now, sometimes. Because there’s the way he sleepily rests his head on my shoulder when he’s finished eating, right before I place him gently back down–the sweat on the back of his neck and the way he fits right into the nook between my head and shoulder. There are the moments of kindness when TH and I help each other out, even when we feel our energies would be better spent screaming. There’s the moment TH finishes diapering Little Brother up and places him in my lap and we salute each other. There’s the forced slowness that a less-than-restful night brings into the next day, the attention to detail that accompanies that slowness: the way I’m just sluggish enough to catch TK grinning at something Mickey Mouse said, or how I was too tired to look at my phone and instead saw LB gazing adoringly at his big brother. There’s the way exhaustion can splinter you and undo you and reduce you to bare bones and brass tacks, but those brass tacks can really gleam in the right light–so is it really a reduction?

Long nights wear us down and slow us down but so does grace–because grace makes us slow down enough to see the story. And then, to tell it.

Part of seeing the story, part of getting to the point of telling it, is recognizing which parts don’t belong. Which parts aren’t truth and need to be released. Because the darkness, the 1 am lack of light, makes some thoughts loom large and frightening, like how I need to start potty-training soon. That thought rolls into an overwhelming fear that it will not work, will never work, and he’ll be eighteen in diapers. There’s the comment on Facebook from a mom who likens her struggle to mine and tries to fit them both into the same box–a well-meaning one, maybe, but the thing about us right now is that we’re in a sort of in-between, in a spot of mystery, and that mystery and tension are not going to be solved by someone else’s suggestion of what I call my kid. There is an urgency to that suggestion–an urgency I recognize from my own life, my past, I hope–the urgency of “hear me, accept me, validate me.” An urgency that looks like a relative of hurry. But there is the life defined by diagnosis, and the life defined by grace, and there is the next night, when I get another comment, this one from a mom who doesn’t demand conformity, isn’t marked by urgency, but leaves room for mystery by adding, “Maybe you too. Or maybe not. Either way, we’re over here should you need us.” And at her suggestion, I find out about another way of learning, of how some kids see patterns that the rest of us don’t because they look at the world from a different perspective, and whether this acronym is where we land doesn’t matter as much as the fact that I hear echoes of TK in its letters and this, this, is grace–not demands, not hurry, but a hand offered, a reminder that the mystery can be the door to the beauty.

Because that’s what happens when you keep watch at all hours, when you live moments in the mystery and the certainty, the not knowing and knowing, the messy and the ordered. Your eyes learn to adjust to all sorts of light, even the dark-light, and see the beauty in each. You learn that groans of frustration can turn into prayers of supplication and sometimes even gratitude. You learn to look up in time to see the sun setting, and rising.

It’s the end of another day, and I don’t know what the night holds–rest, or the opposite. I’m warming a bottle and TK is arranging his toys like he does and TH holds LB. This is when we’re all together, before TH and LB head upstairs with the bottle and TK and I stay downstairs with the TV and the pump. I’m standing over the sink, back aching again as I wonder how long before it just gives up and goes out, and TH calls me over. He points out the window, tells me he knows how I love them because I’ve made him look at so many, and I see it: the fire in the sky that is the sun going down, orange and red and purple and blue, light flaming before it fades out only to come back again the same way a few hours and maybe a feeding later. And when he points the beauty out to me, I realize that there are days when the sunrise, and the sunset…you can’t even tell the difference.

Here's the Deal

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timanneI write about The Kid’s neck saga here often, but in the interest of providing you with real details to pray for/think about/send non-religiously-specific love and light on behalf of, here’s the email update I sent out earlier this week. Your encouragement and support mean the world to our family–thank you for being a part of this story with us.

 

 

Dear Friends,
With our family preparing for some major developments with James, we wanted to update you about what’s coming next. We value your thoughts and prayers and all the support you’ve provided in countless ways.
After exhausting every possible (and less invasive) avenue to correct James’s neck tilt (including PT, outpatient surgery, therapy collars, and Botox injections), our neurosurgeon recommended an inpatient surgical procedure that will involve the following:
–another release of the left side neck muscles by the same craniofacial surgeon who performed the last one a year ago, since without correction of his bony anomaly the muscles have tightened back up;
–shaving off the outer part of the first bone in the spinal column (C1 vertebra)–specifically, the part that is tilted upward and pressing against the skull and possibly some nerves in that area;
–placement of a device called a halo. The halo consists of a ring that encircles James’s head at the eyebrow line, and some (7-12) pins will project inward from the ring and through his skin just up to his skull, providing torque that will keep his head in an upright, centralized position. Metal “uprights” will come down from the ring and insert into a vest around James’s torso that render his head/neck essentially immobile, thereby maintaining the head position and allowing for healing of the shaved vertebra. He will wear the halo for a number of weeks, possibly up to 3-4 months.
The surgery will take place next Wednesday, January 8, at an estimated start time of 12:30 pm (we’ll get a call the day before with the definite start time) at Children’s Hospital of Atlanta, Scottish Rite. Two doctors (the craniofacial surgeon, Dr. Williams and the neurosurgeon, Dr. Brahma) and an orthotic specialist (Richard Welling) will be in the OR performing the release, C1 adjustment, and halo placement, respectively. The procedure should take two and a half hours and be followed by a possible night in the ICU or direct movement to the hospital floor with a 2 day (or longer–up to a week) stay.
Okay. So those are all the names and technical details. Here are the issues really weighing on our hearts and minds, for which we’d love more of your thoughts, prayers, and support:
James can’t go to daycare while wearing the halo, so I will be staying at home with him. He requires constant one-on-one supervision as the halo cannot be taken off. It weighs about 5 lbs and will affect his balance-essentially, he’ll have to reorient his movement, walking, sleeping, eating, playing, EVERYTHING–according to his new head position. Mr. Welling told me that it will feel like walking down a flight of stairs while looking straight ahead. James will not be able to bend at the neck, only at the pelvis. So you can imagine the adjustments in daily life this will require: feeding him, playtime, walking, getting him in/out of his crib, changing him, dressing him–all these daily activities will be different, and a lot of that we’ll figure out as we go. Which is NOT our preferred method of doing things, by the way–we are planners, and we are definitely not in a plan-friendly season of life right now.
So Jason and I need prayers for patience, strength, and all that good stuff as we enter what will undoubtedly be a physically, emotionally, and mentally trying time. We are especially not looking forward to adjustments in sleeping, since James likes to move around a lot during the night and sleep on his stomach, neither of which he will be able to do–and neither of us particularly enjoyed sleep training the first time around. (Read: WE HATED EVERY SECOND OF IT AND NEITHER OF US DOES WELL WITHOUT SLEEP AND PLEASE GOD SAVE OUR MARRIAGE.)
Please pray for James’s protection from falls, which can be damaging and just need to not happen–and that’s a huge burden of responsibility that falls upon whomever is watching him. (Read: James is two and two-year-olds can basically fall down while standing still so this is scary.)
Please pray for the surgery itself: safety, no complications, doctors’ wisdom, etc. And for the annoying little detail about the late start time meaning we will have to deny him food and milk from the time he wakes up on the 8th until the surgery is over, meaning we will have a hungry toddler on our hands who doesn’t understand why he can’t eat. Then we will take that toddler to the hospital and wait for two hours in the surgery center before they call him back. Good times. (Note to self: check on CHOA’s BYOB policy.)
Some of these concerns are small and some huge. I have no problem telling you that I am not up to this assignment; I am imperfect and weak and impatient and prefer to be in control of every little detail. But there is good news for all that, and all of the above:
None of this is an accident, or an aberration from the plan specifically designed for us and James. I know everyone reading this represents a variety of beliefs, but here is ours: this upcoming season is in many ways where we have been headed all along, even though we had hoped to avoid it. But since we haven’t, we know that we are being led and held through it by a love that is stronger than our (my) need for order and control and predictable outcomes. And since that love is ALWAYS with us, it means that we don’t have to wait until this is all over to be joyful about it and thankful for it. Even though it sucks that James has to endure what hardly seems fair, we know that there will be beauty and redemption in it far beyond anything we could have manufactured for him on our own. So though there will be plenty of tears and frustration, there will be so much more–and that is where we hang our hats. Or halos, as it were.
Please feel free to forward this to whomever you think may want to be involved in praying for/thinking about James, and we’ll update you on how the surgery goes. Now I will get to work installing a wine bottle donation center by our mailbox–we especially like reds and champagne.
Love,
Stephanie, Jason, and James

What a Story

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rightI always wanted a boy.

My sister and I have five female cousins–the family names end with our generation on both sides. I grew up babysitting boys, wrestling with them on carpeted floors and watching their basketball games. In one way or another, it seems I’ve always been waiting for a male to show up: from The Dad’s business traveling in my early years, to the decade-plus on the dating scene until The Husband showed up, to the months of pregnancy and ultrasounds waiting to see The Kid’s face in person. The day they told us he was a boy, I cried in relief and excitement.

Those moments of discovery and ecstasy, though, they’re the stuff of pictures and memories–but they’re not where life is found. When they stand at the altar and make promises, they are as young and beautiful as they’ll ever be in this marriage and their view is of a dance floor and cake, not of open bathroom doors and sickness and tense disagreements and struggling not to keep score of wrongs. When the test reads positive, she doesn’t anticipate the drop of blood that signals the end before it began. When TK popped onto the ultrasound screen, all organs intact, we didn’t see the x-rays and CT scans and MRIs and physical therapy looming ahead.

I wanted a boy. I got so much more.

I read somewhere that when women read books, they want to be told the truth. When they see movies, they want to be lied to. The amount of truth we want is commensurate with our time commitment: I invest weeks into a book, so go ahead and tell me the whole story. Years into a TV show, so give me the characters straight, warts and all. A couple of hours into a movie, so how about that happy ending?

But life–life, in its (hopefully) decades of passing through, and you’d think that such a commitment would promote the taking of hard news with ease. You’d be wrong. At least when it comes to me. And I don’t think I’m alone here.

The pediatrician called and invited me to her office to discuss TK’s MRI report in person, and I showed up, all shaky hands and sweat. For thirty minutes we sat on the same side of her desk and went through three pages of medical jargon that I’ve come to understand over years of wondering whether I picked the right career path, of learning a language I never knew I’d have to speak so intimately. There were definite findings, follow-ups needed to determine whether surgery would be best–spinal surgery, for the love of God–and other discoveries, as are wont to happen when you open the hood and peek inside because if there’s anything we human beings need, it’s to know everything. And yet, we don’t. There are potential implications to TK’s development, still question marks at this point, and so we plan on more MRIs down the road, speech therapy, a visit with the neurosurgeon. Some answers, leading to even more questions.

After the news, I stumbled out the front door into the sunshine, clutching the report, thankful for sunglasses and the refuge of an empty car. Before I reached it, the sobs shook me all through and the ugly crying came, gasps and snot and heaving. As I reached for the door handle, I felt them–through the tears and uncertainty, through the desire for a different scenario–felt the words pierce my heart and the presence surround me more sure than the car in front of me or the sun in my eyes, a flood of grace baptizing me with truth in broad daylight:

You are not alone.

Relief overcame me, beyond even what I felt on my wedding day or during the ultrasound, beyond anything that can be summed up or discarded by a radiologist’s report. You are not alone. You are NEVER alone. And while I can never overstate the value of all of you, of my family and friends that walk this road with us, I knew that my heart was being told of unseen things in this moment, of loss borne on my behalf that makes it possible for me to never have to fear the absolute worst; grace that means every point on that paper has a purpose and that what doctors call abnormalities are there by design; love that makes everything sad untrue and uses this–yes, even this, especially this–to turn a life from a list into a story.

Sometimes the answer doesn’t start with “because.” Sometimes it starts with, “I’m here.”

And now, even as we wonder over the implications, TK is taking more steps and laughing at our jokes. He grasps my finger as I lead him with my right hand, shuttling him into more independence while I am called to the opposite. I’m a fan of anonymous living, of flying under the radar, and then this happens, and I feel the ripples stretch outward, tying me into a community that I never knew. The mother who gives birth alone, ring recently removed from her hand as the divorce papers are drawn up. The parents who sit in the waiting room entrusting their child’s life to another person’s skill. The woman waiting for the mammogram results. TK’s sedation doctor, who I thought at first was a little cold until a trip to the bathroom allowed me to overhear the nurses asking about the son he is adopting next month from Ethiopia. Fantine, if you want to venture into fiction like we did watching Les Mis Friday night (dammit Anne Hathaway, I’ll like you JUST THIS ONCE). A couple of year ago and I would have pitied her emotional display; now I feel the agony of a mother who can’t fix everything for her child and I know that these are the stories that make us more than strangers. I am called to community just as I am called to dependence, just as I am called to narrative, to mystery, to the beauty of a life that I would have reduced to bullet points had I claimed the easier scenario.

In my hands, I hold a paper that doesn’t begin to tell the story of TK.

I wanted a boy. I got my boy. So much more.

We Are Boston

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“No man is an island,” wrote John Donne, a blind man who could see, and so today, we are Boston.

We reach across hundreds of miles and clasp hands: we, the broken yet headed for healing; the wounded yet being bound up; the out-of-the-garden with faces turned toward the heavenly city; the not-yet moment by moment transforming into the now. We acknowledge the heroes seen and unseen, watching through eyes blurred with tears and not-knowing as people offer homes and water and wheelchairs and a cowboy-hat-clad peace activist holds an artery in his hand even as our hearts behold the one who collects every tear. We are a nation with its beginnings in this city, a nation with a history of turning its wrongs into rights, built upon faith in one who makes the broken new. We press on in the midst of chaos because the deepest part of us, beyond words and explanation and evidence, knows that every fragment will be claimed and named and made whole.