Monthly Archives: January 2014

Something to See Here

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twoRemember last week when I talked about letting The Kid lead me around for a while? I felt so poetic and evolved making that observation…then, on Sunday, we went to the park. And it was a total debacle.

This halo experience, as I’ve related, has been beyond better than we expected. TK has not let seven pounds of carbon and titanium slow him down for a second, and most days he can be spotted running up and down our driveway or trying to climb the stairs two at a time. If anything, the “this hurts me more than it hurts you” principle seems to be applying here–and I have the scars to prove it: red indentations scattered across my forearms from holding him at the sink for hand washing; bruises on my chest from the forehead bolts he doesn’t seem to notice as he dives in for a cuddle; sore muscles from heaving him onto his changing table. I’m not complaining (more than my usual amount)–these are battle wounds I’m only too happy to endure if they lead to an upright noggin. And, to be fair, he’s the one with the three-inch-long incision in the back of his neck, along with a smaller one on the left side for good measure. To be clear: I’ve never disputed the fact that he’s a better person than I am.

The physical aspect of this experience always jockeyed for first-place position on the concern wall of my mind with the psychological aspect, anyway. There is the emotional wear-and-tear that comes with watching your child suffer, and wondering if any of it will lead to a James Frey-esque stint in rehab for him down the road. There’s the mind-numbing, poor-judgment-ridden, sickly nature of exhaustion. TK’s progress has trumped both of those possibilities and left them languishing in my memory. And, until recently, a third possibility was eating his dust too. But that possibility had more to do with how I handle the halo than with how he does. And I’m not quite as resilient as my two-year-old.

For most of my life, I’ve searched for a comfortable spot under the radar. I realized, after years in New York and under the spotlight of grace, that I was just afraid of being seen. And with TK’s hardware update, I was concerned about taking him out in public: the stares, the questions, the scrutiny. I was afraid of my short fuse and snarky retorts and how it all might combine into a combustible situation that left me getting Tasered on the floor of Target. But lest the ire-fueled side of my personality get too much attention, allow me to admit that I was also concerned about over-explaining our situation to strangers; about caring way too much what they were thinking; of not withering under their stares.

I was afraid of being seen, which is another way of saying I was afraid of being vulnerable.

You can guess how many effs TK gives about the stares and questions: exactly zero. I swear he doesn’t even know the halo is there. And for a while, I was immune to others’ reactions too. If not caring what people thought was cool, you could have considered me Miles Davis. Then we went to Target and this one woman gaped at us openly. Same thing at the grocery store, this time while The Husband was with us. “I’m going to put a sign on the halo that says, ‘Take a picture–it lasts longer’,” I seethed to him in Publix, my interior Department of Self-Righteous Anger on high alert. With all the major crises so far averted, I was freed up for indignation. (It didn’t help that when I was returning TK to his carseat in the parking lot, I lost my grip on his seat belt and punched myself in the nose. Hard.)

Then yesterday, TK and I met The Sis and The Niece at the park. Things started off well: TK gripped my hand obediently as we shuffled along the entry trail. The Niece had even demanded to wear a helmet–maybe she wanted a “special hat” too. So there we were: the sisters and their spectacularly-crowned offspring. Then half our party headed off to the play structure and TK and I were left to navigate some dirt paths full of dogs and runners, and I committed the Cardinal Sin against a Toddler: I told him no. You know, to KEEP HIM FROM GETTING TRAMPLED. And he had a screaming meltdown right there in the park.

It went downhill from there. TK never recovered from his offended need to choose his own path (hmm…what’s that like?), and The Sis and Niece had their own problems: as they approached us so we could leave together, I heard the words, “Well then you can have water for dinner!” In the parking lot, a disembodied voice echoed from inside a minivan, “BUT I DON’T WANT TO GO HOOOOOME!” TK did his part by plopping onto the ground and wailing.

Oh, the magical time of childhood.

Our goodbyes were terse as I hustled TK into the car and wheeled out of that dystopian nightmare called Sunday Afternoon at the Park. I explained to my nonverbal son why he didn’t have the right to behave the way he had. We got home and I handed him off to The Husband in exchange for a glass of wine. And for the next few hours, I revisited the scene in my head and asked myself what really bothered me about it. Because toddlers? They act like assholes all the time. Everyone at the park knows it. But not every toddler is in a halo, and not every mother-son duo is examined the way we had been. No flying under the radar here.

And I realized that much of parenthood–much of loving anyone, much of living, period–means being willing to remain in the tension of unrealized potential. Others’, and our own. Much of marriage means that. Much of friendship. And much of grace means knowing who does that on our behalf.

Remaining in the tension of waiting for words, of anticipating halo removal (it’s FEBRUARY 21ST, Y’ALL!), of hoping for an upright noggin, of wondering whether he’ll get a sibling, of taking each other for granted, of learning to communicate the truth in love, of caring less about what strangers think. Of trusting that grace always ensures that our best interest is the one this is all headed toward, even when we feel like we’re in the dark and the road is long and we keep getting punched in the face.

Without Fear

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upMany years ago, I read an article (it appeared either in Journal of the American Medical Association or Us Weekly, I can’t remember which) about a young girl born with a rare nerve disorder that left her unable to feel pain. My initial reaction to this story, since at the time I was in both dental school and a bad relationship and therefore knew a little somethin’ about pain, was something like, “What?! Awesome. I’m totes jeal.” I went on to read the parents’ account of why I should NOT be totes jeal, and it was a narrative that cited hundreds of injuries endured by the girl in her short life–burns, broken bones, head trauma—all because the absence of pain as a warning left her fearless in the face of danger.

I think a lot about how fear informs our lives, likely because I’ve come to recognize how far from immune I am to it. As The Husband and I faced The Kid’s impending surgery and halo season, I named my fears nightly in prayer and battled them daily in my head. None of them—none of them—have materialized. In fact, this experience so far has been (like much of life) a much different one from what we expected. Far from nursing a sullen invalid, I’ve been chasing a fearless toddler, a toddler who runs and jumps and dances through his days as I struggle to define the proper amount of supervision. He has fallen, but without incident—either he or one of us has always broken the fall with an outstretched hand. He’s sleeping pretty well, given the bolts protruding from his forehead and the fact that we’ve had to turn his crib into one wall of a fortress bordering a makeshift floor bed of mattress and couch cushions surrounded by pillows, a dresser, and two actual walls. We’re improvising.

So things are going well, considering. Which doesn’t mean we don’t still need prayers, but the nature of my own praying has changed: I’m still uttering words regarding his protection and healing, but there’s also the small matter of myself. Of how, when I am no longer distilled down to “just making it through the day” and “hospital survival mode” and “please return my child from the OR to me alive”, I tend to allow the petty things to sneak back into the picture: who emptied the dishwasher last, or how much messier the kitchen counter gets now that TK is pulled up next to it for meals, or if one of those damn bolts pierces my boob one more time…

And then there’s the Worst Case Scenario element of my thinking, evidenced by a text exchange with a like-minded friend who asked last week how it was going. I gave her the good report then followed up by asking her what it says about me that I’m waiting for something to go wrong.

She said it means we’re the same. So I’m assuming there are some of you out there who relate, as well.

I’ve been reading a gift from The Mom–Anne Lamott’s aptly-titled Stitches. And it appears Anne has also been reading my diary, because both of us spent much of our lives hustling into the next moment, attaining the next accomplishment, defining ourselves by those achievements. She writes:

I was good at being good at things. I was good at forward thrust, at moving up ladders…Unfortunately, forward thrust turns out not to be helpful in the search for your true place on earth. But crashing and burning can help a lot. So, too, can just plain running out of gas…That was the moment when I lost my place of prestige on the fast track, and slowly, millimeter by millimeter, I started to get found, to discover who I had been born to be, instead of the impossibly small package, all tied up tightly in myself, that I had agreed to be.

It occurs to me that much of growing up involves learning to be afraid, or at least learning to recognize danger and avoid it. But so much of my life, before grace had room to move, was a misdirection of that recognition–calling things “dangerous” that were actually the road to real living. My great fear was falling apart and being exposed as not being good enough or smart enough or “together” enough. But when that actually happened, I found out that I wasn’t any of those things–but rather than being the end of the story, it was the beginning. It was time to stop planning life and start receiving it.

Now that the day of surgery and the hospital stay are over and halo season is upon us, there’s a noticeable lack of forward momentum, a rhythm to our days that is less about accomplishing goals and moving past them than it is about just playing, being together through this. And I realize how much that old fear of my being unmade informs my life now, because it was when I was unmade from the person I had made myself out to be that I began to be made into the person I was meant to be. I recognize as dangerous now the things I used to cling to: worrying myself into a panic over what others think, trying to “fix” people, formatting my life in such a way as to avoid any semblance of struggle or mystery. Because the struggle and the mystery have yielded such beauty lately that it’s taken my breath away. And so I walk beside TK, who cannot look down but so often does look up, and let him lead me for a change.

Down to the Bone

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bed“God is making us spell out our own souls.” –Oswald Chambers

I’ve been in the hospital three times with my son: the first, when pre-term contractions forced me into a thirty-six hour stay, and I lay confined to a bed with a fetal monitor attached to me. His heartbeat punctuated each moment as I willed him to stay in there and keep growing. Then there was his birth, and the extra-long stay provided by my C-section, marked by our introduction and sleeplessness and awkward feedings.

Last week our family spent three nights on the neurology floor, and once again I held my child in a hospital bed.

When we arrived at the Day Surgery Center on Wednesday, our first sight was our Karl-Barth-reading pastor, and I immediately burst into tears at the kindness and surprise of his presence. When they took The Kid back and I burst into tears again, our pastor walked down to the cafeteria with The Husband and me. We talked about the surgery and recovery as I ached to get back to our room and wait for the phone call update from the OR. Our pastor mentioned, lightly, how difficult times like these could be on a marriage. He prayed with us. Then TH and I told him goodbye and waited for doctor appearances and a returned son.

The surgery went exactly as it should have, we were told. The recovery nurse called and said they were taking TK to his room, that we could meet him there. When I heard the bed being wheeled down the hallway, I took a deep breath. He would be different, groggy and confused and weighed down by seven pounds of metal and plastic, pins and vest. I feared my own reaction–that I would be overcome with sadness at his appearance.

But they brought him in, and it didn’t matter. He was just ours. Seven pounds of healing equipment, and our baby.

Nothing we’ve done so far has worked, which has landed us here, in this device and with this recovery, because the problem was the bone. The whole time, the issue lay deeper than muscle and further than therapy or Botox could reach. And so all our searching and trying and failing has led to what I once considered the worst-case scenario.

But is it? Is it ever, if all is grace?

There were the moments in the bed, hours full of them, and the feel of a tiny hand on my back as I drifted off to sleep, coupled with the sound of TH’s breathing on the pull-out bed feet away. There was the silent meeting of eyes in the near-darkness, TK watching me, knowing the who but not the why. There was our return home, when I placed him on the floor in the only position he could maintain–lying on his back–and watched as he pulled himself to sitting, then bent over and pushed himself to standing, then grasped TH’s finger with his hand and began to walk. A miracle unfurling before my doubting eyes, victorious laughter and beauty in metal and stitches. There have been the tiny kindnesses between TH and me, the ways we have looked out for each other and been for each other when it’s so much easier for me to be against, when the mundane monotony of life so easily makes me forget that we’re on the same team but this–what can understandably break a couple down to weariness and resentment–has been knitting us together. There have been the dinners delivered and petitions prayed on our behalf, endless support lifting me above the difficulty and keeping me vigilant to the redemption happening right in front of us. I have felt it all and know it to be true:

This halo is healing TK, but it’s also healing me.

Because what could have been a period to endure has proven to be an advent of gifts, one of top of the other so that they all come crashing down in a stunning display of mercy. All the ways I’m being loved out of myself and into grace. The forced slowing down and letting go, the letting-the-dishes-wait because he needs my finger to grab and my eyes to watch. The cries in the middle of the night and the returned stares, eye meeting eye, and I know that he knows too: that this is real love, this faithful being-there. My greatest fear, the sleepless echo of the newborn days, and how does it play out? With these nighttime visits and midnight smiles like a secret between the two of us. What we will always share. What changes us. It feels, sometimes, like a do-over of the first few months of his life, when all I felt was exhausted and inept and at the end of myself. Now I know that’s exactly where I am–at the end of myself–and it’s a gift because this is where grace begins. And how gloriously appropriate that it feels like a second chance, because that’s exactly what redemption is.

It’s what redemption is, and what grace does–brings me to the thing I feared most and leaves me saying thank you. Thank you, thank you. 

I sit beside TK in the sunroom, the place where he relearned to walk and I’m relearning to love, and the brightness of the mid-morning sun strikes us both. He squints his eyes and keeps playing. Not long ago, I would have shielded my face, searched for shade. But today I sit there right in its searing glow and keep playing too.

Directions to Here

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belly

Who am I? How did I get here?

Spring, 1987: I’m the girl hiding in the back of the line, shuffling her feet and staring at the ground, hoping this is far enough away from getting called to bat and embarrassing myself in front of the rest of my class, and if I can run out the clock then it’s a straight shot from here to home where I can escape with a book.

Summer, 1996: I’m the college sophomore who finally found a social niche and a safe place to come out of my shell, so now I’ll finalize my plans to be engaged just after graduation and married not long after that, and these three-hour labs will be my ticket to a career that will give me time for the family I’ll have soon.

Fall, 2002: I’m a graduate student running with the middle of the pack for the first time in my life, and this flirtation with mediocrity has saddled me with some identity issues that will lead to mistakes…and a new place.

Winter, 2008: I’m the city-dweller who rediscovered her faith by way of grace and is on her way out to her last first date.

Today: I’m a dentist on sabbatical, a wife learning that marriage isn’t an institution set up just to meet my needs, and a mother twenty-four hours away from letting them place her son on an operating table.

I watch him in the monitor now, his butt in the air, arms splayed out. He can’t sleep like that after tomorrow, I think, and tears rise along with panic over all I can’t control. All I can’t predict. None of this was on the sheet of legal paper I filled out years ago, the life plan I constructed from an organized mind and a clueless heart.

I think about the wife and mother I would have been a decade ago and whisper a prayer of thanks for the things that don’t work out as we expected. All that I asked for, and it never came close to what I got. I’ve been a reality-escaper, a control freak, an identity crisis. These self-inflicted shadows lurk about, always willing to make a reappearance, to have their recurring role bumped back up to series regular. I have not arrived; but grace has made me more susceptible to the truth.

Here is a truth: I am no match for the road that lies ahead. And as I battle the fear that, when named, is called Not Being Enough, the voice residing in my heart calls me to stop fighting and rest, because there is redemption in the fact that I was never meant to be. Enough has a name, and it is not Stephanie.

courtesy William Koechling, Twitter

courtesy William Koechling, Twitter

 

So I remember other truths, like those  told in stories, and how it was Tolkien who wrote, “a great lord is that, and a healer; and it is a thing passing strange to me that the healing hand should also wield the sword.”

Well, it is passing strange to me too. But I know the hope in its truth.

Because there are the other moments, the glimpses of glory, that remind me. We have a story here too.

There were years of disappointment, then vows taken and a double rainbow. There is an emptied dishwasher even though I was an ass the night before. There is a tiny hand that wraps around my finger and leads me. And just the other night, there was the tug on my jeans leg and the whisper straight to my heart: “Mama. Mama.” 

The Husband and I whipped our heads to him, then each other, eyes wide.

“Did he–”

“I think he just–”

I dropped the plastic bib and followed where he led.

Tomorrow we will be the parents in the hospital with the child in the halo. In the coming weeks I will be the mom fielding questions about what that is in a reality that is inescapable, a situation that is uncontrollable. But because of grace I have an identity that is unassailable.

How did we get here? Love brought us–a love bigger than I am. Love will carry us not around, but through this. And love will make the whole thing beautiful.

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