I once was a fan of New Year’s resolutions–made a list (also a huge fan of lists!) every year. Every year, that is, until grace invaded my life and wiped the sheen off all my self-improvement projects. Now I’m more accepting of my constant work-in-progress state of being and the hand-in-hand partnership between my submission and God’s plan.
But if I had considered such a list twelve months ago, it would have been brief and it would have gone like this: Make 2014 less sucky than 2013. This time last year, I was finishing up a 2013 that included a suspicious mammogram, a job loss, and a miscarriage. Not to mention the spinal surgery scheduled for our two-year-old in January 2014 that loomed ahead of us, casting a shadow over our holiday season and leaving me feeling as though I was staring at 2014 through the barrel of a gun. (Disclaimer: I’ve never been an optimist.)
So the second week of 2014 found our family of three spending three nights in our local children’s hospital with a toddler in a halo brace. He wore the device for six weeks and, kicking off the new year with a bang, crushed it, refusing to be slowed down by eight pounds of carbon and titanium pinned onto his skull and attached to his torso via a lambswool-lined plastic vest. We thought we had it made, especially when, halfway through Halo Time, I found out I was pregnant. Things were finally looking up.
Cue the Jaws theme music.
Here’s the deal with our son: from the time he was born, he tilted his head to the left. The doctors and the physical therapist thought that it was a muscular issue but after therapy and muscular surgery, the tilt didn’t resolve. So they did a CT scan and MRI, which is basically the medical form of opening Pandora’s box: not only do you find what you were looking for, but you find a whole lot of other stuff as well. The scans revealed that he had a tilted vertebra in his cervical spine (neck area) that was likely pinching a nerve, hence the tilt–and the surgery to relieve it. We also discovered that he has something called a type I Chiari malformation, which is typically not a big deal–lots of people have it and don’t know it (because they haven’t had symptoms, or CT scans and MRIs). But the malformation affects a part of the brain that controls motor planning, which is a precursor to action that I never even knew existed before my son came along.
SO. That’s the medical background for this story. But as I learned in 2014, there is a lot more involved in healing than medicine, and a lot of gray beyond the black and white of brain scans and diagnoses. In February our son had his halo removed and we thought we were in the clear, but we had only a couple of good days before he regressed. His tilt worsened, he became unbalanced, he vomited often, and he appeared to be in pain. All the things we thought were fixed just reappeared with a vengeance. The doctor diagnosed him with muscle spasms and put him on muscle relaxers, but that protocol didn’t help for weeks. Which is how I, a first-trimester pregnant mother of a two-year-old, battled my own nausea while mopping vomit and holding my son multiple times an hour as he dissolved into tears from all the discomfort. And I couldn’t even drink wine to help me through it.
Around April, as I was exiting my first trimester, the spasms ceased and the tilt faded away and the cloud seemed to be lifting–later than we had hoped or expected, but lifting nonetheless. Spring became summer, my belly grew larger, and our boy began a new type of physical therapy that achieved even better results. He also began occupational therapy to help him navigate the world with his new, untilted perspective, as well as to help with the motor planning. He and I headed to multiple appointments each week, walking from the parking deck to the medical building along the same path as parents pushing wheelchairs and kids heading for brain surgery consultations. I would catch our reflection in the windows of the building sometimes, my bulging midsection and my able-bodied boy, and think about how far we had come from where we were when the year began, its memories engraved in my mind: the nightly screams of the boy on my son’s hall in the neurosurgery wing of the hospital; the fearful hope of a new pregnancy after a failed one; the cleaning of my son’s forehead around the halo pins nightly after his sponge bath. We had moved, it felt, from the trenches onto flat land, from battle into healing. My new problems were swollen ankles and toddler tantrums–difficulties more recognizable as blessings after the past several months.
I made a collage of pictures from my son’s recovery, images from the day of surgery to the day of the halo removal, to remind me of what our family had been through together and to serve as a marker for my son, who will not remember any of that time. But the collage, hanging on his bedroom wall, doesn’t tell the whole story. Partly because a bunch of pictures never could, and partly because the story continues. Now that 2014 is winding down and my just-turned three-year-old is playing outside and his three-month-old brother is sleeping in his swing and the dust has settled, I think about this year and what it has meant to me.
For one thing, this year exposed my glaring sense of entitlement, a chip I carry around hypocritically, detesting it whenever spotting the same in others. From parking spaces to health, I’ve witnessed my own implied demands of this world and, yes, God, made clear by the anger I feel when things don’t go the way I think they should. Try walking into a children’s hospital with that load on your shoulder, though–try hauling it around the lobby full of children in wagons with IVs attached, or past parents who’ve just received a fatal blow to their hearts. What I identified as justice was revealed to be the burden it was, the blindness of self-promotion. I felt it in more homespun situations, too, as a newly-out-of-work professional whose LinkedIn profile and resume were completely overlooked by my new employer–a short nonverbal guy who didn’t even seem to notice, let alone be impressed by, the degrees I’ve received. I had traded those in for some doctorate-level coursework in self-denial, the kind born through monotony and repetition and (gasp!) wiping a tiny butt. Multiple times a day. Oh, the indignity! The blessed indignity of being put in my place, a place called home.
Then came the breaking of new ground: the development of a heretofore unblossomed sense of empathy, of uncomfortable involvement in life. No longer could I write off the inhabitant of the car in front of me in the parking deck with a one-word label after she nabbed the space I wanted; she was a mother, too, walking her own path from deck to appointment with child in tow, their story being told in some of the same buildings as ours, through some of the same challenges. The nameless faces in scrubs populating the hallways became Miss Sarah and Doctor Smith and they were allies now, people who knew my son’s story, who knew how to draw him out of himself and make him laugh, make him heal.
I began to pray more this year than ever, not the planned variety that occurs in pews or at bedtime but the drop-of-a-hat kind uttered as a silent soundtrack during my boy’s therapy sessions–that he’ll get this new skill; during a trip to the playground–that he’ll attempt that step and gain confidence; during a spasm–that he’ll feel relief. I have prayed more, and I have cried more, and I have felt more, uncomfortably and inconveniently and messily, and I’ve gone from being a bystander in much of life to feeling its waves pass through me and leave me on a different shore from the one where I started, and I’ve learned that this journey has not been about getting lost but being found. I’ve learned that grace means we are never staring down a barrel at anything, never will be, no matter how it looks (even when it looks like a second baby whose head tilts also, in the opposite direction of his brother’s–say it ain’t so!). Because this is the paradox and the direction of it all: life from death, healing from brokenness, light from darkness. “These hard frosts hasten the spring flowers of glory,” wrote the Puritan Thomas Watson. “The wise God, by a divine chemistry, turns affections into cordials. He makes his people gainers by losses, and turns their crosses into blessings.”
I’ve learned that there is a connectedness in this world that I never saw before, all the way down to the synapses in our brains, and my story–my son’s story–has left me unable to take these connections for granted; unable to remain blind to the tiny steps involved in saying a word or solving a puzzle or climbing a stair. I’ve watched my boy on his continuum from rejecting a marker to scribbling all over the page and felt the same victory that my friend who watched her deaf child hear for the first time feels, the victory we never would have chosen but have grown to embrace, the inescapable gratitude that comes from being forced to see what was once invisible. Or maybe I was just blind? Grace came alive for me in 2014, unchosen and uncomfortable and undeniable….and amazing.
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5 responses to “2014: A Year in Review”
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Thanks Stephanie.
A very beautiful meditation on grace.
Blessings on you and your family and all of us with the challenges we bear with our children. . .
One quibble. You wrote “(Disclaimer: I’ve never been an optimist.)”
Let me suggest that anyone who made lists of New Year’s resolutions is surely an optimist.
Or is it simply being young? Ha!
Again, thank you. This brought tears to my eyes –
I liked your suggestion that part of our sense of “justice” is actually entitlement. (Me? Feel entitled? can’t be!!! Ah, yes, I’m afraid you’re right. Thanks be to God for grace!)
Our children came to us through the gift of adoption, and I think of a term that theologian Ted Peters coined in an article I read years ago. He called children who come to us via ART’s (Assisted Reproductive Technologies for those fortunate enough not to know the term) – or adoption “The Hard Won Child.”
I’m not sure what that means. . . but there you go.
I’ve often thought that the long journey to parenthood gave an extra measure of gratitude. I also think, that like grace, it is something to which we come alive over and over again.
Your insights into grace via the suckiness of 2013 and 2014 will be gift always.
And they will slip away.
And they will return.
May you continue to share those gifts with such generosity.
Did I say thank you? Phil
I look at you in awe, doing things I could never do without truly losing my patience, followed by my mind. I am sure that there are many other mothers who would and have lost it in your situation. I told you some time ago that James, with all his infirmities, could not be in better hands than yours and Jasons. You have the resources, love and devotion to ultimately make him the best he can be.
2015 is going to be a year of much progress and great elation as the hard work, affection and attentiveness you have shown to your sons will bring significant progress. As you said, “there is a lot more to healing than medicine” and you are living proof that is so.
Very powerful and beautiful! Thanks!
I loved this, Stephanie. Thanks for writing. And prayers for your boy and sweet family.