Image (top): “Song (ongoing),” conte crayon and gouache on paper, 31×144 in.
Image (bottom): Lumbo-Sacral Song, 2014, conte crayon and gouache on paper, 15×96 in., by Elizabeth Riggle
Take My Hand So I Can Walk
By Peter Galligan
April and I are married, expecting a child. We’re at Denver Health, the city’s municipal hospital, for an ultrasound. The room is dark. April is holding my hand as I sit next to the bed. Being terrified of having a child to begin with, I sit silently with sweaty pits, watching a grainy picture on an old monitor, unsuccessfully trying to interpret the purple ultrasound images on the screen. The nurse points to a pixelated blob that I gather is my daughter’s head.
“Those are her feet,” the nurse says.
Before I catch any hints of distress, April knows something is wrong. She feels the pressure of the ultrasound scanner, the intensity of the nurse, a small, serious woman, as she searches for something by jamming the scanner around April’s swollen belly.
As I sit next to my wife, I check my phone. I hope to be on my way to work soon. When the nurse excuses herself for a few minutes, literally keeping us in the dark, I see the panic on my wife’s face. She does not stop crying the rest of the appointment. It’s a long wait for the doctor, and I comfort my wife. And she can’t explain what’s wrong. After a while, the doctor arrives in her street clothes, no scrubs, no white coat, and it is obvious to me that the news is bad.
I don’t know what Spina Bifida means. My wife does not know much about it either, but she understands it’s serious. The doctor gives us an efficient rundown of the neural tube defect, obviously struggling to deliver news she’d rather not need to.
“Paralysis and cognitive issues are possible,” she says, explaining that the lesion for our baby appeared to be at the fourth lumbar. We hear the term Myelomenigocele for the first time.
Then the doctor says, “We can talk about termination of the pregnancy.”
I struggle to understand what the doctor means. The nurse looks down at the floor, which helps.
“Absolutely not,” I say.
April looks at me with relief, though we are both still in shock. The doctor finds us some referrals for the spinal defect specialists in the area, and the nurse ushers us out of the building the back way, avoiding the public lobby because April is in tears and I probably look like I’ve witnessed a death.
Left alone with an expanding list of questions, we return home and triage our kitchen table for manic Google searches on our laptops, iPad and phones, absorbing everything related to Spina Bifida. I feel responsible for gaining some expertise before informing my family. I learn about the range of disease, including the relatively mild condition of Spina Bifida Occulta, a deformation of the bone in the vertebrae which may go a lifetime undiagnosed, and the more serious and rare type of Spina Bifida called Menigocele, which presents as a lesion in the spine, but the nerves remain protected in the spinal column. Our daughter’s case is the most severe form of the condition, the impossible-to-pronounce Myelomenigocele, where nerves escape at the lesion, tangling in a fluid-filled sac outside the the safety of the spine, unorganized and useless from the defect on down.
There’s a chart that I think every Spina Bifida parent sees early and often. It’s a chart of the human spine. Within a few hours of receiving the diagnosis, I find a half-dozen versions of the illustration on the internet, an S-shaped curve delineating each of the major regions. Each iteration of the chart shows the level of lesion on the spine as it correlates with the disability of neurological and muscular function. The lower the lesion develops on the spine, the less problems the child faces. When the developmental glitch occurs near the top, the cervical area, the child may never stand, may not speak. Determining the level of lesion provides a guess at the child’s biological potential, though only a guess. A lesion at the fourth lumbar, the level that applies to us, means possible community ambulation for our daughter. This is our first realization that it could be worse.
What does community ambulation mean, though? Some hope for walking? Maybe. The charts describe a range of achievement in muscular development. My daughter will, in all likelihood, lack glutes, it seems, based on the collective wisdom of the internet pamphlets.
As we ingest information about our unborn child’s condition, we discover other terrifying tidbits about Spina Bifida. A Chiari malformation at the base of the skull, like a cork on a bottle, may trap cranial fluid and result in the need of a shunt to drain the fluid from her head. And shunts can clog. The development of the brain may slow with increased fluid pressure. The spinal cord may become tethered to the surrounding tissue, causing illness and additional disability. Cognitive delays from any of these complications can lead some Spina Bifida kids to develop cocktail personalities – socially warm, but lacking deeper comprehension. Kidneys can fail. There’s of course the no-small matter of the bowel issues and catheterization.
The diagnosis comes with too many nauseating outcomes to even contemplate, so we stick mostly to her ability to walk, or lack thereof, to perseverate on, to discuss with friends and colleagues when they ask our unborn girl.
The months in which we’re expecting, I work in a generic concrete office park near my childhood home, and I walk on a path through prairie surrounding the gray office buildings. I pass by some vacant, grassy fields, quickly disappearing on the south suburban area of Denver. On my lunch break each day, I take this path and I wonder about what shape this little being will appear in physical form. What will it be like to raise a child with a disability, to carry some permanent stigma, the nature of which is unknowable while waiting on our daughter’s arrival? Will we be outcasts? Will I ever dance with her? Worst of all, I think about that blister on her fourth lumbar, and wonder if she’s suffering in April’s womb.
The path takes me along a road surrounded by high grasses, with a blue IKEA building over the hill, and the mountains to the west. One day in the summer, I notice a dog mess on the middle of the sidewalk. It’s a singular oversized tootsie roll poop not a hundred yards from the parking lot. It remains there all summer. Oddly, it clings and bonds to the concrete, holding up through hail storms, through torrent Front Range winds. I could kick it to the side, but I don’t.
I am in Grand Lake, Colorado under the granite precipices of Rocky Mountain National Park. This happens a few years before I’m married or a father, or any of that. The idea is to hike among the turning aspen leaves, forest-bathe to lower my cortisol levels, maybe snap a few selfies. I turn toward the Adams Falls trailhead and gaze at the vast swaths of aspen trees growing up the valleys. The aspens cover the scars of the recent beetle kill with hospitable, postcard yellows. Winter will be on the way eventually, but the autumn still shimmers.
At the trailhead, I sling a Camelback water bladder over my shoulders. My feet have been wrestled into those ridiculous Vibram Five Finger shoes. And I’m surprised, indignant, at the lack of cars at the trailhead. No fellow hikers in prime autumn foliage season? The hunt for turning leaves overwhelms the Grand Lake trails on weekends. But during the week, I gather, I must have the quarter-of-a-million-acre national selfie treasure to myself.
Though it is September and I’m setting foot on a mountain trail, it is warm out, comfortable enough for short sleeves. I look to the sky over the peaks, and don’t spot any clouds. I have arrived on a perfect morning for hiking, though that can change fast in the mountains.
For all its health benefits, trail-walking doesn’t perfectly mimic the patterns of ancestral foraging, repeated over the thousands of years, ever since we stood upright and began to stroll. Grazing animals, adopt a random pattern of walking, referred to as Lévy walking, in which gathering occurs in a small area, interrupted occasionally with a focused, long burst of movement to new foraging ground. Likely, our ancestors adapted to this pattern as well. Left to our natural devices, we should move like bees buzzing up and down the target-rich flower garden before zooming off to the lilac bush down the block. Even when we are at our most “natural” in this modern age, on public forest land, we still relegate our experiences to predefined paths. Our genetic patterns of chaos are difficult to emulate, and our survival is not based on foraging. But our genes command we walk, so we must walk.
I arrive at Adams Falls and peek over the concrete barrier along the trail side. Below me in the canyon, rotting pine trees twist into a nest and dampen the usual thundering roar of the falls. While the solitude seems peaceful, there is urgency in the humid haze above the falls. I feel a sense of being close to disaster, knowing one tiny break would set loose this transient dam.
I’m eager to follow the water upstream, deeper into the park. Not far after the falls, though, two moose startle me. There’s a mother and, behind her, a calf, half of momma’s size, but not a small animal. Off in a meadow, safely across a pond with perhaps two hundred yards of water separating us, they raise their ugly heads and look back at me. I quickly calculate the consequences of disaster on the trail – a bad injury or an angry animal, or…
I’ve seen plenty of moose in Grand Lake. Big tourist draws. You learn quickly not to lock them in a staring contest. My fight or flight results in a freeze for a few moments while calculations of risk rattle around in my head. Their total disinterest in me, though, allows me to resume movement, keep hiking.
I walk for another half hour before heading back, the moose not far from my mind while I attempt to enjoy the pastoral sunlight flickering through aspen leaves. Eventually I turn around. And the last bend before the pond with the moose, I meet both creatures, with Momma towering in front of her offspring. They have crossed the pond and pinched me in towards the trail against the mountain with one long, random, damn Lévy movement, boxing me against the granite wall. I can see the water drip off the fur on Mom’s legs because her thigh is about eye level for me. I’m a little too close.
One problem, of many, is the authority of the mountain that we’re pressed against. I can’t scatter up the hill without risking a fall. I have two options, turn around and head back into the park, waiting out the moose, but perhaps inviting a worse scenario. Or brave it, walk as swiftly and calmly by the bend, and hope for the best. Sensing my chance to cross at all may be compromised if I wait, I head towards the moose. I begin without any reaction. I get nearly through when Momma stirs.
She lunges into a charge. I am no longer a hiker. I am the threat. I sprint like prey. The mother moose takes up and follows the trail. I’m terrified. I turn back two or three times, half expecting her snorting behind me, but I find no sign of the moose. I don’t stop until I’m in the parking lot.
This is the extent of what I know about my capacity to fear.
When we’re lucky enough to acquire tickets for the Broncos game, we always park at the Auraria campus just south of downtown. The lot is affordable, and the energy of the walk after a victory is electric. We’ve done this routine since the first months April and I dated.
This Broncos game happens to be before we’ve learned about the diagnosis, by a few months. It’s the playoffs.
The walk begins along the light rail tracks. The orange and blue clad crowd thickens at the bend under the highway. Street vendors sell cheap sundry and all things Broncos. There’s a tenacious young drummer pounding out an energetic beat. For this playoff matchup, he’s perched on his drum throne under a deceptively bright and clear January sky while we’re all getting blasted by a bone-chilling wind. We turn along the Platte River. Underneath a bridge, a saxophone player takes advantage the sweet concrete reverb. The noise and energy swell on the final stretch to the stadium.
Selfie time. I post the walk to my Facebook page, showing off the sea of orange and blue hours before kickoff. I also take a picture of April, proudly showing off her stomach. I don’t share that picture on Facebook. April is pregnant with Katie, but not so much that it’s visible. We haven’t shared the news yet. The divisional round is too early.
After the game, after the sun slipped down behind the mountains, we bump shoulders with a drunk, joyous, and rowdy crowd pouring out of the stadium, elbowing our way back to the campus along the Platte, chanting nonsense with four letter words.
The following week we win again. And April and I take the same walk, return the same route, with an even crazier crowd. We take more pictures of April’s belly, the pregnancy still our secret. We babble on about the day that our child can take this walk with us. But the AFC championship game is too soon to share the news.
It’s at the Super Bowl party that we tell our family about the pregnancy, and my mother squeals. It counter-balances the shellacking that the Broncos suffer in the game.
Katie arrives with a hole the size of a silver dollar in her back. She is slimy, frog-like when they pull her from my wife’s stomach. I have a front row seat of this, next to April, who is ghost-white and crying. They put a clear plastic bag over the bottom half of Katie to protect the transparent tissue covering the hole in her back. Through that blistery film, her spine is visible – tiny twisted bones around a tangled nest of nerves. It’s that sense of being close to disaster, knowing any break would set loose this tiny, precious dam.
As the evening arrives, navigating a phalanx of hospital staff and family and equipment, with my newborn lying on her stomach to keep the blister on her spine intact, I watch a preseason football game to pass the time. Then we look on helplessly as Katie is wheeled away for surgery on this first night of her life. When she’s brought back to us in the NICU, we are still unable to hold her. Her lower back is zippered up with blackened stitches. The nurses help me round up a few extra cushions to turn a chair into a makeshift bed next to Katie. She cries nearly constantly throughout her first nights while April recovers in her maternity ward bed. In the early hours of the morning, I fight in whispers for all the pain medication I can procure for Katie. The surgery has closed the hole in her back. But her feet, paralyzed and crooked, are in her face. In the womb, she developed in the pike position, which persists after birth. The lesion level appears more like L3 than L4, we learn from neurosurgeons who pop into our room at all hours, also sleep-deprived. The lesion found farther up the spine is not welcome news.
“Her feet will drop down with time,” one surgeon promises, “They will look better, more normal.”
Somewhere in the haze of the first week of her life, Katie’s head swells. She is ten days old and has a second surgery, this time to place a shunt in her skull.
Katie is in the back seat of my Volkswagen Tiguan, singing along to Disney princess songs. With only a few minor scheduling setbacks, no full meltdowns, it counts as a good morning. I’m taking her to preschool, where I attended elementary school, where I remember learning how to juggle in the cafeteria and how to humiliate classmates with an inflated rubber dodgeball in the gymnasium. I remember taking Ron Reagan’s presidential fitness challenge, nervously approaching the pull-up bar, wanting to put on a gun show for my fifth-grade female admirers in the school yard. I remember being a strong kid at Ames Elementary.
We make it to school in time to park along the long sidewalk. I slide her gait trainer out of the trunk along with her her crutches and backpack. I lower her into her gait trainer, and Katie immediately strides towards the school door. Everyone in the preschool knows her, so kids and parents all call her by her name as they pass us along the walk up to the entrance. As we walk, she steps on cracks in the concrete, and stomps my shadow. In the school, the staff make a point to greet her by name too. She soaks it up, the kind of attention I shy away from, stopping to greet everyone she can find who will smile back at her.
She takes her time. It has made me slow down too. Her legs, which are in plastic braces up to the knee, naturally want to turn right. She keeps her feet straight when she concentrates. Otherwise, her left foot lands sideways. Each foot plants at a right angle to her hips. Yet, with her walker, on a good day, she can almost keep up with her peers. She can run faster than I would have ever imagined, though it’s really more of a speed walk, each burst only last a few dozen feet. Stabilized with the base of the walker, her gait pumps up and down like a horse on a carousel, her pony tail bobbing along.
As Katie cruises the school hallway ahead of me, a heavy-set boy from another classroom rushes across the hall, impeding Katie’s path, holding out his hands to ensure she can’t get by. Then he grabs the walker, shaking Katie off her center for a moment. She recoils but collects herself. The boy’s mother looks horrified, yanking her son away before we can do anything. We’re used to these circumstances, teaching moments, and conversation about the “tools” she needs to walk.
“I know it seems like a toy, but it’s not. Katie needs it to walk,” I say firmly, “But you can ask her about it.”
“What is that?” asks the boy. Kids are usually curious..
“My walker,” Katie says, wiggling proudly inside the gait trainer.
I hang up her backpack and coat, and she greets her teachers in a full throat shout. She washes her hands while I place her walker in the corner and tuck her crutches underneath a seat at the touch table. I kiss her goodbye, hesitating to leave her with her tools, but her attention has turned fully to ensuring each of her friends at the table has a pile of play-dough.
The researcher at the Children’s Hospital, a tall woman, young enough that I speculate is a grad student, convinces us to enroll in a wheelchair study. Katie is a year old, an age when a lot of kids still haven’t walked, an age that she is still largely as mobile as her peers. The study has the vague purpose of getting Katie used to being in a wheelchair. There is a doctor accompanying the researcher, Dr. Phillips, who is in a wheelchair We learn she had lost her ability to walk in a car accident.
“We’re looking into how fast children adapt to wheelchairs. It’s about skill-building, confidence, making sure she can keep up with her school kids. Katie will pick it up fast.”
Dr. Phillips is pleasant and complimentary of Katie’s spunk and drive but offers us little explanation of the details of the study. Dr. Phillips was born able to walk. I’m not sure if that’s a factor worth considering. Frankly, I’m caught off guard and facing a choice I didn’t think I’d face so early. Dr. Phillips, and others who treat Katie, tell us not to get our hopes up. Children with neural tube defects can often walk in a limited way while they are children. As adults, the leg muscles don’t keep up.
I look to April, attempting to read her expression, but I only see her poker face, nodding in time to each point the researcher makes. Stuck in a small hospital examination room, with a child who wants to lick the floor, we find it difficult to argue. We capitulate when they tell us we can drop out any time we want. April and I agree to participate, to get Katie a wheelchair, when the topic turns to the educational mission of Children’s Hospital.
Up until this point, I’ve maintained that I only want my daughter to move around in the way she feels most comfortable, whatever that method is. I’ve visualized and accepted the modifications I’ll need to make to our 1930’s bungalow, which was never designed with wheelchairs in mind, in order to create an environment beneficial for Katie. But watching Katie get measured for a wheelchair, I realize for the first time that I want my daughter to walk, even if only for a year, or a week, or a few steps. Accepting a wheelchair suddenly seems like defeat, which is a tough feeling to reconcile while studying Dr. Phillips as she sits calmly in her wheelchair, her hands folded in her lap, satisfied to have Katie enrolled.
Before we’ve cleared the hospital parking lot, we decide to call.
“We talked about it. We’ve decided not to participate,” my wife tells the researcher.
Katie has undergone four surgeries by the time a game show host mocks a reporter with a disability at a MAGA rally. She is two years old and mastering a gait trainer and crutches, learning to stand in her braces with only a small lean against the coffee table to take the edge off her weight. Her first steps have no potential to hold her body up. She stumbles down into our laps, much to her joy. She calls it the stand-up game. She increasingly insists on using our hand to walk, often rounding up two people, on one each side, to help her without crutches.
“Take my hand so I can walk,” she commands.
And I comply, as does anyone she beckons, as we take her tiny hand.
There are many minor stories and fleeting moments on our way to our first steps. We unfold randomly in our growth as newborns and then toddlers, the cold precision of luck serving as our GPS. Once in a while, progress lunges forward with unpredictable momentum. We cross the pond, discovering it to be much shallower than imagined. We stumble as our muscles work independently, chaotically. Then randomly our nerves make a connection among the flood of synaptic and hormonal signals, and we charge ahead.
In a booth at El Tejada’s Mexican Restaurant down the block, Katie holds a menu over her head, demonstrating to me what a protest sign looks like. She tells me about the Women’s March downtown earlier in the day. Katie, who is three, recalls two things from the march with glee, the protest signs and the piñatas of Donald Trump.
Katie says, “I want to whack that Trumpet,” in as eloquent a political statement as I’ve heard a three-year old make.
My wife laments, “Everyone wanted to tell Katie what a hero she is.”
Katie, whether on crutches or her walker, shows ease in a crowd. She largely ignores the praise, it seems. How do you tell someone, though, not to call your daughter a hero? My wish, that night, isn’t intuitive. But I cringe when I hear her praised as a role model by adults (even though as a Dad I will always see her as a hero). Treat her like an ordinary girl, for her sake.
Outside the restaurant, a disheveled drunk sees Katie in her gold gait trainer with the Minnie Mouse basket, the walker she’s used for a year, and blurts to us, “Don’t you worry guys. She’ll be cured. Jesus doesn’t leave anyone behind.”
April and I are at loss of words.
“He’s crazy,” Katie says matter-of-factly, the guy still within earshot.
That week following the Women’s March, Katie begins to walk on her own, over small distances. No walker, no crutches. We see her cross the room.
My parents ask, “Have you noticed Katie is walking?”
I nod and say little, so that I don’t jinx it.
I don’t know if I, or anyone else, actually witnessed Katie’s “first” steps. It doesn’t work like that for us. She once only stood for a few moments, letting go of her grip on the wall, quietly building her balance. Then she’d take our hand, stepping forward a time or two before requiring our support. But, that week following the march, it is real, noticeable, and incontrovertible.
Katie is walking on her own.
She gathers her balance, extends her arms over her head, steps sideways with her windswept gait, eyes wide open and focused on the ground. She makes her way across our kitchen. It occurs to me that perhaps Katie, just a toddler, is feeling inspired by her fellow marchers, the sense of responsibility inherent in a hero. Her distance increases. She stands by herself and strides through the house. The walks are short, lasting only through the kitchen or hallway, and the next step are always uncertain. Nonetheless, our daughter learns to walk on her own.
We are again at Children’s Hospital, sitting in the hallway outside the exam room, for another spinal defects clinic day. Between appointments and examinations from neurosurgery, orthopedics, orthotics, physical therapists, social workers, researchers (and so forth), Katie escapes, plays in the hallway, and meets other kids with neural tube defects.
She is ignoring us, drawing on tablets with another three-year-old, Harper. Katie and Harper are making shapes together. While sitting down, sketching with their fingers on tablets, they seem like ordinary kids. My wife and I can tell Harper has less control of her lower body and sways while sitting. Harper and Katie share the same scar on their lower back, the prototypical vertical zipper of Spina Bifida, the evidence of immediate surgery after birth to seal up the spine. A lumbar or two off, though…those few millimeters of cellular development in the first few weeks of life have changed Katie’s and Harper’s circumstance considerably.
“No, no, no, crisscross applesauce,” her grandmother scolds, pushing Harper’s legs underneath her, shaping them into a solid base. Harper frowns in frustration. Dr. Phillips, in her wheelchair, rolls down the hallway and stops at our spontaneous play-date. She hasn’t spoken with us for the last few clinics. I’m sure this isn’t intentional – her focus is and should be on those kids who are accepting her help getting wheelchairs, and we declined.
In the hospital hallway, Dr. Phillips is smiling. Behind her, the equipment vendor pushes a wheelchair that’s a fraction of the size of Dr. Phillip’s chair. We gather that Harper has been enrolled in the study. Harper makes it clear, in the special way toddlers can, that she does not want to be fitted in the wheelchair. Her grandmother pulls her from the floor and wedges her into the bolstered and padded seat, and a full meltdown erupts with the child’s shrill cries.
After frantic negotiations, finally, Harper wipes off tears from her cheeks and puts her hands on the wheels. I recognize the determination in her eyes. She grasps the wheels, pushes, strains, then rolls the wheelchair forward. Dr. Phillips, beaming, covers her heart. Harper’s mother, who has joined us, claps, and Katie claps for her new friend, too. Harper’s grandmother wipes away a tear. Harper’s face is lit with pride. As I stay clear and lean against the wall, I feel as if I’m invading this profound experience, this family’s moment. But I recognize the joy found in navigating those three feet of carpet in a hospital hallway.
I dream about the trail beyond Adams Falls, visualizing the path that slices through the shadows of trees, bending out of sight around the imposing boulders. In my mind, I can hear the wind howl, an empire of sparrows and blue jays swarming the aspen groves, the rustling of chipmunks under fallen branches and leaves. I still don’t know how far my daughter can push into the wilderness. But I’ve grown weary of mourning the loss of things that never belonged to me.
There’s an implied safety in it, of course, in a hiking trail. I once saw it as an invitation to return to something primitive and natural. The path makes a promise through the repetition of footsteps before us that we will have a worthwhile experience if we only keep to its narrow whim. Among its twists and turns, though, it is a red herring. Through its passage, repeated daily, and its maintenance, its regulation, the trail restricts our movement. My memory of hiking becomes bogged down in a binary current. There is only forward or back. I don’t move that way anymore.
I close my eyes, and I picture myself gliding off the trail. I dream of wading through the chilly tributaries that feed Grand Lake. I dive into the clear pond to join the bathing moose. Underneath the water, I lock eyes with momma, wink, snap a selfie, then surface under the moon. I rise from the waters, above Adams Falls, over the tips of the new pine, and under the unabated starlight. I see all of the trails in the park at once – blackened surgical scars cutting through the muscle of the mountains.
I ascend to fourteen thousand feet, above timberline at Longs Peak, to find my daughter standing at the summit, much older than she is now, watching the city to the east, the high plains, the horizon. I stretch to get one glimpse of her incredible view of everything.
There I ask her, “Can you take my hand and dance with me?”
AUTHOR’S NOTE: Certain names have been changed to protect privacy.
