Category Archives: parenthood

post-op

Surgery has become an ordinary thing in modern times, especially the surgery my son had this week, but there’s brutality lurking behind the banal :

I handed him over to be cut. I gave him up, for a short time, to doctors and nurses, and he suffered. Continues to suffer. We as parents calculate the odds, percentages swirling, chance of benefit, risk ratios, but it doesn’t really matter, because for us caregivers, reality bleeds and blunts to black and white. Surgery will either help, or it won’t. There will be complications, or not.

None of us can escape pain in life, yet the insistent pulse of motherhood drums into our bodies and brains to try, try, try to shelter our children from it, or at least fend it off as long as possible. These instincts run deep. What miracle is this that allows a relaxing of our clutching, clawed fists? That gives us strength to our head high while we hand over our kids, hands slightly tremulous? We inform in solemn whispers that they will open their bodies to medicine, we plead for the doctors to injure them so that our babies may be well, to inflict pain so our kids may prosper. Even agnostics like myself feel a strange faith in these moments, one that helps us kiss and sigh and let go.

For my son, surgery was a success. He continues to heal but he is no longer on oxygen. Proof of benefit, the ends justifying the means, or so it seems.

I try to exhale.

a different narrative

When I found out that my baby would almost certainly be born with Down syndrome, there was a range of responses from my friends, family and coworkers, many of them centered around concerns of (dis)ability:

  • “There’s an incredible dance troupe of people with Down syndrome – watch it on You Tube!”
  • “I hear kids with Downs can go to college these days.”
  • “Did you see the news article about a model with Down syndrome?”

During pregnancy I began participating in online forums for mothers of kids with Down syndrome. There is even more celebration of achievements and accomplishments within our community. And there has been much to celebrate in recent years: people with Down syndrome starring in movies, completing full Ironman triathalons, enjoying college and marriage and leading fulfilling lives as spokespersons and advocates. Moms of young kids with Down syndrome flood social media with the videos of milestone accomplishments: walking, talking, eating solids with a fork.  The messaging is clear: people with Down syndrome can and do achieve big things.

I cried when Chris Nikic completed his triathalon and my heart warmed watching Zack Gottsagen in the Peanut Butter Falcon. These people with Down syndrome are incredible, extraordinary.  They have earned every ounce of admiration they recieve and more.

We live in a culture hyper-focused on ability and the illusion of independence. There’s a natural conclusion, therefore, that individuals with Down syndrome who are most capable of performance, most “like,” are elevated. The more dependent or disabled ones are not. I wish to celebrate achievement but fundamentally, I don’t want to be part of this narrative unless it can also celebrate something else- the worth of all lives.

(A surprising turn for a woman who spent her college years working at an abortion clinic)

Many kids with Down syndrome are born very healthy. There are many too that face challenges in infancy but seem to turn a corner after a year or two and go on to live relatively healthy lives. I’m waiting for my son to turn the proverbial corner. I’ve started to doubt if the corner exists at all, for him. At age 22 months, my son is not walking, not crawling, not sitting, not babbling. He is medically complex and has spent most of his short life in and out of hospital settings. We are not the heroes of anyone’s social media news feed. His achievements can be uncovered in very most basic domains: breathing. Eating. Surviving.

Yet his worth does not depend on his ability to walk or talk. His value does not hinge on his future success or failures. He is perfect as he is. I chant this truth under my breath every day, as I move through spaces literal and virtual that suggest otherwise. It has become a prayer for me, a mantra that dissolves the illusive messaging on ability and worth that excludes so many.  

He is perfect

He is worthy.

He is a miracle.

This is countercultural, you see. A dependent child, with (now patched) holes in his heart, airway problems, requiring so much medical care, so much help to simply to live- we are told this is inferior, tragic even.

NICU snoozes

He shows us another way; he continues to teach me these greater truths on a daily basis. Is that heroic? I don’t know. But it is invaluable.

sense of place

It’s February. The land where I was born is still wrapped in a deep freeze. Delicate icicles dangle from roof tops, breath creates a halo of white smoke around the living. Here in Arizona I already feel rumbles of spring, buds are budding and crocuses blooming and we didn’t even really get a winter; it was the hottest January on record.

Winter memories from childhood grab me. There was silence among the snow and the trees, save for a delightful crunching beneath my feet, my quick breathing. There was the bite of cold air on my face, my only exposed skin. The cold would burn in my nostrils and make my toes go numb yet still, it was thrilling. As the sun would sink towards the horizon, my friends and I would pull our plastic sleds to the nearest hill and slide down and down and down. All would rush by in a white blur and if I was tossed off I would lie on my back for a moment to find my breath while gazing at the twinkling stars above.

There was the slide of car on ice, the pumping of brakes, the whispered prayers.

There was the slide of blades on ice, the spinning, the fall to earth.

There was the smell of snow.

Motherhood unlocked a part of me that misses my birthplace, its seasons and rhythms. I think about going back sometimes, but I have a life here, one that is happy and full. I chose this place. Our family was created and recreated here. The roots we have cultivated run deep.

My daughter will grow up to have a totally different sense of place. Her eyes learned to focus gazing on the saffron, cloudless sky, delicate mesquite leaves, stately saguaro arms. She heard a snake’s rattle before she could sit up. She learned to walk on rocky mountain trails. She likely will always feel at home here, under the intense yellow sun.

Perhaps she too will have memories that sing to her in the quiet nights of her future, as her winding path pulls her near to me and away from me and back home again.

finger rock

Finger Rock is a lean, delicate spire, daintily extending out of the craggy Santa Catalina mountain skyline as though it were a little girl’s pinky finger counterbalancing an invisible porcelain tea-cup. This feature can capture the eye from almost anywhere in Tucson, including my driveway. Many novice day hikers have tasted the bitter tang of regret when they realize that the popular Finger Rock trail they have been huffing up for the past 2 hours doesn’t actually bring them to Finger Rock, which after getting closer, closer, slinks out of view like a beautiful stranger at a cocktail party. But for the intrepid, she is reachable; for those that wish to ascend her, 100 feet of easy technical climbing is the reward after hours hiking up the steep, loose approach. And once you make it to the top, standing on a shifty summit flake, you can regard magnificent views of the shimmering Tucson valley below, or the limitless bowl of azure sky above.

But here’s the disclaimer: I’ve never climbed Finger Rock. I’ve never breathed hard on the challenging ascent, skin burning where the ubiquitous shin daggers drew blood. My eager, calloused fingertips have yet to explore her contours, her secret holds.  I have yet to balance on that unstable summit flake, sweat and satisfaction dripping off me in equal volumes. I’ve dreamed of this adventure through. You see, I’m an untalented if enthusiastic rock climber; I am the kind of hiker that’s happiest if the journey takes all day. In short, it would be the perfect adventure for a person like me.

Or, to be more accurate: would have been a perfect adventure for someone like I was.

I shrug away the longing as I unload groceries from my Subaru, my newborn daughter snoozing in the backseat. A year ago, Finger Rock seemed like an ambitious-but-feasible Saturday plan; now it sounds as remote as visiting the moon. I can hardly manage a trip to the rock climbing gym for a few hours, certainly not an all-day excursion up a mountain. Overweight, overwrought and over-tired, my muscles have atrophied, my ambitions to climb mountains transformed into the goal of just trying to get to the goddamn grocery store. I am soft where I used to be hard. I am stretched where I used to be comfortable. I am winded where I used to be strong.

My daughter frowns, half-awake and smacking her lips. I slide her out of her car seat. She is all warmth and softness; we exhale in the sweet relief it is to be holding, to be held by. Her eyes, twin glacial pools, have started to focus on the world around her and she takes a moment to regard the mesquite tree in our yard. I bring her to my breast after I take a seat on the red Adirondack chair jauntily positioned on the front porch, Finger Rock still squarely in my line of sight. She latches on and I breathe in. She is exquisite. I feel the full, ridiculous weight of the love which flash flooded my life the moment I gave birth a few months ago and somehow keeps rushing and rushing from an invisible, inexhaustible spring.

Even in this sublime moment, my eyes flicker north, to Finger Rock. I am content, yet somewhere inside of me a wild cat paces in a secret jungle, silent, patiently insistent. She can wait, she will wait, but she claims the right to remind me of a different path, the wilder world beyond caregiving. No matter how sweet the gifts of mothering a newborn may be, her shadow makes me tingle, a specter from my old life of physicality, of independence, of wildness. She reminds me of dreams I’m not sure even make sense anymore. Afterall, I’m still figuring out this new landscape since my entire life blew open with the birth of my daughter. In many ways I feel like a stranger to myself, my new world a drawn-out zen koan. Opposites find symbiosis; contradictions are the norm. I have never felt weaker, and I have never felt stronger. I am contentedly consumed by caring for this precious and demanding newborn, yet I miss my old life, with all its adventures and micro freedoms. I fantasize about rocks I haven’t climbed, may never climb, and perhaps these flights are sustaining a part of me through this time of early parenting. Or maybe I’m engaged in a reflex fantasy, simply playing out old thought patterns, scratching old itches. Maybe that life is over.

But I don’t think so.The ground under a mother’s foot is never solid, after all. I feel myself sinking as soggy sand beneath me is sucked into the tide. I wobble and catch my balance as I stand on the shoreline of mystery, waves lapping around my ankles. What is true today ceases to exist tomorrow. My daughter is growing, the days are getting shorter, and everything changes, but there is so much more possibility balled into each and every moment than most of us dare to realize. The same miraculous force that pulled me off the mountain to nurse a baby on an Adirondack chair may one day push me back up into the wilderness. And these dreams are the red thread tying together then and now, proof that something original remains after the cracking, the flooding, knitting together a changed woman, a brave new mother in a soggy, strange world.

 

***

 

This post took me ages to write- another casualty of new parenthood, I suppose. My baby is one year old now. I still haven’t climbed Finger Rock. But I haven’t stopped gazing at her and dreaming of the day.

first tooth

Her first tooth erupted on Saturday after a prelude of drool and night nursing. She is six months old, it seems too fast, but isn’t that the way it always is? For every new milestone represents a loss as well as a gain. She’s a different baby this week than she was last week. She is the river I can never swim in twice, the shifting clouds, the unfurling leaf. I gasp as I smile, I embrace the new child I meet while I long to hold her a bit longer as she is, to keep her small. 

Perhaps it’s the curse of an older mother. We know the heartache of loss, and these mini ones sting old wounds. I’ll never know what kind of mom I would have been in my twenties, but I suspect more like my own, with a sunny optimism that pushes away the painful realizations. Or maybe not. Maybe it is part of me, this longing to have things be as they are, yet also different. Maybe Mom experienced some of these feelings too, but I can’t ask her, and she never would have shared with anyone if she did, for she kept close vigilance over her darker thoughts and generally did not give them the dignity of breath. I can only go my memory of her and her words, spotty and inaccurate as that can be:

Do you miss me being a baby?

No. I always feel like I love the age that you are. It’s fun watching you grow up. Plus babies are a ton of work. 

Well, then. Was she protecting me? Giving me the answer I wanted to hear? Or was that really her truth?

I guess I want to shield J from my sorrows, the twingy sadness that comes with every leap forward. I want her to feel my love like sunshine, warm and shining, not heavy or mournful. Her victories we can share but my grief will be my own to hold.

her hands

If I were to claim any part of her as my favorite, it might be her hands. They dance when she is alert, fingers waving,coaxing the air into becoming her own invisible instrument.  When she is startled they bunch up into tight fists and she gives them a shake or two. Often a finger or five can be found in her mouth, shiny with drool. Lately she has started to explore the opening and closing of her hands. She touches fabric or skin or anything really, and her little starfish fingers  joyfully leap forward only to immediately spring back to nestle her palm again. Open close, open close. And sweetest gestures of all happen during nursing, as more frenzied activity slow to sweet caresses. She feeds quietly, eyes closed and gracefully, ever so gently traces her fingertips along the outside of my breast, my sternum, my chin. The very light touch of her fingers, so tiny, not yet hardened by life’s labor, feels more like a brushing of butterfly wings than the touch of a human, but here she is, real and mine. 6 months after her birth I still check her breathing while she sleeps. You are okay? You are okay.