Happy Birthday

My mother would have been 68 years old today. 10 years ago, she celebrated her last birthday.

Her absence has transformed from a gaping. bleeding hole in my chest to a shadowy, peripheral thing. Ephemeral yet always present. Not always noticed except when it’s all I can see

My life is so different now than when she was here. The world seems so different too. Macro and micro. Those of us still alive have seen and survived so much since 2011. But I never cease being her child. I still foolishly seek her imaginary advice or approval. She is still the yardstick I measure everything against, especially my shortcomings.

I wish she could have seen me become a mother, meet my kids. Enjoyed retirement, and some years with less caregiving responsibilities. I don’t know that longing for the impossible serves me, but on this day I can’t help myself.

Happy birthday.

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.

the writer who doesn’t write

A line stuck out at me from Jenn Shapland’s recent (and excellent) work on the life of Carson McCullers

[He was] a writer who never wrote.

(In regards to Carson’s husband Reeves McCullers)

A writer who never wrote. A writer who never wrote. I would not want to be remembered that way, but I very well could be. I find refuge in language during certain rocky junctures but when the waters are calm I get lulled, I get lazy- as I recall- It’s a little difficult to remember, because recent years have been so challenging. My writing shelved not because of sloth but because I’m trying to keep the goddamn ship afloat.

Notebook scribbles. She was a writer of notebook scribbles.

My son is medically complex. My daughter is dynamic and active. My kids need me but I need this. So I will keep finding ways to arrive to the page, to express and explore and fumble and reach and keep doing whatever it is that we writers do.

an unknowing

(written September 2018)

Strava informs me that you biked 30 miles this morning. I can see the GPS track on my phone, a little blue line snaking around the familiar landmarks of my hometown. I imagine the hum of your tires as they rolled down streets I haven’t walked in 20 years. My old neighborhood.   It is autumn now, the season punctuated by sweet decay as billions of leaves turn golden and crimson, then brown, then fall. You must have smelled it too, that pungency, as you sliced through the morning air on your way to work, the long way.

The fall holds no sweetness here, 2000 miles away. It is simply hot, and stays that way until summer finally relents and then suddenly it is winter.  This won’t happen for another two months, maybe. 

The GPS tracker shows me your morning route, my imagination ably filling in the gaps. It feels strangely voyeuristic since I know little about your life today. It has been decades since we since we whispered secrets to each other as our favorite lake sparkled like diamonds in the late afternoon sun. We held hands as the sun plunged below the treeline and the waters turned suddenly, ominously dark.

Yes, we had a favorite lake, how sweet is that?

 I still hear the sound of your guitar cutting the silent, cold air, your voice a low whine, singing songs about deliverance. I hear a creek rushing, the one by your parent’s house, a low murmur in the darkness. We would meet in dimly lit coffee shops, were I would sit on velvet chairs and sip the sweetened drinks that you loved by candlelight. These are the memories that my heart hangs on to but the truth is always a little more complicated.  We found joy, yes, but it was a disruptive, frightening joy that left me quaking in its wake. You would, in equal measure, elicit great big laughs from my belly, and unstoppable tears from the sting of small, cutting cruelties. 

We were too young, we were too much. We didn’t talk for a long time, and then we did again, but not often, and in another era we would have eventually been completely lost to each other. But now there is social media, the invisible web of a thousand constant virtual connections, the platforms that call us “friends,” still, and perhaps we are. We certainly were, the lakeside intimacy long eroded away. These blue lines pull me back into the illusion of it, into the feeling created in the wake of knowing that yes, you biked 30 miles today.  This is were you went. This is what you saw. And I keep watching from afar.

broke (a confession)

Money has been flowing like water through my fingers. An expensive month I could say, kicking a pebble on the ground with the toe of a dirty sneaker, and I wouldn’t be wrong. But I still feel like a failure. There were many months when the flow appeared abundant, and I spent and I spent. Some costs were unavoidable, others were simply for pleasure, to relish in the joys of the physical world. Now, savings gouged, I feel queasy. I could have done better.

My shoulders slump with the responsibilities of the middle-aged: it seems that everything matters more now.  My choices impact not only my future and my partner’s future but my daughter’s as well. I say I desire fiscal responsibilty and frugality at home but I promptly trip over hedonistic roots and stumble on my way to a more free financial future and meaningful life. There is so much to want in this world.  I want the pizza and beer.  I want the coffee in a paper cup. I want the shoes. I want the bike.

But more importantly, I want peace. I want love. I want undisturbed sleep, I want to worry less. I want more time with you. I want more time with myself. I want to make fewer decisions. I want a healthier, safer world. These things are harder to come by. So I get the pizza and beer, the coffee, the shoes, the bike. But the wanting continues.

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.

i couldn’t stick the feeling

I am ordinary in appearance, but before baby I could easily feel beautiful, sexy. Not every minute of every day, but I had my mojo. I never struggled with body image the way so many other women seemed to. I appreciated how strong I was, tanned skin shining over the curves of muscle. My eyes were bright. There was a sway in my hips. 

A prenatal yoga teacher shared with our class that dissatisfaction with body image tends to peak around 6 months postpartum. I guess I paid attention, but it seemed inconceivable in the early days, right after I sweated and growled and with a holler pushed out my very own 9 lb wonder. I felt like a fucking warrior goddess, a many- armed Hindu diety, weapons shinning, tongue lolling, dancing on the edge of the world. Hell yes. 

I wasn’t able to stick the feeling, though. Soon, I felt dumpy, flabby. My self image plummeted right along with my estrogen levels. And I’m talking about feelings versus what the outside looks like, but I’m not the mama who “bounced back” after childbirth, whatever the fuck that means. 1 year later, overweight, overwrought, I certainly don’t look like I used to, but what bothers me the most is I just don’t feel beautiful anymore. 

I know I am. We humans ALL are. My feelings have nothing to do with reality. But misleading as it may be, this feeling of ugliness matters somehow, and I wish I could shake it. 

I know hiking helps. Dancing helps. Laughing helps. And nothing stays the same, so I know this feeling won’t either. But maybe this overstaying its welcome because I’m not done here, there’s something I need to learn or let go of or foster before this dissatisfaction can move on. 

time to garden

I’m better at growing cats than veggies

I feel the vibrations in the air, the low hum: spring is here.

(no, really, it is- this is the Southern Arizona desert, after all)

I’ve got these bright, happy looking flowers planted in colorful pots beside the driveway, but it’s not enough. I want to plunge my hands into the dirt. I want to cut away the dead and coax forth the new. I want to smell and dig and brush my hair out of my eyes and squint and frown and sigh with pleasure at the return of the perennials. I want to water. And water. And water.

I want a real garden.

I’ve always lacked the discipline to be a true gardener, especially in a challenging desert environment, although I could pretend like I was one when my ex was around; he would breathe on scorched earth and an Eden would miraculously burst forth at his feet. I’m lazy and my material abilities are often not enough to realize or sustain all that I get interested in, so a lot of efforts to garden through the years have never really come to fruition. But I’ve always had this passion for living things, for life. I love to surround myself with growing things. And  I want my daughter to share in it, to relish the simple joy of watching a seedling sprout overnight, of savoring summer’s first tomato.

In recent years I was too much the gypsy for a proper garden to make sense; low-demand plants on the back patio of a rental had to suffice. Now that I have a house and I’m there pretty much all the time, it doesn’t feel like mine without abundant planters, without garden beds in tidy rows, full of new green tendrils popping through the soil, seeking the sun and air.

As things stand now, the back yard looks more like Syria than Better Homes and Gardens. There is much work to do, but it is time.

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.