Love Through the Extraordinary: Marriage, Parenting, and Family in the Face of Rare Disease by Rebecca Thereault

*Featured Image: “Dreams Are Made of These” by Barbara Carter

The sun shone in hot, grazing my knuckles with its rays as the air rushed in from the open window smelling sweet and sticky, a mix of mature chlorophyl and highway fumes, and for a second I almost felt peace. I caught a glimpse of another driver, window down, hair blowing in the wind, and I wondered where she was going or what she was doing and I imagined her freedom. I lost myself in a moment of reverie, as I often find myself doing these days, imaging the days when I was free from seeing the reality of life and knowing those days of freedom are forever gone.

The moment lasted but the space of a couple inhale and exhales until I heard her tiny giggle in the backseat and I was snapped back into reality; until I felt the massive weight of responsibility suck in around me. Responsibility like the crushing pressure of water that can rush in to any tiny hole or deformity found in a vessel at sea and displace all the air and eventually crush massive structures sinking them, banishing them to the ocean’s depths; responsibility so massive it is like an ocean.

She yells, “Fresh air!” and laughs again that magnetic giggle that forces all those around to involuntarily smile. I smile with a twinge of pain as I think how oxymoronic that something so pure and joyous could suck all the air from my lungs and snap me out of the closest moment to freedom I have felt in the longest time.

She is almost 9 but still has the giggle of a toddler, like many of her other features.

We are behind the clock, again, rushing to pick up brother; coming from an appointment at the hospital, to get him, and to go to his therapy. This is the third therapy of the week; it’s like soup du jour, every day has it’s own flavor of therapy, mostly for her but also some for him. The car sways with the turns, a little too much, it needs new suspension but we can’t afford it, therapy is expensive, doctors are expensive, this life is expensive.

“Baby, Mama’s had enough fresh air I’m gonna roll the windows up now.”

I feel my breath being sucked out the window like the air being displaced by water in someone who drowns, and I just need the window closed; but there is no end to this drowning, no rescue and no death, just the ever pressing weight of responsibility and no way to swim through it.

I hopped out of the car and the sun hit my back warming me, I hear the noises of summer in the background and wax nostalgic for the time I worked summer camp; I love children more than anything else in this world, I love working with children, talking with them, teaching them, everything about them. How could I not know it could be like this? I opened the car door to help my nearly 9 year old out of her car seat, a full 5-pt harness car seat. I have religiously buckled her in and out of a car seat for 9 years and will continue to do so for the foreseeable future; it’s easy to forget about the monotony of care when they are stages in the developmental march of childhood until the march forward is halted and becomes a never ending merry-go-round.

I prayed as we walked that nothing behaviorally “unexpected” happened at camp today, to who I prayed I’m not sure, because I stopped believing there could be any benevolent spirit in this world the day I resuscitated my daughter in our living room while her younger brother lay sleeping upstairs. Whatever juju there was left I must’ve squeezed out of the universe with that prayer, because we managed a successful day at camp and emerged from the shadowy cool basement of the school back out into the blinding sunlight of the parking lot and back we climbed into the car, ball and chain of responsibility following like the shadow of memory that I can’t seem to escape every time we enter the car, the one that causes my heart to quicken its pace and my mind to replay every time she slipped into a seizure in that car seat I have buckled her into, the one that is supposed to keep her safe, but does nothing to protect her from her own body. Her body, the one I tragically knitted together for her, irreparably broken and in need of support for the rest of her life, both beautiful and tragic, and eternally entrusted to me to defend and protect.

They asked for music, just more din added to their quibbling, the buzz of the tires, and the constant internal dialogue; scheduling, dinner, scheduling, medications, scheduling, to-do, birthdays, what-ifs, politics, am I doing enough, the general on goings of the mind, ever churning like the constant whirring of the gears of a clock inside my head. It’s such a beautiful day, what happened to my freedom? I wonder where that woman was going, wind blowing in her hair as she drove down the interstate. I think this is nothing like I imagined it would be and I know it is never as anyone imagines it would be, but all this with its constant therapies and medications and doctors and emergencies is really so very far from anything anyone could imagine. I love children, they are all I ever wanted, it can’t all be crushing responsibility like the water that rushed in and crushed the Titanic like an empty Coke can under foot.

Friends have children, they drive with the windows down, and breathe deep breaths that fill their lungs with sweet air that smells of lilacs and cut grass.

They still experience the delicious freedom of life. They take swim lessons and piano, they complain about dance class and the cost of costumes, they worry about reading and enrichment, and what type of organic sunscreen is best to protect their intact children’s bodies; they live on the sandy beach and I live in the crushing depths with the rusty wreckage of those who have drowned long ago. I live where my lungs cannot expand. My lungs cannot expand because I live in the world of therapies that are a have to instead of dance classes that are a want to; in a world where I look at the medications sprawled out on my kitchen table readied to be dispersed into their neat weekly planner and come to the mind-numbing realization that the cost of one month of these medications combined is literally double the average U.S. yearly income (yes, yearly!); and a world where everyday is spent moving crisis to crisis. I live in a world where I am meant to pretend I can breathe because it is the polite thing to do in the company of those who find breathing so natural. Occasionally I find others like me amongst the wreckage, drowning at the crushing depths, we share knowing looks, and try to help each other the best we can but the problem when you are drowning is there is no way to help another who has sunk to the bottom of the ocean.

I’ve lived this life so long I’ve almost forgotten what it’s like to have lungs that move in and out easily like the well oiled machines lungs are meant to be. I forgot until I saw a young woman driving down the highway on a beautiful summer day, hair blowing in the wind, and longed for the freedom of healthy children giggling in the seats behind me and a destination unplanned rather than the therapy du jour.

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My eyes met the translucent blue waters that surround his pupils over our lunch of fast-casual Mexi-American and dove in deep. I found calm and strength in their tides for over ten years no matter how stormy the sea of our lives together. I longed for more moments where I could catch his gaze again and hold it, just the two of us, even if it was surrounded by the shuffle of feet on tacky soda-stick floors and air heavy laden with the smell of fry-o-lator tortilla chips.

The pace of life for us is like the lunch rush at that fast-casual restaurant. It is chaotic, noisy, and impossibly straining. Daily operations are assembly-line style and crisis is ever present. Not exactly the metaphor that comes to mind when one thinks of love, marriage, children, and family. Nevertheless, he is mine, I am his, they and this life are ours.

We were young(ish) and dumb(ish), foolish and in love. We shared late nights dreamily staring at the night sky planning the future we were to spend together–our family, our children. I stared deep into the oceans of his eyes and promised to love him for better or worse, in sickness and in health, for richer or poorer.

Little did we know what the stars held.

Movements flickered on the screen in the dark of the ultrasound room like stars in the sky when we first heard her diagnosis. He tried to hold my hand as they said she had tumors in her heart and brain, would likely suffer from epilepsy and autism, and rattled off the litany of other potentially devastating effects of her rare disease.

Rebuffed, he gave me space, because he knew my stubborn independence required it. I still don’t think he knows how much I needed the gesture; how much I need it every time and how much, no matter how miffed I seem, I appreciate and love him during every crisis.

We negotiated the sale of a house with a baby in the pediatric intensive care unit (PICU) in heart failure, we had the courage to have another after our first child was born with a devastating deletion in her DNA, we navigated therapies, medications, diagnoses, and medical insurance and still do day by day. We gained gray hairs and the start of wrinkles. Most importantly, we’ve done it together.

When the stormy blue of his eyes whips violent swirled by the latest crisis the earthen-clay of mine grounds him; and when the clay-colored earth of mine rumbles and shakes threatening to break his calming waters soothe me.

In a life with no astrolabe to chart a path through such horribly fated stars we lead and follow each other where the journey takes us. Even if that means catching up for a mere 20 minutes over extra-cheesy culturally appropriated cuisine.

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It was as if my life began the moment she gasped her first breath and it was not; it was the moment my life began anew—my life as a mother. This new life was supposed to be my smooth paved roadway fresh and free from debris—the one I merged back onto after the bumpy detours and construction of the past. But, fate and the universe have plans of their own. Instead, as our family drew our first breaths of air together our caravan careened off-road and entered an equally bumpy, detour filled journey with no maps, no GPS, and no intention of ever returning to the well-traveled, smooth-paved roadway the typical travelers sojourn.

My tumultuous past is visibly mapped out in faint white juts that jaunt across the olive skin of my arms and traverse into deep sinewy canyons; they are detours that innocent little fingers have always known and lovingly traced as they soothed themselves to sleep. Disconnected from and ashamed of such a burdensome history and its physical manifestations, I hoped to leave it all behind when those innocent beings entered my world.

The canyons healed long before we drew those breaths together and the map of my past rarely crossed the junket of my mind until the hot rays of the summer sun shed the layers of concealing sleeve above and revealed the delineations below, and deepened the hue of the surrounding skin and divulged my Mediterranean descent.

Recently the topography was more present; my map was mentioned and questioned by those not as kind and innocent as my tribe. I felt thrown asunder.

How many noticed and what did they think about it? Did they think it undermined my ability to navigate the rocky roads of our current journey? Because, I certainly started to fear that myself.

I began to have a deep desire to erase the pox-marked skin of my arms, to eradicate the troublesome nature of my past, and pretend that my life began somewhere on my more recent track; but, I could do that no more than I could miraculously heal my daughter’s rare disease, right our off-road travels, and soften our bumpy trail.

Confidence eroded from under me like soil washed from a mud packed path under the stress of a traversing vehicle.

In the growing shadows of the late evening my son ran his fingers across the deep crevasse vertically demarcated in my inner elbow and my mind traced back into the shadows of my past. He lovingly soothed himself as he always had on “Mommy’s tickling spot,” and gently stroked as he let the bumps and bruises gained during the travels of his day melt away in my loving embrace. I held the juxtaposition of past and present. How very similar and very different the constant crisis, arduous and pain-filled days. In that moment, as our breathing slowed and synced I also held the resilience, the great love, and the courage.

I realized all the light to match the dark—the yin to the yang—that helped me survive the hard course of my past—all that I learned—prepared me for riding through the chaos of the present. I breathed with him bolstered by a new confidence. It mattered not the thoughts of others but the knowledge of my soul.

The factors of my resilience pulled me from the precipice and aided me along my way in the past, and, because, I exercised them, out of necessity, I know them intimately and impart them intuitively to my children. I emanate them as our breathing synchronizes and they trace the pathways of my love; they take from it all the deep devotion, boundless resilience, passion, advocacy, respect, and kindness they need along the way.

Contributors:

Very practically, Rebecca is a special education advocate.  Lover of the mind and its workings in her former life she was a clinical neuroscience research assistant; also lover of statistics she spent a stint as a systems and performance analyst.  Fundamentally, she is a lover and defender of children, and that is a very good thing; because, she has two who need her very much.

She dedicates what time she can to raising awareness and funds to find a cure for the rare genetic disorder with which her daughter was born, Tuberous Sclerosis Complex (TSC).  You can learn more about TSC here. Her Website is www.onjoyandsorrow.com

A visual artist and writer in Nova Scotia, Canada, who follows her inner voice. Barbara is the author of two published memoirs: “Floating in Saltwater” 2016 and “Balancing Act” released in September 2017. Her focus is on healing and self-empowerment. You may view more of her artwork and read her fascinating story here: http://www.barbaracarterartist.com/About_The_Artist.html

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