On Preparing for the Future

child hand in adult hand

“Mama, when I grow up I want to be an astronaut and see the stars.”

“Mama, when I grow up, I want to be a doctor.”

As always, I say, “Yes, sweetie, that’s a great idea.”

The truth is much more complicated.  My daughter’s sweet flights of fancy bring to light a conversation we, as a family, try to avoid: what will adulthood be like for our forever child?

We avoid the conversation, yet act like some things are fact.  There is an unsaid knowing that we will be caring for our medically complex and intellectually disabled daughter in some form for the rest of our lives.  What that will look like over time is uncertain at this time.  There is both sweetness and terror in that statement.  We know her implicitly; we can guess her needs without words; and, we know exactly who to call and how to handle any medical needs that arise.  No one will ever be able to care for her like us.

Nevertheless, we will not live forever. One thing remains, every day is one day closer to the future and adulthood.  This reality is even felt by our seven years old.

“I’m way younger than you and Daddy.  That means you will die way before me, and there will be no one to drive sister around.  Will I have to drive her around to all her appointments and everywhere?” he asked one day.

“Buddy, that is a long way off, and we will always make sure both you and your sister are taken care of even if we are not here.  It will always be your choice if and how you help your sister,” I replied with a heavy heart.

I meant that wholeheartedly, yet daily life is so all-consuming we rarely have time to plan what will come next week nevermind years from now.  We have named guardians for our children in our will, but do not have an actual safety net of long term measures.  It is difficult to look to the future when the present is so all-consuming.  Nevertheless, my mind drifts there when I help her with everyday tasks.

How can I help her learn to become independent and bath herself efficiently?  Dress?  Read fluently enough to understand written directions?  Teach her money so she can make everyday transactions? Learn to use a phone?

The list seems neverending.  The truth is that we cannot teach our daughter all these things on our own.  We cannot plan for the future if we are drowning in the present.  And, we, as a family, cannot progress in the present if we are fearful of the future.  In the famous words of Hagrid in J.K. Rowling’s Harry Potter series, “What’s comin’ will come, an’ we’ll meet it when it does.”  There are ways we can prepare now to achieve success better when the time comes.

  1. Utilize the help available in the present to prepare for the future

The saying goes, “it takes a village to raise a child.” It takes a village of experts to help raise our daughter.  She is young and capable; though it does require the help of experts to teach her the necessary skills for successful independent daily living.  Optimizing the support we receive now increases the likelihood of future success.  Applied Behavioral Analysis (ABA) can help explicitly teach her complicated activities by breaking down tasks and reinforcing success.  Physical therapy, occupational therapy, and speech therapy all augment and increase her abilities to meet the increasing responsibilities of childhood through adulthood.

2.  Hold those charged with teaching her accountable.

Even when we use the resources available, there are times when those charged with helping her on her way to independence fall short.  School is vital to her success and often the most challenging area to get her what she needs.  Teachers are best equipped to help my daughter learn complex tasks such as reading, writing, and math.  Laws are guiding the education of those with disabilities, the Individuals with Disabilities in Education Act (IDEA), section 504 of the Rehabilitation Act of 1973, and the Americans with Disabilities Act (ADA) ensure she is given what she needs to learn and progress. We must hold the school to the task and make sure they adhere to their obligations to her based upon said laws.

3.  Maximize her chances of independence with follow-through.

There are times when it is so much easier to do something for your child rather than allowing them to struggle through the task.  This is especially true for children with disabilities.  The time and dedication involved in allowing my daughter to try, even if it will end in her needing my assistance, can be overwhelming.  It is much easier to dress her than to watch her struggle with dressing and use all the techniques taught to us by her ABA therapist, occupational therapist, and physical therapist.  While easier in the short term, it hampers her in the long run.

4.  Have the hard conversations.

“What is comin’ will come,” and we must prepare for it.  The unsaid always seems more daunting than that which is brought to light and explored.  The practical is only half of what must be worked through for the future; the remainder is the feelings that come along with that.  If emotions are not explored now, they will get in the way of any practical plans we make. We cannot imagine what it will feel like for our daughter to be independent or require care from others if we do not discuss it.

5.  Start preparations now by allowing others to help care for her.

We will always be the best caregivers for our daughter.  Even so, a future without us is inevitable.  The more practices both we and she have with others caring for her, the better we all will fair in the long run.  It helps build our daughter’s flexibility and independence to allow others to step in for us.  It also helps our wear with all to have a break in caretaking.

The more we work on actionable steps in the present, the better the future for our entire family.

 

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On Simple Joys

cars on highway

My hair whipped back and forth rhythmically, stray strands tickling the tip of my nose, as she squeed with delight.

“Fresh air!!!!  Aahahah!  Hahahahahaha!!”

The dark road stretched before us as the individual lines of tree trunk and limb blurred into mottled earthen browns, yellows, and greens; cars whizzed streaks of metallic hues; the world spun around us as we continued windows down, wind rushing in.  The sound of rushing air and passing traffic was surpassed only by her delighted squeals.  She erupted in spontaneous song; it was an exercise in pure and ecstatic joy.  I felt my shoulders slacken and melted into the drivers seat–the hint of a smile crept across my face.

For me, the car is a 2,000 lb torture chamber; it signified everything tortuous, dangerous, and arduous about the day to day managerial parenting of a child with Tuberous Sclerosis Complex(TSC) and accompanying exceptionalities.  I used to love to drive–the freedom, the escape, monotony, the sense of adventure–and it was yet another thing that TSC had tainted.  Driving was a task, a risk, a means to an appointment, a tense, fast, emergent drive to the hospital, it was an interrupted family outing dashed by another seizure; I drove hands muscles tensed, knuckles white, nerves raw, and adrenaline flooded.

All of this melted away as my body loosened and swayed with the movement of the road; she was happy–ecstatic, in fact–and that was all I ever wished for on the darkest of days was for her to know happiness.

***

Cars blurred past and Kelly Clarkson wailed on the radio.  It was early October and I was driving, belly round and in the way, headed for another glimpse of our growing girl.  It was bitingly cold for October, clear and beautifully autumnal.  We were headed out to start the celebrations for my husband’s best friend’s wedding the next day on the Cape.  The world was hopeful and full of beginnings.

I undressed and lay on the cold table of the ultrasound suite drinking in the floating images of our little girl preforming her water ballet.  We fought over middle names and barely noticed the solemnity that fell over the face of the sonographer.  She became quiet and was concentrating taking picture after picture, measurement after measurement.  She invited me to sit up and I did so smilingly; she informed me that there was something wrong with our baby’s heart and brain and that she needed to immediately call the maternal-fetal medicine specialists in, specifically the cardiologist.  I was instantly furious; I couldn’t process; she was wrong and how dare she say without certainty that my baby girl had multiple tumors in her heart and some brain abnormalities.

The minutes stretched on for hours.  My husband magically put himself aside to calm me until the specialist came.  I again had to submit to for more images of the sweet child swimming around innocently inside.  Then came a march of medical students to view the “abnormal fetus” and word after word levied like blow upon blow of mortally wounding weapon; they were giving her a death sentence.  These m*therf*ckers in their white coats with their fancy degrees were talking about my child–our child–who was dancing around on the screen–lit up like stars in the sky, already the apple of our eyes– calling her a fetus and talking about fetal demise–robbing our cradle–without even knowing our names or looking us in the eyes, offering what they equated to a death sentence and they sent me home with a diagnosis that these m*therf*ckers didn’t even pronounce correctly–tubular sclerosis.

I just wanted her to live.

Beyond that, I just wanted her to know happiness.

I sobbed and sobbed and sobbed until I had no breath left in me.  Then snow fell from the sky.  Snow in early October.  I thought it was a very cold day in Hell indeed.

***

The elevator catapulted me back up to the 17th floor.  My shirt flew up and ballooned ever so slightly at the bottom as we went up–it reminded me of the wind blowing in the car window.  The doors opened to the aquarium-esque elevator lobby outside the locked doors to the children’s unit; it filled me with dread and a macabre sense of joy simultaneously.  Ellison 17 is a little slice of home–we’ve slept here, cried here, rejoiced, played with both our babes, railed against God and the cruelty of the Universe.  I was buzzed in and ran back down to our room.  She smiled chubby cheeks pushed in even more by the enormity of the gauze-wrapping turban that kept the EEG leads in place on her head.

“Mama!  I made a duct tape purse with Hole in the Wall!”

“It’s so pretty, baby!  Look what I found,” and I pulled a huge stuffed Darth Vader I got on Target clearance from my back pack.

Her eyes lit up and she clambered to grab the villain.  I snuggled in next to her in the hospital bed, barely aware of the small computer on her back that was hooked into the wall by a wire, or the camera lauding over us like the Eye of Mordor recording every small quirk in movement to correlate it with the computer recording her brain waves.

“You want to play Dr. Panda on your tablet together or with your Ryan’s World figures?”

She snuggled in tighter.  “Make a magnet house for Ryan.”  She smiled, as best she could, ear to ear.

This was our normal.

***

Nine years past the coldest October day my soul has ever experienced and I still think of it often.  What I think of more are the resounding giggles that rise from what seems like the base of her very being and erupt out her mouth like a joyous bubbling fountain when the air rushes in and whips across her face.

On that day 9 years ago, I just wanted her to live, my only other wish was for her to be happy.  It has been my wish every time Tuberous Sclerosis Complex has tried to take her from us and every time this world and her body challenges her: let her live and let her live happily.  Because, from my mind’s eye it seemed impossible to live happily with a body attacking itself with tumors and errant electrical discharges that overcome one’s brain and cause one’s body to go haywire, and with life threatening emergency after life threatening emergency.  This is why I drive white knuckled and shoulders tight and walk around raccoon eyed on the daily.

And, she is a fount of ceaseless joy for me.  I am reminded again, and again, by her that the purest of things–the sweetest, most exuberant emotions–can spring from the simplest, most unexpected places if only you let the window down a bit and give the breeze an opportunity to blow across your path.

On Community

insomnia

The chirr of crickets drifted in the window above me and reached through the dark for my ears.  The pillow case scratched against my cheek, cheap and rough, and I lay eyes drinking in the darkness and waiting for sleep.  My mind wandered through the solitude and I thought of the crickets; crickets who stringed their tune in loneliness–calling out–until their trilling hums united in a wondrous symphony that painted the soundscape of late summer’s night.

My thoughts hummed in solitude like the lonely song of the cricket, and I imagined the thoughts of those lying eyes wide and sleep eluding painting the mind-scape of the night.  All people’s reflections so very different–thoughts of longing, of love, of loss, of guilt, happiness, hope, of joy and sorrow–thought in the shadow of lonesomeness.

Only the most precious, complex, and perhaps dangerous rumination are capable of robbing one of sleep; and we, the parents of the rare and extraordinary, are faced with such pondering often.  Life for us is inherently isolating and lonely; it is lived at an incredible pace; the trumps and struggles are of such a magnitude that it bleeds into the solitary hours of the night.

Rumination like a cat burglar snuck up on me, the unsuspecting victim, and stole sleep only to leave a pervasive state of underling fear and uncertainty.  I was feeling especially lonesome and unsteady as of late.  Both a cherished friend and some close family moved many states away, we made big decisions–such as the one to place one of our children in a self contained classroom–a change in school for both kids, and new diagnoses and ever shifting medical concerns for the children weighed heavy and left us more isolated than usual.

Over the years, Tuberous Sclerosis Complex (TSC) and the other exceptionalities of my children have laid waste to my career outside the home, many friendships, our hopes for a bigger home, and more.  When the kids were young, it was easier to still enjoy some of the same pleasures as parents of healthy, neurotypical children–playgroups and jaunts to the park–but as the years passed and she has remained frozen in time and development we are no longer able to assimilate in that which is built around the typical family as easily.  Our life became more and more extreme–outbursts, prolonged hospital stays, severe financial strain of raising children with exceptional needs; and, the stress increased exponentially.  As the stress increased, our ability to attend social events and lead outgoing, independent social lives outside our family became less and less–forget trying to find a babysitter!  Our days were spent at therapy appointments and ABA, we missed birthdays and barbecues, let down friends and family over and over again.  Some friends fell away, we were blessed to find some new, yet our world seemingly became smaller and smaller, lonelier and lonelier.  I became like the solemn cricket singing out to the night sky in search of another of my kind.

It was easy in the dark hours of the night as the warm September breeze blew out the summer and in the fall and the air settled like a heavy sadness to mourn it all in solemnity.  There was truth to all of this and truth is never a singularity.  For all that TSC and the extraordinary vulnerabilities of my children have taken, for all the isolation, I have also been bestowed many gifts.  I was reminded of this as I listened to the symphonic harmony of the crickets; we have been gifted a camaraderie and community (among other things).

TSC Wave
Power of a wave

Like the very image of waves driven in ink deep into the layers of my skin that connects me to the other parents of children with TSC who bare the same marking, though our stories may be very different, we gain strength from our connection and unity in our rarity.  My thoughts shifted from my deep seclusion and the wreckage of the day–another school disaster, another betrayal by a person entrusted to service our child, and the havoc that rolled down the line–to the village of people who swooped in to help.  There are times when I am buried so deep in the difficulties of our life that I fail to hear the chorus around me.

In one day we had a caring new friend, who knows very little about our sweet children but has been open and accepting of us, alert us to the school issue, my darling best friend–my person–support us with calls and emails and legal research from her hurricane ravaged neighborhood many states away, and another dear person offer to make the cupcakes that I just won’t be able to make for our son’s birthday on Saturday.

I am not alone.  We are not alone; and we are alone.  That is the crux of life.  We are all simultaneously alone in our plight and surrounded by humanity.  We are the solitary cricket chirring a call to his fellow cricket yet surrounded by the deafening cacophony of chirping in the dark summer’s night–alone and together.

I settled in with a new recognition and appreciation for the deep and spreading roots of community we truly have; and, with an understanding that when I feel isolated, misunderstood, and alone in this rare and exceptional life that all I need to do is call on those connections.  That I have people willing and able to rise to the occasion.  And also, that call need not be literal or external; it can also be an internal grounding in the roots of community and the love that surrounds our family.  Because, there are many times when I will still very much be alone in this and that is ok–alone and together.

We are all so much more alike than different.  We are all so much more valued and loved than we will ever know.  We can all call on that in the darkest hours of the night–when the crickets hum, thoughts race, and sleep eludes.  Rest peacefully in the chorus of community.

On What Is

eye

Her eyes are a mix of brown and green surrounded by a grayish blue, like tiny wet marble models of our world; they are mysteriously old like the world itself and hold eons of the unknown.  I could stare into her eyes endlessly, if she kept still long enough for me to do so.  She is breathtakingly beautiful, perfectly imperfect, wild and free, and tragically broken just like our planet.

Water leaked from the blue ocean iris of her eyes, “Mommy! It’s hard!!”

The salty water streamed like rivers breaking the dry sand colored surface of her cheeks and I had to look away before answering her.  “Baby, I know; and, you can do hard things.”

I turned back to face her.  The earthen-clay color of my eyes reflected back in hers momentarily.  I wasn’t lying, but still I had trouble holding her gaze.  The truth was she did hard things every day, all day.  Most things for her are like trying to grow crops from drought starved fields; difficult and seemingly impossible.  Yet, miraculously she grows; like the verdant sprouts that eventually blanket the most unlikely of parcels.

Everyday I wish things were different for her; but, that would be like wishing the wet marble we live on was not brown and green surrounded by a grayish blue.   

On Balance

Balancing Act
Balancing Act
Photo by FRANKYDEE on Pexels.com

Moonlight leaked from the window sill spilling onto the floor making long shadows of the figurines that collected dust on long-overlooked shelves; my breath caught for a deluded second as I mistook the shadows for one of them out of bed.  I collapsed into the chair heavy like the house that creaked in the quiet of the night, groaning under the weight of standing tall for over 65 years.  I had work to do.  

The blue light of the screen illuminated my face and I angrily gnashed keys on my laptop, the ones with the smooth synthetic touch of silicone.  I tried to concentrate on their foreign feel, the artificial sense the overlay gave to the keys; I knew I must somehow construct a similarly synthetic facade to the ferocity of pressure built behind the messages I had to send to the school, subjects as finely innervated as the tips of my fingers; raw, delicate, and real.

Fingers grazed the keys and my mind drifted to the odd position we have been placed by chance; a life that is so excruciatingly public, a strange mix of spectacle and need.  I must spill the most difficult and private to an audience of strangers out of necessity; perhaps out of desperation.  I sat with the house heavy in slumber, constructing a carefully veiled message laced with reference to legal regulation and painfully private detail of my children’s lives; I was struck by the immense need.   

Halted in my clacking I became lost in musing; disability has made my family’s lives like an old time circus act.  The one the audience flocked to watch trapped waffling between amazed baited breath, profound desire to intervene on behalf of the performers, and the wish to shut their eyes tight against the anxiety of it all.  And at the center of it all was me, the show’s ring leader, directing and coordinating, protecting.  

This ring leader, intrinsically steamy and tumultuous, with feelings that bubble dangerously hot and close to the surface, and hands that tremble when angry; conversely, perfectionistic, infinitely caring, intellectual, painfully sensitive, and intensely private.  I was not meant to bridle my Jungian shadow so publicly and ride it for the benefit of an audience to inspire them to do the right thing and provide my children with what they need;  I was not meant to do that as much as I was meant to bask in the glow of a Mac in the dark hours of the night, rather than dive deep into the alternate universe of a novel. 

I’ve worked hard to suffuse the steadfastness this life required of me; but, it always chaffed like the rubbing of an ill fitting shoe.  Unnatural, like the blue glow of the screen that gave way to the silvery natural light leaking in from the window; I never did quite managed the appropriate performer’s facade.  I was harried and pressured, fierce and determined, raw and primal, and, perhaps, a little frightening of a spectacle.  

Typing the innumerable emails of the day to address the latest crises was stifling.  And yet as unnatural as it felt I knew it was exactly what I was meant to do; and I knew as painful and public as it was (and it was going to be forever more) I was made to lead this circus.  I have learned to accept I am just the right mix of ferocity and docility (perhaps I am still working on taming the ferocity).  

I paused my typing and as my fingers were silenced the subtle sounds of children’s sleep sighs made it to my ears; I decided to hit send.  The remainder of crises could wait another day.  Left over lullabies called me up the stairs and like the sounds from the pied piper I followed them into my bed surrounded by my family.  Exactly where I was meant to be.

On Freedom

On Freedom
Searching for Freedom

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 drown 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.