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 the Becoming of Motherhood

woman standing on rocky shore during day

She is like the ocean–soft and powerful.  Her moods come in waves, alternately lappingly playful and ferociously destructive.  She is strong and resilient with a hidden undertow.  And I am her steadfast shore–velvety sand and sturdy rock.  Her waters shape me.  Conversely my topography affects her.  We are symbiotic and occasionally at odds.

***

Motherhood is about becoming.  One can imagine the type of mother she will be and yet mothers must be made.  They are born the day one starts her relationship with her child–be it in the womb or when the child is gifted to a mother through adoption.

She made me a mother.

The day she was born I did not know if she would cry; the doctors were not sure either.  She had tumors in her heart, likely some in her brain, and perhaps even her kidneys.  My sweet baby girl was handed to me with a rare genetic disorder. I knitted her together with this disorder in the waters of my womb.  A disorder marked by benign tumors in her vital organs, epilepsy, autism, developmental delay, behavioral issues, and more.  My motherhood made by both her and her disease.

When I dreamt of motherhood I imagined myself enjoying sweet infant snuggles, playful and challenging toddlerhood, all the way to dancing at her wedding.  I did not imagine hospital monitors, multiple medications, seizures, early intervention.  My girl has always been beautiful, life-giving, and free as the ocean and equally as unpredictable.  Motherhood is unpredictable no matter one’s imaginings.  This is why mothers are created.  There is a beauty and sadness in this–a loss of one’s imaginings of the mother one might be and an exquisite becoming into reality.

One tends to think of mothering one’s children into who they will become not of becoming herself.  The reality is our children make us as much as we make them.  They are born into this world their own beings who exist within themselves just as we existed before them with our own traits and qualities.  Motherhood is about loving, nurturing, and honoring who your child is no matter what–disease, disability, difference, sexual orientation, etc.  That loving, nurturing, and honoring is what shapes us–the relationship between the waters of the ocean and the steadfast shore.  In turn our motherhood changes who we are as a person.

I am continually becoming.

On Caregiver PTSD

mother statue

Traffic was at a near standstill.  I was acutely aware of the firetrucks and ambulances piling on the highway for the accident on the opposite side.  My chest filled with a small warm feeling I have come to know as the start of the adrenergic response.  I was safe and I assumed everyone else I loved was as well, yet my mind no longer knows the boundary.  All it takes is the errant whistle of siren on the wind for my body to react, for my mind to shuffle through all the previous emergencies, and all the potential possibilities.  It’s become faster as the years pass and the collection of emergencies compound.

And then, it came.

My phone rang, it was my husband.  The school had called, she was seizing again, they called 911, an ambulance was on the way.  My baby girl, alone, with no way of either my husband or myself to get to her.  The small warm feeling in my chest exploded into an all out inferno and I rerouted to the hospital.  I was nearly blinded by the flashbacks of each and every emergent seizure.

This is the reality of parental caregiver post-traumatic stress disorder (PTSD).

I arrived at the hospital before she did and once she got there I didn’t need them to tell me where she was; the trauma room is an all too familiar nemesis.  Everything else disappeared and my vision tunneled on her.  She was barely breathing but no longer seizing.  All emotion was cast aside and logic ruled as I ran down all her medications, the order of medication administration for similar seizures, her seizure signs, and general medical history.

Quickly she began breathing again on her own and waking from the medication induced stupor.  She survived once again–beautifully resilient.

We survived once again.

As the adrenaline started to fade in rushed the blowback from PTSD.  My brain attacked me. I knew looked like a detached mother–hyperlogical and unaffected by the life threatening situation in which I found my daughter.  I’m well acquainted with the sanctimonious online mommies who judge the videos of tragedy and remark how they could never be that composed.  Yet, tragedy and lifethreatening are our regular.

Was I detached?

This is the reality of PTSD.  It warps the brain.  Over the next 48 hours I examined every possible thing I did or didn’t do in my recent and not so recent history that “caused” the latest life threatening event.  My brain tried to create control from a situation over which there was and never will be any.

I wasn’t detached I was dissociated–separated from the emotion–until it was safe to feel them once again.  I didn’t cry until 72 hours out–until I was really sure she survived and I could face the reality of the terror once again.  It was then it came in heaving, racking sobs that I stifled in my pillow as to not wake the house.

And today?  Today I got up and washed my damned face.  I drove her two hours to her neurologist as I was pulsed with a tiny infusion of adrenergic warmth every time she coughed from her car seat.

I did as I have done for her whole life and as I will for the remainder of our lives together.  The spectre of trauma always looming.

 

On Awareness and Activism

Joy and painTomorrow is world TSC awareness day. My one ask is you wear something blue for Kaleigh and her friends. Wear blue. And read this. That’s it. (It’s a long read but bear with me…)
This is what Tuberous Sclerosis really means to me and my family.
TSC is exuberantly walking in to see more pictures of the baby growing inside you and walking out a changed person. It is waiting in the still shadows of the ultrasound room for the specialist to be called down as you stifle tears. It screaming at the silent and still baby in your belly as you rush yourself to the hospital, “MOVE BABY GIRL! STAY WITH ME! JUST MOVE!” It is the sweet triumphant sound of a screaming, pink baby. It is surrendering your sweet newborn to doctors and massive machines and tests. It is the inexplicable joy of taking the daughter you were told may not make it to birth home. It is the love surrounding her. It is a blue and white striped shirt with a blue headband on a smiling 4 month old going to a routine appointment only to find that she is in heart failure. It is PICU stays and discharges. It is tiny bodies besieged by seizures. It is hour upon hours of therapy to learn to hold up her head, roll, laugh, eat, crawl, talk. It is tears of determination. It is hard work. It is a breath holding, adrenaline rushing, sight narrowing, mind clearing experience in which there is no time to panic only time to act. It is silent prayers and ones screamed at the top of your lungs to a God you aren’t even sure exists because you can’t imagine an entity that would allow a child to suffer. It is tumors and medication schedules. It is saying Subependymal Giant Cell Astrocytoma like a boss because the term is burned into your brain, because it is a scary, scary thing in the middle of your child’s brain that could kill her. It is learning to read an MRI without a medical degree. It is taking charge. It is learning that advocating for your child can make you look like a huge B and it is necessary. It is the soul crushing experience of resuscitating your child. It is hearing the long awaited “I love you” after hours of delusional screaming in excruciating kidney failure. It is the weight of a lifeless toddler in your arms. It is catching the stumbly child you waited 28 months to see up and walking on two feet. It is avoiding public bathrooms because the hand dryer is more potent than kryptonite. It is jumpy, spinny, stimmy, kinetic joy. It is tears of joy upon hearing a tiny uttered “uh-oh” after a two and a half hour seizure. It is ambulance rides. It is tiny whispered “Friends?” and her excited expectation of hearing me say “Forever.” It is a demand that I ask for kisses only to be met with a yell of “No KISSES!” a giggle, and a lean in to accept the forbidden kiss. It is learning to write after 9 years of determination. It is getting your child fitted in her brand spanking new bright green wheelchair because even though she can walk she still needs a damn wheelchair. It is defying all expectations. It is singing in the backseat on long car rides to specialists.
TSC is joy and pain. It is heartache and healing. It is patience and anxiety. It is fear and steadfastness. It is rock bottom and jubilation. It is tenacity and acquiescence. It is holding on and letting go. It is acceptance and rejection.
It is love. All abiding, never ending love.
TSC is my family. TSC is as entwined in our existence as it in Kaleigh’s 16th chromosome. #IamTSC #WorldTSCAwarenessDay

On Fighting for One’s Life

hospital

There are no words for watching your child fight for her life.  Instead, there are beeps and humming and the mechanical sounds of that which is not human but used to sustain the very human who is most precious to you in this world.

The human body is both terrifying and remarkable.  The fragility of life lay juxtaposed with its resilience. In both manner it is breathtaking.  It is a blessing and a curse to bear witness to the raw power.

It was Wednesday.  Winter pressed heavy on our household.  The spectre of illness swirled ’round.  News flashed with reports of norovirus, flu, and measles–all background noise.  Stacks of papers filled my office–IEPs for my children and other children who needed help, insurance forms, financial planning, medical documents, and the veritable detritus of parenting a child with a rare disease.  I was hunkered in for a day of paperwork.

It did not surprise me when I received a call from the nurse who reported my daughter was looking tired and complaining of a headache and stomache.  I picked her up from school and, as expected, she spiked a fever.  She was chatty and pleasant; she had an appetite; she even annoyed the heck out of me.  I prepared for the typical childhood virus with a little added flair due to her underlying medical conditions.  I certainly was not prepared for what was to come.

Three days later she was in the PICU fighting for her life.

There was nothing I could’ve done differently to prevent it. (That didn’t stop me from blaming myself)  Nothing can prepare one for the sudden silence.  It is deafening.  She was quiet and my mind was screaming loud.  What if I had brought her in to the ER earlier?  But, I had brought her to the pediatrician and he said she was ok.  What if I had held one medication?  But, that wouldn’t have mattered.  What if?  What if?  What if I could’ve done something different to protect her?  What if I caused her Tuberous Sclerosis Complex (TSC)?  Perhaps some inherent flaw in me, my character, my body, my soul caused her TSC, the tiny mutation on her 16th chromosome, which caused benign tumors to grow throughout her vital organs and wreaked havoc on her bodily systems.

Yes, yes it had to have been me.

In all the silence of her sickly slumber the deduction was that the fault and control lay with me; because, the truth was too terrifying.  The truth was like the erratic beeps and buzzers erupting from the machines crowded around to monitor the goings on inside my baby–that there was no predicting or control.  There was only vigilance.

Her body was and is remarkable and terrifying; and, I had and never will have any control over that.  I could and can only love her and be vigilant.

When her silence turned into screams I held the sacred space that is a mother’s love.  I couldn’t fulfill the motherly task of “making it all better” for her and I won’t ever be able, but I could and can hold the loving space for her resilience to bloom.  I stood firm and reminded her who she was as her body tried to steal that from her. I held the ghosts of every PICU and hospital stay past at bay for her (and me) to make space for whatever was to come.  I hummed softly in her ear the tune I have sung to her since I rocked her in the NICU as a preemie and she settled.  And her body began to heal.

We have been fortunate to celebrate her resilience and full recovery!  Yet the shadow of life’s fragility haunts.  The memory of the fight follows like a faint monitor beeping drumbeat; a ghostly shadow that lay just behind the veil of the exuberance of life; or deja vu that steals one’s breath midsentence.  Life is both wonderful and terrifying if only for one word–love.

There are no words for watching your child fight for her life.  There is only raw emotion; primal fear; all-consuming love; and breathtaking awe.

On Never Enough

The sounds of “The Greatest Showman” reverberated off the windows of the car and her tiny voice sang along. It was one of her new skills and, by far, my favorite–she is a beautiful singer to boot. I took solace in the melody and her voice as we continued on our way to Boston and her speciality appointments.

The juxtaposition of her blossoming development and the fact that we were traveling to urgently scheduled appointments for difficult issues related to her complex medical diagnosis did not elude me. Our life together is this constant dance of uncertainty and fear riding along side simplicity and gratitude.

One of her favorite songs began and she sweetly sang along “never enough, never enough…” My mind wandered and weaved forward to the appointments of the day and the Herculean task ahead and back to the heartbreaking texts I received in the morning from a fellow mother parenting a child affected by the same rare genetic disorder as my daughter. I tuned back in to her singing.

All the stars we steal from the night sky
Will never be enough, never be enough
Towers of gold are still too little
These hands could hold the world but it’ll
Never be enough, never be enough
For me, never, never”

As I listened, I landed firmly in that space between fear and gratitude. The space is the vacuous home of “never enough.” It is the stark reality of my life raising a child with a rare genetic disorder and extraordinary need. All the moments we stole that we were never meant to have, all the money it took, all the change we made in this world to make it a better, more accepting place for her will never be enough for my sweet child.

It will never be enough to delve deep into her genome and repair the small deletion that sentenced her to a lifetime of complex and immense struggle. A mother’s number one job is to fix all that ails one’s child and I cannot. I will never be enough. We are further stuck within a medical system that is woefully unequipped to handle her needs now and in the future.

Nevertheless, we drive on–this time to another appointment for a Hail Mary treatment. There will be many more. The future will surely hold more therapies, new medications, treatments, clinical trials, and we will weigh the pros and cons of all. We will never stop because she is more than enough.

The song shuffled and she began to belt out a new tune. I was jolted out of my free fall. She really is the sweetest, hardest working, most glorious miracle; she is more than enough. She is love and my love for her is indescribable. Perhaps that is enough.

Yes, perhaps love is enough. It is what I will fill the space between fear and gratitude. I will fill “never enough” with love.