On Intelligence

chess challenge

My computer rang with the familiar ding of new mail.  It was the report from the neuropsychologist, a specialist in testing intelligence and academic performance, on my daughter.  No stranger to these types of reports, I opened the file cautiously.  It is never an easy  task to focus on all that one’s child cannot do, which, unfortunately, is a common exercise for the parents of developmentally delayed children. Nevertheless, her scores shook me, and I feared for her future.  Based upon the numbers alone, the outlook for future education and employment seemed nonexistent.

A few days later, I had to tell her her sternly to, “Hurry up!”, during an epically slow morning routine performance.  She looked at me, near tearful, and said, “Mama, please don’t call me dumb.”  It was as if the floor fell from under me as my stomach dropped like the rapid decent of a roller coaster.  I inhaled sharply and said, “I would never call you dumb, sweetheart,  you aren’t dumb.” And, she isn’t.  No test score could ever change that, because tests, like an Intelligence Quotient or IQ test, are but a snapshot in time that measure a very narrow aspect of a human being.  At that moment, I realized the report was not a reason to fear for her future because she is so much more than one report could ever capture.

These are the things an IQ test can’t measure:

Her joy.  I have yet to meet a person as joyful as my daughter.  Her happiness radiates from her like a beacon of light inviting you to join her in her bliss.  For a child who has suffered much in this world, she emanates a warmth and full embodied glee that no test could measure. 

Her sweetness.  She is replete with innocence.  It colors all she looks at with a warm rosy hue.  She is kind and generous.  Her giggle is next to none.  She finds something to love about anyone she meets. It is this happiness that draws people to her.  People want to help her and stand by her side because her contentment is contagious.  No test could ever tell you that.  It is measured by her smile, her warmth, and the number of people who step up to move along in this journey with her.

Her sense of humor.  My kid is funny.  Her goofy, slapstick ways can bring a smile even on the darkest of days. 

Her perseverance.  Since birth, the deck has been stacked against her.  Nevertheless, she persists.  When the tests ask, when did she walk, when did she talk, etc., what they do not ask about is the sheer tenacity it took for my girl to take those first tentative steps at nearly three years old. 

Her problem solving abilities.  If there is something in the house she is not supposed to get (like the Halloween candy), that girl is going to find a way.  She will take any measure necessary, including climbing on precariously stacked items to get what she wants.  She uses the same astute problem solving to navigate her way through a world that isn’t exactly built for her.

Her creativity.  Our girl is prolific with arts and crafts.  She is like a McGuyver.  Give her pipe cleaners, buttons, paint, and pom-poms and she will have a whole village of assorted animals constructed in no time.

Her fantastic memory.  There is nothing that my daughter forgets.  She learns huge amounts of information from sheer memorization.  She once told us if we swallowed gum too often it would make a bezoar in our stomachs.  Who knew?  It’s a real thing.  A bezoar is a big mess of indigestible stuff that gets stuck in your digestive tract.  She knew because she heard it once and memorized it.

These may seem like small things, but they are in fact what give me the most hope for her future.  The truth is that she will always need more help than the average person to navigate this world.  It is also true that there is something about her that is magnetic and draws people to her to help and that magnetism isn’t going anywhere. The IQ test is one tool, one measure, at a moment in time.  It provides informations about certain strengths and weaknesses, and places that need intervention.  It doesn’t define her.  What defines her is so much greater and than a score on a test.

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.

 

On Caregiver Burnout

photo of person sitting on tree stump near body of water

There are days I cannot imagine the next.  The cost of mothering two complex and fragile human beings feels too great.

My life is ruled by simultaneous schedules and chaos.  I am bone tired and weary; there is little rest.  The mirror betrays me; I do not recognize myself.  Nothing is enjoyable and time marches past my passions and activities of leisure in which I no longer engage.  The ability to maintain friendships evaporates until all that was left of me is the role of caregiver.

And, all this is meant to stay secret.  I must put a mask over my malaise and soldier on–no matter the cost.  There are days when the price is too high and I find myself wishing time would stop and the weight would lift.

This is what caregiver burnout feels like.  It is both a physical and existential threat.  It happens when the role of caregiver consumes the self.  For parental caregivers, it also consumes one’s parenting.  Life becomes about the job of caring for one’s child(ren); one becomes an automaton providing care.

Depression remains a taboo subject as is the similar symptoms that arise from caregiver burnout.  Symptoms include but are not limited to: feelings of sadness, helplessness, or hopelessness; irritability; loss of interest in things that bring joy; sleep disturbances; reduced or increased appetite; trouble thinking or concentrating; unexplained physical complaints; even thoughts of suicide.

It is often more of a taboo for parental caregivers to express these thoughts and feelings because the roles of parent and caregiver are so blurred.  To admit that, at times, caregiving for one’s child feels depleting, hopeless, and grief-ridden is a faux pas; because parenting is supposed to be hard, yet fun, and rewarding.  Moreover, parental caregivers do not want to portray their children as a burden.  We feel overwhelmed to a point that caregiving eclipses the typical experience of parenting.  This in and of itself causes a great feeling of loss and grief.

I can’t survive this way; I don’t think anyone can.

Caregiver burnout is not a failing it is a symptom.  Caregiving cannot happen without the integral parts of one’s self and personality being nurtured; it is about caring both for yourself and the person for whom one cares.   For a parental caregiver, parenting cannot all be about providing care or the parent-child bond suffers.  It is when we neglect ourselves and our many roles as a person that we experience burnout.

I am daughter, sister, wife, friend, mother, caregiver, writer, artist, lover of documentaries and good books, bitingly sarcastic and sometimes funny, silly, caring, kind, compassionate, loving, playful, and more; I am also sad, overwhelmed, uncertain, and fearful.  It is when I get stuck in one part of me or another that I experience burnout.  When I am able to bring little pieces of all my parts into both my parenting and caregiving, I am refreshed.

Self-care is often talked about as the panacea for burnout.  But, self-care is not always some grand, time-consuming thing like a day at the spa, beach, or even a bubbly bath at home (though these are wonderful activities).  Self-care starts with honoring each part of one’s self and making space for those parts amidst all the chaos and responsibilities.

For me, it can be as simple as honoring the artistic part of me and grabbing a few coloring books and the kids to enjoy some coloring.  Or it could be as simple as honoring the playful, silly, and funny parts of me by making faces and sounds while delivering medication.  It is making space for all of one’s beautiful parts to breathe–even the sad and overwhelmed parts.  It is allowing a good cry in the shower; telling a good friend “I’m really overwhelmed” when they ask; or asking for help when it’s needed.*

Today, I made some breathing room for my writer and the day already feels a little brighter.

*If you experience feelings of hopelessness or thoughts of suicide please reach out for help.  The National Suicide Prevention Lifeline can be reached by clicking the link or at 1-800-273-8255.

On Love and Fear in Motherhood

mother and child

He pulled in close to me and nestled his head in the crook of my arm.  These simple displays of affection are some of my most treasured moments in this life.  I am his mother and he is the healthy child I dreamed into existence after the birth of my daughter with a rare genetic disorder.  He is brilliant, exuberant, affectionate, and unapologetically his unique, seven year old, self.

He has healed me and broke me.  And, with his help, I have grown into the authentic and unapologetic mother both my children need.

When he was born, I was a mother with a deep-running crevasse through my soul.  Shattered by the ever growing medical complexities of our daughter, I could not imagine motherhood that was more than survival.  Only 20 months younger than his sister, I was still in shock and grieving the loss of the motherhood I imagined.

My early motherhood was ruled by fear.  The deep and enduring love I had for my children terrified me.  Love is both light and dark–powerfully abiding affection and compelling fear of loss.  I was stuck in the terrifying shadow of loss.  Even his heathy birth did not pull me from the precipice of anxious mothering.  When something rare and devastating happens to one of your children it can seem as though that soul shattering devastation is what one can expect.

When he was an infant, I spent many-a-night stripping him naked and inspecting him for any signs that he might have the same rare disease as his sister.  I did not understand the calm mothers who surrounded me; I could not comprehend why they told me to relax or their gentle reminders that he was healthy.

Yet, as he grew and surpassed milestones his sister was yet to achieve, I realized that mothering in fear was a choice.  Time and fate would march forever onward and nothing I did would change that.  In the meantime, sidled right next to that fear was the warmth and ease of adoration.  I need to choose to appreciate both.

His ease and health healed me.  Then suddenly broke me again as accepting his bounty highlighted my daughter’s loss.  I emerged in the in-between and my motherhood blossomed.  And as time passed, I was continually broken and healed a-new with each passing phase.  When he began speaking sentences, went off to kindergarten, to the day he asked me what would happen when my husband and I die and would he have to take care of his big sister.

As a mother I am fierce, deeply loving, silly, reserved, playful, regimented, anxious, confident, unapologetic, fearful, and resilient.

I am the mother I am because of all that my children have gifted me.

 

 

 

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 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.