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
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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 Drowning

Drowning is silent; there is no grand cinematic splash, flail, and scream.  True drowning is insidious and deadly. The once confident looking swimmer is suddenly gone with no yell for help and no sign of distress.

I am a fiery, powerhouse mother of two children with disabilities and I feel like I am drowning.  My drowning is as silent and insidious as the real thing. My drowning is slow and it looks well groomed and smells of perfume accompanied by bubble bath; it gets to school on time; volunteers for the PTA; then, arrives at home to face the mountain of responsibility and sinks below the surface into the dark depths.

Do not let my functionality fool you; I feel like I am drowning.

I look calm and cool above the surface while my legs frantically kick below to keep me afloat.  My legs are tired and cramped.  They have been kicking for years–since the day I sat cherry faced (from steroid shots) and smiling at my baby shower pretending to be carrying a healthy infant.  No one, save for a select few, knew the baby swimming around in my belly had a body riddled with tumors and would be born with the rare genetic disorder, Tuberous Sclerosis Complex (TSC).  I was drowning in grief, in fear, in appointments for myself and my baby; and, I was excited to meet my growing baby, surrounded by friends and family celebrating her.  A piece of me slipped below the watery depth that day.

My drowning is piecemeal.  It has happened bit by bit over the years.  I have lost pieces of myself to the crushing responsibility and lack of resources.

Today I tread tirelessly, a child in each arm, to keep us all above the surface.  I feel the tug of riptide–the school calls, the emergencies, the medical crises, the new diagnoses, the day to day battles, the behaviors, the therapies, the endless appointments. It threatens to pull us all under in totality and I tread on because I refuse to let this life claim my family. I am buoyed by my love for them–by our love for each other.

I am tired and I need help; and, I will continue to tread on. You may not know all that is happening below the surface. I look like I can do it all but one cannot tread water indefinitely without support. And this world is just not built to support families like mine–the multitude of need is far reaching. The cost thus far has been high. The truth is below the surface there are pieces of me slipping away bit by bit while I wait for someone, something to help.

Nevertheless there is a bothness to this world that is mysterious. I look the model of strength, calm, cool, collected togetherness while I feel like I am drowning. I am losing pieces of myself bit by bit while I gain new perspectives on this wide and wonderful world I would never be privy to without my beautifully complex children. The love, pride, and joy I hold for my family gives me great strength and requires strength from every fiber of my being. I may feel like I am drowning and I am kept afloat by the hope I hold for our future–no matter how small it may be at any given moment.