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 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.