Trees shake off winter
Life blows in on the spring breeze
Resilience in bloom
The tree’s roots reach deep
Through winter’s solid frozen soil
Shelter for soul’s spark
When fog settles deep
With gloom it’s best companion
Forget not your light
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.
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.
Sun struggles through gray
Light wrestles prevading gloom
Day breaks nevertheless