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.