When fog settles deep
With gloom it’s best companion
Forget not your light
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.
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.
In the quiet cold
Bright new beginnings emerge
Gray strength resolute
Sometimes I’m silent
Quiet falling steady snow
My words pile in drifts
Deceivingly heavy hush
Beautiful and dangerous
It was as if my life began the moment she gasped her first breath and it was not; it was the moment my life began anew—my life as a mother. This new life was supposed to be my smooth paved roadway fresh and free from debris—the one I merged back onto after the bumpy detours and construction of the past. But, fate and the universe have plans of their own. Instead, as our family drew our first breaths of air together our caravan careened off-road and entered an equally bumpy, detour filled journey with no maps, no GPS, and no intention of ever returning to the well-traveled, smooth-paved roadway the typical travelers sojourn.
My tumultuous past is visibly mapped out in faint white juts that jaunt across the olive skin of my arms and traverse into deep sinewy canyons; they are detours that innocent little fingers have always known and lovingly traced as they soothed themselves to sleep. Disconnected from and ashamed of such a burdensome history and its physical manifestations, I hoped to leave it all behind when those innocent beings entered my world.
The canyons healed long before we drew those breaths together and the map of my past rarely crossed the junket of my mind until the hot rays of the summer sun shed the layers of concealing sleeve above and revealed the delineations below, and deepened the hue of the surrounding skin and divulged my Mediterranean descent.
Recently the topography was more present; my map was mentioned and questioned by those not as kind and innocent as my tribe. I felt thrown asunder. How many noticed and what did they think about it? Did they think it undermined my ability to navigate the rocky roads of our current journey? Because, I certainly started to fear that myself.
I began to have a deep desire to erase the pox-marked skin of my arms, to eradicate the troublesome nature of my past, and pretend that my life began somewhere on my more recent track; but, I could do that no more than I could miraculously heal my daughter’s rare disease, right our off-road travels, and soften our bumpy trail. Confidence eroded from under me like soil washed from a mud packed path under the stress of a traversing vehicle.
In the growing shadows of the late evening my son ran his fingers across the deep crevasse vertically demarcated in my inner elbow and my mind traced back into the shadows of my past. He lovingly soothed himself as he always had on “Mommy’s tickling spot,” and gently stroked as he let the bumps and bruises gained during the travels of his day melt away in my loving embrace. I held the juxtaposition of past and present. How very similar and very different the constant crisis, arduous and pain-filled days. In that moment, as our breathing slowed and synced I also held the resilience, the great love, and the courage.
I realized all the light to match the dark—the yin to the yang—that helped me survive the hard course of my past—all that I learned—prepared me for riding through the chaos of the present. I breathed with him bolstered by a new confidence. It mattered not the thoughts of others but the knowledge of my soul.
The factors of my resilience pulled me from the precipice and aided me along my way in the past, and, because, I exercised them, out of necessity, I know them intimately and impart them intuitively to my children. I emanate them as our breathing syncs and they trace the pathways of my love; they take from it all the deep devotion, boundless resilience, passion, advocacy, respect, and kindness they need along the way.
Her halting words barely rose above the rumble of the air conditioner. She read laboriously as her afternoon applied behavior analysis (ABA) therapist guided her steadfastly. Suddenly she exploded in frustration; her hand shot out like the strike of a threatened snake and hit the table with such force she made herself cry out in pain. She stood and knocked the chair to the ground screaming, “This is too HARD! I can’t do THIS! I can’t read THIS!”
Across the room my heart shattered for the seemingly infinite time. My chest disintegrated as I remained in a similar steadfast and stoic pose to her behaviorist. In the life of a parent of an extraordinary child, a child with immense special needs, with a rare disease and its accompanying features, including autism, the heart grows the ability to shatter and mend, shatter and mend, in an endless cycle.
My heart broke and I wanted to run and scoop up my baby girl and whisper all the sweet nothings that I understand so deeply and intimately about her life and let her tell me all she needed to about how hard it was to read that book, but I knew I couldn’t. There would be a time for that, but that time was not then as much as it grieved me.
She moved to the couch still screaming like shrapnel flying out from the center of an explosion. Her ABA therapist calmly spoke to her and helped her identify what she could do to help soothe herself. An audible breath hummed across her lips as she nuzzled down into the couch and let out a rattling grumble. She burrowed deeply into a blanket and covered herself in it’s soothing fuzz. Moments later she emerged from her cocoon ready to face the book again.
The pieces of my heart rose in my chest and found their matches reconstructing like something out of the Matrix. I watched her strength in awe, still forced to freeze my facial expression in stoic stillness until she completed her task. I wondered if this cycle would continue like some amusement ride in perpetual adrenaline-laden motion through all her stages of development and my mothering. I felt fragile like the glassen shards of my heart.
A calmness suffused her body and she attempted the remainder of the book. Still halting and jagged she succeeded and exploded, but, this time, in a smile bursting with pride that shone brighter than the rays of midday sun that peaked through the windows’ curtains. Stoic no more, I scooped her up as my heart swelled with pride and relief. Until the next time.
I wished more than anything things for her were easier. Second to that, I wished that there were some way to know if my mothering, and all the therapy, were helping her along in her journeys. For now, I follow her and my heart down the roads love and progress may lead.