"Illness is the night-side of life, a more onerous citizenship. Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick." Sontag
I feel like we are living in the space occupied by a grace note - a shorter time before a longer lasting period.
How is it possible that another child of mine is so incredibly ill ? And with an illness so incredibly different than that which threatened the future of her sister?
I thought whatever kharmic debt was owed had been paid through the tears and the clinical dosing trial endured by my oldest daughter. That the leap of faith made by me as a mother - taking that trusting hand; warm and plump with childhood -- into mine to jump off the cliff into the abyss of unknown and emerging medicine was my one-time entry into the black hole of maternal hell.
How hard that was for me as a DES daughter - who, ironically and beautifully - became the parent I am today because of a misplaced medical trust in a pharmacology that destroyed my fertility and put me in the shadow of the nightside.
I thought - this is it. I have lived with the knowledge that there is no cure for my oldest daughter's illness - and watching her decline slowly as the liver enzymes indicating the death of that organ continued to rise with her viral load. And then the promise of the clinical dosing trial dwarfed mortal sorrows; sorrows like suddenly losing the girls' dad to assume the role of sole provider and parent.
I had no idea what was in store. That what was to come would dwarf the disruption of "the new normal" ; making the drug trial held in the pediatric research oncology infusion center look and feel benign. How was I to know.?
Even in a mother's state of anxiety - I did not imagine it possible that I would have two children sick with disparate and devastating illnesses. I knew my youngest was sick with a chronic illness that interrupted our lives and caused tremendous pain - but I had not worried about her mortality.
Mortality - something raised by my older daughter's physicians as her illness, without intervention, was so evidently a life ender. I did not imagine that I, or any parent, would experience the lightening strike of two critically ill children.
I was unsuspecting; naively enjoying the afterglow of the "she's cured" proclamation that followed the conclusion of my oldest daughter's clinical trial. Trying to feel my way into the "normal" of "just" being a solo parent to two amazing girls; one who happened to live with a chronic illness. The light of cure was starting to banish my residency in the nightside.
That was less than two weeks ago - when on the way to acupuncture - sleep walking my way to caregiver's attempt at self care - I would get a call from a pediatrician that would announce what I knew to be true and dreaded.
That I would sit, in my organic cotton irony of health with a steel cup of green juice, on a curb in Oakland sobbing between parked cars - weeping for the first time -like a child consumed by fear... the terror of monsters in the dark coming to steal away those you love.
To realize that my second daughter was so ill that emergency brain scans were necessary and that there was no period of maternal grace. And that I as a mother would mourn the loss of the illusion of a future secured for my child while still unable to fully understand that my oldest was "cured".
The steroids we are treating my youngest with are a temporary reprieve - a moment of chemical grace - that cures nothing and promises no real hope - but for this incredible moment alleviates what feels like a curse.
I know this is a moment that is borrowed and slight. And no matter how much I wish it to be forever- it is not. The harshness of impermanence -- to realize that this moment of living like "normal"., like all others, is a merely a stay from our return to the nightside.
I am mermaid and rebel - a mama to two - I believe in art, music and magic and the rest I cover up with glitter and tattoos.