I used to love the wind-up to "back to school" when I was a kid. As much as I loved summer; I eagerly anticipated the smell of freshly shaved pencils, the cool breezes of autumn, and seeing my friends. I carried that sense of delight through the decades into the school days of my children.
However, I realized my sense of delight has been sullied by the harsh realities of back to school days filled with IEPs and 504s. For the uninitiated, those are the acronyms tied to the rights for children with disabilities to have full access to public education; individualized plans for accommodations. The "plans" ensure that children, like mine, have access, while at school, to the medications that keep them healthy, schedules that accommodate their illnesses, and other forms of support to ensure access to education.
Before I had sick kids- I was blinded by the privilege of my "ablism". I had no idea that the rights granted to my, and other children, under the ADA (Americans With Disabilities) laws would need to be battled for on a daily basis. I was incredibly naive; I had assumed if I "did my part" the school district would do theirs and implement the IEP, make the medical accommodations, and otherwise ensure full access as afforded by the successful battles of disability rights activists. I was wrong.
This is not to castigate the school or our district, they are not unique in their violations of the ADA and the failure to fully implement IEPs, but just to reflect upon how much my privilege afforded me access to a perspective that is now lost. Perhaps my new perspective is for the better. I have an understanding of how hard "back to school" can be for a child like mine. How taxing it is for the parents and families to never know if their child's medical needs will be met while they are immersed in the childhood anchor of school.
Now while I pick out backpacks and try to find last year's bento boxes and figure out how to wrangle after school activities with illness and career; and schedule school-year weekly medical appointments; I am also securing "self carry" medical letters and second sets of prescriptions allowing my eight year old daughter to administer her own medications. Last year, despite repeated meetings, the involvement of advocacy organizations, the engagement of lawyers, and repeated assurances from our principal and higher ups at the district; the school staff failed to provide regular access to medication and medical accommodations as mandated by IEP. There are no villains in this story, there are no school nurses at our school, nor are there any real resources to accommodate kids with illnesses and disabilities.
But there is the new reality that 'back to school" no longer means looking forward to helping the kids pick out binders and refreshing math skills. It means a return to daily advocacy, back to monitoring the implementation of medical accommodations, and back to the struggle to make school as normal and as accessible as possible for my daughter. And back to remembering and honoring all those living and learning with disabilities.
I wonder if this journey - all the illness and loss - has created a new emotional topography as visible and definitive as the landscapes revealed by other natural disasters; tsunamis and epic earthquakes. Tendrils of hope and tenacity amidst disorienting and alien tableaus taking root to create entirely new visages.
Or if the changes are merely temporary and I will rebuild familiar edifices upon the foundations of an old life, forgetting this new landscape of gratitude, as time smoothes over the rough edges of newness?
I still don't quite believe that we have found a balance and ballast in the face of the rough waters of loss that left us without the girls' dad and Amelia's health. That these moments of wellbeing are our new normal; not fleeting chimeras of promise. Sarah is really cured, I am no longer bed-ridden due to my spine injury, and we are all finding more moments of joy than sorrow.
"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 used to think the weight of tears unshed held my fears at bay; like those small heavy blankets people swaddle their dogs in during thunder storms to allay terror.
I am pretty sure, in my past life, my transgression was to smite a goddess, or three. Did I cross Iaso (goddess of healing) in a former life; steal her man at a party... talk smack about her mama Epione (soother of pain)... or cause her brother Podalirius' ship to sail off course during his return journey from the Trojan War?? I am pretty certain that there was some kind of epic mermaid--goddess mash-up that sent my kismet into a cataclysmic cosmic tailspin.
Or was it my hubris - did I taunt tragedy by thinking we had found safe haven and surrendered our dual citizenship status leaving behind what Sontag calls the "nightside of live"
Or did I, in my punk-rock thrift shopping days, unknowingly, don a necklace that cursed my descendants and share the fate of Harmonia ?
Somehow, someway those beautiful and fierce god and goddesses of healing closed their immortal portals and did not gift through heavenly grace -- health to my children. Health has been a battle hard fought in sterile hallways, ruled by mortals, illuminated with cold manufactured light; and accessed through portals guarded by the gargoyles of the insurance industry.
The "open sesame" to begin the journey is hidden behind actuary tables written in arcane and evolving dialects. These places -- modern temples of medicine -- where super bugs grow, where nature is invoked with projected images of trees and paintings of green fields are a reminder of what has been lost.
Like a mantra, I remind myself that wellness will be invoked through earthly beauty, magic, and love. And healing, regardless of health, will be found in the invisible bonds of golden light that connect our souls to each other and our hopes to the heavens.
I lately find myself drawn to the story of Niobe; a tale that among other things illustrates the wrath of the gods, a mother's sorrow, and the power of tears to fall through stone.
I don't think I had any sense of how powerful the weight of a shadow could be. For years we have lived with the Commander's illness; a viral sword of Sword of Damocles.
Nor could I have anticipated the toll the clinical trial could and would take. In some ways so benign - but a stark reminder of the stakes we have faced. It was also, coincidentally, a particularly rough time for Lala health wise and with what has become the unrelenting pain of her illness.
And then there was, and is the reality of creating a magical childhood when trying to work full-time and manage our precarious finances- all while spending many, many hours and days a month in medical centers, chasing down insurance waivers, reading research summaries, meeting with therapists, emailing doctors, administering and logging medications, and smiling over hidden tears at the bedside of one of my sick children. Or, the one thing that could make me lose hope, the soul sucking relentlessness of advocating for continued access to public education.
So, as I am prone to do - I focused on the good, turned on something to dance to, and tucked my fears away into the little nesting dolls of denial and sublimation that sit next to my heart - they are worn smooth with use and have served me well.
As I tucked them away I noticed the little box, to be unpacked at unknown date, that holds the grief and fatigue of having lost my spouse to a debilitating illness. A loss that sent me spiraling into an unknown and unanticipated world of being a single - and solo - parent.
A single mom. Something I had never entertained as a remote possibility. A lesson in impermanence.
I have learned to let go of so very much. Hands open - release.
Saying farewell to the illusion of health, stability, and having someone to share the seemingly impossible decisions that accompany loving and parenting chronically and seriously ill kids has been transformative. I am now a stranger in a strange land. My north star; to create a sense of scale and to dwarf these unfathomable moments with as much "normal" childhood magic and whimsy as possible.
I learned to be in the moments of healing and hope needed to get through the clinical trial - minute by minute, and breath by breath. To simultaneously, hold and comfort my child, as well as to hold the words of her doctor; warnings of a lifelong monitoring for carcinoma, cautions of compromised fertility, and the unknowns of a drug previously untested.
I learned to find light in the shadows - to focus only on the healing power of the love found in kissing soft peach-firm cheeks while sitting in a research phlebotomy station with heat packs warming the small arms of the sweet child sitting on my lap. With singular focus I imagined with each exhalation the transmission of the surety of my hope winging it way to the core of her soul and DNA to heal her forever. With each inhalation I drew illness from her.
Magic; an unmeasurable metric of a mother's hope.
So when you have a kid, or kids, you try to avoid those dark places where fear resides - and instead focus on snow cones, beaches, and sunny days. At least I did and for the most part I do. And then the shadows caught up with us in the form of errant biology and our path changed to include journeys into places unknown and unwanted. But, today I got fantastic news -- Sarah's treatment is working. Thank you all for the prayers, texts/calls/IMs/cards/calls/etc, meals, babysitting, support, and love - it has made this moment possible... This has been such a journey and this news makes the next nine weeks of treatment such a privilege. #hopewins
There is so much to write and say about being in this clinical trial and having access to a drug that suddenly pushes the horizon line of my child's endpoint to an appropriately and fantastically distant future.
I find comfort in data. The illusion of its logic offers solace.
Putting your nine year old daughter into a clinical trial for a drug that has never been tested on kids before requires comfort. And solace. And the illusion that *it* will all work out fine. Especially, when the condition that drug treats is life-threatening.
Two-hundred kids worldwide will be testing this drug over the next year or so; twenty here on the West Coast of the United States.
90% of the adults who took the drug in early clinical trials were cured. Cured of the fatigue and pain that my child experiences- and the other symptoms that await her. No one knows what the long term outcomes of this treatment are. But it clear what happens if the illness is not treated.
Five-hundred thousand people a year, globally, more than half the entire population of Delaware - die from this illness each year.
It is a condition that requires treatment.
Yet, there are no treatments approved and effective for the strain of the illness my daughter has.
Right now in the USA there are at the very least there are 23,000 children ages 0-18 years who have some version of this illness - that is basically the equivalent of one of every five people in Berkeley, California - suffering from a virus that can cause cancer and lead to liver failure. Most researchers believe the number to be closer to 50,000 children who suffer from this illness. Globally, the number of children who have this illness is in the hundreds of thousands.
Doctors have reassured me that liver transplant is a viable option, if, liver failure occurs before cancer.
Today, I signed on the dotted line to try a drug that has never been used on children and only tested on just over 1,000 adults.
Two-hundred kids on the planet will take part in a clinical trial to test a drug that is saving the lives of adults who have the same illness.
I am incredibly lucky. Like any parent I would do anything for my children. Like other parents I have prayed for a cure.
Up to forty-five percent of kids with this illness- clear it spontaneously. That did not happen for my daughter. Up to 85% of those people who don't clear the illness develop a chronic form of the illness, of these 30% will suffer from severe liver deterioration. My daughter's lab results indicate she is in that 30%.
Or as WHO describes it -
"A significant number of those who are chronically infected will develop liver cirrhosis or liver cancer."
Her strain of the illness does not respond to known treatments, but shows promise in the new drugs. Drugs available to 200 children across the globe.
Two hundred children. Two hundred of the the tens of thousands of infected children, each with loving parents who kiss rosy cheeks and stroke little brows daily, will leave the known world of medicine to explore the frontiers of hope.
The drug cost USA$1000USA per pill. So even if it were possible to find a way to get a prescription - its prohibitively expensive and hard to find.
It is predicted, that globally, 90% of all infected people could be cured with these new drugs - if they could afford them.
"Antiviral medicines can cure approximately 90% of persons, thereby reducing the risk of death from liver cancer and cirrhosis, but access to diagnosis and treatment is low."
It is estimated the 150 million people have this illness. That is just under one out of every two people in the United States.
A few months ago the World Health Organization (WHO) declared this drug an 'essential medicine" - those drugs that satisfy the health care needs of the majority of the population; they should therefore be available at all times in adequate amounts and in appropriate dosage forms, at a price the community can afford."
The median wage in 2015 in the USA for an individual was just over USA$26,000 - the GDP was roughly USA$50,000. To be cured of this illness - patients need to take pills for a minimum of 12 weeks- that is USA$84,000 worth of medication. Or... almost double the GDP in the USA. In India the same drug costs USA$990 for 12 weeks of treatment; there the GPD is USA$1500.
The drug is not approved for use in children. Insurance does not cover the drug. There are no patient assistance programs. There is hope and luck. There is being in the right place at the right time. There is winning the clinical trial lottery.
And there are moments like today - when you sign on the dotted line - when you weigh the odds and gamble.
When you turn to data to find warmth in the spaces between numerators and denominators.
I always wondered when we would "come out" with Sarah's illness. Unlike her sister's condition - Sarah's is hidden from sight. Unlike Lala's, Sarah's illness does not present with any florid or dramatic symptoms when you stare at anything other than her lab or ultra-sound results.
Unless you are "in-the-know" there would be no way of telling that she harbors an incurable virus of a particularly nasty genome type. A virus that could lead to liver failure and/or cancer - but before that occurs - can and does cause fatigue and pain and the other symptoms associated with chronic and progressive inflammation of her liver.
I keep thinking its "not really bad enough" to rally the troops, to make a big "to-do", to voluntarily assume the identity of a 'parent with sick kids'. Or to ask for even more help from family and friends - as I fear compassion fatigue.
I have done enough hours of therapy, meditation, yoga, and wooded trail runs to recognize denial when I see it; even when its my own.
Despite a life filled with hospital visits, specialty care consults, and more days of work and school missed to illness than I care to count, sleepless nights pouring over medical literature from the EU, I have not become "that mother" - the mom whose kids are "really sick".
Even though technically, I am.
I have steered our course through a combination of denial and becoming the woman who turned our home into the Mermaid Manor. The mermaid mama who wakes the kids daily with dance parties, who dons a tiara and glues glitter onto mermaid tails, who researches the science of "gratituding" and the immunological impacts of hope, and who has a steady stream of kids, dogs, friends, and community gathering around the dining room table for cobbled together meals and perpetual art projects.
There is glitter and paint on the table and some form of cardboard box Atlantis perpetually being built in the living room. As a former art therapist serving people with AIDS and cancer -health psychology has long been my schtick - I have seen firsthand the healing power of art and music.
Art and music - transform patients into people who surf on the waves of bliss and wellness found in creativity. I believe in the alchemy of art and music as much as I do in the anti-retrovirals drugs that will hopefully preserve my daughter's future.
I believe there is magic in choosing love and hope - and that it trumps illness and fear. I believe healing happens through art and music. I dose my loved ones regularly.
I am not someone who joins clubs or groups- and yet, I belong to two - two separate organizations for parents of children with rare and awful illnesses - one for each of my daughters. We swap clinical trial tales, arcane medical research findings, and form our tribes with rituals and norms defined by the rhythms of the rareness and cadence of out children's ailments. These rare and awful illnesses will not become or consume our family's, nor my daughters', identities, but they are an indisputable part of who we are and the paths we navigate.
We "came out" as family to embrace the healing power of music. Every morning- we have danced and sung our way through darkness to welcome the beauty of each new day. Sarah finds light in the music of Michael Franti. Last night, through the Do It For the Love Foundation, we entered the portals of "wishdom" and Sarah's wish to see Michael Franti perform live was granted- she met him backstage and danced on stage while he performed. She danced not as a patient, but as a kid who loves music and dreams of playing the saxophone in Paris.
Its this simple - music and art heal.
That is why we "came out" with Sarah' illness less than a week before the screening for a clinical trial that has canceled our holiday travel plans. We came out so that the Sarah could experience the magic of seeing a beloved beacon of light perform the songs she plays daily to counter the fatigue and pain she feels. As I watched her dancing- I saw a foreshadowing of the decades she will have, if this clinical trial works, dancing at the edges of stages experiencing the bliss of live music. She found magic in those bright-eyed moments of joy in sharing the healing power of music.
I was able, at long last, to assume the grace needed to ask for help and to don the identity of my reality- a mermaid mama with two sick kids. I don't know if this clinical trial will work- no one does. These drugs have never been used in kids before. I do know that we will find joy in the music and art that lifts our spirits no matter what.
And now is the time to let the beautiful community that surrounds us hold us in the light and love so freely and often offered.
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.