So the reality of today's medical center visit was not so terrible - its just six hours... I think its the relentlessness of the illness- it's constant demands for attention that wear... bc we had been sick (and by we- I mean all three of us) we were placed in infection control (so many glamorous masks/gowns/booties/caps/gloves) --
I packed sushi, a birthday cake, the worst popcorn in the world, games, and - of course- knitting. I let the kids have unlimited screen time, we sang Stevie Wonder songs, I billed client time, Lala created a unicorn rebel avatar, I didn't cry when Lala did bc of the needles, Sarah pondered (she is such a bad ass) on the whole focus on unicorns being white not black, and drop by infusion drop we passed the hours ... until it was time to uber home.
Everyone was wonderful - the pediatric infusion center is the best of the best - and I feel so grateful for their care for Lala that I could weep. They are so patient centered. They honor Lala as the individual she is and they believe in choice and kids being in charge of their own bodies. It makes me weepy bc its so uncommon in this system of medical care.
The body is not an apology - and there is so much work to be done if you happen to be a female, child, person-of-color, who is not able bodied. At the end of the infusion- we all sat on the bed with the best-nurse-ever (Stella) - and shared pictures and stories about our silly little dogs -- #winning - Lala was not psychotic from the medication this time so the uber home was uneventful.
There is a gender divide in medicine when it comes to how pain is seen, treated, and perceived in women patients. I am familiar with and write about racial bias in pain management - I was not prepared for the presentation of the intersectionality of medical racism, and the sexism, in the form of under-diagnosing and under-treating my 10 year old bi-racial daughter's pain. Nor was I prepared for or willing to accept that anxiety, hers or mine, was the cause for her pain when she has a diagnose for IBD, Chron's Disease, and an undifferentiated Systemic Autoinflammatory Disease that causes objectives measures of pain (lesions, elevated SED/CRP levels, visible inflammation, etc.) that measure 10/10 or the crying face on the pediatric pain scale.
Being female, being bi-racial, being a child, and having a rare disease is a recipe for under-management of pain and doubting of symptoms. And with that under-management of chronic pediatric pain, is a host of problems ranging from difficulty in learning to increased risk of chronic illness and mental health issues as an adult. In her case, the pain as not been treated as part of her underlying illness - and dismissed by some of her specialists. And she has become disillusioned and disbelieving that doctors are there to help her.
As a former therapist, I almost found myself hoping that my daughter's pain was actually anxiety (hers or mine) and not the patriarchy... however, after a few years of therapy for each of us, lots of investigation of secondary gain, mind-body medicine courses, meditation, and a lot of yoga - our anxiety levels were and are measurably lower while her pain levels and inflammatory markers are higher.
During those years of surfing siloed care and "doctor doubts" her oral lesions grew deeper and more painful, her CRP/SED rates steadily climbed, and I continued to push forward to find another answer - working against my own fear that I would be seen as a Munchausen's Mommy Dearest. I also felt deeply that her pain could and should be taken seriously - her pain would leave her sobbing and limp with fatigue; missing birthday parties, trips to the pool, and other coveted childhood moments.
It is hard, given the data, for me to believe that this is not tied to the pervasive problem of under-diagnosing and under-treating pain in females and people of color. I would suggest were we turn our attention to research- we would find that female, children of color, are among some of the most under-diagnosed when it comes to pain. That the most vulnerable suffer the most and for the longest.
A few weeks ago we met with the Integrated Pediatric Pain and Palliative Care(IP3) Team - a team that sheds light on these and other dynamics around pain to alleviate the suffering of under-treated pain in children. It is the first time anyone on this healing journey has suggested my daughter probably downplays the extremity of her pain and that she has grown accustomed to suffering. She has grown accustomed to be doubted and disbelieved by those charged with her healing. And it is the first time since she became ill that I felt the absence of the patriarchy and racial bias in how her pain was perceived and discussed.
She was heard.
She was seen.
When I imagined being a mom - I imagined picnics on sunny days, glittery tiaras glistening in the light of birthday candles, and sticky hands holding mine while walking to the nearby park. I anticipated patching up skinned knees with colorful bandaids, kissing boo-boo's, and running a cool hand across an occasionally fevered brow. There was no way I could have imagined that one day I would walk into a medical center to sign my 9-year old daughter into a clinical dosing trial for a drug never before used on children. And that I would feel more gratitude and relief than fear and trepidation.
This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials. I am passionate about this cause and hope it will help raise much needed awareness about the power of breakthrough research.
That scenario was especially unlikely given my own history as a DES Daughter - a history that includes a drug given to pregnant women that caused catastrophic health problems in the fetuses exposed in utero. As one of those babies born to that legacy I have suffered first hand from drugs not properly, fully, and transparently tested. I also now know what it means when patients have power. When clinical trials are patient-centered and the research transparent. And when informed consent is educated consent.
Science has changed since I was born - and I am deeply glad it has. My oldest daughter had a condition that until very recently had no viable cure. As her disease progressed - I found myself having discussions with doctors about teen and young adult years that could include ineffective noxious drugs and organ transplants. I had trepidation about putting my 9-year old in a clinical trial, but total confidence in her research team. Being a clinical dosing trial, she was among the first group of children to ever be researched with this class of drugs.
The first day of my oldest daughter's clinical trial was also my youngest daughter's birthday - friends met us at the hospital to cheer on the swallowing of the first dose of trial meds and then joined us at home later that same day to eat birthday cake. That day - we entered the world of clinical trials, biopsies, and birthday cakes. Participation in the clinical dosing trial has ensured that my daughter will live to see and celebrate many years of birthdays.
And while I will always be mindful about the use of any medications with my children - I have experienced first hand the incredible power and promise of emerging research.
My daughter is cured.
And that is why I am delighted to share our story and to work to support the efforts of www.clarahealth.com to ensure that patients know that they have power. We can and will change the world.
I am feeling incredibly grateful for two weeks with "NO" medical appointments - its amazing to suddenly recover the dozens of hours lost weekly to the work of caregiving a sick child. I immediately dove into the list of dozens of neglected areas of my life - starting with the decluttering of the mermaid manor and the finding and hiring of tutors to help the mermaids make up for lessons lost to illness and medical care.
I am so grateful to have small moments; breakfast croissants too burnt to eat accompanied by stories read out loud, mancala duels held on a stacks of overstuffed pillows on the living room floor, walks on warm summer nights with the little dog in jasmine scented air accompanied by the scraping sounds of neighborhood teens skating, pizza picnics on the floor while watching favorite kid movies past bedtime, gathering friends around a backyard fire pit to share stories and s'mores in the flickering shadows of night,, and so much more,
I suspect this period will be rife and full of the feelings that got stashed away in the 3-4 year sprint of dealing with the disappearance of the girls' dad, my spine injury, the Commander's illness and clinical trial, Lala's illness and health crises, the mermaid pertussis outbreak, and the relentless spin cycle of illness, worry, the draining of financial reserves to pay for the privilege of surviving these stressors, and the all out effort to work enough hours to keep housing, insurance, and moments of childhood magic intact.
I find myself exhausted and grateful.
I am so grateful for these moments of normalcy and do not take them for granted. They are among the small moments I imagined when I dreamt of parenting.
And after long journeys into the shadow world of childhood illness and the abduction of hope - I fully anchored in living the small moments of those dreams.
I am deeply grateful to parent my two girls. Its funny because people always talk about how lucky the girls are that they got me for a mom - but really they should be saying how lucky I am to get to parent my two girls. I am the one who gets the warm hands nestled in mine on crisp walks to school; hugs so hard and sudden I am winded; and lilting voices saying "mama, you got to leave work early".
I am deeply grateful for small moments of grace even when it feels like our life is part of a tire fire raging out of control with the horizons obliterated by dark and toxic swirls of never ending waves of smoke.
Its one of those periods- both girls are having health stuff.... Its hard to know what is easier to deal with the "we are concerned..." phone calls or the "its probably nothing..." when its clear we are about four days out from an in-patient hospital stay. I know the rhythms of my children and their illnesses well and tomorrow promises to be a hard day medically.
I am learning to find grace even in moments when hope is limited. I think, or rather wonder, if this is one of the gifts we parents of sick children are granted- the daily reminders of how lucky we are.
.Yesterday I rode a dharmic boomerang.
I awoke to the news that a beautiful friend had left her body far sooner than any of us imagined; leaving her two young daughters motherless. And by the end of the day; my ten year old daughter had formally said goodbye to the members of the medical research team that had administered life-saving experimental drugs through a clinical dosing trial over the past year. Between those two monumental and life-changing events, I had taken my youngest daughter to urgent care; a visit that resulted in an unexpected and immediate consultation with a pediatric neurologist for the rare and wretched disease that threatens her wellness and tries to steal her health. A disease unrelated to her sister's, evidence that lightening does in fact strike twice, and over and over and over, in the same place.
Life and death -- and all the in between -- in the same twelve hours.
Only a week and one day earlier - I was graced to hold my friend in my arms one last time and to share our final spoken words. I joined her friends and daughters to love her intensely and with complete focus as she prepared to move from where she lay to enter hospice in the house of her childhood. A home with a garden; magic and healing; a garden her mother still tends.
Yesterday, for the first time, I wrapped my arms around my ten year old without the specter of a life-threatening illness shadowing her future. It was a profound moment of catch and release. A moment that is certain to be felt more deeply in the days that follow. As she leaned into the hug and squeezed me tight with arms plump with childhood, I felt graced and overwhelmed with our good fortune.
We are outliers of luck of all kinds enveloped by endings and new beginnings.
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.