So maybe its a little bit like taking coals to Newcastle - but we took poison rings loaded with edible glitter up the infusion center yesterday. Why a poison ring as a talisman for luck during a trip to the modern infusion center? Medicine, magic, and religion all were once intermingled in the ancient psyche - and ritual and magic are important in our family as part of the path we carve to create hope and healing.
Poison rings – alternately referred to as pillbox, compartment, locket or vessel rings – have been used since the 16th Century to carry poison or mementos. During the Middle Ages, they were often used to hide relics of saints, like bits of their hair, bone and teeth, which were thought to protect the wearer from various calamities and maladies.
And, of course, there was cake!!!
Spoiler Alert- I don't do "it" alone.
I have Team Mermaid. A magical community of friends, colleagues, and acquaintances who keep our sparkle alive and well.
As those of you who are tails on the ground and those of you who raise the tide of love through calls/texts/posts know - it takes a village -in our case the village is a watery magical earthbound Atlantis.
Working full-time as the only parent (we lost the girls dad five years ago) of two kids living with, or the impact of, a chronic illness is not something I do alone. Sure there was a time I tried - but if nothing else this journey has taught me we are all beautifully interdependent - and to be intentional and compassionate about those connections is a rich opportunity.
One of the things about having a kid with a chronic illness is making sure that the other sibling(s) don't get overlooked and their successes celebrated, their challenges addressed, and they are still front and center in love and support. And just as importantly, that magic is woven into the mundane and the tedium of childhood; into homework, chores, the kabillion medical appointments, playdates, and the spaces that open up for you as a kid when you are raised by a single mom.
The most humbling parts of this journey has been realizing that there is simply no way I can do "it" alone and that learning to ask for, and receive, help was a skill I sorely lacked. And a skill that I needed to master with grace and intention.
Its the skill I am most proud of developing. I am gifted with an amazing community and I refill my cup to nourish myself and the girls from this deep ocean of generosity and love.
About five months ago I gave myself three beautiful gifts that have required even more support - regular sleep, acupuncture, and a return to my yoga practice.
My yoga practice gives me sessions of peace and gratitude - the time to breath deeply and to create a space for my entire self (mind/body/spirit) to let go of the beautiful and terrible- to be. To sit in the interstices and to take off the many hats I wear- single mom, worker bee, caregiver, volunteer - to just be.
My mind stills from the first Om to the final Namaste and I find solace, healing, and nourishment in the asanas and breath work that deeply challenge my entirety.
In caring for myself, I am able to care for others and receive the love and support offered by the stunning love and generosity of team mermaid - and doing so I am able to sparkle and make sure my mermaid tribe glistens as well
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.