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.
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.