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.