I am a mermaid, a rebel, and 'mama' to two amazing and beautiful children; each facing illnesses that are incurable, chronic, and potentially catastrophic. I am also an optimist - I believe that love will win and that art & music heal.
I believe in the science behind "gratituding" and choosing hope.
I write to support my gratituding habit.
We owned our mermaid'ness about five years ago when the girls' dad got very very ill- and we needed some serious magic in our lives. It was a good call to embrace our mythic and magical potential, to develop our silver lining super powers, and to otherwise leave a glistening glitter trail leading us back to moments of 'normal'
One of my daughters has an extremely rare autoinflammatory illness that is devastating in the its relentless progression and the daily pain it causes her. There are no cures and few effective treatments for her condition. My other daughter had a virus that was attacking and destroying her liver. She completed a clinical trial last year and is CURED!!!! The odds were not in our favor.
I plan on finding some form of elixir for her sister too. We spend more time than I care to think about in clinic and hospital waiting rooms and I late evenings pouring over medical research and lunch breaks calling different doctors.
There may not be a cure right now - but we are finding healing and wellness in the magic of art, music, integrative medicine, and the love of our tribe- the friends, family, and community who are fellow mermaids. We are gypsies and nomads who love nothing more than a road trip, a bonfire, and the sand between our toes. We don't just believe in our dreams- we pursue them with vigor and whimsy.
In between discussions about viral loads and inflammatory markers, you will find us gluing rhinestones onto mermaid tails, doing yoga, or taking a dance break while singing at the top of our lungs.
On the upside, I work in healthcare so all of this is a bit less daunting than it might otherwise be. On the downside, we lost the girls' dad to a long illness just over two years ago so I work more than any of us might like.
Suffice is to say, we face a few more challenges that most families. But each night that I get up to fetch medicine for one of the girls, to sing a song to sooth the pain that wakens her, use yoga breathing to help recapture sleep, or sip a cool glass of water while stroking a fevered brow, I reflect on how incredibly lucky I am. I live with access to running water, shelter, electricity, medical care, and love. I have traveled to enough places on this beautiful planet to realize just how lucky I am.