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.
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 has virus that is attacking and destroying her liver. Clinical research shows promise in emerging treatments for adults, but there is currently nothing available and tested for children. As with her sister's condition, there are no cures available... at this time. We spend more time than I care to think about in clinic and hospital waiting rooms and I pouring over medical research and calling different doctors.
There may not be a cure right now - but we are finding healing and wellness in the magic of art, music, and the love of our tribe- the friends, family, and community who are fellow mermaids. 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.