There is so much to write and say about being in this clinical trial and having access to a drug that suddenly pushes the horizon line of my child's endpoint to an appropriately and fantastically distant future.
This reprieve; a gift of a real cure, comes after years of living with the knowledge that her illness, unless treated with drugs that did not yet exist, would in all likelihood shorten her time on the planet. And with more certainty cause her pain and profound discomfort; ranging from the fatigue she already experiences to the failure and eventual loss of her liver.
It has been an extraordinary experience as a mama - and an opportunity to practice staying firmly in the present, while advocating, and preparing, for the future that arrived last Thursday night. The launch of a lifesaving clinical trial - the lottery of life. And though there is much to say, and I sit in this moment with many emotions, I mainly feel an incredible sense of wonder.
I also find amusement in the odd juxtapositions of kismet - the cosmic mixologist who puts cupcakes and clinical trials into the same day. Celebrating the birth of one of my children and new hope for the future of the other.