When we were waiting for the results of TitaniumAmy’s whole exome sequencing, I set my mind on this thought from CS Lewis in the last book of the Chronicles of Narnia series:
“We must go on and take the adventure that comes to us.”
I neither want to borrow trouble nor turn away from a fight. I want to be able to live in the unknown but not be overwhelmed by it.
Never was that idea more at the forefront of my mind than on our recent trip to the Xeroderma Pigmentosum Family Support Group Medical Conference in Nashville. The upshot of all the learning and all the conversations with other families was this…the only way to combat the progression of this disease is through “constant vigilance” (that’s a quote from a medical expert). And, at the same time, there really isn’t any way to stop the progression of this disease, so live each day to the fullest, taking nothing for granted (that’s a synopsis of several conversations with a dear family of a child who is declining).
I realized that one gift TitaniumAmy’s diagnosis has given me is an ability to live fully in moments I may have otherwise rushed through. To savor both the journey and the experience. Like seeking out a kitschy cafe at the far end of Nashville, and driving all the way there just to taste their biscuits (they were quite good, btw). As little sister Flawlyssa used to say, “It’s all part of the experience.”
I don’t know where this XP/TTD adventure will take us. But on this day the adventure was sweet, and that’s enough for me.