You’ll be hearing about my family here, as finding answers for them is what is driving me to put up with the sometimes demoralizing, sometimes enlightening circus of a diagnostic process, but if you want the in a nutshell version, I met my husband in 1992 while we were university students in Idaho. He likes to joke that I took one look and couldn’t help but swoon over his international charm. The reality I remember is a bit different–that he fell for me when I was one of the only girls in that small town that didn’t fawn over him adoringly solely for his British accent. Fawning and swooning aside, we fell for each other but broke up the next year. However, 14 years later we managed to reconnect in a story that either sounds like something out of Jane Austen, or out of a hokey, B-grade, made for TV movie, and I emigrated to the UK after our marriage. Nearly 10 years and 3 beautiful, rambunctious daughters later, here I am, and now this is home.
I am a qualified social worker and psychotherapist for over 15 years, accustomed to the “treatment provider” seat, but this year I’ve been on a journey to clarify chronic medical problems I’ve had for years and I believe my children have as well. I’m “switching seats” to become the patient and coping with the ups and downs of the diagnostic process and getting help for my little ones with what is considered a rare genetic disorder by some. Come take the journey with me and my children! It’s a whole new adventure, and this time I’m the patient with much more to learn.