2 Years and the Race Against Time

Wow, two years of (knowing about) KAND. Colbie is all of a sudden 3 1/2 years old. She isn’t one of the babies of the KIF1A group anymore. New little ones have been diagnosed at an even younger age than she was and older children and adults have received this difficult diagnosis since then too.Continue reading “2 Years and the Race Against Time”

Dear Diagnosis, It’s been a year.

Dear Diagnosis, …it’s been a year. I’d love for this to be a parting letter, but unfortunately we are stuck with you. So, instead I’ll reflect on our year together as much as I can. And I say our, because you have affected all of us in some way. I’ve felt this day approaching forContinue reading “Dear Diagnosis, It’s been a year.”

Blessed, Not Balanced

I am so blessed, but I also I believe it’s okay to say “it’s hard” and still be grateful and acknowledge that.  I’ve learned a lot in less than a year since Colbie’s diagnosis. A lot about genetics, rare diseases, disabilities, therapies, neurology, insurance, etc. More than I ever thought I would need to. Honestly,Continue reading “Blessed, Not Balanced”