I am deeply tired. We have been having a rough time lately. My autoimmune disease has been flared up causing pain, fatigue and general malaise. Kai just underwent his bi-annual appointment at the eye clinic 4 hours from home. It’s hard to endure those long drives, long waits and painful tests when the outcome is only for school documentation — no treatment. Top that off with my oldest son having to learn some hard self-care lessons while away at college and sprinkle it with my dad’s inability to admit to a severe drug and alcohol addiction and I find myself wondering: Am I willing? Continue reading “Willingness is the Key”
Last week was the first week my legally blind son was back in school since the holidays. It was also the week that the action items in our formal mediation agreement were to be implemented by his high school.
The amount of internal stress I felt about his return to school took me by surprise. My fight-or-flight instinct kicked-in keeping my muscles tense, my breathing shallow, my mind jumpy and making sleep elusive. Continue reading “Breathe, Mama Bear, Breathe”
Signs. They are everywhere. Sometimes they alert us to danger, sometimes they send us on a detour. Our sign was created specifically to create a safe space for our blind son to traverse his high school parking lot filled with student drivers.
A couple of weeks ago in a Facebook forum for parents of blind kids, a parent asked how other people handle school drop off/pick up. I read several responses and decided to post a picture of our solution: a sign. Continue reading “Be Aware: Signs Ahead.”
Kai turned 16 in August and can’t drive because he’s legally blind. We wanted to mark the occasion by granting him a new level of independence – an independence he’s worked incredibly hard to earn. So when we read about Erik Weihenmayer’s No Barriers Summit in NYC, we thought it sounded like the ideal place for Kai to stretch his wings. Continue reading “Summit Adventure”
Last week was Kai’s 16th birthday. I remember when we first heard the words “your son is going blind” and the feelings of dread and loss that swept over me when I realized he would not be able to drive. It’s been 6 years since diagnosis, but right now we are feeling the diagnosis and loss acutely — like a fresh wound. Continue reading “Blindness and the Sixteenth Birthday”