Recently, my caseworker asked me to make a list of all the things I do for Ryan. Daily, weekly, appointments, driving, etc. ALL. OF. IT. And the list is long. And he is 14 years old. Today!! As I wrote and reviewed the list, asked hubby and our beloved behaviorist/sitter to give input, well, it made me kind of sad. Sad to see it all there in black and white. His incredible DEPENDENCE, and Continue Reading
To Share or Not to Share?
Privacy and self-protection lead to isolation. Transparency and honesty lead to connection, community, and love. Yet, it is not so black and white when you find out your child is different, or disabled, or diagnosed with SOMETHING. Do you tell others or do you not? When Ryan was first diagnosed with PWS at 5 weeks old, our knee-jerk reaction was to keep it to ourselves. Maybe tell Continue Reading
The Night We Told Ryan He Has Prader-Willi Syndrome
When is it the right time? At what age? At what cognitive level? Will he even understand? Will it make him more anxious? (Because EVERYTHING does.) Will he just perseverate on it and talk about it over and over and over? Or will it bring relief—as in “oh, now I understand why I talk about food all the time…” It was a Friday night in November. Luke, our oldest, was celebrating Continue Reading
Dear Whomever Marries Luke and Kate
Dear Whomever Marries Luke and Kate, You have been given a sacred and very prepared spouse. Each of them is overqualified and overjoyed to share life’s adventures with you. Any adventures. They can roll with what life hands you along the way. You see, for decades, they have loved and lived with their disabled brother. They have been Ryan’s cheerleaders and champions. His Continue Reading
Expressing Motherhood Piece
This past weekend I had the privilege to be a part of the Expressing Motherhood--South Bay Showcase. Created by Lindsay Kavet and Jessica Cribbs in 2008, it's a stage show of writers, sharing or performing their pieces on motherhood. Any take is welcome. You will laugh, cry, be inspired, and be validated or encouraged as you listen to diverse stories that resonate somewhere within us all. I Continue Reading
When I Look At Him
Long, skinny limbs outstretched, mouth open, breathing loud. Not quite a snore. His own sounds. It was family movie night and of course, Ryan lasted half an hour before he was asleep. I just stop and stare sometimes. I drink in his innocence, his sweetness, my boy who’s both so polite and a pain in my heart. I think about his brain, all wired wrongly thanks to missing parts of Continue Reading