I received a call from an unknown number. It was a young gal at Peninsula High calling around 8pm. She said, “Hi, This is Aidynn Oschman, and I am Ryan’s buddy for the Freshmen Link Crew. Freshmen Orientation is Wednesday from 9-12 and Ryan will be in my small group.” My son, Luke, and Aidynn were friends in middle school and I thought may still be friends. I knew she was probably familiar Continue Reading
I Give, You Give
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
A Mother’s Front Porch Prayer
THEY SAY IN THEY MAGAZINE THAT "RE-ENTRY IS A WITCH." (or other choice words) Re-entering family life and the reality of the day to day grind after time off or vacation can be difficult. For me, even after a night off with girlfriends, or a full day off from mothering, I can have re-entry issues. Because... I NEVER KNOW when I walk through the door what awaits me. This weekend Chris 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
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