"Special Needs Dads"--does anyone even utter that phrase, that title, the recognition of THEIR journey, their ache, their stress, and their infinite love for their special children?? I have gathered for you some advice from seasoned, experienced and grounded fathers, who, if they could sit across the table with you, would share these words: From Joe Platnick, father to son, Stephen, age Continue Reading
When Mom Has a Hangover
Ouch. Oh no. Please don’t make me get up. Wow, why does my head feel like it was hit by a truck and put back together by toddlers with chubby fingers? And just why? Why do I do these things? Whyyyyyyyyyyyy???????? It’s so painful. The PAIN IN MY HEART is the worst. When you know that you have blown it “as a mom” (because you don’t ever blow it in other arenas…), it 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
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