Its TRUTH-TIME. I will share 10 ways I have blown it as a PWS mom. (I blow it as a “regular mom” all the time, too, by the way.) We, as parents and caregivers of a child or adult child with Prader-Willi syndrome, are all trying our best to provide what our special peeps need. We read, we research, we go to endless appointments, we read newsletters like this, we attend behavior training Continue Reading
Divine Appointments & Chili
Today’s post may not be full of a thousand words. But its packed chock full. Of heart. Of soul. Of spirit. Of joy. Of awe. Of humble appreciation. Of gratitude. Of humanity. What comes out of a simple invitation for hot chili on a cold winter day astounds me. A new family, new to us, and us, new to them, came over for lunch. The house was picked up. Bathroom cleaned. Table set. Flowers Continue Reading
Still No Tears Over Sandyhook
I am surprised at my reaction to the Sandyhook tragedy. Or my lack of reaction, in terms of tears and sadness and heaviness. For anyone who knows me, I am a touchy-feely girl who cries at sappy commercials and gets choked up EASILY at others’ joys or woes. I FEEL. I LIKE TO FEEL. I go to movies that are contrived and emotional because I like to FEEL things. Last Friday I was in a meeting Continue Reading
Just Unwrap
A dear friend of mine says to her “special” daughter every morning as she looks into her chocolate eyes, “You are a gift.” It’s her daily mantra. Before the cares of the world set in, before the grind begins, before any reminders of the challenging journey she is on, before. She has chosen to remind herself, despite the hardships of having a disabled child, that her daughter is a gift. Continue Reading
What’s In Your Hula Hoop?
This has been reposted from another place I write. Worth re-posting. Whenever Ryan has a horrific tantrum, especially in public, I feel a sick wave inside. Internally and immediately, I ask myself, “What will this look like when he’s 13? 18? 28?” I feel panic and fear. All the while, I’m utilizing my tantrum-reaction strategies and trying to appear calm and cool. When the tantrum is over, Continue Reading
Girls. Girls. Girls.
I found myself saying to Kate (age 7, and a slice of Heaven) this morning, “Oh, honey, you wore that outfit yesterday. Why don’t you pick out something different for today? We don’t wear the same outfit two days in a row.” Did I really just say that? Does it really matter? She got dressed by herself, brushed her hair nicely, and all without me asking or urging her to do ANYTHING. Well done, my Continue Reading
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