There is a question that circulates in my house every so often. It's said by all of us, in many different ways, and every time I cringe.
Sometimes when I explain to Amelia why she needs to eat her ice cream in the garage with Grandpa instead of in the house, she says "It's because of the Prada Willi, right Mama?"
Sometimes when Olivia is climbing my legs while I'm cooking because she's so hungry and no one else is at home to watch her... and Rafe walks in the door and sees her, asking with anguish "Do you think this is the start of it? Is this the Prader Willi kicking in?"
Sometimes when she is squealing at the top of her voice at the table because she wants something more or different to eat than Amelia, she'll ask "Is it the Prada Willi?"
Sometimes when she screams at transitions and I have to explain to others that she needs to be able to say "bye bye" and have time to process; and that yelling and spanking won't help, I say, "It's the Prader-Willi"
And then sometimes, like tonight, I watch her cry piteously and beat her stomach over and over. I ask myself, "Is this Prader-Willi?"
I hate it every time. I hate it most of all for sweet Olivia, who doesn't understand why someone she loves won't feed her.
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3 comments:
Big hugs to all of you. WE walk that walk every day. People try but very few truly understand what it is like.
This is heartbreaking. For everyone involved. Prayers.
Ugghhh. So sorry your struggle with food is a big one. Oh, and the patience required to allow processing time is exhausting! AJ and I definitely need to make the trip to see Olivia and Amelia soon!
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