I'm noticing a pattern; read through the pamphlet, medical alert brochure or the posts from other parents in the online support group, feel the heaviness of grief descend, shed a few tears, try to push past it and resolve to not read or research for a bit. Perhaps this could be considered a form of denial. I like to think of it as self-regulating. I can only handle so much information at once. I can only learn about one or two potential symptoms at a time or read that in families with a PW kid the rates of divorces and siblings with emotional issues are high before I want to throw out all of the information. Throw it all out so we can return to living in our world where, with all of our love, some special attention to certain things, and our great support network, we can all live a fairly normal life.
Have I told you Freya is going to be the poster child for PWS? She's going to be the newest success story of the syndrome, you'll hardly know she has it. She may even be the first PW person to circumnavigate the globe on a sail boat. This is what we are telling ourselves. It feels good and healthy to be positive about her future. But every time I read more into the disorder, the probable reality becomes clearer, and scarier. At times like this I remind myself of what one of our local doctors so easily handed to us when we asked if he could predict her future cognition. "Cognition isn't everything. There are people with 130 IQ living under bridges. What's more important is that she's happy." And for now, she is a happy baby. Baby steps.