Peace

Well, maybe I should say relative calm. We are coming up on 2 years post diagnosis. Year one was a blur of late night research, therapy, worrying, explaining to all those close to us, searching for doctors and answers... basically trying to catch up. It was exhausting!

Year 2 turned to doing. Advocating, going to conferences, participating in studies, fundraising, beginning the uncomfortable switch from asking questions of other parents on this journey to answering some questions. Exhausting, but very hopeful and positive.

Somehow, the sibling study seems to have been a sort of culmination of the PWS time spent. The trip affirmed what we are doing and how Ayden Jane is doing. It has given me confidence that the path I chose in feeding and caring for AJ really is the right path. That probably sounds strange, but I think sometimes I get so caught up in working hard each day that I miss the big picture. I tend to focus so much on what we need to work on that I don't 'see' how great AJ is doing. That pressure of making every moment count, every bite count, every opportunity to work a skill... it gets relentless.

I find myself, FINALLY (and likely just for the moment) relaxing a bit. I don't feel the need to explain the details of PWS, or why my kid eats funny, or why we go to speech or horses or PT. I am happy to discuss it, I just don't feel the need. I actually think of AJ as a 3 year old first, then remember she has PWS. I guess I am not entirely obsessed with all things PWS. FINALLY.