I’m struggling with this in my writing right now – who cares about one family’s navigation of the PWS landscape with everything that’s going on in our country right now. I certainly don’t. Oscar could be having an hour-long meltdown in his bedroom over the loss of screentime for lying. (He says he didn’t. I know he did. Why else would that light be on in the living room, the one I know I turned off on the way to bed, if he wasn’t up checking baseball stats on the computer in the wee hours like he has many times before?) But, really, I don’t care. It’s just another day in the land of PWS. We have our ups (lots of ups, honestly) and some downs but nothing has drastically changed here.
I do care about affordable healthcare and immigration and education and climate change and our democracy and…oh the list goes on. It’s where my brain is. I’m constantly picking up my phone to check the headlines, to see what articles friends are posting, to figure out which politician to call or email next.
One victory though – Oscar pushed through his strong reluctance to attend the Women’s March in Oakland last weekend. It wasn’t that he didn’t support the march – he’s actually quite passionate about the issues – it’s that it was unexpected and messed with his Saturday routine. And routines and are so important to people with PWS.
But we were adamant and he didn’t throw a fit. This is what we call success in a Prader-Willi household. I even got him to wear a pink hat (one of the eight I knit) for the picture we took while waiting for our Lyft to the march site.
Once at the march we were all awed (and more than a bit overwhelmed) by the enormity of the crowds. I’d written my contact information on Ruby’s arm, but Oscar refused and wrote phone numbers on an index card and placed that in his pocket instead. I was so glad – so thick were the masses at the gathering spot that we had to keep hands and eyes on him at all times. I saw him shutting down, I saw him moving slowly, talking less. A dazed look came over his face. But he did it. And as we started moving the crowds thinned slightly and his voice returned and he started pointing out signs that he liked. He marched with us in throngs of people for hours, then packed onto BART, squeezed tightly against Paul’s chest, for the return trip. Hard stuff for a guy like him, but that afternoon I showed him pictures of marches all over the world and told him how proud I was of him for pushing through. He couldn’t believe those pictures either — so many people showed up!
And then a few days later he told his speech therapist this:
The Women’s March — that was cool. I went to the march in Oakland with my family. It was really crowded and loud, but loud in a good way, because we were all protesting about Trump. It was women’s rights as well. There was a lot of excitement and at the same time it was hard to move around because we were clumped in one area. There must have been a 100,000+ people there.
“That was cool” and “loud in a good way”: those are things I really do care about.