I’m determined to test negative today for COVID so I can go out grocery shopping and get stuff together for Passover. Which really disgusts me because I actually can’t stand those “mind over matter” memes and tropes about illness and disability. For example, there has been a lot of garbage lately about Jeremy Renner’s snowplow accident and how he “chose to survive,” which really is piffle. Do the people who don’t survive somehow not make the right choices and that’s why they end up dead? Did Christopher Reeve somehow not have as much will power and gritty determination and shiny white teeth as Jeremy? Of course not. Illness and disability are not choices.
All of this falls into the category of “inspiration porn,” which has always gotten under my skin. The idea that there was something inherently touching or inspiring about Sarah or other disabled kids and their families simply going about our daily lives was annoying and baffling. The maddening “Welcome to Holland” prose poem that is often posted in environments for special needs children, about how life with a disabled child is just like your plane landing in the Netherlands rather than Italy, and once you adjust to the re-routing everything is wonderful. More like Welcome to Bratislava. Well, all of this sounds very sour, and our life with Sarah was anything but.
I’ve been thinking a lot in the last few days of an update from a website/YouTube channel, We Speak PODD, that I followed very closely when Sarah was really in the thick of the Augmentative and Alternative Communication push. The family from WSP were such role models. Four disabled children used AAC devices (“talkers”) and their channel demonstrated constant modeling by the parents and incorporation of their talkers (or boards) into multiple environments. They were just so brilliant and diligent about AAC.
The other day, the WSP mom posted that one of the girls, Angela, who I think was around Sarah’s age, was in hospice care at home. She also revealed that she (the mom) had had a stroke. I believe that three of the children who were communicating when I watched the videos have now died along with the mom’s birth son, who died of a mitochondrial disorder in 2009. I’m not positive about that statistic.
I would like to be able to say that I am able (that we are able) to love again, to have more special needs children in our hearts and in our home, to possibly adopt or foster another child with severe special needs but I just don’t know. To go through this kind of loss again would be torture. And yet a part of me longs to to love again with that intensity.
The First Year Without Sarah 