This is a hard week for me because it involves admitting some stuff I am not very proud of.
Coming to terms with disability has been a multi-step process for me and as I write today I am painfully aware that I’m probably not done.
You could say I came “to terms” with Rowenna’s disability pretty quickly. The second the doctor told us he suspected Down syndrome, it was all I could see on her sweet face for a while. I knew Ds was one of those “permanent” things and the fact that my life now involved disability permanently on a day-to-day basis settled into my mind and heart pretty darn quick. I didn’t spend the weeks waiting for her official diagnosis praying the karyotype would come back negative because I already knew she had it. The lab result was just a hoop to jump through.
But that’s such a basic level of acceptance that I can’t personally call it coming to terms (for myself). So I started down the path and went through some stages that didn’t feel right at the time, but for which I couldn’t find a replacement – fierce protectiveness, the “more alike than different” approach, the “my kid’s going to be the Down syndrome superstar” period.
That last one was probably the worst one. To think Ds was only “ok” in our world because Rowenna wasn’t going to be the one with the lowest iq, the lowest muscle tone, the most health issues. To think Ds was only “ok” because she wasn’t going to be “that disabled.” (And yes, I’m cringing as I write this.)
So I had some listening and learning to do at that point, and I am really glad that I listened and learned. I couldn’t really come to terms with disability if I was doing it on the contingency that my kid wasn’t going to be “that disabled.”
I stepped out of Down Syndrome World for a bit and connected with the larger disability community. Meeting other people with disabilities – sharing meals, having drinks, telling jokes, doing advocacy work together – and doing some major soul searching about what all of that meant is when I really got it. It’s when I stopped seeing a future changed by Down syndrome and just started seeing that Rowenna’s future is up to Rowenna. Disability stopped feeling like this abstract concept that happens to other people, and it became what I now know to be true: that disability truly is just another way of being in this world.
Coming to terms with that – that it’s just another way of being – felt like a weight off my shoulders. I stopped feeling like I had to prove the ways Rowenna was more alike than different. I stopped worrying about Rowenna being that poster kid with Ds that we like to share on facebook.
Rowenna is Rowenna. She has always been herself, whole and perfect. Eventually her momma figured that out, too.
Somewhat related to coming to terms with disability, I’d like to pass some information along about a fantastic project. Families are still hearing doom-and-gloom when receiving a Down syndrome diagnosis. I know how isolating that experience can be.
The fabulous people over at Lettercase have launched the Never Alone campaign. They are seeking our diagnosis stories and support as they get peer-reviewed, balanced information into the hands of medical professionals who deliver a Down syndrome diagnosis. Please follow the link here to learn more and add your voice.