There is an essay, well-known to parents of special-needs kids, which suggests having a disabled child is sort of like planning a vacation to Italy, only your plane lands in Holland instead. We are told that while Italy would have been very nice, if we spend our lives mourning the fact we never got to Italy, we will never appreciate everything Holland has to offer.
When my partner and I realized one of our newborn twins would be permanently physically and mentally disabled, it felt more like our plane to Italy had crashed.
We have cried a lot since Betta and her twin brother, Jerzy, were born. We thought once we got the all-clear on the amniocentesis tests, we were assured of healthy babies. Nope. Amnios only test for the most common genetic abnormalities. While Betta does not have a formal diagnosis, we know whatever she has is extremely rare.
Blaming someone for what went "wrong" feels like a disservice to our daughter. Did I tell you she laughs sometimes? Every once in awhile, Betta will coo and smile and giggle. We've long hoped for some sign from Betta that she knows she's not alone, that she knows we are here. Her smile is her gift to us.
I remember getting on a bus with Betta for the first time and asking the driver to lower the handicapped ramp so we could board. I told him, "My daughter is disabled." It might have been the first time I had said it to a stranger, and I'm sure my eyes welled up behind my sunglasses. We got on, and I knew the other riders had heard me and were now looking as the driver lifted us up and strapped Betta in. It was a little like coming out. I was not for a second ashamed, but did it always have to be such a production? It gets better, though, right?
I was pulling Betta down a slide the other day at the playground, on a blanket since she couldn't do it otherwise, when another mom asked me if Betta was asleep. I shook my head no and replied, "She's disabled."
And then I pulled her back up to start again.
With a Perspective, I'm Helen Smolinski.