Right after my girl was born and subsequently diagnosed with Down syndrome, just about the only people we could speak to about it were our parents. Because I couldn’t talk about it without completely losing my shiz. My maternal hormones were on parade and the words just couldn’t leave my mouth without the flood gates also breaking open from my eyes.
So I did what I do.
I wrote it down.
I sent an email to about 40 of our closest friends, laying down the facts and a hopeful outlook for our future. I asked that nobody call. I gave permission for them to spread the word as appropriate but asked that whomever they tell respect our privacy, too. The last thing I wanted was for the rest of the world to see the hot mess I had become.
What followed was simply amazing. Encouraging, loving emails poured in for weeks. I saved them all and re-read them many times back in the beginning. It was the best support I could’ve asked for.
I was thankful to whomever discovered the internet for doing so in my lifetime.
* * *
It’s been just over four years now. I can have a normal, factual conversation about Down syndrome. Ask me about the symptoms, her surgeries, her therapies – I’m good. Touch the emotional stuff, though, and I’m still toast. This is one of the reasons I haven’t gone back and read any of those old messages since that first summer. I have yet to find the courage (or the need) to go back and feel those feelings.
So when a teenage employee at a children’s museum came up to us last week while on vacation, the lump in my throat grew quickly.
She mentioned she’d seen us in the dinosaur room. My girl had flittered around the displays, looking for something resembling an animal she could name. (Why there were live turtles in the dinosaur room, I do not know – but I am grateful I was able to verify her accuracy on something.)
She asked if Abby had Down syndrome. She went on to tell us how proud she is of her 9-year old brother who shares the same gift. She gushed over her own gift of getting to be the sibling of a person with a disability.
I glanced at my Jake, tears threatening at the corners of my eyes. (As he threw fake food all over the place. Nice, kid.)
She told us that the doctors had told her mother not to expect much out of him, never to walk or talk.
She paused. “But you know what?”
I smiled, with an eye on my girl, and answered. “He does all of that and more, right?”
She smiled with a great big “YEP” and went on her way.