“You know it’s part of her ‘syndrome.’”
There are many characteristics associated with Down syndrome, but that doesn’t mean every individual with Down syndrome has every characteristic. So when you try to tell me my child will be “stubborn” or contract a life-threatening illnesses because “it’s part of her syndrome,” understand that I will internalize a massive face-palm before turning and walking away.
“You know she’ll never get married!”
Is that really what you think? And if so, you really shouldn’t have verbalized it. Eden may get married, she may not and it would be the same if she didn’t have Down syndrome.
Eden will live a full life. She will go to school, gain employment and, much to her father’s horror, she will have boyfriends. Who knows what will happen after that? What I do know is that society is changing and there are wonderful people all over the world with different abilities getting married. At the end of the day, it’s her choice, not yours.
“What’s wrong with her?”
Sometimes you just have to laugh, and that’s exactly what I did after hearing this statement. This was yelled at me by the shop assistant from across the store, a good 10 meters away so everyone in the store would turn and stare.
It was while Eden still had a nasal gastric tube, and while I believe this comment was aimed at the tube and not at her diagnosis, it wasn’t the politest way to ask. I explained the tube this time and then every time we visited the store for the next 10 months.
“She couldn’t ask for a better family!”
Darn tootin’, its true, Col and I are all kinds of amazing super parents. But while in context this is meant as a compliment, it also comes in other forms of statements, and the most common is, “God only picks special people to parent special children.” The choice is really ours.
“Oh, that’s a shame!” (This also comes out as “I’m sorry…”)
What ever happened to the good old-fashioned celebratory greeting at the birth of a child: “Congratulations!”? So simple, yet eloquent, goes well with pink or blue and trust me when I say after the whole birthing process, it’s all any parent wants to hear (diagnosis or not)!
“How long will she live for?”
My response to this is always, “I don’t know, how long will you live for?” They stare at me blankly, and there’s an awkward silence while I internalize yet another face-palm.