Look At Me

I want people to look at Ruby. I want them to see her so much that they don't bat an eye when they see someone else who looks like her. Just like when you first painted your living room a new color: the sight of so much new shocked you to the point of doing a double take the next morning, but after a few days, it became part of the landscape because you were used to it. I take her every where I go, and people notice. I hope they notice promise and ability rather than despair or disability.

There was a big story in the news, or at least the special needs community news, last week about Shawn Johnson and her husband and their journey towards a possible Down syndrome diagnosis for their baby. This story has come under much fire in our community, mostly because many families feel that the Today show missed an opportunity because the tone of the story felt fear-based...like a bullet was dodged.

*Let me be clear in my take on the way it was reported: I feel like I've been very transparent in my own very fearful and sad reaction when we first got Ruby's diagnosis, and in several times since then. I don't fault this couple for being scared or even relieved when their tests came back without a T21 diagnosis because most people, including me, would likely have those reactions. Those feelings are very very very real, and reporting them is definitely important and relatable. 

In regards to 'our' issue with the story, I think most of 'us' feel it would have been great for the Today Show to end the segment with a look at some families living with Down syndrome (to see the positive impact the diagnosis has), and to also provide some resources for those receiving the diagnosis in utero. I think everyone can relate to the fear surrounding a diagnosis (as the story reported on), but not everyone knows or sees the other side of it. So many people are only exposed to Down syndrome (or other diagnoses) through media, so I realize that this puts a lot of responsibility on the entirety of reporting on stories surrounding them. But I think we have to provide the whole story. I can only imagine how hard it must have been for an expecting mom or dad, still reeling from a T21 diagnosis, to see this segment, ending with the summary that "whew....not us". It had to feel like a low blow.

So when you see Ruby or others out there, in the sea of 'normal' people, I hope you see ability and I hope you see value. Many times it would be much easier to stay at Gigi's or the pull out class at school, or even just our home bubble, but that would be depriving everyone who is not privy to this world.