For my third edition of Friday's Fencepost, I have decided to share a portion of a paper written by Ashley, one of Joey's biggest fans. She accompanied us on our journey to Chicago this summer to attend the CdLS Conference. She does a lot for Joey and helps us raise awareness about this syndrome.
Settling into my seat across the aisle from Joey and Rachelle, I am slowly beginning to feel relief. I had been so nervous about flying with a four year old and a woman who had never flown before, but we made it through one flight and only had about an hour left in the air. Joey was his happy-go-lucky self and Rachelle seemed to be finally relaxing and enjoying the flight. As I began flipping through the most recent addition of Sky Mall magazine the woman seated next to me leans over and peers across the aisle to Joey, who is playing with his favorite musical toy. Lowering her voice, she asks me, "What happened to him? What's wrong with him? Is it Downs?" I somehow control the urge to smack her for her blissful ignorance and calmly state that Joey is a happy four year old boy and, no, he does not have Downs.
This is not the first time I have had to explain Joey's condition and normally I am grateful to spread the word. However, with the tone this woman has taken I feel it even more necessary to educate her in hopes that she can, in the future, approach a similiar situation with a different attitude. So I go into what has become my rehearsed speech about "What happened to Joey."
While the woman next to me smiles politely through my entire spiel, she has the look I have seen so many times and have even worn on my own face. She is wishing she had kept her mouth closed and then she would not have been so overwhelmed with all this information about a completely random stranger. This is what most people choose to do when they meet Joey because they are simply unaware and would much rather continue through life in their own blissful ignorance. I will be the first to admit that, until Joey came into my world, I had the same attitude. So, as I wrap up Joey's story in a nutshell, I return her polite smile and we continue through our flight in silence. As we exit the plane and this woman sees me struggling to put Joey in his wheelchair she smiles again and says "Enjoy your time in Chicago." I look at Joey's smiling face and respond "We will and thank you for learning about Cornelia de Lange Syndrome with us."
There is more to this beautifully written story. It goes on to tell about our fears and apprehensions about being first time conference attendees, our incredible journey, and how it was truly a life changing event. I was unaware of Ashley's encounter with this woman until I read her paper. Thank you for your words Ashley, and for loving Joey.