Today's post on
Finnian's Journey talks about her struggle to come to terms with accepting the mental retardation aspect of her son's Down syndrome diagnosis. I submitted the following comment to her blog and thought I'd repeat the story here. I think that so often I think about who reads my blog and it makes me censor myself in some ways so that I do not open up about everything I have experienced or thought about. I'm a thinker. I do a lot of thinking about a lot of things almost non-stop. In fact I remember asking Doug once when we were dating "what are thinking about?" and when he said "nothing" I couldn't believe that he actually meant it. His mom is a thinker too and she has coined a phrase that I adopted and both of our husbands cringe when they hear it: "I've been thinking..." Here's what I was thinking when I read Finnian's Journey today:
It is a tough pill to swallow, at any age it seems. Just yesterday I was filling out a new patient form for Sean's dentist. You know the page with all the "check any of these health issues you have..." Well it had one for "congenital defects" I had to circle cuz there wasn't one that said Ds. Then there was that one staring at me, "mental retardation." Oh how I loathed to circle it! I hesitated and thought, "maybe I will just write Ds on the side and not circle MR since it will be presumed."
I decided to face up and just circle MR. Then I sat there staring at it wanting to erase it....
I wonder if I will ever just accept it as part of him and feel comfortable stating, "This is my son, Sean. He has blond hair, blue eyes, Down syndrome, a heart defect and he is mentally retarded."
Yeah. I think too much too. Your question took me back. I had to think about it. Do I fully accept Austin? Yes. I don't like the MR part... I even resent thinking it could be true. But I know I LOVE him. And he is who he is... extra chromosome.. cognitive and developmental delays, red hair, brown eyes and even his slightly spoiled attitude. {{{HUGS}}}
ReplyDeleteJust had to leave a comment today: you made me cry. There is so much stigma to MR and of course you love and accept your Seanie, but there is still that part that you wish could be better for him. Perhaps it is that you don't really think of him in that way and so it takes a moment to think it through and say yes, he is Sean, with blonde hair and MR.
ReplyDeletecarjac1: Carey
Amy & Carey, thanks for commenting. Yes, I do love Sean so much, I really think it's the label that bothers me. I hate the phrase MR because of it's history. I am comfortable saying "cognitively delayed." It would be wonderful for society to elimate the MR term and adapt a new term with a positive attitude.
ReplyDeleteI think the MR term has so much stigma to it that it's a hard pill to swallow. I still don't call Aidan MR. I guess I don't consider him to be, formally, until some IQ test in the future labels him that way. In the meantime, I am well aware that he has many delays, which don't bother me most of the time. It's tough when our kiddos are so young and full of promise. Maybe the labels will mean more to us as they get older. Very though provoking post.
ReplyDeleteGulp.
ReplyDelete