Four years into being Avery’s mom, and I find myself saying the very same words I did when our doctor first told us that Avery had Down syndrome: But, what does it mean?
I know about trisomies and increased risks of medical complications; I know about early intervention and developmental delays. I know about physcial characteristics and common traits; I know about inclusion and IDEA and my rights as a parent. I know all these things, and yet, I still don’t know what Down syndrome means.
I’ve learned that no two families are alike, and that no two children are alike, either. I’ve learned the diagnosis means different things to different people, and that even within myself, it has had different meanings at different times.
And I’ve learned this: it means whatever you want it to mean. For me, it means Avery, a little person I love very much.
Yes, I feel exactly the same, but you have put it in words so well!
It means other people who don’t know any better, don’t know how to react to difference. Other than that I don’t think it means a great deal. It is only when we come across people or systems that don’t know how to cope that the problems arise. The rest of the time we raise our daughter in the way we raise any of the kids – according to their needs and our principles
I couldn’t agree more. There are so many conflicting emotions, but one constant is always the love. When you focus on that, and you realize that figuring out what Down syndrome means becomes less important.
I feel the same way too!
Jennifer–I love this! I think it’s so important to not let a diagnosis “define” our kids and who they are. As usual your writing put a smile on my face!
Your few, simple words made me cry! Thanks, I needed this today.
Beautiful. For me, DS means opportunities to meet moms like you and my friend, Samtra, and some awesome kids.
Well said!
I guess it’s the same with any other label. CP, autism, Jew, Christian…
I feel the same way…I know the textbook aspects and I know how very much I love Jack. Other than that I am still at a loss.
♥
I think I have asked the same thing ‘what does it mean?’ and like you, realize that it means whatever you want it to mean, and for me the most interesting thing is watching my daughter and her asking the same question.
She notices when someone has T21 and will ask me “Do they have Down syndrome?” as if she is still not a hundred percent sure. She will tell me “I don’t have Down syndrome anymore”……or she will be excited and tell me that she does.
I so enjoy reading your blog Jennifer…..and fell madly in love with the picture of the twins above….how little and so delicate they were.
and look at them now….big, healthy, active BOYS!!!!!!
Peace and love, Tara Marie
Brilliant! It really is so simple. Love.