Friday, February 12, 2010

Word Found Its Way Through The Grapevine

Do you know that feeling of excited anticipation for the arrival of your little bundle of joy months, weeks, days before you’re due? Well I didn’t have that. What I felt weeks and days before my delivery date was worry and confusion.

Do you know how when you finally have your baby, you can’t wait to show him/her to the whole world and brag about him/her? Well, I initially didn’t have that either.

I was unsure on who to tell and how to tell people that I was anticipating the arrival of a child with special needs. Weeks after my daughter’s birth I was adamant on telling people that my daughter has a syndrome, a rare genetic syndrome called Wolf Hirschorn Syndrome.

But word found it’s way around and eventually people that I am not even close to were made aware that I gave birth to a “special” child. Did this make me upset? Well, not really. For one it saved me the time to explain, and the effort to let them on in the historical accounts of events.

It saved me from telling and retelling the same story over and over again… it saved me from telling the story from the very beginning and I was saved from remembering the shock of finding out and the talking about the pain of dealing with it.

I am thankful that word found it’s way around because I can start telling my story from “here”. Because to start telling my story from “there”, I might find myself crying again and honestly I am tired of crying. I would see that sympathetic-head-tilted-on-the-side-look and I would feel pity for myself, and frankly I am tired of that too.

So thank you really for those who told and retold and keep retelling on my behalf because that gives me the “here” to start from because being “there” was not really doing me any good.

1 comment:

shashank said...

Here is a link to more information about the genetics of Wolf Hirschorn Syndrome that was prepared by our genetic counselor and which has links to some useful resource for those dealing with this condition: There is also a number listed for anyone who wants to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA