Thursday, December 11, 2014

Welcome to the Club!!

Right about now you may wonder, "What club? Have I been internetting in my sleep again?" Surely you did not sign up for this club, or maybe you did, but didn't realize at the time that you were signing up. You are probably wondering, what's the fee? Nothing but some love, patience, and support. You may also wonder, how long is my membership good for? A LIFETIME!

Whoa! A free club, with a lifetime membership!? It sounds almost too good to be true! It is!! And YOU are so lucky, because not everyone gets to be a member of this club. There is only one real requirement - either have or love someone with a triplicated copy of the 21st chromosome!

I joined in 2013. By pure virtue of giving birth to a son with Down syndrome. Some of may have joined by virtue of adoption (and to you... to you I give a round of applause!!). I didn't know I would be in this club on May 1, 2013... actually I didn't know for sure (by actual genetic testing) until May 10, 2013, but there were enough signs that I was pretty sure all I was waiting on was my membership card!

If you're new to our super-secret-special-club then I want to welcome you, you are in for one amazing ride. If you're not new, then I want to say that I am glad you have stayed around, and thank you for paving the way... how has your ride been?

Pre- and post-natal diagnosis of Down syndrome is one hot topic I tell ya! Our family did not have a prenatal diagnosis - only a suspicion of what was a possibility based on other soft markers. But we did and do have lots of love no matter what for our children... and we knew that Jeremy would be someone special. I've read so many articles and have seen so many statistics that give really high numbers (which I will not quote because I do not know the accuracy of these reports) for the rate of babies with DS or suspected DS being aborted, right now you may be reading this and this may be a decision you are contemplating. WAIT DON'T GO! I want to tell you, that even though it may seem like it will be hard, and it will be different... it most definitely will, you are right. It will be so much more than simply being the parent of a child with DS. It will be about cheering your son or daughter on as they reach milestones that are difficult and the result of countless hours of therapy, it will be about rejoicing when medical tests come back the way you want, it will be about laughing as others wonder how you do it, it will be humbling, and it will try your every nerve, in every fiber of your being. But it will all be worth it! You know why? Because you'll get to see smiles like this:
Did you receive a post-natal diagnosis? Right now you may be stumbling blindly through those first few days as you try to sort out your feelings. "Holy crap!" You may think, "I just had a baby," and then, "He (or she) probably has Down syndrome, what is that? How do I do this?" and then you may be sad, "Where's the baby I did sign on for? The one with three creases in her hand, the one with regular not-almond-shaped eyes?" It's okay to feel this way! It's totally normal, I think we all do it, even those who have a prenatal diagnosis and have had time to prepare. After you stumble out of the fog and receive confirmation of a diagnosis of DS, remember there is a whole community of people - many of us run FB pages, blogs etc. just to provide updates, information, and a whole lot of DS-fun.

Welcome to the Club!!

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