My advice to someone who just got a diagnosis of DS for their child

Through Facebook, I found the blog of a family who just found out, via amniocentesis, that their fourth child has Down syndrome.

Needless to say, their lives have now completely changed, and they are trying to come to grips with it.

I left him (the dad is the one writing) a comment, and after I hit "publish," I decided to post it over here on my blog.

I figure I've been on a little bloggy break anyway, and this is fresh material. LOL

But I really hope it might help someone else. You never know.

We all deal with these things differently.

Here is how I deal.

The blog address, in case you'd like to stop by: http://thehaganxp.wordpress.com/

My response to his post about being devastated, angry, and numb:

Okay, seriously? This sucks. I’ve been there. Except we found out about an hour after our second son was born. We don’t find out the sex of our babies either, so we were looking forward to finding out if we were going to be bringing home a Benjamin or a Katherine. Never dreaming that we’d bring home a life that we never, ever thought would happen to us.

He is now 18 months old. So it’s still fairly new.

Everyone here who has commented has good intentions. I remember getting the same kind of encouragement. I remember not wanting to read another blasted book about DS b/c all it did was depress me. I remember not wanting to hear about another child’s accomplishment b/c even though it was great for that child and for that parent, it was still a delay, and that was not what I wanted for my son.

I remember everyone telling me that I would one day be okay with this. That I would even (GASP) think of it as a blessing.

No. Freaking. Way.

But you know what?

They’re right.

You can’t see it now. God knows if you could, you’d be some sort of superhuman. You have to go through this process of mourning and just being sick about it (not everyone does, but most of us did) and thinking that you’ll never look at your child or think of your life without hearing/seeing “downsyndromedownsyndromedownsyndrome.” It’s all those months and months and, dare I say, years, of coming to grips with it that forms the new you.

Because I don’t know a single parent of a child w/DS who doesn’t eventually think it’s the greatest thing that ever could have happened.

EVEN THOUGH AT TIMES WE HATE THE DIAGNOSIS.

And even though I never, ever, ever thought I would say it. It almost shames me to say it simply b/c I am having to eat my own words.

I am not a bumper-sticker mom. I don’t chastise people for saying things that are politically incorrect. I haven’t even been on a Buddy Walk. I’m still, 18 months later, coming to grips with all of this.

And even though you may think you never will, you just can’t help yourself.

It’s like a club you never wanted to join, but once you unwillingly do, you realize that life is different here and that we all get to be a part of something that no one else truly gets.

Give yourself time. You don’t have to read the books now. You don’t have to read all the blogs. Please don’t Google every possible birth defect. You’ll go nuts.

Just be.

Mourn.

Smile when you can.

Embrace the fact that this is now your reality but it won’t always be.

We’ll be here for you when you have questions or want to cry or scream or just talk. There is always someone who is farther along on this journey, and there is always someone who is not quite as far.

Above all, just be honest. It’s truly the only way to grow through this.