Saturday, October 17, 2009

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.

15 comments:

Leah said...

What an excellent response! Can I just email them and say "Ditto"?

Lauren @ When Happiness Finds You said...

I am glad your break is over.

Great words. Really great.

mlfont said...

wow, so well written and so true! I want to copy it to my blog, you read my mind! Blessings!

Lisa said...

Beautifully put. Whenever you are super honest and raw, it brings tears to my eyes. That family is lucky that you stumbled upon them. I know you will be a big support to them.

Melissa said...

That is beautiful Angela!!! Love your writing..it always seems to touch me. Although not the exactly the same, I have gone through a lot of emotions with Kendall's birthmark on her face. I have drowned myself in blogs and research and have met a whole new family of friends, a different perspective on life and how we live it, lots of hope, and lots of compassion. i can really relate to becoming part of a club you never signed up for. It becomes part of who you are. I tend to be a private person, but I admire your ability to share and help others!! You are awesome.

Branton Family said...

Amen sister, couldn't have said it better myself! :)

Monica Crumley said...

You're very honest in your response to him and I hope he got the message at the end that we'll be there for them whenever they're ready to seek support from the most awesome community in a very private club and that the only way to get in is to have a child with an extra 21st chromosome. (whew, seriously run-on sentence... oh, well)

Mary Jo said...

Wow just wow. What a gift you are to all those that you share your raw and real journey and heart with - in all it's beauty and saddness. Thank you for being so real... again.

Adrienne said...

Great words of advice Angela! Don't ya just feel bad for this dad? Been there and know how he's feeling-just stinks but he'll come around.

Anonymous said...

I am so proud to know you!
Love,
JILL

paula said...

Angela, I sit here crying because I am once again reminded a tiny bit of the weight you carry about in your heart every single day. I know it aches and we have just accepted it. Easier for everyone BUT you and your sweet Matthew who will live with this forever. I love you so very much and remain amazed at the strength God has given you two. I love the way Andrew loves Baby B in his own three-year-old way. Yet even that makes me sad because he has no idea his brother is different. Thank you for encouraging others. I am again proud to be your mother.

Tricia said...

That is an awesome bit of advice/encouragement that you left for that family. It sucks that you have to live the pain to understand it enough to give such good advice, but it is good that you are letting God use you and what you have learned to help others. I pray for you everyday. May God continue to pour blessings upon you.

The Soldatke family said...

Angela,

I enjoyed reading this. Even though we have different diagnosis for our boys; I feel like we walk a simialar walk. I hope this family has been helped by your words; they were beautiful and true!

Anonymous said...

very off topic. www.uddercovers.com is doing the free covers again. Enter onefree to take away the 30 something cost, and about $10 to ship. 1 free per e-mail, but you can use your and your Dh's addys to get 2!!!! I know Benjamin did well with the nursing and am suposing that you will nurse this one too. I havn't seen you on the DDC for abit, but I just posted about it there and wantd to make sure you knew!!!

Hope all is well...Jamie

Anna said...

Angela, you are inspiring! That's why I gave you an award. :) Check it out.