So, You Just Found Out Your Baby Has An Extra Chromosome…

I’m sure you are shocked, scared, overwhelmed and grieving – I know I was.  I was 11 weeks pregnant the first time I heard that my baby might have Down syndrome.  It was confirmed at 18 weeks.  I considered terminating my pregnancy, but I was lucky enough to have well-informed medical professionals and a local Down syndrome association who helped me to learn about the realities of life with Down syndrome.  I know though, that many people are provided little to no information, or incorrect information.  There are several great websites that can help you find out more, including ndss.org and nads.org.   They will help you find support and can give you lots of factual information.  But you can start here with a few of the most important things to know when receiving a Down syndrome diagnosis.

IMG_1159First, please understand that this does not define you, your child, or your family. My family is normal.  We have exciting Christmas mornings and nervous first days of school.  My kids play and laugh and fight together.  We go to parent-teacher conferences and way too many after school activities.   We have barbecues and birthday parties.  We have tons of friends.  It may seem impossible to you now, but Down syndrome is merely a footnote in your family’s story.

This next part may be hard to hear but… You are not special.  Well, maybe you are special – I don’t know you.  But that’s not why your child has Down syndrome.  I am a regular person.  I yell at my kids, I swear too much, and at times I feel overwhelmed by parenthood.  I’m not a saint.  You were not given this child because, “God knew you could handle it.”  Anyone is capable of raising a child with Down syndrome.  If I can do it, you can.  Parenting works like this: Take things one step at a time; what you don’t know, you learn; love your child.  None of that changed just because my child has Down syndrome.  She makes me laugh, she drives me crazy, sometimes I am AWESOME… and sometimes I screw up – just like with my other kids.

However, you will become a better you.  Becoming a parent changes you, and becoming a parent of a child with a disability is even more affecting.  I had a much narrower view of the world before my daughter was born. I now practice empathy instead of sympathy, and I judge people by who they are, not what they can do. I’ve opened my life to include people I never noticed before.  I stopped letting fear of saying the wrong thing prevent me from getting to know all different kinds of people.  I don’t value my journey by where it ends or how quickly I arrive, but by what happens along the way.  My world is bigger, my life is fuller, my heart is freer, and I am happier because of this change in perspective.

485207_10200638402467277_2047462886_nFinally, and most importantly, you are not alone!  There are hundreds of thousands of families in the U.S. who have taken this journey – millions worldwide.   You really need to meet some of these people!  We have been where you are and we are living proof that life with Down syndrome is not much different than life without it.  You can contact your local Down syndrome association or join an online group and talk with someone who understands.  We are here to support you.

I’m not saying life with Down syndrome is all rainbows and unicorns – but life isn’t all rainbows and unicorns.  As someone who’s been where you are, I just want you to understand this:   My life is good. 

 

If you already love someone with Down syndrome, please share anything else you wish you would have known when you first met them.

 

 

Advertisements

8 thoughts on “So, You Just Found Out Your Baby Has An Extra Chromosome…”

  1. Hey there – welcome to blogsville. You’re a beautiful writer, and I look forward to reading more, plus you kiddo is ADORABLE! One thing I have found to be true is that God doesn’t give kids with Down syndrome to “special” parents, having those kids, raising those kids, loving those kids change us into “special.”

    Blessings,
    Alyson

      1. Totally agree….those smaller facial features make our babies with Ds so darn cute!! Thanks for sharing this wonderfully, candid post. I completely agree….I have no supermom abilities over anyone else. But, I have become a kinder and less judgmental person raising my son.

  2. I really wish this post had been out there when our baby was born. We didn’t do the amnio, and only found out about Down’s at Little Bird’s birth.

    If I had a nickel for each person that said “God gave you this baby because you are special”, I could have paid for 5 days in the neo-natal intensive care unit. 🙂

    And competent medical doctors with a good bedside manner make all the difference.

    Seriously, GREAT post, thank you!! I’m saving it for future reading in my Feedly reader.

    Looking forward to more posts!

    Peace,
    LBD

    1. Thank you! I had a hard time finding anything positive as well. Now that I am figuring out all this blogging stuff, it’s really encouraging to see so many people sharing their stories.

  3. This post is so timely you have no idea. I just found out my baby has an extra chromosome… yesterday. It’s nice to hear I’m not special. I don’t feel special and I’m getting a little sick of hearing it actually.

What do you think?

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s