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A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Tuesday, December 27, 2011

The Road to Acceptance

Notice I say "road to". I'm not there yet.

Everyone comments about how I'm holding up remarkably well, how brave I am, etc... I really appreciate the support! But somehow it seems that I've always known that Lauren has Down syndrome. Is that weird? We've known for 3 months. It's just a part of her now, the same way my son's cute little gap between his two front teeth is a part of him. We're just lucky enough to get to know this part of her before she arrives. I can't wait to see her beautiful face, to see who she looks like, to get to know her smell, her personality. All of the things ALL parents get excited for!

Here's the part I'm struggling with. Whenever anyone is pregnant, people inevitably ask, "Do you want a boy or a girl?" and no matter what the answer, somebody always throws in, "It doesn't matter, as long as it's healthy."

But what if it's not?

Lauren needs open heart surgery at four or five months old. As her mom, I can't help but feel like my baby will be born with a broken heart and I can't be the one to fix it.

It's terrifying. It's overwhelming. And frankly, sometimes it pisses me off. Most days I can accept it, I do accept it. Getting mad fixes nothing. Worry only steals the joys of today, it brings nothing constructive for tomorrow. But sometimes I am angry. I don't know if my anger is directed at God, the universe, everybody with "healthy" babies. I don't know sometimes.

Most days I'm okay. Honestly. I wouldn't change one thing about my little girl. I wouldn't magically remove her extra chromosome and make her not have Down syndrome. I wouldn't. Like I said, it's just a small part of her. But every small part of her makes up all of her, and she's mine. She's the baby I'm supposed to have. I can't wait to hold her in my arms, count her fingers and toes and tell her how long we've waited for her.

At this point, since she isn't here yet, it's easier for me to learn everything about her heart condition and the surgery she'll need to fix it. I'm a nurse, I can look at it from a clinical standpoint. But I'm scared. I'm scared because I know the minute the doctors hand me my brand new baby everything will change. I love her so much already. I can't even really explain it. I feel like Lauren and I have crossed so many hurdles together already. I can't wait to meet this little person that has changed so many lives already. The minute she's placed into my arms, she becomes my daughter.

So I consider myself well on the way to acceptance. But I'm not there yet. Maybe I will be there after her surgery. Maybe I'll make it there before, I hope so.
The point of this post is to tell you that it's okay. Maybe you're one of my friends or family members. Maybe you are an expectant mom or dad with a prenatal diagnosis. Maybe you're one of their friends or family members. Maybe you're a complete stranger to all of this. It's okay to be scared, it's okay to be angry and it's okay to admit that you haven't reached acceptance. We'll get there.


  1. You will love this little one more than you can imagine. You already do and you haven't met her yet! Giving her to the doctors will be so difficult, but you will do it because you love her! There will come a day, when all the things that go with the diagnosis - "Down syndrome" "heart defect", "glasses", etc. will be just a small part of the person that is your daughter. Likely, you'll be thinking about tea parties, and the Muppets and knock knock jokes. I totally understand that feeling with a comment like "all that matters is that the baby is healthy." Well meaning, to be sure, but not accurate by any means! There is SO much more that matters than just "healthy!"

  2. Jackie,
    I know I haven't been a part of your life for a long time, and I feel so honored that I can follow your family's story as you navigate territory that few people ever do. Thank you for your honesty and wisdom. We are listening.

  3. I first found your blog on the bump, and I have been following it since. I have never commented before but this post has truly touched me. I am expecting my first child in February and she has been diagnosed with kidney problems. I have been handling it well, but sometimes people just push me over the edge. The strength you have shown in this post gives me hope.