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To Moms Who’ve Received a Prenatal Down Syndrome Diagnosis

  • Jim Daly Jim Daly is president and chief executive officer of Focus on the Family, a non-profit organization dedicated to helping families thrive.
  • 2013 Jul 19

Each year, thousands of pregnant couples throughout the U.S. find out through prenatal testing that the child they’re expecting has Down syndrome. For most of those parents, receiving this news is a seismic event that up-ends many of the hopes and dreams they’ve held for their child. In the confusion and fear that surrounds such a diagnosis many parents choose, sadly, to end the pregnancy.

Lauren Warner is a young mom and blogger with a personal take on Down syndrome. Recently on her blog, Sipping  Lemonade, she posted an open letter to moms who've been given a prenatal diagnosis of the condition. Like the people in the story of the preborn baby with Down syndrome I blogged about last week, her experience has let Lauren see beauty beyond a diagnosis. I want to share part of Lauren’s letter with you…

Dear mom who just received a prenatal Down syndrome diagnosis,

I know how you feel.

Except — unlike you, I was holding my new baby, Kate, in my arms when I found out. She was wrapped in a blanket, looking up at me as I cried, listening to the Neonatologist on staff tell me — only minutes after she was born — that she had Down syndrome. And what that meant.

He said that it meant she had an extra chromosome. And that she would have learning delays. He said that it meant she was significantly predisposed to certain medical conditions, including congenital heart defects — and that we should get her heart tested right away. He said that it meant she had low muscle tone and may not be able to breastfeed. He said that it meant she would do things on a different schedule than other kids.

And in those first few days, after hearing those statistics, talking to doctors and researching online, I thought I knew what it “meant” to have a child with Down syndrome. And quite frankly, I was devastated.

And so it is with you.

But let me tell you — from one mother to another — those facts are not what it means to have a child with Down syndrome.

Many of those facts may not even apply to you. Some might, but many might not. I’ve learned this with all of my children. And I never allow generalizations to set my expectations. (For the record, Kate breastfed like a champ and continues to break stereotypes.)

What those facts didn’t tell me about Kate is that — along with almond eyes and slightly lower muscle tone — she would also have my thick, blond hair and full lips. That she’s a Daddy’s girl. That she loves peanut butter waffles and rocking her baby doll to sleep. They didn’t tell me that she’s a nurturing big sister, a doting little sister — and the star in the room wherever we go.

Those facts didn’t tell me that she would make funny faces and dance like crazy to Fresh Beat Band. That she loves to sing. And swim. And go to gymnastics. And unload all of my kitchen cabinets.

What those facts didn’t tell me in all that they “meant” is what she would mean — to me, to our family, to our friends.

I look back on those first days and I remember the feeling of craving normality. I didn’t want to hear how life would be forever altered in some big way and that I would just learn to accept it. I just wanted life to be the way it was before — routine, “normal.”

Will things ever be normal again? I thought.

And then one day — soon — they were. Except they weren’t like before. They were better.

Wow — “better.”

Lauren is aware of the challenges her daughter will face, but life is better because she recognizes and embraces the beauty and blessing of her daughter. That’s something that can resonate with each of us. After all, every one of us has his or her own set of problems and challenges—some of them are visible, like Kate’s, and some are not. But we all long to be accepted and fully loved in spite of our “issues.” And that’s what God does with each one of us.

To read Lauren’s full letter, please visit her blog.

If you know a woman who is dealing with a prenatal diagnosis of Down syndrome, would you pass this along to her? Lauren’s words might provide encouragement that’s greatly needed.

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