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Saturday, October 12, 2013

What I Didn't Know

I really don't remember what was said to me by the doctor, who after examining Kayla, came to talk to us about some characteristics she had and that he suspected Down syndrome.

I already knew the moment she was born and I looked at her face and in to her eyes that she had Down syndrome.

I wanted him to dispute what I suspected, but he didn't. So while he was talking to us my mind went blank. I didn't register all that he said. It was a short conversation. I don't remember being alarmed by anything he said, I don't remember anything particularly negative that he said either. I think he had a somewhat neutral to positive tone. But I couldn't tell you what he said.

I know many other parents had a different experience in which the tone was largely negative focusing on all the potential medical issues that may or may not affect their child.

No one knows anything about what their child will be like after they given birth. Whether they have Down syndrome or have the typical 46 chromosomes. No one can tell anyone else what life will be like with their child and I understand that.

The things I didn't know then ... Kayla's personality, her quirks, her likes and dislikes, her abilities are what made it somewhat harder at the beginning. Even though rationally, I know that no one could tell me those thing about Kayla, just as they couldn't tell me about Lucas.

But what would be nice to hear along with the Down syndrome diagnosis would simply be that you will take your baby home and live life ... no, not just live life, but experience life with your child. And that experience includes frustrations, challenges, joy, and love.


I'm re-sharing this post I wrote 2 years ago for Parents.com; Having A Child With Down Syndrome: What Nobody Tells You.


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6 comments:

Andi Sligh said...

We saw the on-call pediatrician because Nathan was born on the weekend and ours was out of town. I remember everything she said - none of which was negative (or positive) - but mostly I remember the look on her face. She was scared. When she spoke, she tried to cushion the blow (I think...may...possibly...) or at least delay so she could get away quickly, but I didn't let her off the hook. I was direct with my questions and never broke eye contact.

Anonymous said...

Yes, experience life with your child. I like that!! Love mom

Susan said...

Just blogging around and found your blog. First so glad that you are here blogging. So many deserted blogs on blogger these days. Secondly your blog caught my interests so I read some of your posts. I have a cousin that is older then I am and I am 63, and he has Down's syndrome. I can remember my Aunt answering phone at marathons for research. So many;; years and still not a cure.
Then my niece has a son with autism. No cure there either. Well when I was growing up, polio was our fear. Girl on the corner has it and stay away, parents were frightened. Then I remember my Mom collecting for the March of dimes. I also remember in first grade. taking the sugar cube, the first generation to grow up with the vaccine. Well we had a cure there, maybe Downs and Autism will have there day. Here is my prayer for you, and may God Bless You. Thanks for letting me visit.
Susan
http://amazingcouponanddiscountdeals.blogspot.com

Raelyn said...

Susan....
My youngest brother has Down's syndrome. He is the sweetest, most thoughtful kid!! And, get this. He is also my best friend!! I think {Mom agrees!!} that if I possessed the power to steal his extra chromosome, and make my brother "normal", I would never!! ;)
--Raelyn

Kristi Campbell said...

While our posts today are different in their reflections on not knowing what to expect with our SN kids, and seeing them face Life Challenges (and us too), they're really similar in other ways (the moments, the brilliance, the wonder). Weird. Maybe all SN moms are on the same page today?

Kerith Stull said...

I wonder sometimes what doctors are thinking when they have to "deliver the news"....whatever the "bad" diagnosis is. Do they realize that not only will this moment change everything, but it will be remembered forever?? And moreso than just remembered, the FEELING of the moment will be remembered more than the words. I remember when I was 36 weeks pregnant and the doctor told us about her CMV which eventually caused her cerebral palsy. I remember the feelings more than the words. I wish she had told us to love our baby and embrace life. Do you think they get that??(Visiting from "Love That Max")