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.