Happy Down Syndrome Awareness Month!

As most of you probably know, October is Down Syndrome Awareness Month. 4 years ago I definitely wasn't very "aware" of anything about Down Syndrome. At 11 weeks we had a "probable diagnosis" and at 16 weeks it was confirmed by amniocentesis that our baby girl would be born with Down Syndrome. Much research ensued, coupled with emotions that were all over the board. She was miraculously born, had surgery on day 2, stayed 7 weeks in the NICU, came home and we settled into our new life. With new awareness. New blessings. New sensitivity. New compassion. New knowledge. And the list goes on and on.

Here's a paragraph from Lila's birth announcement letter:

The joy and happiness Lila has brought us in her short life cannot be expressed. We are so thankful for the gift of her life. We did not choose this journey but if given a choice, we wouldn't change it. We believe that the blessings that lie ahead will far outweigh the challenges. We also believe that the challenges that lie ahead will bring us to an even greater awareness of God's faithfulness. With the help of God and her family, it is our hope that Lila will grow up to be strong and healthy. Although she may travel that road a little slower than others, we will consider each milestone in her life a blessing.

I remember writing that letter, crying as I wrote it. I meant every word. Today, I mean every word of it times one thousand. One million. I can't even put it into words or use a number to describe how I feel.

We did not choose this journey but if given a choice, we wouldn't change it.

That sentence? I mean it. I wouldn't change Lila for anything in the world. I wouldn't even take away the fact that she has Down Syndrome. I just wouldn't. Nor would anyone in our immediate family as we have had many discussions about it. In one family discussion we were talking about the fact that some people feel sorry for us because Lila has Down Syndrome. We find that a little sad, but we know it's because they just don't know. And maybe there isn't any way you could know unless you have been blessed with a child that just happens to have an extra chromosome. T21 if you will.

As for our family, we're aware. And we're so, so thankful.

Happy Down Syndrome Awareness Month!




  1. Beautifully written Linda! Happy Down syndrome month to you too!

  2. That was lovely, Linda! We wouldn't change it either. Happy DsA Month!

  3. Beautiful post. What love you have for Lila :-)

  4. So very true. Our 16 years in the Down syndrome club have been the best.

    6 months after Josh was born with Down syndrome, I attended my first parent group. I was touched by the struggle people were having with “why?” I went to bed with a heavy heart and awoke with this story. I hope you enjoy it.


  5. Linda - what a lovely post. The birth announcement was beautifully written and expressed so much of how I feel about my littlest one.