Mamie Grace with her twin brother Brooks
Please see our video and photos
from last year's events on YouTube
I was about 12 weeks pregnant with twins when I discovered that one of my babies would be born with Down syndrome. I was immediately told that I could have a selective reduction. A doctor could do a procedure that would end my little girl’s life and allow her twin brother to go on. It was a horrible thing to think about while still in shock from the news.
After a lot of tears and a great deal of thought, we came to peace with our decision to carry on with the pregnancy and embrace both of our children. We knew this little girl would have a huge impact on our sons’ lives and make our family a better one.
In the beginning, we didn’t think we would be capable of raising a child with Down syndrome. Boy, were we wrong!
Unfortunately, our society is programmed to believe that people with Down syndrome don’t have the same value as others.
The pain and strife we experienced during that time could have been avoided or at least minimized. If we had known more about Down syndrome, or if our society was more accepting, our reaction may have been one of joy instead of sadness. Having a child with Down syndrome isn’t a curse; it is, as many parents will tell you, a blessing.
Our blessing didn’t last. Sweet Mamie Grace died after suffering complications from heart surgery. Our pain is ever-present and my guilt as a mother for not embracing her from the very beginning continues to this day.
People would always say, "Oh she's so cute." I didn't believe them, I thought they were just being nice. I couldn't see it until it was too late. It was the weekend before her surgery when something finally clicked in me and I saw what everyone else could already see. Mamie Grace was precious and really was very cute. It's not easy for me to admit or to talk about but it's necessary for so many reasons. I wish I had known. I wish I had kown just how special and beautiful people with Down syndrome really are.
It is my hope for parents who first learn they might have a child with Down syndrome, to be able rejoice and not regret. That is why we have chosen to raise money for NDSS. They work everyday to not only improve the lives of people with Down syndrome but also educate those who don’t yet see how amazing these people can be.
NDSS has been dedicated to making a marked difference for people with Down syndrome since 1979. NDSS works to create a culture that fully accepts and includes the more than 400,000 Americans with Down syndrome. NDSS envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities.
In loving memory of our little Mamie Grace.
Elizabeth Manresa and Teddy Eynon