For nine months, my husband and I had been expecting a perfect, healthy baby girl. We had every test tell us that’s what we could expect. So when Zoe Beth was born and we were told we needed to run genetic tests, we were devastated. What just happened? What about our perfectly healthy baby we had watched growing for the last 9 months? How does this happen? Was she going to be okay? Is this my fault? What did I do wrong? Will she ever walk? talk? go to school? I had so many questions. I was so afraid. I needed answers!
We are the proud parents of a happy, healthy, amazing 4 year old.
One of the nurses put me in touch with a social worker who brought me a book and a binder. She said, “These are from the Central Mississippi Down Syndrome Society. I think you might find some of this information helpful.” I said, “Thank you.” I spent hours reading and rereading every single page. I needed to know, what does Down syndrome mean for us? I would give anything to be able to go back and talk to myself in those first days, so I could say, “It means everything is going to be okay. It means you’re going to take your time growing up. It means your baby girl is going to do everything your baby boy did, she might just need a little extra encouragement and time to get it done.”
The worst feeling in those very early days was the fear of the unknown. My imagination was so much worse than anything that we have actually experienced. I absolutely grieved the loss of the child I thought I would have. I focused so much on all of the things I thought she would never be able to do. All of the things I thought she could never be. But I refused tot let myself stay in that place. I had to find out what was possible!
Our experience has been something kind of wonderful. I wish I could have imagined how amazing she is. When I first heard the words Down syndrome, I never imagined Zoe Beth running up to her friends at school and church to give them big hugs. I never imagined running and chasing her across the front yard in a full sprint. I never imagined standing on the edge of the pool as I (and 100 of her biggest fans!) clapped and cheered her to the finish line of her first race in a swim meet. I never imagined her singing and signing “Twinkle, Twinkle Little Star.” I never imagined her saying, “I loooooovvvveee yooouuuu!!!” over and over again.
Four years after we received Zoe Beth’s diagnosis, this is where we are. We are the proud parents of a happy, healthy, amazing 4 year old. She goes to school 3 days a week. She loves swimming for the Sealions Swim Team, a fully inclusive team of almost 100 kids, where she is one of two swimmers with Down syndrome. She loves jumping on her trampoline for hours at a time. She loves books more than life, and although she can’t actually read just yet, she will recite a story to you with all the enthusiasm of a Julliard trained stage actor. Her favorite sign is “bathtime” and her favorite food is a red bell pepper cut into strips.
Life is good.
I think one of the greatest decisions we made was joining the Central Mississippi Down Syndrome Society. We went to our first Buddy Walk when Zoe Beth was just 9 weeks old. Through this organization, we were put in touch with families of older children who we could learn from, but we also met parents of children the same age as Zoe Beth. Those families have become more than friends, they are our extended family. They are more than a support network cheering each other’s kids on, we are a team helping to spread awareness and make this community a better place for our kids. I’d like to encourage you, when you are ready, to reach out and connect with people in this community. We can help answer questions, and hopefully ease fears. The best thing about this community, it is so full of love. We hope to see you around.
