By Laura Hanson
Photo (Pink): By Lindsey Palmer Photography
“You’re grieving the baby you thought you were going to have.” This statement is commonly shared in the Down syndrome community to explain the emotions we felt when we learned of our daughter’s diagnosis. Three years later, Mara is thriving and living a life exactly like her typical peers.
Sadness. Anger. Guilt. Uncertainty. My husband, Tony, and I felt them all when we received the news that Mara, our fourth of five children, was going to be born with Down syndrome. We worried about our family’s future. Are we going to afford the medical care and therapies she is going to need? Who will care for her after we pass? How will this impact her siblings? We were faced with so many questions and fears.
Desperately seeking guidance, I mustered up the courage to call the New Directions Down Syndrome Association. Within hours, we were talking to a dad (and board president of the organization) who had a three-year-old with Down syndrome. He and his family invited us to supper so we could ask all the questions we had – without judgment. During our visit, we watched their sweet girl play with her brothers, interact and giggle with passersby, chow down a cookie, and simply enjoy her time with her family. During that time, those emotions we had felt before started turning into hope. We began to think, “Okay, we can do this!”
Mara’s Down syndrome has never defined who she is.
Yes, it is a part of her and has thrown us several challenges, but she is so much more. She is silly, caring, strong, beautiful, smart – everything we could wish for. We are truly blessed to be part of “The Lucky Few.” The connections we have made with other parents have been incredibly helpful and necessary for us to be able to navigate this journey. I quickly found myself ready to serve the Down syndrome community, joined the New Directions board in 2021, and recently stepped into the role of the organization’s board president.
When sharing Mara’s diagnosis, I received different reactions from friends and family. I always tried to share the news as positively as I could, but I’d often receive sad expressions and “I’m sorry.” In fact, I still receive them from time to time. Please do not ever be sorry – it’s a baby! Remember to congratulate the parents, celebrate the birth as you would any other, and give them a joyful hug!
If you are a parent hearing the words, “Your baby has Down syndrome,” I want you to know that it is going to be okay. Yes, you and your child are going to face challenges, but you do not have to do it alone. We have amazing resources in the Down syndrome community. Remember that you can have the best plan and idea of what you expect in life, but sometimes, you must have faith and trust in what is in store for you.
*New Directions Down Syndrome Association is a local nonprofit that strives to enhance the lives of individuals with Down syndrome by providing support, information, and education to those individuals, their families, and professionals. Check out newdirectionsdsa.com for more information.
