What is something unique and special about your child with trisomy that you wish more people knew?

Caring for Elena Grey was an emotional roller-coaster. Elena defied everything our first doctor told us to expect. We were told she would be lifeless. A shell of a person closer to a baby doll than a person. But that was not the case at all. Elena Grey was strong willed from the beginning. She was given zero chances of survival and was expected to pass during birth. Elena had other plans. She battled through the delivery and arrived in this world alive and breathing on her own. And an empty shell? Not hardly. Elena had a very strong personality. She smiled her toothless baby smile when we played with her and brightened our world for those few glorious moments. And if she was hungry or had a dirty diaper? She would rattle the rafters letting you know she required assistance. But what I will remember most about Elena Grey was the love. When I held her it was like all of her pain and discomfort went away. She would sink into the nook between my elbow and chest and relax. Elena would lay there, breathing easily, and staring up at me with wide eyes and I could tell that she knew she was loved, and that she loved me. Elena Grey passed away that same way, cradled in my arms, surrounded by her family, and knowing she was loved.

Why do you believe raising awareness about trisomy conditions is important, and how can others make a difference?

I believe it is important because, when we received our diagnosis, we didn’t even know what Trisomy 18 was. We had never heard of it. Awareness and knowledge are important for future parents and doctors to be able to know what to expect and how to treat and make the best decisions for their child. In my personal experience, if we’d known more about her condition beforehand we would have been more confident and less intimidated in preparing for, and caring for, Elena. We would have known how to advocate for her.

During Trisomy Awareness Month, what message would you like to share with the world about your family’s journey and the trisomy community?

Our family’s journey with Elena was a beautiful experience. We learned how to live in the moment and embrace every single one of those moments. She was much loved by her entire family. She revealed in us a compassion we didn’t know we had. Her siblings will be better and more compassionate people because of her short, but very powerful and influential, time she was here with us. Children with trisomy truly are a gift.