Down Syndrome is a genetic condition that causes delays in development
The syndrome occurs in one in every 691 live births
There are more than 400,000 people living with Down Syndrome in the United States
Editor’s Note: This piece was originally written for the National Down Syndrome Society’s My Great Story project in honor of World Down Syndrome Day.
“What kind of sneakers is she going to have to wear?”
This is one of many questions going through my head. It is September 2003, and I just found out my daughter is going to be born with Down Syndrome. I am only 16 years old, just days away from my 17th birthday.
I am a good student, sister and shoe lover. (Hence the reason why sneaker choice would be one of my great fears about this baby’s diagnosis.) I do not want to deal with Velcro versus ties or orthopedic shoes; I want to pick out the latest trends and styles for her.
With this diagnosis, I am now faced with the challenge of redefining every goal and dream I had for my daughter. I am scared, naturally. My friends are all out celebrating senior year, and here I am asking myself stupid questions.
After a few agonizing days I realize she is my child. I love her. Does it really matter what kind of shoes she has on? It doesn’t.
This child isn’t even born yet, and she has already taught me a lesson. I no longer care about shoes and shopping; I just want my baby to live. I want her to be born healthy and be happy.
So I make up my mind that just because she has Down Syndrome, I don’t have to give up all of my dreams for her. I can still buy her cool sneakers and shoes; we just might need to look harder for ones that offer support as well.
A month goes by and Jaylin is born – a healthy 4-pound, 12-ounce baby girl with a head full of black hair. She was born with a heart defect, but it gets corrected six months after birth. A little while after that, she begins wearing her new pink Nike crib shoes.
Most babies grow out of those kinds of shoes soon after birth, but not my little Jaybird. Down Syndrome can slow physical and intellectual development. She rocked those shoes for a good couple of months.
These days, Jaylin is doing well. She goes shoe shopping with me and her current pick is a multicolored pair of Nike high tops. I don’t think she truly cares about shoes but just enjoys spending the time with me picking them out.
She teaches me and her teachers more than we teach her. I am so happy that I was blessed with her and that she changed my views on life.
Had she not been born with Down Syndrome I don’t think I would be as good a person as I am now. I currently organize a Buddy Walk with some other moms, and we use funds from the walk to donate care packages to families facing hospital stays due to complications of Down Syndrome.
Jaylin is almost 6, and this year was our fifth Buddy Walk. I started the walks in honor of her, and it is because of her that I can reach out to other families now. Having a baby with Down Syndrome made that 17-year-old me grow up fast but strong.
Jaylin is such a special child. She takes her time when most of us want her to rush, and she is always the one smiling when everyone else is melting down.
She will not let the world define her. She will keep doing what she loves, in great shoes, just to make me happy.