• Niasha Fray, MA, MSPH, GBDF Board of Advisors

Parenting A Daughter With Down Syndrome: An Inspiring Journey

When I was a little girl, teenager, and young woman I dreamed of what it would be like to have a little girl. To dress her up. To take her places with me. To play with her. To watch her become a strong, intelligent, sweet, and beautiful African American woman. Then one day I decided that I was ready and my partner was eager to bring forth life with me. God blessed us! I was shocked and amazed as I felt my body change. I became excited the more I shared the news with my family and friends.

When I was nearing the end of my first trimester I was asked if I wanted to get prenatal testing for the baby to determine any markers of disability or health conditions. I agreed to the testing because with my personality and matured seasoning (also known as age), I wanted to be prepared for as much as I could. One day driving home the nurse from my obstetrician called to tell me one of the tests came back indicating my child might have Down Syndrome. I immediately thought, “Down Syndrome? How accurate is the test? How common is this? What will it be like to be the parent of a child with Down Syndrome?”

At my 20 week appointment, the baby’s gender was confirmed. It’s a GIRL!! But along with that miraculous news was the confirmation of a Down Syndrome diagnosis and a congenital heart defect. These two commonly went hand in hand according to the gentle, smart, and well prepared doctor who saw me and my partner that day. Then the BIG question came. Did we want to keep the baby? The doctor explained many couples decide to abort at this time. We needed to make the decision in a matter of days. We only took seconds. “We are keeping her.”

As the days and weeks went on, I grew and we visited a new Obstetrician and Pediatric Cardiologist who were both kind, well prepared, patient and caring. Even though they assured us, prepared us, and reminded us what would happen; I began to wonder more and more, “What would it be like to be the parent of a daughter with Down Syndrome?” Well when she was born we knew right away that all of our preparation was not in vain. She was Beautiful and immediately treated like a princess by everyone who met her. I mean this little girl stopped people in their tracks with her jet black hair, fair skin that eventually darkened to gingerbread brown, attentive eyes, and bright personality. She was the center of attention everywhere she went.

One day I was visiting a family member with my infant daughter and someone mentioned how a cousin of theirs with Down Syndrome lived her life in a home, but was very sweet and kind to be around. I was sad for this woman and her cousin. I pledged to myself that my daughter will still be a strong intelligent sweet beautiful African American woman who lives as independently as she chooses. Now that she is about to turn four I watch videos and have friends whose children have special needs and I notice something new in this generation of parents, educators, and caregivers. They actually listen to new research, advocates, educators that say: Love, care, high expectations, patience, and inclusion are keys to the social, academic, professional, and financial success and stability for these children who will grow into adults. I see these children accomplishing wonderful things that would make any parent proud: becoming actors, entrepreneurs, dancers, teachers, athletes, public speakers, visual artists, political advocates, and more.

Then I think how many children did we give up on because they were different? How many children did society lose out on because we thought the best place for them was in an institution locked away? How many of these children became our lowest expectations because we gave up too soon and didn’t love them with patience and steadfast faith that one day they’d get it in their own time, and we just needed to show them that we believed in them enough to keep trying.

I look at my daughter now and I think about what Down Syndrome has meant for me on this early part of her journey. It has made me more patient, but it has also made me a better advocate. It has made me worried about her, but it has also given me testimony after testimony of all the wonderful things that she can do. It has made me more sensitive to her needs, but has also allowed me to pay closer attention to her independence and her voice.

Down Syndrome is a Developmental Delay which means she is equipped with every possibility of growth and intelligence as anyone else, but her extra chromosome means that she takes life at a slower pace. It means that I get to enjoy each of her stages a little longer than most parents and I don’t have to watch her grow so fast that I miss something. It also means that when she finally gets it, she’s really got it! She gets to practice over and over again. So while her perfection takes longer, it’s solid and uniquely hers and she OWNS it!

I am so proud to be the mother of a beautiful, intelligent, gentle, fun, loving, joyful, bright, strong, sweet daughter with Down Syndrome!


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