Sometimes, it seems like I have had the same conversations with people over and over again regarding my daughter with Down syndrome. Because of my experiences with her, I have learned how much people don’t understand about Down syndrome and people with intellectual disabilities. Sometimes, this leads to me feeling extremely frustrated because I am her mom, friend, and advocate. But, I need to remember one important thing: I once was one of these people who didn’t understand.
Before Jaycee, I thought, like many other people, that only older mothers gave birth to babies with Down syndrome. I was 25 years old when I had Jaycee. I looked at the doctor and asked, “How did this happen?” The doctor explained to me that the chances of Down syndrome occurring increases with maternal age, but it can happen to any pregnant woman for no reason at all. Since having Jaycee, I have repeated this explanation to people who wonder what went wrong for me to give birth to a child with Down syndrome.
Before Jaycee, I felt pity for children with Down syndrome. I saw their trouble learning to speak and their difficulty picking up other developmental skills as sad. I felt sorry for them for wearing diapers past the typical age. I called these children “poor thing” when I saw them struggling with a simple task. Then I had Jaycee. I have witnessed her struggles, but I also seen many, many successes. She isn’t someone to pity. She is someone to be proud of. She works extremely hard to learn new things and doesn’t give up. Jaycee’s shortcomings are not the center of our lives, and I have learned to encourage growth in her stronger areas. I feel happiness when Jaycee makes a joke on her communication device or through sign language. Jaycee doesn’t seem to feel sad about her life, so why should I?
Before having Jaycee, I thought all life was valuable. This is the one thing that hasn’t changed, but I have received more clarity. Jaycee’s life is not important because of what she can do. Her life is important because of who she is. She is a sweet girl, a daughter, a sister, and cousin bringing love to our family. She is a fighter, surviving two open heart surgeries, two heart ablations, and multiple hospital admissions. She loves music, dancing, pizza, being with friends, and the color green. She has thoughts, opinions, and emotions. She is a human being whose life is no more valuable than mine just because I can speak, graduate college, and hold a job.
As we celebrate World Down syndrome day on March 21st, I am reminded of the work advocates have to keep doing for people with Down syndrome. Sometimes, it feels overwhelming to address preconceived notions and to keep educating the public. I am reminded that people’s minds and attitudes can change, because I know mine did. If only every person in the world could meet Jaycee, then they too would understand.