My daughter with Down syndrome brings more joy to my life than anything. I need to tell you this before I tell you the whole story because it was not always easy for me.
Twenty years ago my wife told me there was a “little problem” with our unborn daughter, Abigail. The doctor had informed her our little girl had Down syndrome. Looking back I realize she was trying to break the news to me gently, but I remember thinking, OMG what’s a big problem to you? I sat on the bed too shocked to cry. All the questions every parent of a child with a disability thinks rushed into my head. Why us? What will her future be like? Will she be bullied? Will she have friends? Be able to read and write? Ride a bike? Find romance? Be happy? I knew very little about Down syndrome. And what little I had been told previously about Down syndrome was simply frightening. I wish I could say I was brave and confident but I wasn’t.
The best I could do was face the facts: Abigail was my daughter, she needed me, and I had to do everything I could to help her.
My wife, MaryAnne, was the proactive one. Through her networking with friends, and friends of friends, we found information that would help Abigail. Before she was born she was getting vitamin supplements. She started speech therapy and physical therapy at the earliest age we could find people to do it. She improved, but there were setbacks. At just over a year old she began losing weight and was diagnosed by her pediatrician as having, “failure to thrive.” Very alarming! MaryAnne found a new pediatrician who put a feeding tube through her nose into her stomach. Many nights we were at the hospital having it reinserted when Abigail inadvertently pulled it out.
I can’t remember when, but things gradually started getting better. As a toddler Abigail developed a talent that most kids with Down syndrome have: she was able to make other people happy. I don’t think it’s a willful thing where she tries to make people happy, it just happens. When people stare at her she smiles at them. As she got older and her interests grew to include hair, makeup and fashion, she began to spontaneously compliment those around her. Somber faced strangers break out in smiles when she speaks to them. Her favorite expression is, “This is the best day ever!”
School and interactions with her peers that are neurotypical have not always been easy. The reality is, everyone gets bullied at some point. Two things that have made a difference for Abigail is that she is optimistic and extremely confident! She was able to rise above these difficulties with the other students and was actually on the varsity cheer squad at public high school. This led to opportunities to cheer at the NFL Pro Bowl and Macy’s Thanksgiving Parade in New York City. Because she has been out in the public eye, she has been able to open the hearts and minds of people in our community and around the world. I never would have believed she would walk the runway in New York Fashion Week, present an award to a United States Congresswoman, shake hands with a billionaire, be in TV commercials, receive a Girl Scout award on a mountain in Switzerland, or be in an Oprah Winfrey television program.
Forgive me for bragging. I am proud of how hard she has worked to face her challenges. And Abigail continues to inspire me and others. She recently graduated from high school, secured an internship working at a local business, and after 15 years of trying, she learned to ride a bike last month. She wants to complete a mini-triathlon — maybe she will finish the race , maybe she won’t, but I know she will try.
And for those questions I had 20 years ago about Abigail’s future… yes, she was bullied, but she pushed through it and has proven herself better than the the bullies. Yes, she has friends. Yes, she can ride a bike. Yes, she can read and write. Yes, she has romance. And most importantly, yes, Abigail is happy! She is confident, proud of her achievements, a wonderful advocate for others and very much happy!
Today the world is a much better place for people with Down syndrome thanks to the efforts of many before us. I’m proud to see Abigail carry the torch forward, follow her inspirational adventures as she enjoys life and continues to change the hearts and minds of people she meets!