The Value of a SpeechJuly 19, 2017
People have asked me why I decided to write this particular story so I wanted to share a little about my reasoning and my heart.
When I hear researchers and scientists tell us that there may be no more people born with Down Syndrome in less than 20 years, I feel a little bit sad and unnerved to think of that possibility.
27 years ago I discovered, while pregnant, that my son would be born with Down Syndrome. The incidence of prenatal testing was not yet so prevalent. My son was suspected of having Down Syndrome, due to an issue with the pregnancy, so genetic testing was immediately ordered. I wanted to understand what I was facing so I went through with the Amniocenteses and we learned that my son did indeed have Down Syndrome.
This is a parent’s worst nightmare. Hearing that there is a “problem” with your child is the last thing a happy mother expects to hear during her first pregnancy. The feelings of denial, grief and utter desperation are significant. Every diaper commercial, every baby toy, every smiling happy expectant mom you see, is a constant reminder that your reality has dramatically changed, your world has shifted.
I initially wanted to hide, I wanted to curl up in a ball and die, I wanted to believe they had made a mistake. I cried for several weeks but finally I summoned my courage. First I had a decision to make, was I willing to keep this pregnancy. After careful thought and consideration and after weighing all of my options, I decided to keep my baby.
After receiving the diagnosis, I was given the worst-case scenario. The medical professionals I encountered told me about all the things he would not do, about how difficult my life would be. For the record, almost none of those suggestions of his limitations became a reality. He did take longer to accomplish his goals, but he has accomplished them.
When I Ordered You is about the journey from my previous expectations to my new reality. The story talks about the frustrations as well as the joys. While I would never have chosen this as my reality, I would not change it for the world. We never have guarantees in life. It was very heavily suggested that I not take the chance on my son. It was suggested that I terminate my pregnancy and try again. I was initially shown the struggles but not shown the possibilities. And that is what we miss out on too easily in life, the possibilities. We all have possibilities, we just have to make the choice to accept them.
As an Ambassador for the Buddy Cruise and a frequent attendee of the National Down Syndrome Congress Annual Convention, I have had the privilege of meeting many children, young people, and adults with Down Syndrome as well as with other differing abilities. While they are all unique, and all have their own ‘level’ of functioning, they all have talents. Some are gifted speakers, some are actors, some great friends, while others are artists and musicians. Each person is valuable, each person has gifts, each person is important to their family, and each person has a purpose on this earth.
Life is risky and there are no guarantees. We are all one accident or illness away from ourselves having differing abilities. I cannot say it was always easy but I am stronger and better for the challenges we have faced together. I would not trade this journey for anything nor would I change my son. The next time you are tempted to write someone off or dismiss them due to their differences, any differences, I would encourage you to take a moment and reframe the situation.
I wrote this book to encourage parents, kids and anyone who would read it. Each of us has great value and a unique purpose on this planet. I hope this book encourages those who feel different, parents who are facing new challenges, and the children who read the message. The final line of the book says, “I may have had you all planned, but God knew better. He knew exactly what I needed. His factory never makes mistakes.” Whether it is someone you know or yourself, remember, you are enough. You are fearfully and wonderfully made.