Where were you that day? That day of your child’s diagnosis of Down syndrome. That day that has forever changed your life and changed your perspective.
I know most of you, including myself, have that day etched in your mind and you will never forget. For me it was a sunny day one November afternoon in 2013. We went in for a routine check up around week twelve of the pregnancy with our third child. Two weeks prior, they had done a genetic blood screening test due to my age. I told myself I wanted that test because I wanted to be prepared if something were to show up. The test could not only detect genetic defects but it could also determine the gender. That meant I could shop even sooner for pink or for blue! But I was in no way prepared to hear the words of our diagnosis on that day.
As I sat quietly on the exam table, smiling with excitement, the only test results I thought about were whether we were having a boy or a girl. When the doctor entered the room she carried a slip of paper. As she made her way over to the table, an eerie silence filled the air and I sensed that something was wrong. Then the words of the diagnosis came, “We have the results of your screening back. You’re having a little girl. But I’m sorry to tell you, the test shows that your baby will most likely be born with Down syndrome.” In that moment, all the excitement and the hopes and dreams I’d had for that baby were gone. Instead they were replaced with fear, devastation and heartbreak. All I could do was cry and wonder just what it would mean for her life, for our life.
After explaining our options, the doctor left the room to let us process what we’d just heard. That’s when my mind went to a dark, lonely place and the words I said that day still haunt me even now, years later.
“I don’t know if I want a baby that has something wrong with it.”
I had no real understanding of what Down syndrome even was, only the typical stereotypes that most people seem to have. I had no idea where to look for help and I left that appointment with nothing more than shattered dreams and that slip of paper with a diagnosis. My husband however, was steadfast in his belief that our family would be fine even with my uncertainty.
Not knowing where to begin, we searched for answers over the next twenty-six weeks. I spent countless hours on Google looking for information to ease my mind. Fear of the unknown can get the best of you and make you think the worst. But as I searched, I managed to find hope through inspiring stories and through top national Down syndrome organizations that provide families with up-to-date, accurate information, support and resources.
In May 2014, our beautiful baby girl, Kenzie entered the world. Soon after her birth, I began to have feelings of guilt over my reaction to our diagnosis. I still ask myself, how could I have said that? What if the next mom to receive a diagnosis feels that way? Does she know what Down syndrome is? Will she know where to find support? Will she search for answers or only be left with no hope for her child’s future and a slip of paper with a diagnosis?
I felt that families needed to leave an appointment after a diagnosis with something more. Since then it has become my mission to help others gain a better understanding of Down syndrome and help families find connections for support. It was then, that we created our own non-profit organization, Kenzie’s Chromosome Crusaders and we began putting information packets together. These packets include our story along with brochures from some of the top-leading Down syndrome organizations. They are delivered to OB-GYN offices for expecting parents who have received a prenatal diagnosis as well as by mail by request.
We soon felt the need to help even more people and we offered newborn gift bags to our local hospitals. Each bag contains one of the information packets as well as other items to encourage and support parents on their journey with Down syndrome and both are available in English and Spanish.
We love being able to provide this resource to families and we are so grateful that we are making a difference for new families!
My biggest wish is that we can inspire others as much as our daughter inspires us and for others to know that no matter where their journey takes them……their baby is a beautiful gift and that is why we love every chromosome!
“Life doesn’t have to be perfect to be wonderful” ~ Annette Funicello