“Where there is love, there is hope”
We understand first hand the uncertainty and concerns that can come with a diagnosis of Down syndrome.
For us, that diagnosis came one sunny 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 those words 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 only a slip of paper. There was an eerie silence that filled the air as she made her way over to the table 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 our life, for her 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, over 3 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 we left that appointment with nothing more than shattered dreams and that slip of paper with a diagnosis.
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. From the very first moment I held her, I knew none of the worries and fears I had mattered and neither did Down syndrome. She was here and I loved her. That's something no diagnosis would ever change. Soon after Kenzie was born, 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 so I created our own nonprofit organization, Kenzie's Chromosome Crusaders. I began by putting information packets together that include our story along with brochures from some of the leading national Down syndrome organizations. These packets are delivered to our local OB-GYN offices for expecting parents who have received a prenatal diagnosis.
I soon felt the need to help even more people and I offered newborn gift baskets to our local hospitals. Each basket contains one of the information packets as well as other items to encourage and support parents on their journey with Down syndrome. Our information packets and baskets are provided in both English and Spanish.
With help from donations we are able to continue our mission here at Kenzie's Chromosome Crusaders and provide support to even more families. One day, we hope to expand and reach families outside of our own local community.
My biggest wish is that we can inspire others as much as Kenzie inspires us. And for others to know that no matter where their journey takes them……
“Life doesn't have to be perfect to be wonderful” ~ Annette Funicello