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 this test because I wanted to be prepared if something were to show up. The test could not only detect any 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 a slip of paper along with a strange demeanor. An eerie silence 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 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 26 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 entered the world and soon after, 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.
In my search for information to provide to others, I found DSDN. After learning about their mission to help support families after a diagnosis of Down syndrome, I requested some of their informational brochures to read for myself. Once I received them, I knew right away that they were exactly who I needed to help me support other families right here locally in my community.
It was then, that I created our own nonprofit, Kenzie's Chromosome Crusaders and began putting information packets together that include our story along with brochures from DSDN and other leading 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.
Thanks to DSDN, I am able to provide information packets in both English and Spanish. I love being able to provide this resource to families and am so grateful that DSDN has helped me make this idea a reality!
DSDN is a truly remarkable organization that is working hard everyday to provide the support that families need most at the time of a diagnosis. What an honor it is to work alongside them to provide hope and understanding and promote awareness and advocacy for Down syndrome!
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 your journey takes you……
“Life doesn't have to be perfect to be wonderful” ~ Annette Funicello
DSDN has over 80 local partnerships where we provide our materials and resources to organizations across the country. Did you know you or your local organization can request DSDN brochures and leaflets? DSDN is happy to send you or your local org our materials to distribute to your local OB-GYN, Pediatrician, DDD provider or Therapist’s Office. Go here to request: