Why Down Syndrome Made Me Run
By: Derrah Gousie
On March 21, 2015 (World Down Syndrome Day) my husband and I learned that we were pregnant! Looking back now its only fitting that 3.21 would become a significant date in our lives for many reasons. I was just about 9 weeks pregnant when we went for our first ultrasound! As you can imagine we were excited! Our ultrasound appointment showed some extra fluid which we were told posed as a “marker” for Down Syndrome. It was at that point we were encouraged to get the MaterniT21 blood testing done to “rule anything out”. Hearing that there was possibly something “wrong” with the baby right away had us panicked and we were willing to do anything the Doctor recommended. The next morning I showed up for the blood test. It was 10 long days later when I received the call. As I answered the phone I heard the Doctor speak and instantly knew that it wasn’t good. He told me “Your baby tested positive for “Trisomy 21” and then followed it up with something like, “do you plan to keep the baby?” That answer was simple, YES. At no point had not keeping our baby ever been an option. As you can imagine that day, and that call was a difficult one. The world around us seemed to be caving in, and every min of every day was spent thinking about what our future child would be like.
There was a sadness that came over me. The best way I can describe what I was feeling was as if someone I have loved my whole life just died. And the reality was they did. The imaginary life I had pictured in my mind had died and I needed to make peace with that. It was just a few short days later that my husband and I realized that the unknown, our new reality of life could be just as amazing as the imaginary one! It was this new idea of what my life was going to be like that really got me RUNNING.
I ran towards every success story I could find of people with Down Syndrome leading amazing fulfilling lives. I ran towards education, learning how to help my new baby grow healthy and strong with the support of the Kennedy Donovan Center and Early Education. I ran towards advocacy groups like my local Massachusetts Down Syndrome Congress, and Nationally the National Down Syndrome Society. I literally and figuratively RAN.
Early on my husband and I recognized the amount of work our daughter Cecelia would put in to do things that other babies would naturally learn to do on their own. We would consistently challenge her to do more exercises to achieve even the smallest of milestones. Holding up her head, sitting up unassisted, crawling, pulling to stand, eating, and eventually walking and now RUNNING and jumping all took an immense amount of hard work and commitment.
We would often talk at night staring at our beautiful little girl and say, “Wow, she works so hard” and even when she protested, we would push her further because we knew those were the breakthrough moments. It was with recognizing that, that we decided to honor her hard work and challenges through doing something my husband and I had never done before: RUN a marathon.
My husband did it first, he partnered with the MDSC and ran his first ever marathon BOSTON! The following year I laced up my shoes and my husband and I ran it together. Since then we have continued to run, always running towards raising awareness for Down Syndrome. I had the great pleasure of running with Team NDSS in the Run for 3.21. I was part of a team of 21 people that ran over 260 Miles from Washington D.C. to New York City ending on the steps of the United Nations Building on World Down Syndrome Day. It took us 52 hours and I ran over 35 miles.
Running has never come easy for me, every time I lace up my shoes and take on a new challenge I make the commitment to myself to persevere and try my best, the same thing we ask of our daughter!
This journey is on going and we are so unbelievably lucky to have the most incredible little girl. She challenges us to be better, work harder, and always keep running towards letting the world know what she is capable of. Our family motto is NO LIMITS and we are confident the more you know about down syndrome the more you will see that is exactly true.
With Love and No Limits,
Derrah Gousie
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