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My Not-So-Great Story: A Personal Experience with the NDSS & The Buddy Walk. Guest Post by Stacey Calcano

My Not-So-Great Story: A Personal Experience with the NDSS & The Buddy Walk. Guest Post by Stacey Calcano

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When we first received our son’s Down syndrome diagnosis in August of 2011, we were devastated, terrified and lost.

During a routine anatomy scan, the technician noticed an abnormality in our son’s heart, so we were sent for an immediate fetal echo. It was then confirmed that he had two separate congenital heart defects (ASD & VSD).  We were encouraged by the pediatric cardiologist to have an amnio if we wanted to know for sure if our son had Down syndrome. Down syndrome, I thought? How? All of my blood tests, nuchal screening, sonograms had been well within the ‘normal’ range. It was impossible? Wasn’t it? We decided to have the amnio. Within a 24-hour period, we learned that we would be having a son to add to our family full of daughters, that he would need open heart surgery sometime within his first six-months of life and that he would be born with Down syndrome.

To say that it was a lot to process is an understatement. I quickly realized that we had a huge learning curve to overcome before the time came to meet our little guy. I wasn’t sure where to start, but I knew that random internet searches would likely cause more worry than comfort, so I started with the only organization I had, sort of, remembered hearing about, the NDSS.

The first thing I saw on their website was this statement:
 

The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.

 
I thought, “Wow, an entire organization committed to the VALUE, ACCEPTANCE and INCLUSION of people just like our boy. Maybe this won’t be so hard after all.” I then clicked through the New & Expectant Parents section, Local Support, and Resource section. The knot in my stomach began to give a bit and I researched on. Over the course of the next 20 weeks, I learned that Down syndrome did not mean the end of our familial happiness, that it didn’t mean our son would remain a ‘forever child.’ The possibilities were endless and I became determined to give our son the same opportunities that we have strived to give our other children…the opportunity to reach his FULL potential.
 
The months following his birth were spent in and out of the hospital, fighting to keep him healthy, fighting to get him to gain weight in order to endure his impending surgery. Those seven weeks felt like years, both wanting his surgery to be over and wishing it wasn’t necessary in the first place.  Carter had his open heart surgery at the impossibly young age of 7 weeks and a week later was at home and thriving. It was time to start our life with our new bundle.
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We became very involved in our local Ds community and starting revving up the troops for our first Buddy Walk. The Buddy Walk would be our first experience as part of a much larger community, our first opportunity to surround ourselves with people who understood what a gift we had been given, and our first opportunity to see what life ‘may’ look like years down the road. We were pumped. I recruited a team of friends and family to walk with us and I set my mind to fundraising. The response from everyone we knew was overwhelming.  It touched us all to know that so many people were rooting for us, for Carter. We were “Carter’s Crusaders.” The money kept pouring in and, before I knew it, it seemed that we had raised more money than I ever thought possible. In fact, we learned we’d raised so much money that there would be a gold star with my name on it the day of the event. I thought, “A gold star! I got a gold star for Carter!” The day was magical, amazing, and everything I had hoped it would be.
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Sylvia

Saturday 1st of June 2013

What a very strange response from the NDSS. It doesn't make sense at all. I can understand how you feel and why you aren't participating this year. It's too bad for them because it sounds like you were a big financial contributor! Maybe you can start your own foundation!

Shannon

Friday 31st of May 2013

Great post. Why aren't these organizations up in arms? My daughter has DS - what if the same thing happens to her one day? I would expect all these organizations to be fighting along with me to find out what really happened and make sure it didn't happen again. Thanks for sharing - I'm going to be making some calls & sending some emails tomorrow!

Stacey Calcano

Monday 3rd of June 2013

Yes, Shannon....why aren't they up in arms...

Meriah

Friday 31st of May 2013

thanks, Shannon! That's exactly how I feel about it all too.

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