The start of a long and fulfilling journey of advocacy, starring my favorite ambassador.

If you are a parent, then you probably know the feeling of looking down at your child and being in complete awe at whatever it is they are doing.

If you’re a softy like me, they could just be doing something simple, like putting a toy away or asking for a snack.  I see that stuff, which seems pretty trivial, and think “oh wow my child is a genius!”

“Look, he’s playing the tambourine.  That is the most talented musician I have ever seen!”

“Oh my gosh look at him stack those blocks.  He’s basically an architect.”

I know that this is not just a special needs parent thing, because I have seen it first hand.  My parents would get a little misty just watching me play the clarinet when I was younger.

At only two years old, Nicholas has blown me away.  His bright and happy spirit has captivated so many people, and those people love to share his story with others.

When Nicholas was born, we were so afraid of what others might think of him.  Can you imagine that after watching his journey so far?  Being afraid of people’s perception of him?

Nicholas has the honor this year of serving as an international ambassador for the Nothing Down Organization, which strives to change the way the world perceives Down Syndrome.  Clearly, I was someone who needed this kind of outreach, because my perception of Down Syndrome when Nicholas received his diagnosis was not good, and I was terrified for his future.

It is still hard to talk about what my husband and I went through in those first months.  Everything we thought we knew about our lives had been flipped upside down, and we weren’t sure where to look for advice.  We weren’t even sure if we wanted to seek it out!

That is why finding Nothing Down on Instagram was such a blessing.

My favorite project that Nothing Down participates in is their baskets of hope that they send to new and expectant mothers.  If I had received one of those, I may have had a different experience. I am glad that the fundraising we do this year will reach other families in that way.  This is just an example of the many ways that they reach out to families for support.

Now, I feel so blessed to be on this journey with Nicholas.  As we shared the news on Social Media about his ambassadorship, the story spread like wildfire.

I think it is safe to say that the public has a very positive perception of Nicholas.

I want parents to know that it is okay to be worried when you first get the news, but as you get to know your child, you will see that he or she has so much to offer this world.  I am hoping that Nicholas’ story, as well as the stories of the other ambassadors this year, will inspire people to see Down Syndrome differently.

My worries about Nicholas’ future have evaporated into thin air.  I have watched him work so hard to succeed in just the two and a half years he has been here, and I know that there is nothing that he can’t do.

March is a big month for us, because it is the month of World Down Syndrome Day.  There are so many topics I want to explore next month, and many fundraising opportunities to follow.  So, if you are local and wish to participate, make sure you follow us so that you can get notified!

Thank you so much to everyone who has followed his story to this point.  It has been such a pleasure sharing this bit of our lives with you, and I can’t wait to show you all that Nicholas does in the future.

Also, a special thanks to Amanda Chin of WSTM for coming to our house to cover Nicholas’ story, and being sweet enough to play with Nicholas and make him feel comfortable before the camera came out!

To see some of the other inspiring stories from the ambassadors chosen by Nothing Down this year, head to their facebook page: https://www.facebook.com/nothingdown/

http://www.nothingdown.org

Preview to Nicholas’ News Segment

The piece will air tonight on Local Syracuse stations so stay tuned!

 

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I was shocked as a new mom to find out that my son has Down Syndrome. I had no idea that my life would be changed for the better! Now, I am using my passion for writing to spread awareness and acceptance for people with Down syndrome.

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