Thursday, March 19, 2015


It's time for World Down Syndrome Day again. This is our fourth year celebrating and its marking up to be the best yet due to a very cool Random Acts of Kindness campaign. Why 3/21? Down syndrome is a genetic condition in which the cells contain three copies of the twenty-first chromosome. So, each year on 3/21, we celebrate everything that Down syndrome has given us. Feel free to check out our past celebrations in 20122013 & 2014

When I first watched The Incredibles, the villain's name, Syndrome, stuck with me. Syndromes, or differences,  are often met with such a negative outlook. When the genetic counselor called to tell us "I'm sorry, your baby has Down syndrome," her voice was heavy and she sounded like she was handing us a death sentence. In hindsight, we've learned this syndrome isn't something we should fear. It's not a villain out to ruin our lives. It's an opportunity to make our lives better- an opportunity to see our son as a child first and not a syndrome, to meet good people and to choose to see the good in people at the same time. Down syndrome is an opportunity to choose to see happiness and love in the world through Porter's eyes. This kid is not someone you should fear...he's someone you should try to better understand and try to emulate, for he truly brings out the best in people. 

When I watch Porter, I'm amazed at what he can do. But I'm also amazed when people don't expect much from him because of his syndrome or because of his gross motor delays. I want to shout and yell "he's capable!" as loud as I can. I want to tell people "expect just as much from him...maybe even more." I want to brag about everything he knows. I want them to see him for what he is- loving, funny, smart, brave, shy, cautious, attentive. I want them to understand that his almond shaped eyes have a story to tell and while he doesn't always use his voice in a big group, once you get him going, he'll tell you that story. He has favorites- he loves ice cream and blueberries, the song Sugar by Maroon 5 and Shake it Off by Taylor Swift. He loves his speech therapist Miss Lori and his grandparents and cousins. He adores his sister. He has best friends- Lexi, Liam and Alex, and he asks for them all the time. He likes to play games like Pop Up Pirate and he loves Sesame Street...especially Elmo and Cookie. He's so much like other three year olds. He gets frustrated when he can't do things and he is motivated by watching others do things. He thrives on rules, structure and schedule. He knows what's going on and knows how to work a room. Expect much from him and he'll give you much in return. But, expect little from him and he won't show you much. He knows that he can use his smile to get away with things with some people, and he does. He gets it!   
Penny is really trying to figure out what Down syndrome means. Lately, there's been less "when I was a baby and I had therapy" or "do I have Down syndrome too?" and more "is it because he has Down syndrome?" chats in her bed at night. 
  • Why does Stella's one year old sister walk, but Porter didn't until he was almost three? Is it because he has Down syndrome? Yes. 
  • Why is Porter crying at bed time? Is it because he has Down syndrome? No! It's because moving to a big boy bed is a big change. And then we looked at photos of her asleep by the gate in her door when she moved to a big kid bed :) 
  • Is Porter really the only one at our school who has Down syndrome? Yes
  • Am I part of the Down syndrome group too? are a very important part! Because you know that you've got friends in the group both with and without Down syndrome. You know your friend Brianna has Down syndrome, right? No way mom, I didn't know that!
Penny's learned something that it takes most of us a lifetime to learn. She's learned to see past the differences and to see her brother. She teaches us when to be compassionate and when to be stern. While she may notice the differences, like a cool set of wheels that helps someone move, I think she really does see a person first. So please, try to look past the differences that you may see when you look at Porter and see a boy...a boy who shows us a whole lot of love!
If you'd like to learn more about Down syndrome, visit NDSS. If you'd like to learn more about about the 3/21 Random Acts of Kindness Project, visit World Down syndrome Day. And, if you'd like to learn more about an amazing project from the Down Syndrome Diagnosis Network, check out A Day in the Life with Down syndrome. Sending love to all of our chromosomally enhanced friends today, and always!

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