A Decade with Down syndrome

Happy World Down Syndrome Day!!! A decade in and what can I say about Down syndrome now?
It's just one thing that makes Benny unique, and sometimes it makes our lives harder, but not for a moment does it make life not worth living.
And being a part of the Down syndrome community has been wonderful! Getting the diagnosis prenatally was terrifying, but the community helped us to see that our unborn child's future could still be bright, and that has turned out to be truer than we could have ever imagined.
Benny is a light in the world. He has changed my perspective on what qualities bring value to our society. Through watching him grow, and the delight that I feel when he achieves his goals through hard work and perseverance, I have been able to let go of my misguided notions that if something is difficult for me that I'm not good at it and I should give up. I see him try harder, so I try harder.
Benny has no artifice, he likes what he likes and he is clear about what he doesn't. Sometimes when I'm with Benny I feel like I'm walking the earth holding hands with an angel. And I don't mean that in a patronizing way, like the stereotype of a child with Down syndrome who is always happy and smiling, I mean that there is a purity in all of my interactions with Benny, that he has no pretense, he is always purely in the moment and completely genuine in how he expresses himself. I never have to wonder if he's hiding some part of himself from me, if he's acting one way when he feels another. Which isn't to say that he can't be manipulative. He is very crafty at getting what he wants, and we have to warn people not to let him fool you into thinking he's not competent or capable. He will happily use his cuteness and people's low estimation of his abilities to have everyone working around him while he makes as little effort as possible. But he also takes pride when the expectations are high and then he will work hard to meet them, and it is unbelievably exciting to watch.
​I'm not sure what the next decade will bring, but as of today I can say that I am happy to celebrate World Down Syndrome Day! Congratulations to all the other amazing families out there lucky enough to be blessed with a child with Down syndrome! And thank you to everyone out there who has been so supportive in my journey with Benny. Today is your day to celebrate with me, so wear some funky socks and educate people you meet when they make comments or spread misconceptions about people with intellectual disabilities. Happy world Down syndrome day!

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