Why Down Syndrome Is Like the World’s Best Haunted House
I’m writing you a letter, to say thank you.
I want to thank you, first of all, for giving me the scare of my life that turned out to be not so scary after all. When I found out you were going to be a permanent part of our lives, I was terrified. However, you’re like the best haunted house I’ve ever been to. You scared the crap out of me, made me question every action I’d ever taken, and then came out from behind the scary black wall to give me a hug and say, “I was just messing with you. Don’t be scared!” You were like the terrifying horror flick that had a surprising twist at the end and turned into the feel-good hit of the summer. I love a good scare, so for that, I say thank you.
Thank you for the awareness and clarity you’ve brought into my soul. Down syndrome, before you were in my life I didn’t know what it truly meant to be aware. It’s true, like so many say, I never did anything intentionally to hurt others but hurt others I did. I used words and phrases that made others feel “less than” without realizing I was doing it. I judged others and situations without truly understanding what it was they were going through. Thank you for opening up my mind, my heart and my soul so I could begin seeing myself and others with a new truth. Thank you for leading me down a path to a person who, today, is aware of the words she uses, the path of the people she sees and the beauty in the world around her. I’m still not perfect, but with you by my side I know I’ll continue to walk this path, becoming more aware every single day.
Thank you, Down syndrome, for my friends. Because of you I’ve met so many amazing new people! I’ve met mamas and daddies from all over the world whose lives you’ve blessed, and they’re an inspiration. Thank you for leading me to this community of hope and love that’s been my rock through every hurdle my son, Benny, and I encounter. I can’t imagine going through life and not knowing about all the wonderful people and the wonderful things they do to educate the world about you.
Thank you for making me smarter. Thank you for making me super diligent — something I never was before — about what I cook, what products I buy, how much exercise we get. I’m better at paying attention to what goes on at the doctor, understanding medical terminology and knowing warning signs of thyroid issues. I’m smarter, which makes me a better mama, and I thank you.
Thank you, most of all, for every single way in which you make my Benjamin different. Thank you for his beautiful eyes, his super-flexibility and his cute little simian crease. Thank you for giving me the opportunity –that most parents pray for — to keep my baby a baby just a little bit longer than most. Thank you for the extended nursing time I probably wouldn’t have had without you. Thank you for the slow progression into knowing what it’s like to have a baby “get into things” and allowing me to just enjoy sitting and playing with him on the floor. Thank you for being a part of my Benny because he’s just perfect, and without you, he wouldn’t be him.
Follow this journey on Ben Through It All.
The Mighty is asking its readers the following: If you could write a letter to the disability or disease you (or a loved one) face, what would you say to it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio.