It's March 21st again and that means it's time to recognize World Down Syndrome Day. When this annual event was founded a few years ago, it was a day I looked forward to with a sense of pride and happiness. I thought, "How cool, March 21st- what great day to celebrate and build awareness for our loved ones with Down syndrome!" The date was chosen to signify the uniqueness of Down syndrome in the triplication (trisomy) of the 21st chromosome, hence 3rd month of the year and 21st day of the month. I had fun finding a special way to mark the occasion.
Last year, I was a little less enthusiastic about it because I was feeling disappointed in society at the time. President Obama had made his blunder about bowling and the Special Olympics. Tropic Thunder had been given Oscar nominations. I felt like society had a lot of learning to do about respecting the differently-abled and I wasn't sure anything I did could make a difference.
To be honest, this year I am feeling even more disappointed in society. In fact, I feel downright RUN OVER by the world outside of my home. I feel like my child is so raw, naked and vulnerable to mean spirited people who find joy in the verbal and physical cruelty they inflict on people with Down syndrome. It's completely affected my reaction to how I communicate online. I haven't wanted to blog much, I've considered changing my blog from public to private, I restricted access to my Facebook photos, I'm even more sensitive to people misusing the R-word.
Why, people? Why does this have to happen? Why is it so amusing to you to make a face and say "Look at me," I have Down syndrome. Yeah, that's funny.
I'm angry. I'm angry that I feel this way. I'm angry that attitudes like that put my child's life and well-being at risk. I'm angry that more people are not angry that insensitive people like this are hurting innocent people like my son. I'm angry that I can't share the ups & downs of his life without worrying that some jerk is going to take my photos and use them to laugh at my son.
And it makes me sad and scared, too. I'm scared to death to have him in school, unable to defend himself. Unable to understand when someone is being mean to him. Unable to tell me when he's been hurt by others.
I'm doing all I can to help him. To protect him. To educate anyone who will listen to me. I'm told "it's too much, Deborah" "You're taking it too seriously, Deborah." "She didn't mean it that way." "Don't let it get to you! If you do, that means the bullies win."
I don't know what the answer is. I don't know how to make a difference, how to change the world. I don't know if I still believe I can.
All I know is that I hurt where I only want to love. I want to push that anger and those fears away and wrap myself and my family up in a cozy blanket of security and comfort.
I just want us to live together, with respect, understanding, empathy, and peace. Give me this one day to believe that it can happen. Can we all try to 'Aim High Enough' today?
*Edited this morning, to share a beautiful message created by an advocate I adore. This brought tears to my eyes this morning because the music says it all. Look for our smiling boy, 2 minutes 4 seconds in.