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.
When I see Sean, I see a boy. I don't see anything but a blond-haired, sweet-smiled little boy. I'd like to think I'm "normal" and those people with hateful words are the rare ones.
ReplyDeleteDeborah, I can only imagine how much your heart aches at the fears of Sean's future and what is outside your door and control. You're not alone. Someday you'll look back at this time of personal struggle & fear and see only one set of footsteps. You're being carried right now, my friend.
I can't help but think of the significance of Sean being a middle child. He's sandwiched... between two siblings who will protect him, provide for him and take care of him now and when you're no longer able to. He was born sandwiched between two parents who desired & prayed for him. He'll spend his life being in the center of a family that desires & prays for him. You've been given a gift in Sean and in return, you're giving the world around you (Aidan and Ella mostly!) a gift of empathy, compassion and strength.
God bless you. Tracy
This is Joyce, Thank you so much for writing exactly what I feel too right now, but just could not seem to put into words tonight.
ReplyDeleteTracy, you made me cry! Sweet friend, thank you for seeing the good.
ReplyDeleteJoyce, I've been trying so hard to follow your lead and be strong. Your positive attitude inspires me!
Hugs.
ReplyDeleteI've been blessed in my life by having the opportunity to work with people with developmental disabilities. I can only get an inkling of your pain. I think how much it hurts to hear people saying cruel, hurtful things about "those retarded people", and I want to scream, "You're talking about people I love!" How much harder when it's your beloved child!
Please know that they're speaking out of pure ignorance. They don't know what they're missing out on by refusing to open their hearts to people who look different.
Have a blessed day. I just love reading all about Sean and his siblings!
ReplyDeleteI read your post yesterday and didn't know what to write. You have beautifully expressed what I feel too right now. Hope you are having a wonderful World Down syndrome day.
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ReplyDeleteI'm so glad you liked it. Sean's image may appear sooner or later than this morning as I have added several more kiddos. :)
ReplyDeleteHave a wonderful afternoon.
Rebecca
Thanks everyone, we've been having a really wonderful day together. :)
ReplyDeleteRebecca, thanks for the heads up, I adjusted the time.
It is so hard to hear about all of the horrible things people do or say. Sean is so blessed to have such an amazing family who loves him so much! I hope you were able to enjoy your day yesterday. I love the montage - it's just a perfect way to celebrate some of the most amazing people in the world!
ReplyDeleteYour post rang true, and is sad, made me cry. :(
ReplyDeleteBut, I try to remember people are just ignorant, I was ignorant of a lot of everything before having Johnny.
I feel like we can go out and educate, change one view at a time, open eyes one at a time, until people realize what they are saying and doing and then can turn around and teach others as well. One step at a time.
I'm so glad for the chance to teach Johnny's siblings so early on about acceptance and love and what is really important. Without having Johnny, they might have grown up without thinking about things, much like so many of the people you linked just are simply not thinking. We'll continue to spread the love, to open eyes, to show the world- and our children will too. :)