And for the most part, those people don't hurt me.
Usually, I feel sorry for them. When they choose to broadcast ignorant, hateful, disrespectful words, to try to bring others down to make themselves feel better, I feel pity.
Those people are on the outside. They don't understand acceptance and love, and they probably never will.
I expect ignorance from people who don't know anyone with Down syndrome. I was there. Before Claire my assumptions of what life with Down syndrome would be like were inaccurate, outdated and just plain wrong.
I expect more from people who are part of our lives though. When someone actually KNOWS Claire, has seen this smile and the joy she radiates, and all they can say is "her life is going to be so hard...", that's when I feel like I've failed.
Seriously? That's all you've got to say? Nothing about her hard work, perseverance, or determination?
Nothing about her great smile and contagious laugh, or about what a little charmer she is? Or about how easy going she is, or even the stereotypical comment about how happy she is all the time? (if you'd seen any of her recent temper tantrums, this comment wouldn't pass your lips)
Nothing about how great it is to slow down and really celebrate the accomplishments and milestones that usually fly by so fast?
Nothing??
So, to the person who made the comment about Claire's hard life....Open your eyes. There no reason to think Claire's life is going to be any harder than yours. Her extra chromosome doesn't mean hardship and despair, any more than your typical chromosomes mean things will always be rosy for you. You have an amazing PERSON in your life will be able to teach you so much, if you give her the chance.
****
I know this post is preaching to the choir, but since I don't know which of my acquaintances (or friends?) made the comment, this is where I get this off my chest....
So well said! I know exactly what you mean by the comments said and how I feel that they have no idea the true joy of a child blessed with an extra chromosome!
ReplyDeleteBrenda
I guess I missed those comments too because I never heard about them. But I've seen a lot of political comments lately about abortion and specifically Sarah Palin and Down syndrome. And I think you already know this but got into it with a "friend" over a joke and it didn't end well. My feelings are these: The commentators have never had contact with anyone with Ds because if they did they wouldn't feel the way they do. My son might have some medical issues that cause me some stress but beyond that he has been nothing short of amazing. I cannot imagine my life without him, he has done so much for me and he's only two! I am looking forward to watching him grow and change people around him. His life is worth something and he will contribute to society. It's all going to be great, I can't wait.
ReplyDeleteAnd you are exactly right, no one knows whose life is going to be easy and whose will be hard. It's ridiculous to say something like that based on a set of chromosomes.
I guess I'm still a little fired up ;)
Children with down syndrome are truly some of Gods greatest gifts!
ReplyDeleteyou say it so well!! it does hurt more when a person comments something or says a comment and they know our children..or our child is sitting right in front of them...someone said the "r" word the other day in front of my Maddie...I froze again..but I did not get upset...I got sad and felt pity for them..they will never know the joy of our kids...and will never know how wonderful they will be...they are to shallow in there existence...to see that the world is a better place because of our kiddos we helped create and mold...I hope this person begins to understand that there pity is really for themselves...and as for the daytime talk shows..I saw this and thought maybe I would record it...but then thought why? why let others get to me...when they are just ignorant...remember you can not "fix" stupid...smiles
ReplyDeleteWell said Melissa! I am going to agree with what Erin said above.
ReplyDeleteamen and amen. perfectly said.
ReplyDeleteGreat post! You said it perfectly and I agree with you 100%!
ReplyDelete(Thanks for checking out my blog!)
What a good post. I too can over look things people say in ignorance but it saddens me that they don't or won't take the time to be educated. Talking to people who do know what these children are capable of accomplishing and as I see what Tily has and is trying to accomplish and how hard she works at it I only hope that I can be as determined in all I do. I feel sorry that others can't or don't see past the diagnosis and see the person.
ReplyDeleteWow, what a great post. I think that sometimes even people who know our children with DS can't really see what's in front of them, they are the ones that see the "glass half-empty". Claire is so beautiful and I love her smile and she has a great momma who loves her very much, I don't know what seems so "hard" about her life to this person!
ReplyDeleteI will admit to being one of the idiots who used to use that horrible "R" word when I was young. Ugh... when I think about that... I didn't use it toward anyone specifically, but that really doesn't matter. Now I am one of the one who calls a person on it if I hear it, I don't care what context they are using. It is an ugly, awful word. I have two special needs boys. I would not trade either of them for the world (although, don't tell my 16 y/o that because he might try my word! hehe). My littlest guy has Ds. I have known many people with Ds, and when I think about them, I can't think of one bad thing about them. Do they struggle, OH YEAH... do they have a hard time with some things, OH YEAH... but you know what? I think the way that people with Ds look at the world, the good or the bad, is something that we could all take note of, and learn from. I know many people whose life can be described as "hard" but I don't think Claire (or my little guy either) has anything to worry about. :)
ReplyDeleteI couldn't agree more. It's one thing when someone who doesn't know my brother says something, but when it's a family member or friend...it just breaks my heart.
ReplyDeleteMy brothers life (He's 36, has DS) has been a lot of things. He's had his bad (heart surgery, deaths of loved ones) and his good (being adopted by my father, Chuch E Cheese, George Jones, pizza Friday, movies, bowling, friends, dances).
As you can see - it's been a lot more good. I will say his life is much simpler - and for that I think he and those who know him are truly blessed.
He finds joy in the "sushine" (sunshine)and a "black cookie" (oreo). He delights in simpe routine (pizza Friday) and he thrives in spending time with his friends going to the the "feater" (theatre) or "baw ball" (bowling ball).
People who can't see the blessing and joy of that...well...pray for them.
Sorry for the long comment...can you tell I LOVE my brother? :)
Brooke Annessa
www.theannessafamily.blogspot.com
I am so great at ignoring it too! But when its someone you know, it is really hard to ignore. It hurts! You want people to take her for a day, and then bring her back and tell you anything that is going to be harder for her than any other child.
ReplyDeletePlus, she is so much cuter than a lot of kids! He he!
I've been lucky to only have one dumb comment, and that was when Jax was a baby. A teenage girl said "Oh, I'm so sorry" when I told her Jax had DS. I told her not to be sorry, look at him, he couldn't be more beautiful!
See I still struggle to let those comments from strangers NOT upset me. I am just not strong enough yet to let those things not hurt me. I wish I was. I am trying hard to just ignore certain things, but its difficult. And you are right it does hurt more when its someone who KNOWS your child!! And I hate pity more than anything...No one needs to feel sorry for me or Russell.
ReplyDeleteGreat post!