I hadn't planned on going to church this morning. Darren and Claire were down at the farm, and Bridget and I were slow to get moving. Early service was long over before church entered my mind. When I realized we could still make it to late service, I hurriedly dressed us both and headed out the door.
When we walked in, I was greeted with the usual questions about how Bridget was doing, and then was told thank God for healthy babies. I didn't say anything, just gave a tight smile and sat down. As much as I hate these kind of comments, I wasn't going to let it bother me.
We sang some songs, I stepped out to nurse, and sat back down just as the sermon was starting. Bridget was asleep and I knew, for the first time in a while, I could listen without trying to quiet or entertain a child. But sitting here now, the only part of the sermon I heard was
crippled....pity
crippled....pity
crippled....pity
No, not a fair representation of Pastor's sermon, but it's what I heard.
Am I the only one that heard it that way? Most likely.
I won't address the sermon. The issue there was primarily mine, not Pastor's, since I started out in a crappy mood. But I want to address the thank God for healthy babies comment. It's not the first time I've heard it, and I know it won't be the last.
I believe that the person who made the comment truly meant thank God for healthy babies, even though what I heard was thank God you didn't have another disabled/damaged/not quite perfect baby like Claire.
I want people to realize the impact their words have. Even words with good intentions.
I hate having these conversations. I hate trying to find the right words to explain how I feel, all the while knowing the response, just like with the r word, is probably going to be I didn't mean it that way. But in a case like this, where the comment really wasn't meant like that, it makes it even harder. I want to open eyes, make changes where I can, but not to be the crazy lady who thinks everyone is attacking their child.
Before Claire I'm sure I made similar comments. I know I used the r word, and nobody ever said anything.
If nothing gets said, nothing changes.
****
While we are on the subject of things I wish people wouldn't say....
Claire is not a gift from God/a special angel/or any other platitude said to try and make me feel better that she has Down syndrome
We are not special parents
She is not always happy
Please don't make sweeping statements about people with Down syndrome, just as you wouldn't about any other group. When you say those people...it isn't a good start to the conversation.
Unless you know me know well, please don't ask me question that you wouldn't ask of any other mother. Please don't ask someone if their one week old baby will be good at x...or if she will be able to do y. Just like with any other baby, who knows. I'd also rather you didn't ask how my child is developing mentally.
Please try and remember to put Claire first. She is a child, not a diagnosis.
A child with Down syndrome, not a Down syndrome kid. And definitely not a Downs.
I used to get those comments. Angela was our 5th child and when I heard it I responded with, 'I know! Glad I have 5 of them!" Just because Angela has DS doesn't mean she's unhealthy. It means she's different, but only a tiny bit. I have a whole load of scripted responses floating around in my head for just those times when I'm in the mood to say something.
ReplyDeleteI posted about this recently and got accused of being over sensitive. I agree with you. It's hard to put words to it- but it's a very real problem, and if we don't say something who will?
ReplyDeleteAh, Brad and I were just talking about stuff like this, this morning...I know comments like this in the beginning use to make me want to cry...Then I toughened up a bit and they would make me angry...Now...now I just want to educate and make people aware that they do not need to feel sorry for us or our son...He is beautiful and perfect.
ReplyDeleteI'm right there with you. Jesenia was perfectly healthy when she was born. She was put on oxygen for about a month because she was 5 weeks early and her PDA hadn't closed all the way...not because she had Down syndrome. She has had an occational ear infection but so have the boys. Julian was the one that had heart surgery and he had the regular old 46 chromosomes.
ReplyDeleteI also don't feel that "god" gave me Jesenia. She has an extra copy of a chromosome. Big whoop. I would like somebody to try and tell her that she's different and that she's not supposed to be doing the stuff that she's doing.
I'm pretty sure that Jesenia and Claire and all the other kids with Down syndrome are here to help change people's minds. I for one had no clue what Down syndrome was until I had Jesenia and she sure has educated me. :)
Can't wait to get together later in the summer!
Even with Samantha's diagnosis and a heart condition requiring surgery at 4 months old, I always regarded her as "healthy." I think the term is subjective for us, but certainly has that not-so-nice, veiled meaning when spoken by others. You put this beautifully, Melissa. I agree 100%.
ReplyDeleteAmen, Sister! Nothing more needs to be said!!
ReplyDeletePS. *love* that previous post too with her pj's unzipped. Too darn cute.
Thanks for leaving a comment on my blog! I hadn't seen this, and I'm glad I'm not the only person who sees these words as a negative statement and that others get what I'm saying!
ReplyDeleteOh you know what - I didn't read your blog the day you posted it, but Erin W posted a link on facebook & I saw the title & thought I'm going to blog that too b/c it's been rolling around in my head for far too long - you inspired me ;)
ReplyDeleteI love this.
ReplyDelete