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bryantem
04-01-2009, 04:44 PM
Now that RSV season is dwindling, we have been going more places. We went to a birthday party for my friends baby on Friday. Of course someone has to ask, "What's wrong with her?" I wanted so bad to answer, "Nothing, what's wrong with you?" I am tired of people asking what is wrong with her. I don't mind when people ask what "that" is or why does she have the trach. There is nothing wrong with Addisyn. She is perfectly fine and just needed a little extra help to stay in this world once she got her. To me, she is absolutely fine.

The same person kept going outside to light a smoke every 30 minutes with a house-full of mostly toddlers inside. Ugh.
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MERCEDES-BENZ MB100 (http://www.mercedes-wiki.com/wiki/Mercedes-Benz_MB100)

Anderson'sMom
04-01-2009, 05:02 PM
Just as you said, it was a stupid comment!

My personal favorite when my daughter was little and we had not gotten her cleft lip fixed was:

Are you going to fix it?

(in my head screaming!) HELLO, NO! We want her to have trouble eating and have snot drip into her mouth from her nose! HELLO!?!?!?!?!

(reality) But, I was always nice and just said yes, when she is 6 months old.

LKN
04-01-2009, 06:25 PM
The person sounds like a troll. I loathe smokers especially smokers who smoke around children.

People are people, and there is always someone who will make a comment. You know who your daughter is and where she has come from and what she has gone through, and that is all that matters! Enjoy taking her out now that the weather is nice. :hug:

lynn
04-01-2009, 06:38 PM
Joseph goes everywhere with me and I have found : I get this question(whats wrong with him?) alot more from adults that from kids- usually kids just see another child- I get from them "why does he have to be hooked up to that machine? Is he allowed to play? " Most of the time I answer the adult question with- Nothing is wrong with him- while I will answer all of the kids questions with a simple - Oh the machine breathes for him cause his lungs dont work right. Funny how most parents are embarrased by their kids questions about Joseph, but have no problem stating the same questions in a much ruder manner.

kshell
04-01-2009, 07:08 PM
I was at a satellite office of CHOP today for an appointment with Natalie. This mom was open mouth staring at us. I was going to say something until a receptionist came up to me and started asking me trach questions b/c her son was just trached at CHOP a few weeks ago. People are stupid and I sometimes say stupid things back. I have stared right back a few times now to make people uncomfortable.

Karen

ericnrosesmom
04-01-2009, 07:56 PM
I've never gotten anything like this about Eric. Rose, however, is a little small for her age and it seems like 500 million people have asked if she was a preemie.

babybear
04-01-2009, 08:11 PM
I've never gotten anything like this about Eric. Rose, however, is a little small for her age and it seems like 500 million people have asked if she was a preemie.

Ditto! People are constantly asking me if Gabriel was a preemie. I don't mind them asking, but I don't usually feel like launching into an explanation of WHY he's so small, especially with someone I'll probably never see again.

Gretchen(Celia's mom)
04-01-2009, 10:10 PM
I don't want to sound harsh but it is just a part of this life!
We have had so many off handed dumb comments that I don't even pay attention anymore!
I have also gotten so used to Celia the way she is that I catch myself jumping and looking at her real quick thinking is her trach still in,,is her button leaking, WTH are the asking what is wrong with her for LOL Then OH DUH myself because they are asking that because of her trach or weelchair or how she sounds.
Hang in there!!!:hug:

Mom2TwinsPlus1
04-01-2009, 10:29 PM
I get that a lot too about Emma. But I dont let it bother me anymore, I know most people arent meaning "What is wrong with her" to sound negative. They are just curious and they dont really mean she is wrong, they just dont know another more polite sounding way to ask.

I usually tell them she has CP and give them one of her business cards with her blog address on it so they can read more about her.

Sometimes I would rather here the "whats wrong with her" comment than the overly poliete "I am so sorry,but may I please ask what her condition is" yes that sounds polite but people tend to whisper it to me like its some horrible thing she has a trach or something, I am not ashamed of it or embarresed by it, its here to stay so don't whisper and act all shy, just ask about it!

Oh and the worst is when you tell them what is "wrong" and they say "I'm so sorry" Like hello what are you sorry for? Sorry my daughter is here enjoying life instead of being dead?" Its not like CP a trach and vent are a death sentence, she is who she is there is nothing to be sorry over.

mamabear
04-02-2009, 12:43 AM
I really hate that question, too but it is the people that give the pity look - the ones that don't have the guts to say anything at all - that really tick me off! We don't need the pity!

If someone asks me a question they are going to get the answer! :) I really don't mind educating people.

kharmasmama
04-02-2009, 01:30 AM
People can be so stupid sometimes. Kharma goes absolutely everywhere with me (because I'm neurotic and don't trust anyone else with her for more than an hour) and we definitely get some almost hostile looks - especially because I'm also a young mom. People give me looks like I've done something to my baby! It used to bug me when she was younger, but now I'm used to it and I just mess with them. Whenever I catch someone staring at her I stare at them - its hilarious to watch their reactions when they realize what I'm doing. I also get the "she has a trach? thats so sad!" response a lot, to which I always reply "It saved her life, so not really." Its almost like people expect you to be totally depressed all the time just because your kid needs some help breathing.

bryantem
04-02-2009, 01:48 AM
Another thing I get that I can't stand is, "I could never handle that" or the pity I get for having a special needs baby. To me, she is a baby, just like any other baby. She isn't much harder to care for. I am not this spectacular super mom. I am just a mom. And when I hear, "I could never handle that," I can't help but tell people, you do what you have to do. And sometimes you just don't have a choice but to handle it. What am I going to do, give her back? I am sorry I turned this into a rant thread, but I hate the,"I could never handle that," even more.
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Andrew's Mommy
04-02-2009, 02:02 AM
I usually tell people who ask that my son was a chronic smoker they have a good laugh and then leave me alone.

Kinda bad but....:)

Ainsley's Mom
04-02-2009, 04:03 AM
I usually tell people who ask that my son was a chronic smoker they have a good laugh and then leave me alone.

Kinda bad but....:)

:rofl: That's a good one! I might have to borrow it.

The questions, the pity, the stares, the dumb comments. You have to develop a thick skin as best you can but there are just times that it's going to piss you off or make you cry. We all know EXACTLY how you feel. Sometimes it just sucks because you just want to live your life.
It's worse when your kid has more stuff "wrong" with them. People often won't just accept a simple answer in our case and are convinced that Ainsley has a syndrome and I'm just too dumb to remember the name or something. It's annoying. I did resort to the same thing as Lori and made blog cards that I hand out on days I don't feel like talking about it. I recently gave a well-meaning someone the blog address, they read the whole thing, and then still asked me to try to better explain what was "wrong". Like there was something I left out because she just couldn't make sense of it.. :rolleyes: No offense but if Addisyn's only issue is the airway count yourself lucky the comments could be a whole lot worse believe me.

My little figther
04-02-2009, 08:38 AM
Well I think in general (except us) people are uneducated about trachs and they don't associate them with children... sad but it is the reality. Now let's try to be honest with ourselves here would we be on this board or would we search so much over the internet and know as much as we know about children or adults with trachs if somebody in our family did not have one for whatever the reason is? I would say no. It does not mean that there is something wrong with that it just means that the trach is needed to breath. Cedric is not with us for other medical reasons (too long to explain) so my office is plastered with pictures of him and my other grand son Ethan who is a nose breather (I am as equally proud of both of them). The eyes of the people I am working with or visitors are immediately drawn to the pictures of Ethan and I get the ohh he is so cute etc... so far so good but when it comes to Cedric I got the silence and then I am sorry what does he have?. At first I was annoyed by it now I don't care I just say well Cedric thought that being a nose breather was too easy he wanted a challenge.... I get a few puzzled looks with that one... then I give a brief explanation of why he has a trach.

Don't let the stares or the stupid comments bring you down. Let them go and just enjoy your little one and all what life has to offer. Go out do whatever you want. You can't stop some people of being stupid.

This story is not trach related but I remember this - My husband is hypoglycemic (now we know then we didn't) We were in Indianapolis for a car race. At 8:00 am my husband fell on the ground with a seizure some people passing by said look he is already drunk - I was trying to hold my husband - find my cell but I still turned around and said NO YOU IDIOT HE HAS A SEIZURE AND CALL 911 OR MAYBE YOU CAN'T BECAUSE YOU ARE DRUNK. The story ends well but my point is Stupidity can be anywhere for any reason.... so just hang in there.

Michelle

Anderson'sMom
04-02-2009, 11:18 AM
Another thing I get that I can't stand is, "I could never handle that" or the pity I get for having a special needs baby. To me, she is a baby, just like any other baby. She isn't much harder to care for. I am not this spectacular super mom. I am just a mom. And when I hear, "I could never handle that," I can't help but tell people, you do what you have to do. And sometimes you just don't have a choice but to handle it. What am I going to do, give her back? I am sorry I turned this into a rant thread, but I hate the,"I could never handle that," even more.



You know, when we were going through all we have at the worst of it all....I thought I would slap someone if I heard.... "I don't know anyone else who could handle this, but you" ------ I was never one to walk around having a pity party or complain. I would state in a factual manner what was going on and all the people in my office were so dramatic about what I was going through. They would weep at me and look at me with such pity....I HATED IT!! I finally would just say things are okay or things are status quo....just so I would not have to be looked at like they were looking! ARGH!

Alethia
04-02-2009, 02:56 PM
Easy answer for "What's wrong with your son/daughter?" is "What? Apart from being amazingly cute?"

twintotwin
04-02-2009, 05:41 PM
Some people just have no sense of couth. You really do have to just bite your lip until you're so jaded it no longer bothers you. (If you have kids like ours long enough that is SURE to happen)

About a year ago I took a pic of my twins in the mall, and posted it on my Flickr page. I didn't even notice until someone else pointed it out...that there were 2 women in the background gawking at us...I never even noticed it in the mall at the time. Just goes to show you'll have bigger fish to fry than to be hurt by some people's bad judgement and/or ignorance.

You just have to change the way you react to these people rather than expect them to change how crass they are. Oftentimes it's just a misunderstanding and the person is just nervously bantering.

cherienz
04-04-2009, 08:00 AM
I take the questions differently depending on my mood and the way they are asked.

I agree that sometimes it is nice to educate 'adults' with a real answer - purely, because I can still remember before I had a 'special needs' child (if we must label) , I would not have known how to act either - but I would not have asked such a RUDE question. so, I look at a question as genuine interest.

However, when I am particularly cranky and can't be bothered, if someone says "what's wrong with him" - I say - "oh, he's got a cold". LOL. Or I say - oh, he has Pentalogy of cantrells. then they don't know what I am talking about and I move on. Another idea - You can always pretend you didn't hear them.

Kids are the best aren't they, because you can give them such a simple answer and they are satisfied - I love that.

Cherie

JacobKaden
04-04-2009, 11:26 AM
Children are so much more "innocent and compassionate", I find. When I explain why Jacob has a trach, without fail, every child says a heartfelt, genuine, "ahhhhhhh........", which is usually followed by, "he's so CUTE....":D I was really nervous about taking Jacob to Florida for our first venture out around so many "strangers" and I was pleasantly surprised. The adults were also amazing!

We have found that by far, the compassionate comments have far outweighed the ignorant ones. I hope this will be your experience too.:hug:

Anderson'sMom
04-04-2009, 11:32 AM
Children are so much more "innocent and compassionate", I find. When I explain why Jacob has a trach, without fail, every child says a heartfelt, genuine, "ahhhhhhh........", which is usually followed by, "he's so CUTE....":D I was really nervous about taking Jacob to Florida for our first venture out around so many "strangers" and I was pleasantly surprised. The adults were also amazing!

We have found that by far, the compassionate comments have far outweighed the ignorant ones. I hope this will be your experience too.:hug:

Before we had Anderson's lip fixed, the cutest thing was when I would take her to pick up my oldest son.....the boys would google at her and tell me how they saw that fixed on tv and some other medical surgeries too ( some smart 8 year olds) and the girls would not see her lip and just say how cute and tiny she was and all they wanted to do was rub on her feet and hair!

Kids are so amazing!!!!!!!