Discussion in 'Parents of Children with Type 1' started by Nancy in VA, Jan 29, 2011.
yes, this too!
No, no finger pointing at you from me at all, Beth. I don't think you or anyone else meant any harm. And very likely no harm was done.
I guess I'm unusually sensitive to this right now because I know someone very well who lost their 5 year old child a week ago tonight. (He did not have diabetes.) His father was adamant that news of his death NOT be posted on Facebook, because he couldn't bear the thought of something so very, very personal and raw being posted among the Farmville updates and normal inane banter that makes up much of FB. His child died of a complication of a rare virus, so there is little chance of a "community" picking up the news and re-broadcasting it, but he didn't even want the well-meaning condolences of long-ago friends and acquaintences. It is simply too painful for him to bear.
I attended that funeral. I looked into that little boy's parents' eyes. Perhaps someday they will be in a place to be comforted by the words of others. But right now the thought of their son becoming part of someone's News Feed and then just as quickly forgotten would just add to their despair.
Think of it as this: Facebook and Twitter are like the "breaking news" aspect where a tidbit is just gotten out there so people know about it. The follow-up and substance comes later. Advocacy can be effective in these forms, when coupled with other more in-depth resources online and offline. But they compliment each other.
A danger in posting even just a quick update such as "a 13-year diabetes girl died from diabetes" doesn't mean that the 13 year old girl actually died as a result of diabetes. Other things happen, and diabetic children can die from things completely unrelated to diabetes. I've seen this example a small handful of times, where the assumption was made incorrectly.
Human nature is to wonder and be curious, and it's inevitable for people to ask those questions when hearing about this tragic news. Some are simply insensitive and pose these questions in accusatory words, or as "know-it-alls" who appear as though they're lecturing rather than expressing sympathy or sadness.
Such is the new world we live in, with the Wild Wild West of the Web.
a few months ago a local boy here died on the football field. He had diabetes. quickly word spread that he died from diabetes. A few weeks later the father went out of his way (and wrote an article for the paper) to educate people that his son did NOT die of diabetes, he died of an undetected heart condition. Can you imagine having to not only have your child die, but then have to go around correcting misinformation? He said he did it so that the diabetes community would not worry.
The only thing I did was change to a candle out of respect for those who died. I didn't mention nor otherwise refer to it, just put a candle up. For me it has absolutely nothing to do with activism and everything to do with acknowledging a loss, and not letting a person's loss (even if I do not know them) go unknown. If I had a loss and someone else I didn't know lit a candle in honor of that loss, I think that would somehow ease my burden. Silly of me? Perhaps, but it helps me to believe that those who are suffering can somehow feel our support.
I have similarly lit a real candle.
I did not and will not post anything on FB about it on my status out of respect for my son, many of his friends are my friends (and so is he).
In total agreement!
Well, I had started feeling badly about posting even before I read this thread. I posted on FB last night and today when I got on, there were several responses and a couple of them asked if we were sure it was from D. I'm sorry to say I didn't know for sure. I am praying for all parents who lose a chile. I know what my own parents went thru and I don't wish that on anyone.
I'm sorry, you are right that he shouldn't have had to face all that during a time such as that, but this post really struck me. How incredible that he was thinking of the comfort of others at a time like that.
It's true, it's all new, no rules of decorum yet, and by the time we develop some there'll be a whole new new.
My two cents if you care to read it (and you must or you wouldn't be on a forum )...
When posting any information regarding diabetes on Facebook, first take a minute to THINK about what you are saying. Do you know the information to be truthful? Could your statement be misunderstood by MOST of the readers? What is your rationale for posting and is it satisfied by your statement?
Don't forget about the newly diagnosed families out there that are right now panicking and barely getting through the day. They are fragile and need more than vague statements and blue candles.
Slacktivism ... the desire people have to do something good without getting out of their chair. Love this term! Make sure you're "awareness" does more for the "diabetes community" than spread panic!
I completely agree with all of this! The worst thing lately (and it really bugs me) is when people ask about Kyle and I say things are good, ever since the pump things have been awesome. The next response is usually pity...ummmm really? Then me attempting to smooth it over.........no no it's a good thing, the pump has made our life better not worse
I'm sorry if I upset anyone with reposting, but I just had to.
I have two "friends" on FB that lecture me about juvenile diabetes.
One is convinced that if I put "L" on a carb free diet, she will be "CURED"
She knows this for a FACT mind you
Another "friend" thinks that I give "L" starbusts in her fanny pack as a snack, and that I should put "healthy" snacks in her fanny pack.
I have tried to explain diabetes to these two "friends" about the disease, ketones, etc.
Next question is, why are they my "friends".. because "L" s friends with their kids, and if I kick them off, it will start trouble.
I just hope that the tragedy of these beautiful children will educate people that make my life hell and stressful with their ignorant comments..
I doubt it. They're just going to be convinced even more that it is imperative that you put her on a low carb diet and take away her starbursts NOW ..before she dies.
Yeah, I'm afraid that's the way it works. Sorry.
I did write in the status, something like,
"See, Juvenile Diabetes has NOTHING to do with the foods our kids eat"
Would this piss you off?
I always have diet rootbeer and diet snapple in the car.
The other day, L was playing with the lady that can CURE diabetes son, and he wanted a drink..
She very adamantly said "no" to her son.
I said why? She said that diet soda is very bad, and she had a mountain dew in the car for him?
I said, are you telling me that a sugar filled mountain dew is better than a sugar free soda, and the lady that has the CURE said "yes".
don't feel bad, I went away for the weekend with some army wives and their kids and at night mom 1 (who thinks she knows everything) brought brownies and passed them out, as well as grabbed hot water from room service and made all the kids hot chocolate . The next morning they wanted orange juice and she kept saying "you had enough sugar last night!" ...so..yeah. give your kids brownies and hot chocolate and then deny them OJ. whatever.
lol people are weird.
Is this lady for real!!! I mean really. you have to be kidding me. I can see it now her saying that and you sitting there with a dumb look on your face saying ummmm ok. But since she has "the cure" then I guess she must be right............hahahahahahahahahahaha yeah right.
Unfortunately, you just can't cure stupid.
I have been thinking about this for a couple of days...To be honest I have been kind of afraid to post my true feelings on the matter. The bold print above is why I feel the need for more detail if I hear about a death.
It's not morbid curiosity, I want/need to know if what happened could pertain to my child. But the ugly truth is, unless it's someone I know from here or in my life. I really don't want to know, not because I don't care...Because I do and it hurts. I don't want to read about type 1 deaths on my facebook unless I know the person. Do I know Mel well? Not really well, but I WANT to support her and her family because she is a part of our community.
If I can't directly help in some way it just adds stress to an already stressful life. My son can access my facebook, I don't want him reading about it either. I feel guilty for feeling this way but it's the truth.
I spread awareness with information, when people put their foot in their mouths it doesn't bother me. I use it as a chance to educate.
I'm not wanting to make anyone feel bad for posting, when we hear bad news it's natural to want to talk about it. It helps us get our feelings out, it's just hard not really knowing what happened and not being able to help.
Separate names with a comma.