Discussion in 'Parents of Children with Type 1' started by Nancy in VA, Jan 29, 2011.
This was on the TV news here.
That is very sad. I still won't be posting about it on FB with the blue candle. Not because I don't care. But because I care too much. Does that make any sense?
Sorry if I'm being confusing...I was trying to reply to Michelle's (frizzyrazzy) post about some people were questioning the care "did they check during the night, were they compliant, etc.". I was meaning that those people are being thoughtless. Not just anyone that posted about the deaths. I don't post much, still learning! I see now that I could've replied directly to her comment, and not a general reply. ;o)
I'm not offended at all. And I would agree that most people have good intentions. I am thankful to have CWD and FB. I learn more from other Type 1 families that my dr. ever could teach me!
Oh, I still don't know how to use most of the features on CWD. Yes, I have learned tons from my FB and CWD friends . I am very grateful for this online community full of people with different opinions and experiences. It's wonderful to learn from each other, even if we don't always agree with each other. It makes you think, and I like that. A lot.
I wasnt offended and hope I didnt offend anyone either. I agree to each his own we all support in our own ways and thats just fine.
Yes, you said this much better than I ever could have.
I, personally, find FB moderately...inappropriate for "spreading awareness." There's even a word that has been coined to refer to "Facebook activism" - slacktivism. It's very easy to post something to FB and collectively pat ourselves on the back for "raising awareness" when, in fact, the vast majority of it blends in with the "Just plucked my eyebrows!" statuses that immediately follow.
There are much more effective ways of "raising awareness", but they involve a bit more work than copying and pasting someone else's status or reposting rumor and innuendo. I realize that I'm mortally offending people by posting this, but I feel that if people stepped away from their computer for a minute and actually got out there and DID something, the effect would be worth a million FB statuses.
Finally, and I'm probably in the minority on this one, but I do not feel any need to drive home the point to the world at large that T1 can kill. I do not want my son to be seen as the disabled child, the weak child, the child with the potentially fatal disease. It is more important to me that he be seen as strong and capable and able than it is for the rest of the world to realize how serious this all is. Yes, of course his caretakers need to know that. His teachers, his coaches, yes. I will educate them as need be. But the majority of the people on my friends' list. Nope. I want them to see Jack when they look at him and not Diabetic Jack.
yes, yes, yes yes yes a thousand times yes!! I didn't even realize that I felt this until you just said it, but THIS really sums it up. I don't want everyone to think of Ian as "Ian the kid that could die in his sleep. we can't invite him over he's too fragile! "
oh, I so agree with you on that! I don't want my child to be excluded because people think she is so frail!! Which she is not!!! And in my opinion unless somebody has all the facts about somebody's passing first hand, I don't think it is a good idea to post about it.
I found your statement regarding "slacktivism" profound - how many other examples of it are there I wonder?
I completely agree too! The only downside is few people around me "get it". Thankfully we have this forum when we need a shoulder to cry on or a place to vent.
I agree with this. Despite the seriousness of the disease, the constant care, the relentlessness of it all, I do not want to make my kid the "frail" kid. Yes he has a chronic disease, but he IS and HAS so much more outside of that.
I guess I live in a protective bubble. I know about the complications, about the what ifs, about the fears, but I refuse to let our lives be ruled by all that. I feel for the families. I cry with them. But for my kid's sake and for my family's sake, we keep going despite the fears. And those who know us, those who we need to "train" know how big of deal it all is, how much planning it can take, how much trust we have to get used to giving, how much effort it takes, they know what goes on behind the scenes to make sure our kid leads just a normal 7yr old's life.
Augh, you mean several people died recently,
And all had to do with type 1 diabetes? Why?
This is heartbreaking, I don't care if it's type 1 or 2, car accident, or suicide....to lose a child is devastating.
Maybe Im misunderstanding...
I dont know if it was intended in this way or not but I take great offense to ''slacktivism''. I am very active in our community, walk chair for jdrf, have done radio and tv interviews and continue to mentor newly dxed familes.
Through facebook I have connected families to sites such as this, helped one get the courage to get their child tested, and even booked my sons tv appearence through fb and twitter.
I agree to an extent it cant all be done via internet but I wouldnt down those who do.
I do agree about making people scared or look at our children as frail or scared to have them over. But again to each his own. For me everyone on my fb are friends and family who live out of state. They actually have thanked me for my postings and say how much they learn.
So again if I took the above posts wrong Im sorry but I think theres no right or wrong here. Post as you like or dont if you dont.
Good point! Thanks, I agree we want them to be happy and healthy...yet you hear this and think set the alarm and do the night checks and stay vigilant....sigh. You all know we feel this way. Yet, we don't want to worry and
Label our kid as the diabetic kid.
I totally agree. I changed my fb and my picture because if nothing else the awareness of this disease grows a little. I have never been one to cause trouble on here, but I kind of feel bad that my posting on fb is felt by some to be irresponsible because I don't know the person. If someone in my family died in a car wreck and then I heard of someone else who had died, I would feel even more for that family and I would feel more inside myself because of my experiences with it. Hearing of a type 1 diabetic child the same age as my son who dies affects me more, so I'm not ashamed of posting it.
I apologize if you found offense at my post if it was indeed one of those you mentioned. I would take my post as "if the shoe fits" sort of thing. Obviously you are very active locally and elsewhere and should have been obvious that it wasn't pointed at you. In fact, my post wasn't pointed towards anywhere here on this topic at all - I only meant to point out that I found resonance in the quoted post and that the concept had occurred to me previously. Hitting the "Like" button is not activism no matter how good it makes one feel.
gotcha. No harm no foul. Things get lost via text.
Again imo posting updates of these sorts and changing ones pics shouldnt be put down. To each his own. I choose to do it and others dont and thats fine. There is no right or wrong.
Yes, exactly this! I dont consider Steven "disabled" and he surely doesnt. He would never tolerate my treating him as if he were fragile or needed special handling because of diabetes. But people get scared! And thats ok, really it is, its normal to hear of deaths of type 1 diabetics due to complications and be scared sh**less! And to maybe do more checks at night or maybe go in in the morning just to watch the fricken blanket move up and down with their breathing It doesnt mean that I think that Stevens disabled or weak or sick even, it just means that Im human and Im scared. And I put the blue candle up in FB again because I can, its my FB page and I want it there right now. Not to raise awareness necessarily, but just to show support for families that are going through the same fears I am and for families that have already lost children due to complications of type 1 diabetes.
I wish I had read this thread before I posted last night on FB about 3 people dying from type 1 in the last few days. I know none of these people or their families and I did not have specifics--just what I had read on others posts. Sorry if I offended one and I do intend to watch what I put on FB a little more carefully, esp if I do not have all the facts. Thank you to those that pointed it out, altho I don't really think you were pointing the finger at me--just generally stated it should not be done.
I didn't want anyone to think they shouldn't have posted if they did.
Personally, I didn't want to post just because I read it on FB. I wanted a few more details just to feel comfortable with posting something. I personally just didn't want to feel like I was "chain lettering" it - especially when it started as one death and by the end, it was 5 deaths (can you say a game of telephone).
I agree that each person should decide for themselves what they choose to post and share on FB. For me, I wanted a bit more info before I was comfortable posting. In previous cases, we had details of the person (i.e. former JDRF Children's Congress, member here, etc). But these were just "I heard of a person here" and I was personally a bit uncomfortable as that as my basis of posting
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