Blogging About Sick Kids - MckMama

[Beeks]

This is semi-OT but it relates to MkcMama, who is a nutter butter Christian, so I thought it could go here.

I just started reading a new blog, which shall go unnamed because I really like it, where the baby is seriously ill. The mom is already posting pics of the kid in the hospital, looking sick, with lines running into her, etc. I find this practice....questionable at best. I can see taking the pics, to document childhood, but posting them online - WHY? It just seems sort of icky and exploitive. It's one of the things that first turned me off of Mck.

Now, that said, I've never had a seriously ill child, so what do I know? Am I missing something here?

[TVR]

I think different people deal with trauma differently and some people NEED to talk, and blogging is their way to do that.

[Beeks]

I think different people deal with trauma differently and some people NEED to talk, and blogging is their way to do that.

Oh I'm all for blogging about it and asking for support. I just don't understand publishing the images of a very sick child.

[TVR]

I think it is part of the process of coming to terms with it. I have never been in that situation and I have no idea how I would react or deal with it, but I've had close friends who have dealt with stuff like this. Some don't show photos, some do. I honestly believe they just deal with their grief and worry in different ways.

[Alecto]

I know someone who blogs about her seriously ill son, but while her blog is open to the world, in truth she tends to post a majority of it for family/friends to know how her son is doing.

[LeatherCouch]

I did it for 2 reasons. 1) So that family and friends could keep up with how he was doing and what was going on without the need for me to repeat the same info to 30 different people individually, and 2) because what my son went through is something that there was no real info about on the web, and rare enough that you wouldn't know someone IRL who could tell you what to expect. The medical community was useless in the what-to-expect department and were learning as they went with my son. It was crazy scary and we went through it without the benefit of btdt advice. 2 years later I still receive emails from terrified parents all over the world whose children are going through the same thing and I'm able to give them my experience and also learn from them so that my son benefits. In essence I created a community to benefit my son and other children with the same medical issues via my blog, and that turned into a forum to collect data for the researchers and doctors who until then had almost none.

[Olivia]

I see what you mean. I think there are a lot of interesting ethical questions that have never arisen before coming up with "mommy-blogging". Where does a parent's right to talk about their child end, and a child's right to privacy pick up? I can definitely see where a blog about a child's illness could be both therapeutic and an opportunity to get info and help out there to other parents. At the same time, photos and the story of your LI once posted, are sort of out there forever and it may not be a time he or she wants broadcast to the world.

I especially think of the one mom who blogged about her son's suicide attempt extensively; it was just a little icky to me. It wasn't her story to tell. That's a more clear-cut example of inappropriate than most, IMO. Usually I do think it's okay, it just feels sometimes like it crosses the line into violating the child's rights, when the parents seem oblivious or uncaring as to what might be embarrassing to their little one.

[Nora509]

I understand blogging about it as a way to update family and friends, get answers, etc. but to be honest I've never understood the pictures. I've seen pictures of young kids in hospital beds with tubes everywhere and even pictures at funerals. To me, pictures are to commemorate happy events. I would never think to pose in front of a casket or take pictures of a family member in a hospital (unless it was the birth of a child). Now if a child was seriously ill and had spent a signifcant amount of his or her life in a hospital, I totally understand taking pictures to document their life. Other than that, it just seems odd to me.

[LeatherCouch]

People take pictures to remind them of the past, and for all sorts of other reasons. What if an illness lasts for months or years? Children grow and change quickly, and I, personally, want to have pictures of them all throughout childhood. That doesn't mean that I take a picture of stomach bugs and colds, but if my child is going through something that takes months or years I'm not going to just skip that part of their lives because they have something going on medically. That child is probably not going to forget that event in their lives, assuming they are old enough to remember. What does not taking their picture during what is surely a life altering time frame say to them? That they were such a burden during that time that their parents didn't want to commemorate that span of their life? That it was too hard for the parents to remember? Yes, some kids would feel that way. We all make mistakes as parents, but things totally change when your child's life is in danger and forever altered by an illness or injury. I can see why some wouldn't feel comfortable posting the pics on the web, but whether pictures should be taken at all or not is impossible to judge.

[EllyPDQ]

I understand blogging about it as a way to update family and friends, get answers, etc. but to be honest I've never understood the pictures. I've seen pictures of young kids in hospital beds with tubes everywhere and even pictures at funerals. To me, pictures are to commemorate happy events. I would never think to pose in front of a casket or take pictures of a family member in a hospital (unless it was the birth of a child). Now if a child was seriously ill and had spent a signifcant amount of his or her life in a hospital, I totally understand taking pictures to document their life. Other than that, it just seems odd to me.

For a lot of people, photos aren't just to commemorate happy events. What a boring world it would be if that were the case! And though the blogging part is new, the idea of photographing morbid subject matter is not. Google for Victorian post-mortem photography. You can bet that if blogging were around back then, they would've been sharing those memorial photos online.

[Koala]

I see what you mean. I think there are a lot of interesting ethical questions that have never arisen before coming up with "mommy-blogging". Where does a parent's right to talk about their child end, and a child's right to privacy pick up? I can definitely see where a blog about a child's illness could be both therapeutic and an opportunity to get info and help out there to other parents. At the same time, photos and the story of your LI once posted, are sort of out there forever and it may not be a time he or she wants broadcast to the world.

I especially think of the one mom who blogged about her son's suicide attempt extensively; it was just a little icky to me. It wasn't her story to tell. That's a more clear-cut example of inappropriate than most, IMO. Usually I do think it's okay, it just feels sometimes like it crosses the line into violating the child's rights, when the parents seem oblivious or uncaring as to what might be embarrassing to their little one.

I think this best sums up how I feel.

[Terrie]

For some people, words will never make a situation real. It's about communicating information and sometimes a picture is the best way to do that.

[Feberin]

One of my coworkers blogs about her very daughter's heart condition. It's her way to update everyone. I like it because I Would never be included on some phone tree to update but I think about their family a lot and hpe she improves. They put up some pictures but mostly ones from good days. My son was in the hospital for a few days with what turned out to be a UTI and was there over Easter. We took pictures although all he had was an iv so it wasn't too bad or anything. It was his first Easter and we make a big fuss with pictures for all holidays.

[forever ago]

I think it's exploitative to put them online for all to see. That shit is forever. Nobody wants pictures of them as children in the hospital floating around.

It's one thing to simply take a picture of a child in the hospital, but another to let absolutely everyone see them, including people you will never meet.

I'm still pissed that my sister put a picture of me in the hospital on Facebook. I was 18 when the pic was taken, but still, I do not want pics on Facebook of me passed out in a hospital bed.

[Rosa]

See, I have a friend who spent months and months in the hospital as a kid, and has had to do a lot of research to find out if her memories are even real - she would have LOVED to find that kind of documentation, because she's got basically none at all (her parents have died.) And I had a friend in h.s. whose little brother had died of leukemia - they had a whole scrapbook about his illness and dying, separate from the scrapbook of birthdays & stuff, because they wanted to have it and share it but not all the time, I think. (She showed me the scrapbook, but I never thought to ask why her mom made it or who usually got to see it).

I think the line is really grey. Stuff is exploitive if it's exploitive - if it's using the kid to raise money or get sympathy - except, not always, because using a photo of the kid & a synopsis of what's going on as a fundraising tool for medical bills is really common and doesn't seem mom-centered the way MacMomma does. And in other cases the exact same amount of information is documentary, or just personal to the family/friends/parents.

There's an age thing, too - teenagers & tweens should get more control of their own information. Infants don't, in between seems more of a judgement call.

[nuri]

For some people, words will never make a situation real. It's about communicating information and sometimes a picture is the best way to do that.

More than that, I think it normalizes the experiences when you share it. Because others will share too, and then its not just you and your child going through this -- it's a stranger and her child states away.

I don't really believe in hiding the experience of being sick, in treatment, or even dying away. Being careful about it, sure, using compassion to decide what is shared. But these are all normal parts of humanity, and the more we share them, the less icky and taboo they will be.

[Beeks]

More than that, I think it normalizes the experiences when you share it. Because others will share too, and then its not just you and your child going through this -- it's a stranger and her child states away.

I don't really believe in hiding the experience of being sick, in treatment, or even dying away. Being careful about it, sure, using compassion to decide what is shared. But these are all normal parts of humanity, and the more we share them, the less icky and taboo they will be.

It's not that's it's icky and taboo, it's that many aspects of being seriously ill are private matters. Private does not = wrong or bad. In the same way I wouldn't want a picture of myself nude out on the internet for all to see, I wouldn't want a picture of myself lying in a hospital bed, desperately ill, with lines running into my body published for all to see. There is nothing shameful about my naked body and there is nothing shameful about being sick, but I wouldn't want either one photographed and published on the internet.

I guess people can differ on this issue which is exactly why I don't think a parent should be making the decision for a child.

[latraviata]

This is semi-OT but it relates to MkcMama, who is a nutter butter Christian, so I thought it could go here.

I just started reading a new blog, which shall go unnamed because I really like it, where the baby is seriously ill. The mom is already posting pics of the kid in the hospital, looking sick, with lines running into her, etc. I find this practice....questionable at best. I can see taking the pics, to document childhood, but posting them online - WHY? It just seems sort of icky and exploitive. It's one of the things that first turned me off of Mck.

Now, that said, I've never had a seriously ill child, so what do I know? Am I missing something here?

No you don't, it is appalling. I knowI had a very, very ill child an I personally would never had him publicly exposed like this. But a lot of people obviously want their 15 minutes of fame, it is a disgrace!

[Olivia]

It's not that's it's icky and taboo, it's that many aspects of being seriously ill are private matters. Private does not = wrong or bad. In the same way I wouldn't want a picture of myself nude out on the internet for all to see, I wouldn't want a picture of myself lying in a hospital bed, desperately ill, with lines running into my body published for all to see. There is nothing shameful about my naked body and there is nothing shameful about being sick, but I wouldn't want either one photographed and published on the internet.

I guess people can differ on this issue which is exactly why I don't think a parent should be making the decision for a child.

Exactly. I'm very open about my life. I don't think anything we're talking about would bother me if it were my own illness. But I try to keep things that belong to other people private. My husband has a medical condition, and I don't tell other people about it. I blog about my own medical issues when they come up, but I would never blog about his -- he would not appreciate it. So, personally, I would probably blog about a child's medical condition but I would try to minimize identifying them if I could until they were old enough to guide how much info I put out there. They might be more private, like my husband, and not someone like me who doesn't care who knows what.

[higgledypiggledy]

I had a preemie son in the days before blogging. I lived in a state distant from my family and probably would have posted pictures on the web but would have used privacy settings. That said, I did leave my job when he was born. At the time I was a teacher of high school students in a prep school. The principle and school psychologist felt that my students could not understand the enormity of what my family was facing. They called and asked me if I would be comfortable coming in one afternoon to share a few pictures and the reasoning behind our family's choices. It was their hope that doing so would help students develop greater compassion as well as help them understand the process adults use to make life changing decisions. It turned out to be a wonderful afternoon. Some of my students had just pictured a preemie as a smaller version of a regular baby. Seeing how much medical technology was supporting his body helped them understand in a concrete way that I simply could not return to work in eight weeks. It helped them to see for themselves that I could not risk bringing pathogens home from school--that what would be undetectable and asymptomatic to my students could threaten my child's life. Since our son would require special care, need to avoid daycare (germs again) and possibly require special therapies either my spouse or myself would have to stay home. They learned that economics played a factor in the decision. I shared my sons nicu pictures with a hundred students to their benefit and also mine.

[Olivia]

I had a preemie son in the days before blogging. I lived in a state distant from my family and probably would have posted pictures on the web but would have used privacy settings. That said, I did leave my job when he was born. At the time I was a teacher of high school students in a prep school. The principle and school psychologist felt that my students could not understand the enormity of what my family was facing. They called and asked me if I would be comfortable coming in one afternoon to share a few pictures and the reasoning behind our family's choices. It was their hope that doing so would help students develop greater compassion as well as help them understand the process adults use to make life changing decisions. It turned out to be a wonderful afternoon. Some of my students had just pictured a preemie as a smaller version of a regular baby. Seeing how much medical technology was supporting his body helped them understand in a concrete way that I simply could not return to work in eight weeks. It helped them to see for themselves that I could not risk bringing pathogens home from school--that what would be undetectable and asymptomatic to my students could threaten my child's life. Since our son would require special care, need to avoid daycare (germs again) and possibly require special therapies either my spouse or myself would have to stay home. They learned that economics played a factor in the decision. I shared my sons nicu pictures with a hundred students to their benefit and also mine.

I think (personally) that's really different, because there's no impact to your son, kwim? It sounds like a great learning experience for your students, too.

[Beeks]

I think (personally) that's really different, because there's no impact to your son, kwim? It sounds like a great learning experience for your students, too.

I agree. The pictures weren't placed permanently in the public sphere - they were shared once with a limited number of people, for a purpose, and that was it. It's not like somebody could google your son's name in 20 years and find those pics, which is the case with a lot of these mom bloggers.

[nuri]

It's not that's it's icky and taboo, it's that many aspects of being seriously ill are private matters. Private does not = wrong or bad. In the same way I wouldn't want a picture of myself nude out on the internet for all to see, I wouldn't want a picture of myself lying in a hospital bed, desperately ill, with lines running into my body published for all to see. There is nothing shameful about my naked body and there is nothing shameful about being sick, but I wouldn't want either one photographed and published on the internet.

I guess people can differ on this issue which is exactly why I don't think a parent should be making the decision for a child.

And see, I think parents make a lot of decisions for their children, particularly at young ages, that will effect their lives and may end up having very different opinions. I'm not sure why this is so different. Things may linger on the internet, but they also are very empheral. In five years, who is going to give a crap about my blog?

Of course, this is why I think parents who blog about anything sensitive, should take care and be compassionate. I do the same when I talk about my husband, who is diabetic. I will talk about when he is in the ER, because that's my life too. The high cost of medical supplies, I share that too.

When a parent with a sick kid blogs, they are also sharing their own experiences and their own life. It's shared, and I think the boundaries are going to be fuzzy between documenting and exploitive.

[carolinabekah]

I have cystic fibrosis and this is totally normal in the CF community...probably because there is so little time that one is not hooked up to something or doing treatments.

I choose to post pictures of myself on my blog and facebook to help others see and not just hear what I go through.

I'm not sure about how I feel when its a child too youung to consent and I will say my parents have very few pictures of me in the hospital or realy sick. There are some of me doing neb treatments(cause thats what I spend my life doing) and a lot of me with the steroid face and look...but overall my family is of the if something happens to you we want happy, everyday pictures and not pictures of you really sick in the hospital (and everday for me includes some pics of me doing my airway clearance and nebs but no IV pictures etc)