Friday, March 14, 2008

Pondering the Blog

Today marks the beginning of my fourth year as a diabetes blogger.

In my very first post, I said that it was "liberating to think that I could write something here that might help someone out."

Three years later, and I still feel exactly the same.

And more.

Because soon after writing that first entry, I learned that blogging could open the door to both giving and receiving a tremendous amount of support.

I also wrote that blogging would "allow me to unload some of the vast amounts of frustration, information and heartache" that had piled up "since my [then] 9-year old son's diagnosis."

While this site has indeed allowed me to do just that-- I have to say, the unloading part has become a lot more complicated of late.

Think about it.

My son is now 12-years old-- an age when many of his peers have access to the web.

What would happen if any of them found this site?

Now, don't misunderstand. Joseph is still supportive of me doing this-- is still fond of saying, "Mom, you should put this on your blog."

Even so, I can feel myself holding back.

And I hate it.

Because rather than letting loose -- unloading -- I find myself "knapsacking."

Hauling around stories until the weight of them almost makes me scream.

(Perhaps if I'd started this site anonymously, it would be different.)

Is there a way to balance what I post here with a respect for my son's privacy?

Any thoughts?

Anyone else grappling with this issue?


20 comments:

Penny said...

Hmmm, Sandra. That is a tough one.

I don't know what to tell you. But, I understand where you are coming from.

I don't want you to feel like you have to hold back. I know how important it is just to get things out sometimes.

Yet, I understand your need to protect Joseph.

I hope you find a solution. I enjoy reading what you have to say. Sometimes I feel like I could have written the posts myself.

Jillian said...

I can completely understand the need to protect Joesph's privacy. I also understand that it can be difficult to strike a balance between protecting him and sharing your story. I hope that you can come to a resolution, because holding back definitely isn't the way.

Have you tried "Googling" keywords/phrases that Joesph's peers might use that could bring them to the blog? For instance if you Google "Jillian Diabetes" my blog is the second result. Joesph's name is more common, so it's probably not as easy to find you guys. I would suggest using your own judgment, and perhaps asking for Joseph's input if you think a post may cause some sort of issue for him.

Nicole P said...

Recently, someone found me through my blogs. Someone I would prefer to have not seen again. They showed up at my door. It was scary. And strange.

I contemplated stopping blogging altogether. But then I realized what a difference it makes in my life. And I realized what a difference I hope I make in the lives of others. But I think I am a bit more held back now when I write, because I know that there are people reading that I might prefer not know certain things about me and my life.

Of course, this doesn't compare all that well to your situation. Because you want to protect Joseph, I'm just protecting myself. But if he's supportive perhaps he'd be willing to help you draw the line between what he thinks is OK to post and what is private. Also, if you wanted, you could protect certain posts by creating a private blog or locked posts that you only share with people you know.

I think yours is a common struggle. I can't imagine it's easy to weigh what is shareable and what is not when it comes to your child. But I would truly miss this blog if you were to stop posting - and I know many others would too. And I believe wholeheartedly that this online-community wouldn't be the same without your voice.

Shannon said...

I would simply ask Joseph:

Is this something you'd want your friends to know about?

If he gives the yay or nay, you'll know whether to blog about it.

There are things about Brendon that that may or may not be directly related to diabetes that I wouldn't post because I know he wouldn't want his friends to know about it.

I have a friend who always asks her family members if it's OK to post certain things about them.

I pretty much inform Jeff that I'm going to post any story he tells me. He knows not to object, LOL.

Sandra Miller said...

Penny-

I hope I figure this one out, too.

Jillian-

I've thought about that-- and you're right, Googling "Joseph" and "diabetes" doesn't (thank heavens) lead you immediately to this site.

Further, because I kept my last name when I got married, I think I've been able to preserve a level of anonymity for Ryan and the kids.

But still.

If any of his peers got wind of my last name (which isn't hard) and became curious, they could get to this site pretty quick...

Now, I have talked to Joseph about my concerns-- just yesterday he said "Mom, I really don't care what you put on your blog-- it's your blog."

(Though he does seem to care when it comes to posting less than flattering photos.)

Nicole-

I don't think I can password protect individual posts on Blogger's platform. But I'll look into this.

In the meantime, if need be, a second, private blog might be something worth considering.

But this is so hard, because one of the things that motivates me to write is letting others know that they're not alone in their experience.

Shannon-

I have asked him this question-- but this a 12-year old boy we're talking about.

One who feels pretty darn comfortable in his own skin.

Thus, his judgment of what might be cool to share online doesn't always take into account the potential cruelty of a (hopefully) small population of his peers.

You can drive yourself crazy (and some days, I have) thinking about how some sad or funny anecdote might possibly be used to hurt your child.

Shannon said...

Ah, right. I guess when you're that confident as Joseph is, you don't expect to receive jabs from peers.

Quite the quandry.

Wordpress allows individual posts to be protected, I THINK.

I would register and play around with it to see if it works that way.

Colleen said...

A thought...

What if you used a new, different name for Joseph?

And yes, you and Joseph make a difference.

Araby62 said...

It is hard, and being a parent I think you have twice the struggle. Personally I choose to blog under a pen name because, quite frankly, I'm concerned someone in my professional life could find me out. (My current job isn't exactly D-friendly.) It also gives me an extra layer of protection so I don't have an experience like Nicole's (sorry to hear about that one--man, that sucks.)

All I can say is that it is tremendously helpful to have all our voices out there in the diabetes OC, and yours is valued. Good luck with it and have a good weekend!

Vivian said...

Sandra, I am so sorry that you are having to make this decision. I hope there is a way that you can manage it and still be with us. You are a very important part of this community, as is Joseph. That is one inspiring kid you have there.
Maybe he is going to be like so many of the other young people in the OC and be very open about his D. He is wise enough to know who his friends are and the ones that are not don't matter.
I worried about writing about my oldest too. As a teen girl I figured she would be upset if I said anything about her. Not so much the case. Every time she does something stupid, she just looks at me and is like, "You are so going to blog about this aren't you?" It does not bother her, her friends know she is a dork.
Daniel likes that I share his story, of course he is just turning 10 and thinks it makes him a famous rock star. (Thanks Allison)=)
In the end, you know what is best for you and your family. I, selfishly, hope that whatever that is that it still allows you to write here with us.

Anonymous said...

Hello Sandra. I have never commented on your blog before but I have read it for over a year and have read every single post you have ever made. I find it so inspirational and I would be saddened if you made it private because it would mean I could not read it. However, as someone who is only one year older than Joseph, I would be pretty embarrased if one of my school peers found a blog about me.
However, changing Joseph's name may be useful.
Thanks for inspiring me,
Sarah (UK)

Anonymous said...

Hi, Sandra. You have helped me so much by blogging, more than you know. The lack of anonymity is the major drawback to blogging and posting pictures on the net at any age. I suggest creating another anonymous blog where it is safe to unload thoughts, feelings and experiences that you may wish to share and get responses to yet keep private (as far as identification goes). You can link it to the blog you have. And let your son see the content of what you publish and okay it beforehand. He may even wish to create a blog of his own. But I would give him the final word on what you publish. On the anonymous blog, you can change names, sex, age, etc. to protect identity.

Molly said...

Sandra.
Ditto on what's already been said.

Wordpress allows you to set a password for particular posts. Switching to that platform might help protect Joseph from friends reading private "stuff."

I do understand. There is so much support available from people reading and commenting on blogs. I originally started blogging, without caring much if people read/commented or not. I really just wanted a place to direct people who had questions about diabetes service dogs. Writing back to everyone that wanted to know about Dixie was getting overwhelming. As I continued to blog, I was surprised at how "connected" I felt to others when I knew they were reading and sharing in this with me. I've learned from others, and I feel like it's the support group/resource network I never had before....
That said, I'd look into wordpress. It might give you just the options you're needing.

Ashley said...

hi, new here... i hear what you're saying about the disclosure in your blog. i have a rough time with it too. i am new to blogging, but i wrote one the other day that sort of criticized my mother, and if she would suddenly become computer literate and find it, i think she would be disappointed.

now i know i'm just mostly trying to cover my own butt, but i can understand how scary it can be.

anyone can read this stuff!
you never know who it's going to be.

i have loved reading your blog, by the way, seeing diabetes from a mom's perspective helps me understand my own mom.

AmyT said...

To be honest, I've always wondered how you could post so much about your son without "crossing the line." Because I struggle with that, too, just for myself -- a grown-up who's chosen to open her life up to a certain degree. But now that my blog is so well-read, I find it difficult too. In other words, hear you!

Priscilla Call Essert said...

Yes, I can relate to this dilemma. I published a book called My Life as a Pancreas which covers stories of life with my son through the age of 11...I am drafting book number 2 and find it more difficult to write as I find myself getting bogged down with worries about what is fair to tell and what must I keep private...I didn't face this in the first book and find it is holding me back. You are right: peers will see it, parents of peers etc....Although my son says "go for it", does he really understand the future implications? It is a tough one and I applaude you for thinking about it. If I come up with any brilliant ideas, I will let you know!

Sandra Miller said...

Shannon-

You're right about Wordpress-- I registered a year ago, but never did anything with it. Just found the blog templates too rigid.

Since reading your comment, I spent time this weekend playing with some of their templates in hopes of coming up with something that looks and feels like this site...

The option to make certain posts private sounds like it might be just the ticket.

Colleen-

I don't know. It feels kind of late to change his name. I'll have to think about that one...

Araby62-

Can't tell you how many times I've wished I used a pen name for this!

Vivian-

Yes, Joseph is a wise kid-- but some kids are just so dang cruel. I've been reading a lot lately about the prevalence of so-called "cyber bullies" among middle schoolers.

I don't know if I could forgive myself if someone were to use this blog to hurt him.

Sarah-

Wow.

Your comment made me cry, you know that?

Thank you.

(By the way, Joseph thought it was pretty terrific that a girl from the UK was inspired by his story. :-)

Anon-

I'm looking into a compromise right now.

Thanks so much for the suggestions.

Molly-

Yes, you've described exactly how I feel about this community.

And because of these feelings, I'm really motivated to continue blogging.

Ashley-

Thanks for sharing your thoughts on this-- and I'm very glad you've found this site helpful.

And hey, I look forward to checking out your blog. :-)

Amy-

Writing about my son when he was still fairly young was just so much simpler.

Priscilla-

Please do let me know! :-)

Jamie said...

Sandra - thanks for commenting on my blog.

Your post today is of a slightly similar reason why I am ending my blog (as stated as one of the "personal" reasons I'm deleting it).

Sometimes I want to vent about things that are personal - but because I'm not annonymous anymore, I can't do it. And I know how much better you feel to post, write and get it out - it's been very therapeutic for me over the past three years. But somehow, somewhere, I crossed the line - I have people who read my blog that know me and my family that I do not wish them to know these things - I would prefer to remain annonymous from time to time.

It's a strange predicament to be in though - because as much as it's nice to maybe have that annonymity (excuse my spelling), being a part of the diabetes OC is almost like being a part of a family - and it's hard to do that as an annonymous individual.

I feel like I'm babbling here.

Maybe having a second blog, and keeping this one, will help ??

Anonymous said...

De-lurking . . .

The privacy issue is a tricky one. I'm one of those anonymous readers who would be sad to see your blog disappear if it went private. I do not have diabetes or a close family member with diabetes. I value your blog precisely because it offers a window into a situation that affects millions of people, the particular trials and triumphs of which I would never otherwise have been privy to. I hope this doesn't sound creepy; I'm struggling to find the right phrasing here. Reading about others' lives, however different from ours, promotes understanding as we go about our own.

At the same time, your concerns are certainly very valid. The idea of starting an anonymous blog, somehow linked to this one, sounds like a good solution (though I lack the Internet savvy to know how one would go about doing this).

Nicole P said...

TAG!

Michelle said...

I needed your blog tonight. I also tend to "knapsack" but it was just too much tonight to bear. I clicked over to read your blog for comfort and inspiration after my first post in a long time. It is 4am and I can't sleep.

You and your son are brave and I would like to thank you both for sharing your stories so I can read them at 4am.

Here is my advice.

I would encourage your son to start his own blog about his life with type 1. I am not dismissing your concerns about privacy, but he could reach out to other kids and connect with them.

I would also encourage you to take off any photos of him and your family. Another parent gave me this advice, and to maybe not use his real name.

But all that aside, please keep writing.

Michelle