Sunday, July 21, 2013

To Blog, or Not to Blog?

Last week my family attended the Children with Diabetes conference in Orlando.  One of the first sessions I attended was a panel discussion about how medical professionals feel about the Diabetes Online Community (DOC).

You can find the full video of this discussion on Scott's blog here.

For the first half of this session the discussion went mostly as expected … Then at exactly 57:47 the discussion turned to whether parents should be blogging about their T1 children.  It was suggested that a parent should err on the side of caution and share almost nothing about your child’s life with diabetes.
My gut reaction was … Ack!

Until that moment, I did not realize I was doing anything wrong.  I thought I was helping my son … not hurting him.  And it never occurred to me before that by writing this blog I was being selfish and putting my interests before my son’s.  Thank God another mommy blogger spoke up to defend herself (and what felt like me too).  I felt some comfort knowing I was not alone.  But I did leave the session convinced I should pull down this blog and beg for forgiveness.

Later in the week I attended another session about blogging.  (Seriously, I must be a glutton for punishment.)  My hope was that I would find some comfort listening to the advice and wisdom of my fellow bloggers.  Soon the topic of children’s privacy came up again, and again, and again. 

Ack!

I left this session again convinced my blog needed to come down, if I write one more word my son will never be able to get a job, or insurance.  His life will be ruined and it will be entirely my fault!

I immediately hunted down my husband, Jeff.  He works in education specializing in technology.  I knew he would have an opinion.  When I found him, I starting babbling about how I am ruining our son’s life and I am the worst most selfish mother on the planet!  Jeff, of course, disagreed and suggested I calm down!  Jeff insisted I shouldn’t feel so badly.  He said he was proud of my blog and all my advocacy.  He also suggested that everyone has a digital footprint and what we need to do is learn how to take advantage of it instead of being so scared of it.

Ahhhh!  Now that was an interesting perspective!

With that little bit encouragement I began to reconsider my decision to quit blogging.  (I even posted a story while we were still at the conference.)  But I was still not 100% convinced.  Once I arrived home I started scouring the web for more information.  I started by googling “digital footprint.” I wasn’t even sure I understood exactly what that meant.  I eventually ran across this short video that describes what they call your digital dossier (aka digital footprint).



The basic premise is that you are constantly leaving behind a trail of all your interactions on the web and the whole digital world (including your TV and phone).  This happens when you visit websites, make purchases at web stores, Google information, and use social media.  So the idea that our children have any real privacy online seems unrealistic.
Some of this information we unwittingly put out there when we visit websites and visit web stores.  But there is also a load of personal information in our digital footprint we put out there ourselves, via Facebook, Instagram and BLOGs!  Now you can be like me and run away scared, deleting Facebook accounts and taking down blogs … or you can be smart and brave like Jeff and realize you hold the power, the power to mold and control your online identity. (And the online identity of your super-awesome and brave T1 son!)

Ahhhh! 

Now this idea led me to a couple more questions …

First, what is the purpose of this blog?  (It most certainly is not to ruin my son’s life.)
I started this blog last year because I felt I had a story to tell … a story that was too long to tell over a dinner or while chatting during a hockey game.  I also felt it was a story people needed to know.  I am certain that if the whole wide world understood (really understood) what life was really like for all these T1 kids there would be a call to arms!

Secondly, what is it I want the world to know about me and my family? 
I am a mother of three wonderful boys and my youngest has T1.  We are a family learning how to live (and love) life with Type 1 diabetes.  We have had triumphant days and other days we would assume just forget.  But through it all my son has proved to be tough, resilient, un-complaining and the light of our life.  He is our hero! (And to any future employer … you would be lucky to have him.)

With those questions answered I finally have decided to keep blogging.

I started this blog to tell our story.  And serendipitously, I have found the support and love of the DOC.  I honestly believe this blog has both educated folks and at the same time made me a better T1 mom.  I will continue to tell honest stories.  I have always been careful to not share too much, but will now be even more diligent.

So after a couple weeks of soul searching and trying to better understand our online world, I am left with this simple idea … If the whole wide world and web is listening to you when you are online then you better make sure what you are saying is interesting, compelling and the best representation of yourself. 

The power is yours!

25 comments:

  1. You were at that session? How did I not meet you? I was the one who posed the initial question. I was also in the second session you mentioned. How funny.

    ReplyDelete
    Replies
    1. I arrived late and sat in the back row ... which is very typical of my shy-introverted self ... next year I will make a point of introducing myself ;)

      So I am excited you commented on this post ... because I would love to know what you decided and how you feel about this topic ...have you decided to continue blogging?

      Delete
    2. Sorry... I meant to say more in my comment, but I had three kiddos vying for my attention so I had to cut it short. I've decided to keep blogging... But I wish I could go back and just use intitials. Someone suggested I go back and change all the names, but lets face it, most days I don't have enough time to shower, let alone go through almost 800 posts. I'm just going to be more mindful of what I say and when Elise is old enough to understand, start asking for her thoughts. I can't unring a bell... But I can choose my subjects and words more carefully now.

      Delete
    3. Btw, great, insightful post... Glad you took the time to research for you made your decision.

      Delete
    4. Thanks for your thoughtful response ... Funny thing I debated whether to use different names for my boys and edit all past posts and decided against it ... Though I used a different analogy ... I told my husband "That ship had sailed"

      Delete
  2. I'm glad you searched you heart, (and the internet!) to make a final decision. A really great post! Make the most of our footprint? CHECK!

    ReplyDelete
    Replies
    1. OMG .. Meri reads my blog too! Love you Meri ... your's was the first blog I read and inspired me to blog too ... Thank You!

      Delete
  3. I watched the session online and felt like I should delete everything! The stories, however, are what I connected with in the first place. The stories led me to find the support I needed from the DOC. Thank you for sharing what you've found.

    ReplyDelete
  4. I was dreading reading this, but love the conclusion! I had a lot of the same blogfeelings at the conference.

    I am SO glad I missed the session that made you feel like your son would not be able to get a job or insurance because of RT1M. Was the point of view of the speaker that in the future our children will need to somehow pretend to not have diabetes in order to be insured/employed? I think our kids will have much bigger problems faking that (for example, obtaining veins filled with different blood before a physical exam?)than our blogs might create.

    What about parents who publish memoirs re their kids'---I don't know---drug addictions? I mean in a hard-copy book from Random House? I'm all for not *humiliating* the child, but...I don't know. There's a long history of parents writing about their children, their children's problems, quirks, misbehavior, disease.

    This has me all agitated, even though your post made me feel better!

    ReplyDelete
  5. I don't, however, have the balls to watch the video yet.

    ReplyDelete
    Replies
    1. Please don't be agitated! You rock ... Are an awesome T1 mom ... And, girlfriend, you indeed have to balls!

      Delete
  6. Great post. I really admire what you're doing. Advocacy is so important.

    ReplyDelete
  7. Great Post! It sounds like you really thought it over, and that's what counts. Keep blogging!

    ReplyDelete
  8. I had to leave the P4DC panel early so I missed the whole part about parents blogging. But I'm so glad your husband had some wise words and convinced you not to take down your blog!! Every voice counts, and I learn so much by reading d-mom and d-dad blogs!! Thank you for doing what you do!

    ReplyDelete
  9. I'm glad you did your research and I'm glad your blogging!!!!
    Xoxo & CHECK!

    ReplyDelete
  10. I think the decision to blog - about anything, or anyone - is a personal decision and there isn't a set "right way" to go about any of it. I'm glad you do what you feel comfortable doing, even as that definition of comfort may ebb and flow. Thanks for sharing your perspectives on this.

    ReplyDelete
    Replies
    1. Not until I went to that DOC discussion did I even consider the difference between PWDs blogging vs D-parents blogging ... Dumb, yes ... But an Aha moment none the less ... Which lead to my soul searching ... Because in the end the very last thing I would want to do is hurt my son

      Delete
  11. I had heard whisperings of this discussion taking place at FFL - thanks for going into some more detail about it. I'm glad you found a way to do what helps you, what helps others, and what feels right.

    ReplyDelete
  12. I think we all waver with this dilemma about blogging. I know I do and I only blog about me!
    BUT... more good has come from blogging than bad so that's a win in my books.

    ReplyDelete
  13. Thanks so much for all the comments! This is a record for me ... And as one wise blogger put it "comments = love" ... Today I feel your encouragement and love

    ReplyDelete
  14. Thanks for talking about this, Dolores!

    I think that, like Kerri said, it's a personal decision and probably will ebb & flow over time. It's a very empowering perspective to think about embracing the digital footprint rather than trying to avoid it altogether.

    Great post, Dolores. Thank you!

    ReplyDelete
  15. Thanks for writing and talking about this process, as it played out for you at FFL and afterward. I disagreed with what Jill said at the session, but really really liked what Meri had to say there. The parents are great, and the stories that are being shared aren't to embarrass or point fingers. Totally a personal choice and it differs for everyone, but that's also a great point someone said at the start of the session about the beauty of social media is that it changes. These decisions change, and talking about these things periodically is probably a great way to assess. So glad you decided to keep on blogging, and love that response your husband gave! Really reminds me of the whole way D has changed over time - embrace and own it, rather than just put it under your foot and hide it. Really like that message on the digital footprint. Great post!

    ReplyDelete
  16. Excellent post Dolores. As an adult with T1, I've thought about issues that might arise because I talk about my diabetes. So it's very clear if you search for me that I have this. But I don't want or need to hide it.

    As a parent I can fully understand wanting to protect my child (whatever the age). Glad you started a discussion on this.

    ReplyDelete
  17. Thanks for the thoughts, Delores (It was great meeting you and Jeff at FFL, btw..) I'm not sure if I really have a dog in this hunt or not, but it occurs to me that we are just now seeing the "first generation" of blogged-about-cwds.

    Our perceptions may very well be changed as this question is explored further, especially when those CWD's take the issue up on their own in social media

    ReplyDelete