Monday, July 15, 2013

Sharing responsibly?

My family just returned home from a whirlwind trip to the Children with Diabetes Friends for Life Conference in Orlando.  A really interesting topic came up at FFL Wednesday morning, and my spunky spirit is dying to dive into it and explore the efficacy of sharing information about our children online.  I have so much to write about this amazing conference, but I had this written at the get go, so I’ll share it today, and dive into the rest of the amazingness in a day or two!

The comment was made during a session:  “You can't feel better if your child feels worse, when you blog about kids with Diabetes.  Parents healing important, but kids 1st!”

I have to be honest.  At first that hurt.  My kids always come first.  I bleed worry for my kids 24/7.  But then I stepped back and said, “Meri.  This person doesn’t know who you are.  This person is sticking up for your kid.  Ok.  I like this person.”

But then there was a whole lotta other part of me that also thought this:

Isn’t my story important?  Isn’t sharing my story helping me AND my children?  Isn’t it giving my children a better mom?  Aren’t I a better person because of it?  Am I maybe…MAYBE helping others be better parents by what I’m sharing? 

And then…am I being selfish sharing the story just to make me feel better? 

Will my children grow up to resent my sharing?

Do I share too much?

That is something I have to examine further, I am sure.  But before I start thinking logically, here is what comes to mind emotionally:

What if there is a 11 year old boy who forgets to check his sugar at lunch every live long day? 

What if I blog how my 11 year old often forgets to check his blood sugar at lunch? 

What if some people comment on my blog saying ME TOO!

Wouldn’t that help both me and these commenters think, “Hey.  Maybe his is normal.  Maybe my kid isn’t totally mental.  Maybe he’s just a normal 11 year old who is too busy thinking about basketball and youtube videos to remember everything.  Maybe he is burnt out.  Maybe I should cut him some slack!  Maybe it’s ok…we can find a solution together rather than using blame!”

Is that hurting anyone?  Is that hurting my son?  I suppose it’s all in the delivery.  Because I can promise that in that blog post I would only be trying to find a way to empathize with my son’s point of view.  I would only be trying to see his side of things, and doing my damnedest to find the solution that would be easiest for him.

I try hard to be mindful of my boys and their feelings.  I always imagine them reading my posts years later.  I agree that their stories are their own to tell, but they are innately part of mine.  And if I didn’t share, I would be even more broken than I am.

If I learned anything from my experience at FFL this week, it is this:  Support is paramount to a healthy you when it comes to dealing with a chronic disease.  This week my heart broke again and again, looking into the eyes of mothers that are alone.  Mothers who have no one else to talk to.  Those who handle the stress of family and diabetes all on their own. 

These mothers need me.  They need the other parents that blog online to know they aren’t alone in all of this.

I think about the person I would be without the online community.  It isn’t a pretty picture.  Unfortunately, it is easy to imagine, as I was alone for so many years.  Almost 10 years and three diagnoses before I found the parent blogging community…before I found facebook, twitter, chat rooms…all of it.

And I was tired.  And I was cranky.  And I was full of blame and anger.  I second-guessed my decisions all the time.  I never thought the peace would come!


I’m full of hope.  And understanding.  And empathy.  And I have that peace I longed for lo those many years.

That came from this blog.

I have a wonderful relationship with my boys because I have shared.  Because I have been able to scream out the woes of a 400 blood sugar on my screen and then in the next moment turn from my computer screen, look into their eyes and smile, only to say, “No worries.  We can fix that.”

I need an outlet separate from them.  I can promise that they are happier children because I can pour out all my emotions here, and then resume with our own kind of normalcy in the home.

I have certain guidelines when I blog.  If it is personal, I ask them if it is ok to blog something. Sometimes they say no.  And I respect that.  Always.  My nine year old is too young to answer that question, so err on the side of caution.  But I never blame my children.  I never share something damaging about them.  I don’t even use their names.  Hell, my boys walk on water, you all know that! 

This expert in the front of the room who said that maybe blogging generally, rather than blogging about specific stories…I get where she is coming from.

But more than ever, I believe it is the specific stories that heal us.  It is the specific stories that tell us we are not alone.  There is power in those stories.  There is learning, and peace that can be gleaned.

Isn’t that worth sharing?

I know it all comes down to doing what I feel is right for my family.

And I know.   I KNOW…

This is right for our family.  Sharing our stories helps others with their stories.  And it helps me look inside myself…in those deep dark corners where my angry days sit like trophies.  Those corners that I tried for so many years to deny even existed.  Those corners that I can now clean up, and rearrange into something more beautiful.  Something that looks more like love.

My boys’ journey is hard enough.  Don’t they deserve the healthiest mother possible to rear them?  Being raised by Momma Hope has to be better than being raised by Momma McBitterson.

Writing has given me the power to change our story from one of pity to one of beauty.

And that makes all of THIS, completely worthwhile. 

(I am of the mindset that everyone’s opinion is of value, and we don’t all have to think the same.  I welcome all comments on this subject, but ask you not make comments specifically about my blog and my family until you have read some, a few? of my posts, and know the kinds of things I share, and how I share them.  Thank you!)


  1. Expert? I'm not sure what kind of expert this person was, but they are certainly not a parent of a child with Diabetes are they? I can see where spreading posts all over FB may be "hurtful" to our Kids.....but blogging in the DOC where people come for support and understanding? I see Nothing but beauty too, and us parent ARE the experts if you ask me!

  2. I love reading your blog because I can see that I am not alone. I am fortunate, in a sense, because I found a wonderful community online that can help me be a better D mom, a year and half after my son being diagnosed. The first blog I found was yours, and it had helped me always see the what I go thru is normal and that I am not alone. Thank you for sharing and it was great getting to meet you at FFL!

  3. As a "newbie" (thank you SOOOO much for that entry btw) I look to your blog on a daily basis. I read about your journey and it helps me to put ours in perspective. I see hope in our future instead of tears. Thank you Meri!!

  4. I didn’t even know what FFL was, until I just read it in this post! (I saw it referenced on someone else’s blog and meant to look it up). So your blog helped me today, again.  We have been doing this diabetes thing for two years now. I turned to blogs as soon as we came home from the hospital. Yours was one of the first that I started regularly reading, and I have a handful that I keep up with. I am so very grateful to you and to all of the families who choose to blog about their experiences. General posts are wonderful; you have so many beautifully written posts. But the specific stories from everyone have been and continue to be invaluable. We are continuing to learn. I feel as though I am beginning to come out of a fog. I recently decided to begin my own blog (two posts in, so I haven’t gotten very far yet), if for no reason other than to document things for ourselves. We have also decided to walk in JDRF’s Walk to Cure Diabetes in October. I am in awe of those who were able to do things like this shortly after diagnosis. Thank you for blogging. This is stressful. We do feel alone. Blogs have helped me feel a little bit less so. Thanks to you, and your boys, for sharing!

  5. I don't know where I would be without you and the rest of the DOC sharing. Actually, I do, and it scares me.

    So good to see you at FFL... let's do it again soon!

    Looooooove YOU!

  6. It's sort of like the oxygen mask thing in the airplane. You put on your own mask first, so that you can help your children. It does them no good if you pass out! It is EXTREMELY important for you to take care of your own feelings, and you can't use your children as a sounding board, because that is not what the parent/child relationship is all about. So I have exactly no problem with your blogging and crying and laughing, and being angry, or being happy, or whatever you need to express here. Then, as you say, you can present a caring, positive attitude toward your sons (all 4 of them), and not let them worry about hurting you because they misinterpret your sadness as something they did. You will have a MUCH better continuing relationship with them this way. I trust you to not reveal anything that would hurt them, and I say, you go girl! :-) <3

  7. Excellent as always, keep up the good work and keep the stories coming. they inspire, educate and entertain us all.

  8. Without sharing, many of us would be floating around in darkness. I did that for ten months. I hated it and so did my family. I can't imagine you doing it for 10 years.
    One comment, from someone who really doesn't get it, can't stop us from being open and honest about this life. Sharing our stories are all part of advocating... our stories are not just the perfect picture hanging over the mantle. Sometimes they have blood drops and sometimes they show victory, either way, both stories are important.

  9. "These mothers need me." ABSOLUTELY!!
    Not sure about this expert you speak of.... Have they been in our shoes? I discovered the DOC and blogs through an email from the ADA. It had a link to Joanne's video about what can a type 1 child can eat. After that I found many other blogs and have learned SOOOO much. The DOC is invaluable and beyond!

  10. I thank you for having this blog. My daughter was diagnosed six months ago and if it were not for you and other members of the DOC I would still be the "basket case" I was that first month. I feel that because of the DOC I am better able to care for my daughter.

  11. Everyone has to do what's right for them and if that means you 'blog it out' so you don't totally lose it, then by all mean type away!!
    I know it's helped me tremendously to read and to blog because it helps me remember I'm not alone in this crazy life.
    Love and Hugs and all that good stuff!!!

  12. I was at the same session on Wed morning and left feeling pretty horrible about myself and quite certain I would take my blog down as soon as I got home. I am home now and my blog is still up ... Though honestly I am still struggling with my guilt ... But I think you have just proved the power of the DOC because after reading this post I feel soooooo much better. Thanks!

  13. This is so interesting to me, because as a PWD when I blog it's all about me me me so it's my own choice to share. I know I can never really understand what it's like as a parent blogger, but I can say that from reading this post it sure sounds to me like you're doing it right! Love you!!

  14. I agree with you. It's the specifics... knowing that someone else forgot to pack extra pump supplies or messed up a bolus or whatever... that help us d-parents know that we are not alone. I don't think a generic story about someone's A1C was would have the same meaning.

    Yours is one of the blogs that I think really does it right. I can't think of anything you've posted that your boys would be embarrassed by. There have been other d-blogs I've come across that I think "Wonder how that child would feel about that being posted?".... but then again, I quite often think that about pictures/stories people share on Facebook, and that has nothing to do with diabetes. Sometimes I think people just overshare. ;)

  15. My daughter is old enough that every blog I write is reviewed by her first. She has almost never balked. If she ever does, I acquiess. Want to see if blogging honestly is helpful or hurtful? Go back to my old, old guest blog on diabetesmine about "teens and freedom." Read the comments. It was that incredible experience that made me realize blogging was a good thing.

    and PS You are the best.

  16. As a PWD who blogs about (my own) diabetes and also as the parent of a little girl, I saw so many sides to this discussion, and I'm still processing. But, at the end of the day, our individual opinions about other people's decisions don't matter - it's what WE decide to do, and the choices WE make that we need to feel comfortable with, and to own. No one answer covers it for everyone. Everyone's comfort levels vary, as do their participation levels. YDMV, but your SMMV (social media may vary) as well.

    But I will say, having sat in that session and also having had many excellent discussions with the HCP who was quoted, that they are empathetic, and a huge supporter of PWD and their families. One moment of disagreement doesn't disregard the positive impact they have on this community, IMO.

    Thanks for writing this, Meri, and for speaking your mind in the session. xo

  17. I have learned so much by reading this blog and others. All I can do is thank you for everything you've written. It really is helping.

  18. You're on Best of the 'Betes Blogs today:


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