Why I talk about my sick child

I’ve been seeing more and more “medical-world” parents who are blogging about their children…not just with cancer but all over the special needs spectrum…and its fascinating to watch and read.  When we were first diagnosed, the sites I saw were all from the awesome CaringBridge, a tool that offered parents a free site to use in updating about whatever was going on in their lives…it’s easy, simple and for a parent in crisis, it is perfect.  We opted not to go that route, but I have a list a mile long of CaringBridge sites that I visit daily to check on “my kids”.  I love CaringBridge for offering that opportunity to know what’s going on and to leave messages of support.  I know the comments on our site have often brought on tears because they were filled with encouragement and love and just what I needed to hear WHEN I needed to hear it.

Over the past two years of writing about Peyton, our family, our friends, all the ins and outs of our lives, I’ve heard so many comments….“I could never write like that”…“I only tell the facts about chemo”….“I don’t want everyone to know all the emotional parts”. That’s what works for them.  We’ve done what works for us.  I feel so blessed that we have readers, that we have people who come back day after day (or week after week, whatever!) to be a part of our journey.  I’ve made friends through this site, I’ve offended people, but I’ve always told the raw, painful truth about what cancer does.

I guess I never thought of what I was doing as “blogging” or that I was a “blogger.  They were just my updates, no title to it, no big scheme.  Then I started reading the blogs out there, especially the “mommybloggers” (yes, that’s a real word in the blogging world, they have their own conferences and everything).  It was a WOW moment, these are my people too!!  I read post after post, seeing that there was this whole community of people who freely talk about their lives, who openly share all the good and bad that happen, even people who work to find the humor in their moments and share those too.  They’re witty, they’re endearing, they’re creative, and they’re WRITERS who just happen to have a different medium. It was awesome. It was like my mothership had landed.

Self-conscience: I don’t fit in with the cancer-update world, I’m too wordy and I go on and on about the dishwasher, which has nothing to do about Peyton.

Me: It’s ok, people still read it because it’s real life. What about that mom that said no one had ever said it the way she felt until that one post? What about the new cancer moms out there that don’t understand we’re all a little crazy?  Remember when that one person said you made her laugh while sitting in the hospital? Isn’t it ok to just put it all out there?

Self-conscience: No one else is talking about this other STUFF, stick with the facts and just the facts.

Me:  But I NEED to write it this way.

Blogworld: HEY! We’re over here!  We all do it. You don’t have to do it ANY one way. Just find your voice and use it.

(If you ask my friends, they’ll verify that often those inner monologues do sometimes spill out into my outside voice.  I guess they find it alarming.)

Something that fascinates me is that I’m meeting mommybloggers and they are able to maintain the balance between blog-about-family and platform-for-powerful-advocacy.  One that I have become addicted to is To Think Is To Create, a blog of a mom that has 3 boys who are all autistic.  I see her connecting with her readers through her sincerity and her humor and in the meantime teaching them what life is like in her shoes, raising awareness of what those boys go through and what she goes through as their mom.  You can’t leave her site without knowing more about autism than you did before.  Not in a force-fed way, but in a gently administered spoonful of knowledge that lets you digest slowly on your own.

I’m all “I want to be her when I grow up”.  THAT is what I wanted when we started this blog, I didn’t know it at the time, but I did. I wanted to be able to open eyes to this life, to be an advocate for MY child, to get past the idea that it’s not ok to say “I’m afraid my child’s going to die”.  I’ve had those emails and comments made that I shouldn’t change things, I am exploiting my child’s suffering for the entertainment of others.  I don’t think that when Peyton suffers ANYONE is enjoying it….and if I thought for a moment they were, I’d be the first to hunt down their IP, trace it to their home address and beat the ever loving snot out of them….because that’s how WE roll.

What’s the whole point of this?  I don’t know.  Just things I wanted to say.  I’m excited to see the moms that are branching beyond what used to be the lines they felt shouldn’t be crossed and letting the world in.  Because they are going to be so vital in making the cancermommyblogger HEARD and UNDERSTOOD.