Blogging always ends up feeling like a job, because no matter how much you may enjoy it, the feeling of obligation seems to be inevitable. Over the past three years I’ve witnessed too many people feeling obligated to the point it’s crippled them and they’ve left for days, weeks, months at a time. I was naive to believe that wouldn’t happen to me. I! Love! Blogging! I! Can’t! Imagine! Not! Blogging! I’m! Going! To! Blog! FOREVER!!!!1!!!!!

So not true.

This past summer, when things went to shit for me – both mentally and personally – I found myself turning to my blog less and less. I felt discontented with the idea of sharing my low points with anyone who happens upon this space. I was concerned that people I thought loved me would be using my words against me behind my back. I thought that there would be emails and chat sessions going on hedging bets on when I would completely lose my shit.

Narcissistic? Yes.

Self absorbed? Yes.

Paranoid? Yes.

Right? God, I hope not.

That’s the joys of putting oneself out there in The Google Cache. It’s a fact of life for a blogger that someone will not like what you said. It’s inevitable, there will be emails, links, chat sessions and DMs about you at some point or another. But, when I was tumbling into that vortex of darkness, I wasn’t okay with that. I contemplated many times pulling this site down and not looking back. Even though there is support in this community (and I am eternally grateful to those whom have been here, willing me on) there is a very dark side to blogging. A dark side which can stifle and rob a person of their will to write. I’ve bared witness to many people share their darkest moments online and seen how the mob mentality can alter the winds of support gravely. Suddenly people are quick to change their minds and begin speculating that it’s all a “show”; for traffic.

We’re a narcissistic bunch, us bloggers. Most of the time, we’re writing with the intent of entertaining a group of people, but some fail to realize that not everything is shared for the sole purpose of an extra couple hits. Not everyone is thinking about how sharing through their difficult times will garner them a new follower or how it will affect an Alexa rating.

For me, the thought of it being assumed I was blogging my difficult times for some traffic seized my ability to put my feelings into words. I didn’t want to be the site where the drama seekers came to find their next train wreck. So I decided I wouldn’t write it out any further; I wouldn’t continue to offer tickets to the show. People would just have to speculate whether I made it through this.

I didn’t write, and you know what? It’s made it worse.

I may not be a fantastic writer, but for as long as I can remember I have written out my feelings, my stories and kept a journal. I’ve forgone the journal for an online version and still, I wrote nothing. Hell, nevermind that, I couldn’t even complete a paragraph and save it as a draft or private post.

I froze.

Not only did I stop writing, I stopped reading. I lost touch with a lot that’s been going on and I felt feel guilty. The Dreaded Blogger Guilt.

The Dreaded Blogger’s Guilt includes side effects of: regret for having 5000+ unread feeds and hitting “Mark All Read”; obsession that every post written on the whole interwebs is about YOU! (see Blogger Narcissism); irrational fears that you’ll never ever write another single entry ever again!

See, NUTSO.

It got to the point I was in tears Monday night (while watching Dog the Bounty Hunter) after I’d obsessed for so long about the fact that I haven’t written anything; and not that I hadn’t written anything for you (I love you, you know that, but this is about me right now m’kay?) but that I couldn’t even squeak out a measly paragraph of anything remotely discernible. (Seriously, ask Karen. I sent her about 1000 words of gibberish talking about puzzles and bitches. It was NOT pretty, and she totally called me on it too. LOL)

But now I’m hopefully back. That shit that’s been eating at me is no longer relevant because I have no control over it and therefore I will not let it get to me one second longer. I am moving forward.  I will continue writing and dammit, I WILL be able to poop again.

Side note: Is it just me, or do you find that mental constipation coincides with physical constipation? No, just me? Alright then, moving on.

I’m back bitches.

Sitting at the red light, the boys in the backseat, I glanced in my rear view mirror to see Carter looking out the side window at the passing cars. He’s gotten so big, in what seems like little time at all. He’s reciting days of the week, he knows the months of the year, and can spell his name. It all seems to have happened in a blink of an eye. He’s a funny and wonderful kid, most of the time – because hello? He’s four – but the stuff that comes out of that kids mouth sometimes? Comedic gold.

As we waited at the light he said, “Mommy? I love Hudson.”

“Awe, that’s sweet Carter. You’re a good big brother,” I told him, “You like being a big brother, don’t you?”

“Ya. I like Hudson.”

“Would you like to have another baby brother? Maybe a baby sister someday?” I asked

“Nope. Not today Mommy,” he replied still looking out the window.

“No, not today Dude; someday.”

“We can’t Mommy,” he replied matter-of-factly.

Curious I asked why we can’t. Seriously? When kids say stuff like that it freaks me out. Do they know something we don’t know?

“No, we can’t. Because the Halloween store close soon. Halloween will be over.”

As I reach for the scattered pieces, bringing them back to their rightful home, there’s a wind threatening to carry those thoughtfully sorted piece slightly out of reach; approaching with vengeance, it tries to steal everything. Unrelenting.

I stand my ground. I can’t lose my pieces again. I hold them tight, begging the wind to leave them intact, but it doesn’t listen.

The wind howls through me, carrying everything away. I stand there watching, unmoving, as they are scattered carelessly about. I try to remember just where those pieces fit. Where they belong. I can’t.

Silence.

I imagine what it was like to be whole. I want that again. I’m afraid to gather them up again in case they are ripped from me. I can’t fight any longer, but I can’t give up.

The wind natters at my back. I try to ignore it in hopes that it will leave me well enough alone as I slowly collect my dispelled pieces. I protect them fiercely this time. I can’t afford to lose them again. The wind won’t defeat me.

I am re-building. Stronger.

:::

I’ve taken a leave from this site over the past two weeks completely by chance. I’ve been really busy with work, our new house and my children. From an unexpected trip to Pittsburgh, writing a number of reports, to re-tiling our main bathroom, pruning trees and closing our pool I’ve had very little time to reflect and write (not counting my mindless banter of course).

• Thanksgiving weekend came and went with Mike working everyday. I spent time with my family and my kids for three days, without my husband. Needless to say, I do realize now just how much help he really can be when he’s here.

• I traveled to Pittsburgh and back: I didn’t get lost, forget where I parked my car or get asked a million questions by customs.

• I’ve gotten a prescription for new meds and a referral for a sleep study. I’ve started seeing a chiropractor three times a week.

I’m trying to get my life back on track. Just hoping the wind stays at my back and I can keep it together.

When I received Kevin’s request for support, I knew immediately this was something I would do. Not only because he’s a friend but because I believe that no matter what, no child should ever suffer. Ever.  The least I could do was offer up this space.

Kevin blogs at Always Home and Uncool. He has asked me to post this as part of his effort to raise awareness in the blogosphere of juvenile myositis, a rare autoimmune disease his daughter was diagnosed with on this day seven years ago. The day also happens to be his wife’s birthday.

:::

Our pediatrician admitted it early on.

The rash on our 2-year-old daughter’s cheeks, joints and legs was something he’d never seen before.

The next doctor wouldn’t admit to not knowing.

He rattled off the names of several skins conditions — none of them seemingly worth his time or bedside manner — then quickly prescribed antibiotics and showed us the door.

The third doctor admitted she didn’t know much.

The biopsy of the chunk of skin she had removed from our daughter’s knee showed signs of an “allergic reaction” even though we had ruled out every allergy source — obvious and otherwise — that we could.

The fourth doctor had barely closed the door behind her when, looking at the limp blonde cherub in my lap, she admitted she had seen this before. At least one too many times before.

She brought in a gaggle of med students. She pointed out each of the physical symptoms in our daughter:

The rash across her face and temples resembling the silhouette of a butterfly.

The purple-brown spots and smears, called heliotrope, on her eyelids.

The reddish alligator-like skin, known as Gottron papules, covering the knuckles of her hands.

The onset of crippling muscle weakness in her legs and upper body.

She then had an assistant bring in a handful of pages photocopied from an old medical textbook. She handed them to my wife, whose birthday it happened to be that day.

This was her gift — a diagnosis for her little girl.

That was seven years ago — Oct. 2, 2002 — the day our daughter was found to have juvenile dermatomyositis, one of a family of rare autoimmune diseases that can have debilitating and even fatal consequences when not treated quickly and effectively.

Our daughter’s first year with the disease consisted of surgical procedures, intravenous infusions, staph infections, pulmonary treatments and worry. Her muscles were too weak for her to walk or swallow solid food for several months. When not in the hospital, she sat on our living room couch, propped up by pillows so she wouldn’t tip over, as medicine or nourishment dripped from a bag into her body.

Our daughter, Thing 1, Megan, now age 9, remembers little of that today when she dances or sings or plays soccer. All that remain with her are scars, six to be exact, and the array of pills she takes twice a day to help keep the disease at bay.

What would have happened if it took us more than two months and four doctors before we lucked into someone who could piece all the symptoms together? I don’t know.

I do know that the fourth doctor, the one who brought in others to see our daughter’s condition so they could easily recognize it if they ever had the misfortune to be presented with it again, was a step toward making sure other parents also never have to find out.

That, too, is my purpose today.

It is also my birthday gift to my wife, My Love, Rhonda, for all you have done these past seven years to make others aware of juvenile myositis diseases and help find a cure for them once and for all.

To read more about children and families affected by juvenile myositis diseases, visit Cure JM Foundation at www.curejm.org.

To make a tax-deductible donation toward JM research, go to www.firstgiving.com/rhondaandkevinmckeever or www.curejm.com/team/donations.htm.