Welcome to everyone stopping by from the 2011 Ultimate Blog Party!

My name is Joy, and I am a writer who blogs.

I’m a little different, and I’m finally ok with it.

Since I first learned to put letters together into words, writing has given me freedom to be my most real “me.” For some reason, speaking the total blood-honest truth is almost impossible. But writing it… that I can do.

See, conversation is always impromtu, and I am clumsy. I trip over and fumble words, jumble my thoughts together, stop short for fear of saying the wrong thing, or blurt too harsh or completely thoughtless. Then I lay, staring into the dark, wincing again at how boorish or furtive I was that day.

Putting pen to paper, or keys to screen, allows me to pour out my soul one word at a time. Then, I edit until the words waltz and harmonize (at least, I get closer to that ideal). Writing gives me confidence to lay down my “Everything is Fine” false front and be genuine: depressed, sad, silly, confused, angry, sarcastic, hopeful, tired, crazy, thoughtful, hurt. This woman is all of those things every day.

Five and a half years ago, I started a blog because I was stuck at home with a disabled and often seriously-ill child. Our days were full of hospitals, medications, therapies, dirty diapers, vomit, and exhaustion.

• I wrote the painful fearful truth of those days so they wouldn’t fade into the fog of fatigue.

• I wrote to celebrate the tiny successes we fought for, the ones everyone else missed because their kids had bodies that cooperated with them. Successes like learning to drink from a straw after practicing for three long years. These came along just often enough to keep us going.

• I wrote so that onlookers, who tended to say unhelpful things like “I don’t know how you do it” and “You’re a saint” might better grasp the imperfect way in which we navigated our dirty, exhausted, semi-insane reality.

• I wrote because I needed something creative, something expressive, something completely other to reassure me that I hadn’t completely disappeared beneath the murky waters of chronic uncertainty.

Then, our special little girl died, two and a half years ago. While to the five of us who were left, our lives feel foreign and ill-fitting, to the average onlooker, our family looks normal for the first time ever.

After all, burying your child isn’t like getting your hair colored or buying a new pair of shoes. You can’t tell by looking.

But I felt it. Every relationship felt awkward, like we were all walking on egg shells around each other. I didn’t know what to say or do. So I wrote about my grief.

I still write about grief today, but it’s how I appreciate things I would have taken for granted if I had never had a disabled child or buried a child. Typical parents complain about silly little things like the bus schedule or a teacher giving a B or the inconvenience of all the extra activities their child is in (that they signed him or her up for!).

Sometimes I want to tell these complainers to be thankful their children can walk, talk, run around, and have never seen the inside of the hospital, let alone an operating room. I want to point out that my daughter never got real grades, did occupational and physical therapy for extra-curriculars, and died at age eight. And we were proud of her.

But that would be like pulling the pin and tossing a live grenade into a party. So I share the perspective I have here, blogging about going forward.

I’m also a Christian. I have to admit though, that I am ashamed of much that has been done in the name of Christianity. At first glance, I might look like one of those characterized more by what they hate than by what they love… I grew up in a Christian home, was home-schooled for ten years (loooong before it was “normal”), graduated from a conservative Baptist college, and married a truly-amazing Christian man.

Like everyone else, I’m on a journey and sadly have not yet arrived. May I suggest that slapping labels and making assumptions oversimplifies?

• I love Jesus and pray to be more like him every day (even though I fail miserably every day — just ask my kids).
• I work outside my home (and inside it too).
• I vote both sides of the ballot.
• I love a cold Sam Adams on a hot summer day.
• I read the Bible and the Huffington Post; I listen to 80s hair bands, some Christian music (but not Christian radio – it makes me ill), and NPR.
• I believe in Truth, but I don’t believe we can ever have all the answers, nor do I believe everything boils down to simple black and white, yes or no, right or wrong.

My faith has undergone an extreme makeover these last several years. At first, it was so unsettling that I kept up a false front, hiding my questions, my doubts, going it alone.

Reading and talking with others gave me courage to start asking questions and talking about some doubts out loud. And, slowly, I have begun writing about them.

I battle depression. On the heels of our daughter’s death and some painful damage to relationships (unrelated to her death), depression set in. I hid from it for months, denying its existence. depression. But it grew and started eating away at my relationships at home and work.

My husband and I realized that I needed help. Two years later, I can see light. And I’m talking about it. I know how important it was to admit that I needed help, and how difficult it was to actually reach out and ask for it.

Why?  Why talk about things most people hide?

Because other women lost people and dreams and hope. We have crashed head-on into the reality that life often sucks.

And we all wonder if we are alone.

I write because we can support one another, even if it is purely through messages online. I write to make a safe place to talk about the things we hide.

We can find the strength to keep going, we can find hope, but only if we’re honest, transparent, vulnerable, and accepting of one another.

Updated for the Ultimate Blog Party 2011 from my archives

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Enough about me — I want to meet you! Why do you blog? Or, why do you read blogs?

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