Two parents, one autistic toddler, half a clue, and just enough light to see by
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Gloom, Despair, and Agony On Me

While I’m trying not to act like the above title (10 points if you know where it’s from. 20 if you sing it!), it’s a little glum around the ol’ Flashlight house these days. We’re still trying to work our way through the stages of grief everyone talks about – and I’m stuck in the anger/despair part.

Really, why does this have to be so hard? I, like all parents, want my child to have an easier life than I have had. I want him to have the good things from my life: to grow up loving to learn, go to college because it’s just what we do, find a wonderful partner like I have, and have beautiful children that I can spoil someday. It reminds me of that line from Steel Magnolias where Julia Roberts’s character says, “I want to sit on the front porch, covered in grandchildren, and say ‘No,’ and ‘Stop that.’” I want him to skip the bad things…

Instead, his life will be immeasurably harder than mine. He will have to work harder at EVERYTHING than I had to. Everything (ok, except peeing while standing up, which I still can’t do unless in the shower… it’s OK, I’m the one who cleans the bathroom).

This changes our lives for the long term. It changes our plans for ourselves (second baby? Moving to the mountains someday?) and our plans for him (doctor? Lawyer? POTUS!?).

Interestingly enough, it doesn’t change our lives for the short term. J-man will still have the same therapies he had before, since he was already in developmental, occupational, and speech therapies. He will still attend the special preschool. He will still pull us to the back door to go out and swing every day. He will still continue to delight us with his smiles and giggles and sense of mischief. He will still be the wonderful boy we know. He will not know the difference that 3 letters can make.

We will though.

March 21, 2008   1 Comment

Reflections on Good Friday

In its own way, it seems fitting that today is Good Friday. There are symbols and themes that go along with this day that speak to how I feel about everything going on with us.

People either skip over Good Friday on the way to Easter or don’t bother to contemplate what that Friday was really like before anyone ever knew there would be an Easter.

It’s not about what will happen but what has happened and what that feels like right now.

Good Friday is about believing that things have turned out in the worst way you could imagine. It’s about once having all of this hope and then feeling like everything fell apart. It’s about being told it would happen and not believing it until you saw it with your own eyes. It’s about people’s entire view of the world and their role in it one day abruptly ending, left instead to wander aimlessly and reinvent your life. It’s about believing you were promised one thing and then having it taken from you. It’s about feeling you’re going to be shunned from this day on by society. It’s about believing from now on, you’re on your own.

It’s about the story not ending like it’s supposed to.

I think most of theology can be summed up in one word - ‘but’. I’m a writer, so I tend to see things through the lens of language. Today, I see God as the Great Conjunction.

I once believed our lives would follow a certain path, but instead a different one lies before us.

On that first Good Friday, everything fell apart, but the sun came up that Saturday, and then that Sunday, and then that Monday, and every day since.

One of the most powerful forms of speech in the Bible (depending on the version you read) goes like this: “You have heard it said that… but I say unto you…” Things will be transformed, but we’re not there yet. I’m still carrying around a lot of anger.

Good Friday is about being in the moment before the ‘but’, long before there is any hope that it will come. I may be stuck on Friday for a while.

I completely broke down Wednesday when I was giving J-Man a hug and said “I-IIIIIII… Looooooooooove” and then he gave me a kiss. I barely got the “you” out before I choked on tears.

I believe J-Man will be a living example of how to put things back together again. As frustrated as he gets, I know his stubborn, determined streak. If there is a way, he will find it. Right now I’m having a hard time believing in much, but I know I believe in him. And for now, that is enough.

If he could talk, I could see him saying, “You may say that there will be things I can’t do, but I’ll have something else to say about that.”

March 21, 2008   No Comments