Loss, Pain, and Ramblings

And then there are the days when I look back at some of what I've written here and feel like a fraud. Days like today.

Last night I was online looking at some autism stuff, and I only meant for it to be for a few moments before I hung out with Dan, but I was looking through this message board and couldn't seem to tear myself away. I don't know what I was looking for, exactly. Well, this woman had said her son had gotten a certain score on this particular autism assessment (the acronymn is CARS) and I remembered seeing that in one of Ethan's reports somewhere and not knowing what it meant. So this person went on to say that a score of under 30 indicates no autism, 30-36 is mild to moderate autism, and 37 to 60 is severe autism. I rushed to find Ethan's report. His score was 36.

Ugh. By the slimmest of margins, he missed being defined as "severely autistic." This got me, and got me bad. While there was a part of my brain that knew Ethan must be more than mildly autistic in order to be diagnosed so early, I still kind of kept it in my mind that he was mild to moderate. Not moderate bordering on severe.

After that point, there was no hanging out with Dan last night. I sunk low and then lower. I'm still low, although my feelings are all over the place. I've done more obessive internet searching. I found that kids do tend to drop a few points on the CARS scale as the years go by. And therapy, if the child's IQ is over 70, can be effective in bringing that score down, too. So then I started trying to figure out what Ethan's IQ is, but of course didn't know how to do that. Somehow, all of this irrationally seems better if he's just a "little bit" autistic. Then throughout all of my searching for answers that aren't really going to make me feel better, I kept seeing Ethan's smiling face, so trusting. Just love him, another part of me was saying. Stop this and just love him for the cute little guy that he is. Then I began to feel horrible for letting him down, for being disappointed.

In the midst of all that I began to feel angry at the world. Not at God this time, because I've spent enough time yelling at Him for most of my life. No, I was mad at the calm and collected people who diagnosed him in that stupid drab gray room and mad at every parent yelling at their "typical" kids in the store over idiotic stuff. I was mad at plastic families on TV commercials flashing pearly white smiles as they oohed and ahhed at Disney World. I was mad at my brother's family and parents soon to be relaxing on a beach in Florida and at people doing everyday things without the hugest of burdens on their backs.

I kept seeing every dream I'd had for Ethan, the dreams we subtly dream from day one and only realize once they've been ripped away...in my mind I watched those dreams crash to the floor like a tower of blocks. Oh look! There's the marriage block. There goes me dancing with my son on his wedding day. Crash. There goes the grandchildren I won't have. There goes the college degree and fancy-shmancy job. Crash. There it all goes. I didn't realize how much I was still holding out hope, when I came across the stupid 36.

That's not to say all hope is lost. To be honest, right now I don't know what to hope for. These things seem shallow, yet I mourn them just the same. Does that mean Ethan's life is of less value if he does not achieve these things? Of course not. Yet I mourn. I cry and cry and have these weird feeling of wanting to be alone, yet wanting to be with people because I feel so alone. I miss my friends. I want to cry on someone's shoulder, yet no one I know truly understands. Except my mom, but if I hear Andy and Ethan mentioned in the same breath one more time, I'll scream.

So here I am, the side of me that rears its ugly head when I'm not having deep spiritual and psychological insights. The side my poor husband has to put up with more often that not.

Some people, maybe some of my Christian friends would say, "But what about prayer? You can believe for Ethan's healing." And it's not that I don't. I know God can heal today. In fact, there's a song by Jason Upton I've been playing for Ethan lately, and he loves it. He's starting to fill in words for me. It goes:

All things are possible when we realize
All things are not as though they seem
All things are possible when we realize
The truth is not trapped by what is seen on the outside
So don't ever give up
And don't ever give in
Don't setttle yourself for the widsom of men
Dispensational lies -- they have us hypnotized, compromised, but one-dimensional eyes,
They will never see the truth

I'll bop around in the car or in the house when I'm in a lighter mood, and hum the words and there is a part of me that believes them. There's just another part that knows that God doesn't always take the healing path. In fact, more often than not in these times, he doesn't choose to heal. And even if that's just because of a lack of people's faith in the miraculous or in His power, all I know is that I HAVE to learn how to live a joyful life, even if the answer in Ethan's case is NO. That is what I'm having trouble swallowing right now.

I think many times those of us who are believers have dreams and plans and ways we order our lives, and all the while we say we trust in God and he's our "Lord," we still maintain this illusion of being in control. For whatever reason, some of us aren't tested in this area. Some people get to keep playing the game. Some people get to keep giving God lip service while enjoying life on their own terms. And I think some of us who do believe in divine healing are actually, without realizing, wanting a miracle so we can get back to living our lives the way we thought it should be. I know that's how I feel right now. At least I'm being honest. That's why all of this is so ugly. That's why I could write and write today and yet never feel as if I've resolved a thing.