Paying the price

Because I’m a glutton for punishment concerned parent who wants to stay informed about things, I subscribe to a Google “autism alert.” It’s a daily email that collects stories related to autism and gives you links to conveniently click ‘n read.

Most days, I give it a scan – every few days I’ll click on a story if it sparks my interest.

And then, there are days like today, when I saw this:

There’s so much to take in, just from the blurb. You have to take it horror by horror. Mother kills son. Mother kills autistic son. Mother strangles her severely autistic son. So she could get rest. She had marital difficulties.

Okay, let me say this right up front, lest I come across as completely morally superior. There’s a part of this that I understand.

Read that again. I understand. To a point. Having a severely autistic child is horrible at times. I’ve written enough here that most of you have at least a general idea. When it’s bad, it can be very, very bad. I know what it’s like to think of desperate measures. I believe I once shared a story about driving Stephen to school while he grabbed handfuls of my hair and yanked with all his might, screaming unintelligibly, and about how I kept thinking that maybe I’d just floor it and head for the next concrete block wall I saw… The mom in this story tried to kill herself but didn't succeed.

So, I get that things get so bleak and so dark and so heartrendingly excruciating that you find yourself wishing it would all go away.

There’s a line, though, isn’t there? As parents we all toe that line from time to time – even parents with “regular” kids. But it’s about reaching inside yourself and stopping before you settle in on the other side of that line. Because it’s a one-way street over that line…you spend too long over there and you’re not coming back.

Here’s where my soul absolutely ached, though, as I read through the story. In one letter the police found in the hotel room, the mom had written: “It is funny. He was laughing when I was strangling him. That is when I knew he was happy. I had to do it because now no one can point fingers at him.”

Dear God. That child, completely unaware, laughed while the person entrusted with his care ended his life. That innocent spirit was so disconnected from reality that he didn’t even know to fight to save his own life. And the mother saw that as an acceptance, as validation of her actions. In my mind I am in that room, listening to the otherworldly laughter that we hear from Stephen all the time. I am chilled to the bone.

So while I understand the pressures, the insanity, the misery, and the utter desolation…children like this boy – the very same age as my own son – who cannot comprehend the world around them must be cared for with the most compassion we can muster. It isn’t easy. It’s rarely rewarding. It’s just damned hard. You don’t get to rest sometimes. You DO have marital problems. But caring for those who cannot care for themselves constitutes a higher calling. We don’t care for them because they ask for help, because many of them have no voice. We don’t care for them because in the end it’s all worthwhile – sometimes it falls short. We don’t love them because they love us.

My son was born into my life and the life of my family, and we are charged with his well-being. That’s the beginning and the end. We may not always be able to provide his care personally; it’s hard to know that now. But, as hard as it is and as exhausting as it can be…what we do, we do because it is right. If character is exemplified by what we do when no one else is looking, then caring for a severely autistic child even when no one is looking counts just as much.

We will pay the price, but we will not count the cost.