“Our first son suffered a neck injury during delivery and was born paralyzed,” I posted on Facebook. “The first few months were touch and go. This song got Deb through that first year with Sam. What song got you through a tough time?”
And then I attached a link to Whitney Houston’s I Will Always Love You.
The first response was, “Maaann. That’s a hard one.”
The next included some generous words. Something like, “I’m so sorry! I had no idea!”
There is a Philip Roth quote about comparing miseries. I had a sudden fear that I might seem to be trying to elicit sympathy. Like I thought I had an especially hard road.
I read a post very recently about a woman who drove around all day with her kid in the car. She couldn't stay at home because the kid wouldn't have it. She couldn't have anyone over because her kid wouldn't have it. There was something wrong with the kid.
(Oh, you can’t say that! There’s nothing wrong with her child! Her child is a blessing! Every child is a blessing!)
I’m sorry. Let me put it this way:
This woman had a kid. Which was a blessing. And, as Warren Zevon might say, the kid's shit was fucked up. Which wasn't so much of a blessing. The symptoms make it seem like autism. But I’m not sure that’s what the problem is. She posts on Facebook that he has been beating himself and her all morning. (Beating himself. And her.) Now it’s late afternoon and she’s been driving him around in the car all day while he screams and shrieks. She says it pains her that she can’t participate in life. She feels like she’s in prison. She takes pictures from the car. People heading to church. A ballerina in a yard. Someone stepping into a convenience store. Normal people doing normal things.
Elsewhere online, there’s been an uproar regarding a woman who tried to kill herself and her autistic child. She did not succeed. Her husband left her because apparently he was pissed off about the suicide / murder attempt.
(How could she do that to her child?!)
(She should do it to herself, but not her child!!)
(He had every right to leave that crazy bitch!)
Lots of parents have succeeded in killing themselves and their intellectually disabled children. Opinions don’t matter to them anymore. I hope to avoid that particular scenario. I try not to be too brittle. I try to roll with it. There came a time ten years ago, on the edge of breaking, when I needed to accept the idea that Michael, my third son, would not be cured.
(I can’t believe he’s given up on his child!!)
At about the same time, I decided that all the books and stories about how riding on horseback across the Ural Mountains cured someone’s autistic child or riding dolphins cured someone else’s autistic child were bullshit.
(Where’s your positive attitude? Where’s your faith? Where’s your optimism?)
Like I said, I accept the fact that Michael's shit is also fucked up. And it will probably always be fucked up. And I also accept the fact that his fucked-upness is a part of him. It’s not just an adjutant self, an auxiliary to his normal self that can be dismissed or excused.
Michael, all six-foot-one; two-hundred-and-twenty pounds of him, will grab my hand at night and pull me toward the bedroom. He wants me to lie down with him. Put my arm around him. Fall asleep next to him. Because he’s lonely. And I think, “Oh, this is how he really is. The other ways he is aren’t real. This is real.” And then, the next morning, he’ll attack me when I try to help him get his shoes on. He’ll take swings at me with closed fists and I’ll need to duck to avoid them. Or he’ll try to grab and pinch me. Try to draw blood. He does the same to his mother. And sister. And teacher.
We adjust his medication. We wonder if the violence has to do with his inability to communicate something he really wants to communicate. Or whether it might be the move to the new house. The new school. But this behavior isn’t new. It’s a recurrence. It was here before and it’s here again.
My kid is all fucked up. Like I said. And so, regardless of what opinions anyone might have, the decision Deb and I need to make, when we near our breaking point, is whether or not we have the capacity and desire to care for him. So far, we've decided that we do indeed have that capacity and desire.
I don’t condemn those who select the murder / suicide route. I can sympathize. Imagine the commitment of a parent who would rather kill her child and herself than see her child handed over to the state. Maybe she has considered the possibility of her child being ignored and abused. Drugged up and stashed away somewhere. Moaning and shrieking. All alone. For years and years. And maybe she won’t allow it. Or maybe she feels cursed. Maybe she feels her child has been cursed. Both damned to this life. And maybe she won’t allow it. Or maybe it's not commitment at all. Maybe she’s simply weak. Maybe she has been driven insane by all the screaming and scratching and jumping and hitting and biting and shit smearing. What good does it do anyone for us to condemn her for it?
Neither do I condemn those who choose to send their children to group homes. Maybe group homes aren’t so bad. We've considered the option. Maybe the people hired to care for my son would be kind. Maybe they would be his friends. Maybe they would lie down with him at night and put an arm around him. Kiss him on the cheek after he drifts off.
Getting back to the Facebook thread regarding music that got us through tough times, I posted something about a breakup when I was nineteen and listening to the Police sing So Lonely ten thousand times. I wanted to lighten things up a bit.
After that, I started getting more selections. Do you Realize by The Flaming Lips, a life-affirming song. And then Happy Days Are Here Again sung by Judy Garland and Barbara Streisand. T-Rex’s Cosmic Dancer. Jimmy Buffett’s Margaritaville. Elliot Smith’s Needle in the Hay, a quiet, indie tune. Sad and soulful. The brilliant and short-lived Gram Parsons sang about the Hickory Wind. I listened to all the songs. It was a privilege to be let into these secret sanctums. These places of healing. To consider the different methods of coping.
Smile and you will eventually be happy.
Cry and you will eventually be happy.
Get drunk and wander around the islands and you will eventually be happy.
The last post I saw was Fred Hammond. A tune called They that May Wait on The Lord.
They that wait on the Lord
Shall renew their strength
They shall mount up on wings
Shall renew their strength
They shall mount up on wings
Just like an eagle and soar
A friend of mine from Bethel AME posted this. And it put all the others in shadow because it told me what I needed to hear. If I could have faith like Fred Hammond, I'd know that what is required of me is the strength to hold out and wait on the Lord. It would be a relief to believe that our strength is not the only strength required of us, that in our time of crisis, our decision needs to be that we will seek help from without. And our strength needs to lie in the belief that we are not alone in the world.