Thursday, January 13, 2011

Weathering the storm

Things have been going along okay lately for Stephen, which is why I haven't written in so long. After spilling my guts in my open letter, I suppose I felt cleansed - renewed, even. In spite of some changes (his beloved "Miss Hedder" is out on maternity leave) Stephen has continued to thrive, especially on school days, and for this we are thankful.

We've acquired a puppy. I could write volumes about the problems this furry black creature has introduced into lives that really didn't need more problems...but I'll save that for another time. I will say that the irony of bringing another creature into our home who isn't potty-trained and who can cause pandemonium quite easily isn't lost on us. We are thmart!

No, today I just want to write about last night. Last night was one of those nights. You know...THOSE nights. Things seemed okay. Stephen is doing really well with his weekly calendar, so his requests for "Chicken-Chicken" (Chick-Fil-A) were rather easily dealt with: "On Friday," and we pointed to the Chick-Fil-A symbol velcroed to Friday. Right before dinner, I realized the child needed a bath, so I mentioned it and he was agreeable. We proceeded down the hall only to realize that Kerry was already using the facilities.

Ooops. I didn't think to check. I thought Kerry was downstairs. This isn't good. This interrupts the flowchart that I can only imagine Stephen has in his head. Mama says "bath," we go to the bathroom, we open the door, we go inside, we bathe... But no. The door's locked and I have to say, "We'll take a bath when Kerry comes out."

Stephen stomps back down the hall and flops on the couch, distraught. "Kewwy!"

"Kerry's in the bathroom."

"I taka baf!"

"Just a minute, buddy..."

Repeat this for the 5 minutes we had to wait. I go to the bathroom door and try to get Kerry to hurry up. Nice, huh?

So he comes out and Stephen and I head in. But he's already upset. The flowchart got interrupted. I'm trying my best to smile and be happy and talk about bubbles or the fries that are cooking, but I can tell it's going to be hard.

Now, I should stop and tell you about the loose handle on the hot water side of the tub. We've been making it work for a while, knowing it needs fixing, knowing that the knob is stripped.

Would you like to guess what happened next?

As David and I raced around, trying to use pliers to get the water on, then off, Stephen sat in the tub and cried. And cried and cried. I kept saying, "It's okay, buddy, we'll fix it..." but it didn't matter. Finally I got the knob re-attached but the damage was done. It was really good and done.

Poor Stephen sat there, with his mind no doubt a jumble of conflicting images, and even though things were okay, were fixed, were back to normal, he couldn't get over it.

I got him bathed, out of the tub, into his room, and dressed. I closed his door and sat on his bed with him as he continued to sob.

Then, he started hitting himself in the head. He does this when the agitation becomes overwhelming. He hits HARD...and he sobs. I gathered him into my arms and kept up a continual litany of "it's okay, it's all right, you want tater tots?, it's okay...it's okay...it's fixed..." And he cried. He alternated clasping his arms around me and pushing me away...burying his head on my shoulder with grabbing handfuls of my hair.

I laid there, and all the stuff from the news lately about Andrew Wakefield and vaccines and who caused what and what cured some kids and how much money it takes to live with a child like this raced through my tumbling clothes dryer of a mind...and all I could think of was the pain, whether physical or psychological or both, that my son and those like him deal with... I thought of the times that people have tried to tell me that everything happens for a reason, that we must be so special to have been given Stephen...and the clothes dryer dissolved into a blank gray mist. Stephen and I on the raft of his bed, adrift on a sea of confusion and disarrayed thoughts and images, clutching each other. Slowly, he calmed down. Then, there is an emptiness...a silence that sets in when the turbulence is over, when his mind has somehow folded itself back into what is normal for him. His body relaxed and when I murmured "Want some bread toasted?" he popped up. "Bread. Toasted." And just like that, he headed out of his room, stretching his legs over the baby gate which keeps Coco the puppy out of everyone's bedrooms (oy), and it was over.

I walked into the kitchen and finished getting dinner ready. As I put the bread into the toaster, I lost it. Tears spilled over, and I could no more stop them than I could stop breathing. The bitter, unending tragedy of a life so tuned to sameness that a closed door and a loose hot water knob cause chaos and pain and agony...

No matter what the cause, no matter what cures we've tried unsuccessfully to find, no matter how many physicians have lied in order to line their own pockets...right then, none of that had any bearing. Nights like this one are as hard as they come. In those moments, every second crystallizes into a sharp, jagged, harsh reality.

Our job as parents is to guide our children and teach them how to navigate life.

And sometimes, we aren't able to do that...and the pain is just this side of unbearable.