After an especially trying weekend, I sought what I refer to in my head as my “haven” – propping myself up against pillows on my bed, in the bedroom farthest from the TV, the living room, the kitchen, and the noise Stephen generates constantly. But, he found me, flopping onto the bed cross-wise, one babyish hand finding my foot and patting it in that instinctively sweet way of his.
He’s stretched out, jabbering away, his t-shirt too short (as most of them are now), and I can see the jagged pink stretch marks on his belly…ugly reminders of his poor diet, his huge pharmaceutically-induced appetite, his inability to understand limits. Autism, the wild beast that invaded our lives a decade ago, persists in trying to tear us apart, and it has left its mark on my son’s skin as it tries to claw its way out. This evil, wrong presence – a million miles away from the happy, feel-good kind of autism that has parents lauding their child’s “differences” and appreciating their “uniqueness” – has terrorized my family, and there’s no weapon that can be used to defend us.
We have bound ourselves together to fight it, but inch by inch it creeps in. We are trapped, isolated, a bizarre island in a sea of unhappiness, and it hurts. It’s lonely. It’s impossible to understand unless you live a similar life, and there just aren’t many people who do.
At this very moment, as I type, Stephen is back on the bed, his round, soft cheek resting against my arm. He giggles. “Band-itch,” he says. I am silent, thinking. “Band-itch, peeze.” I have no idea what he’s saying. My heart breaks for a child who can walk and eat and sleep, and in most other ways is unable to conduct his life as a human being…trying to talk, staring earnestly into his mother’s eyes as he sweetly says, again, “Band-itch, peeze.” As I shrug and say, “Baby, I don’t know…” he once again gives up, not able to communicate, and so he retreats back into his mind, jabbering about Thomas or Percy or whatever. I got lucky this time. So many times this kind of non-communication results in screaming fits. What a wilderness of confusion his brain must be. It shatters me to imagine his bewilderment with the world. I’ve been a soggy, crying mess over the last 12 hours. Two more tears trace paths down my face, and Stephen reaches out a finger to catch a drop off my chin, and he wonderingly looks at it, then wipes his hand on his shirt.
The future scares me. Stephen’s puberty looms like another monster, an unknown enemy lying in wait. Our older son starts high school in a week – how is he doing, really? He told his dad last night that “this stuff” does get to him, but he doesn’t show it. He just goes downstairs and pounds on his drums. Have I failed him? Is he destined to run far from this home that I’ve tried in vain to make tolerable or even happy at times, taking memories of chaos and noise and pain? It is more than I can bear.
For years, I have worn a silver band engraved with “HOPE” on my right hand. I bought it at the first autism conference David and I attended. Those snake oil salesmen/vendors are nothing if not purveyors of hope, mainly of the false variety. Regardless, I have always gained a miniscule particle of strength when I’d glance at the ring on my finger.
Today I took that ring off. Right now it hurts more than it helps, because hope seems elusive, mocking me as it swoops in only to disappear when I reach for it. Oh, there are times when my eternal, cockeyed optimistic soul believes that happiness is possible: the scent of newly mown grass that transports me to childhood, Stephen’s wild dancing and laughing moments, Kerry’s enthusiasm over music, David’s constant ability to make me laugh till I cry, a perfect sentence in a book I love…
But my well of hope has run dry, for now. I’ll find a way to replenish it, but right now it’s empty. I’m afraid, I’m discouraged, I’m out of ideas.
Years ago Kerry gave me a necklace that has a charm on it: “#1 Mom.” He honored me by considering me a great mom, but I have a hard time convincing myself of it during dark periods, like now. Today I put my hope ring on that chain, and hung them both back on a hook. In sight, not packed away, but not to be worn…not while the beast snarls at the door. I’ll keep what’s precious out of harm’s way, with the vestiges of stubborn endurance I have left. We may be hanging on by a thread, but in my heart I believe the thread is made of something just strong enough to withstand the attack.
