Our nightly ritual involves ordinary magic. Our family gathers at the dinner table to share stories about the day. We clear dishes, brush teeth, read bedtime stories, sing “Edelweiss” and “Memories” and my husband and I kiss our two boys good night.
Tonight, however, my older son Ian is a little restless and lingers in the living room. To sooth himself he hums and rubs his hands rhythmically against the wall and carpet. He eventually settles down on the couch, flopping side-to-side, and after an hour falls asleep. Thirty minutes later, I help him walk sleepily up the stairs to his room and onto his bed, but he won’t lie down. Normally, he’d plop right down and settle in for the night. Something isn’t right.
He starts to cry.
“What is it, honey?”
Big tears stream down his face. He grimaces, and then I hear the reflux come up. He cuts it off with a hard swallow, over and over again. His brow furrows and he turns to me with pleading eyes that say, “Mom, please make it stop.” It’s bad tonight.
“Sweetie, let me help you.”
I crawl onto his mattress that lies flat on the ground and pull him close, positioning him in my lap, facing away. This is what I call the “burp” position. I’ve become creative through the years, as he’s way past the stage to burp over the shoulder. He then pees through his diaper all over himself, the bed and me.
Ian is eight years old and he has autism. Not Asperger’s or high-functioning autism, but the type that comes with seizures, a hyper-sensitive immune system that responds to God-knows what, gastrointestinal problems including, at times, severe reflux, and pee and poop that usually miss the toilet but hit the diaper. His sensory systems get overloaded easily and he has no spoken language…yet.
Even though he can’t tell me with words what he’s feeling, in this moment he is telling me something is not right.
Tears stream down his face from his squinted, reddened eyes. He moves his hands around his body, poking and pushing around his tummy. He is in pain. Streams of snot flow from his nose and his face blooms with red blotches. If I don’t act quickly, he’ll vomit.
I give him a dose of Benedryl and aloe juice. Within twenty minutes, Ian and I are in dry clothes and his bed is stripped and remade with clean sheets. The tears stop, his nose clears up and he starts to relax. He lies down, easing into sleep. The disaster appears to be averted.
I go downstairs and listen to my son’s breathing on the monitor and watch an episode of The Ellen DeGeneres Show for my daily dose of laughter. What’s that? I hit pause on the remote. Damn, there’s that familiar sound. The bed sheets rustle with the repetitive movement of his body, his breathing changes from a deep rhythm to shallow gulping sounds. I run upstairs, taking two at a time and enter his room.
Ian is rigid, with clenched fists arms pressed against his chest. He’s in the middle of a seizure. His eyes stare, open wide, and he’s choking on reflux. I sit him up, which is quite a challenge in his rigid state.
I whisper in his ear, “Sweetheart, Mommy’s here. I’m here with you.” I hold him gently, breathe deeply and remain calm. No more than fifteen seconds pass as I feel his body relax into mine. He takes a deep breath. This episode is over.
But his tummy is in turmoil. Somehow the air in his tummy is connected to his seizures. If I don’t help him burp, the seizures will continue through the night. I press on his tummy, just under his ribs. I feel the rumblings with my fingertips and hear that familiar sound of gas traveling up the esophagus and out it comes—a belch deep and loud, like it’s coming from the depths of his intestines. Unfortunately, I don’t get them all out. He’s exhausted from the seizure and just wants to lie down.
I camp in Ian’s room. I layer blankets on the carpeted floor to provide cushion for my 45-year-old body. I touch his cheek and say, “Sweetie, I’ll be right here lying next to you. Let me know when you need me.”
We pass the night together in the darkness of his room. The seizures resume with an eerie rhythm as they come hourly. I remain calm and we both sleep between seizures. He knows I’m there. I repeatedly wake to the sounds of his shaking and choking. Even from a groggy sleep, I take only a few seconds to move into action. He has one last seizure after sunrise. We sit together as I hold him, comfort him and love him. It’s what I do. I’m his mother.
Later that day I pause as I pass Ian’s room. Light streams in through the windows. I notice the blankets folded neatly in a pile, patiently waiting for another night. Two years ago, I might have wept, overcome with the fear of more seizures. But today I take a few deep breaths and feel a rush of gratitude that Ian made it through the night and that I was there by his side.
Evening comes and I sit on the couch enjoying the stillness. Ian quietly sits down next to me leaving almost a foot of space between us. His hands are gently crossed on his lap, right hand holding his left thumb in a reverent pose. His body relaxes into the couch cushions, allowing them to support his weight. In this moment, he’s at peace.
My hand slides across the leather, palm facing up, extending an invitation. I wait, without expectation. A few moments later Ian’s hand reaches to connect with my hand. I feel the meaty softness of his palm as his fingers grasp around the base of mine. A smile comes to life across my face and warmth expands out from the center of my body.
I feel him say, “Mommy, be here now.” It’s more beautiful than any words ever spoken.