My son’s recovery under the light of the moon

By Amy Roost
@amy_roost

Spencer is my easy child. He sleeps through the night at two months old, charms his teachers with kind-heartedness, and rarely complains about getting less attention than his big brother Stuart, who was born with multiple birth defects. 

This wash and wear phase lasts until Spencer is 19, when we learned that he, like his brother before him, has a malformation embedded deep within his brain. Because it could do more harm than good, the doctors advise against surgery, recommending, instead, a wait-and-see approach.

*

My phone vibrates just as work wraps up. Steve’s tremulous “Hi Amy” tells me something is wrong.

“What is it?” I ask.

“It’s Spencer. He’s had a stroke. We’re at the hospital in Bellingham, but they’re about to airlift him to Seattle.”

When I arrive at Seattle’s Harborview Medical Center ICU, Spencer’s arms and legs are in restraints. I sit down and cusp his hand with both of mine. He opens his eyes but shows no sign of recognition. Over the course of hours he’s restless, and mumbles gibberish, saying something about a goat farm and Fidel Castro. Then, without warning, he bolts upright and his muscles flex like The Hulk’s. He thrashes about trying to free his limbs. The nurse and I try to hold him down and she yells for a crash cart. The ripping of plastic bags and shouted orders fills the room. Time is collapsing. I’m losing him. The doctor orders propofol then more propofol, and more still. Finally Spencer’s body relaxes enough to insert a breathing tube.

After an emergency surgery to relieve pressure on the brain, Spencer lies in a coma. His neurosurgeon presents our family with two options: Option A: Remove the ruptured cluster of veins that caused Spencer’s stroke; or Option B: Let Spencer recover to whatever degree he can, but live with the lifelong risk of more—possibly fatal—strokes. Spencer is unable to weigh the options so it is left to Steve, Stuart and I to decide on his behalf, a determination complicated by Spencer’s previous and repeated statements indicating he wanted no part of brain surgery. Ultimately, we rationalize that Spencer wouldn’t want to live with the sword of Damocles hovering above him. We authorize a high-risk surgery and pray it will break Spencer’s way.

*

The leaves on the Aspens outside Spencer’s hospital room window were a shimmery yellow when I arrived in Seattle. I point these same trees out to Spencer as he stands for the first time. The trees, now naked mannequins, shiver in a cold wind. “Look, the outdoors!” I say.

”Nature therapy,” he whispers back.

Spencer’s gross motor functions begin to return. The first time he’s able to circumnavigate the ICU using a walker, rounds of applause from hospital staff follow in his wake. At mealtimes, I spoon feed him, just as I did when he was a baby. I eventually let him take over. With intense concentration he motions the spoon from the plate to his mouth. Forty eight days pass in the ICU before he is moved to a rehabilitation unit where it takes him eleven minutes to print his full name on the sign-in sheet that first day of therapy.

Spencer is finally discharged from the hospital in late October and returns with me to San Diego. His Aunt Stacy moves in with us to assist with his care, and so I can return to work part time. His walk and smile are still crooked, but he speaks clearly, and is beginning to recognize social cues. His short-term memory, however, remains impaired. He wants to make his favorite Thanksgiving dish, a pumpkin pie, so I spread all the ingredients and pie plate before him on the kitchen counter. He looks at it and says, “What am I making again?” A few days later I ask him to take the trash to the curb and watch out the window as he does, only to have to run out to rescue him as he wanders about our complex.

In early December, I’m awakened by the Supermoon’s penetrating reflection off the ocean’s surface outside my bedroom window. I debate whether to show Spencer. My mother’s voice reasons, He’s exhausted from rehab. Let him sleep. My cynic’s voice asks, He won’t remember it, so why bother? Then my optimist’s voice interrupts, Whoa, Nelly! That’s no way to think! Resolved, I go downstairs and rouse him. Together, we watch from the living room balcony as the moon slides into the ocean’s cradle. Satisfied and sleepy, we each return to our beds.

The next morning as Spencer stands at the stove turning the bacon, I ask him, “Do you remember my waking you?”

He pauses before answering, “Yes.”

“Do you remember why?”

He thinks again before asking, “The moon?”

This has become our routine: reliving each event point by point, trying to trigger a memory. But the image of the Supermoon setting has so imprinted itself on Spencer’s healing brain, he needs only the tiniest prompt to recall it. No matter how sluggish he’ll be at rehab, I feel vindicated for having awakened him for nature therapy.

*

As the months pass, Spencer’s circuitry rewires itself. He is able to take out the trash without getting lost. He becomes a mentor to a new admit at his rehab clinic, taking notes for her and walking her home. Long before I’m ready to let go, Spencer expresses his desire to return to Bellingham along with his new emotional support dog, a boxer he names Moon.

In early June, Spencer, Aunt Stacy, Moon and I pile into Stacy’s Subaru Forester and set off on a road trip north, stopping along the way to visit Spencer’s ailing grandparents in Oregon. One evening at dusk, a few of us sit on the front lawn watching deer graze on thistle. A nearly full moon breaches the mountains to the east, reminding me of the night of the Supermoon. The temperature cools, and Spencer’s Nana announces—in her confused Alzheimer’s state, “I’m cold. I need my purse.” Pushing off the arms of the Adirondack she tries to rise up. Noticing her unsteadiness, Spencer stands and says, “Here, Nana, let me help you.” She grasps his hand, and the two of them, their memories moving in opposite directions of the spectrum, walk each other home.

Amy Roost lives in San Diego with her husband and weighted blanket, aka her two cats. She is frequent flyer to Bellingham, Washington where she hangs out with her grand-boxer, Moon, and son, Spencer, who is finishing up his college degree. 

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