My first memory from Friday, June 10, 2016 is sitting beside Matt in his hospital bed, in a room on the neurology floor, watching a rerun of some sitcom and joking about how it took brain surgery to get us a day date without the kids.
My last memory from Friday, June 10, 2016 is swallowing tears as I walked into a living room devoid of any light to show a picture of a pool heater to a man who’d just hours ago been my husband again.
A wild high and crushing low in a single day.
We’d made progress on June 10th. Matt had been deemed stable enough to leave ICU. But he didn’t want to just leave ICU, he wanted to go home and be home. He wanted to see the kids and sleep in his bed without someone coming in to take his temperature and blood pressure every few hours. He wanted independence and normalcy and to take a shower without getting permission from a nurse.
Somehow, by late in the afternoon, he’d persuaded the doctor in charge to discharge him. We collected the paperwork, listened to the instructions, and Matt laced up his sneakers. He walked out of the hospital triumphant.
The moment lasted until we reached the car. We drove home in rush hour, stop-and-start traffic. Matt’s energy began to drain. His mood began to take a turn. He went silent and held his head in his right hand, a gesture that became all too familiar.
We pulled over a few times during the drive home, and each time Matt got out of the car to pace and breathe, my panic level rose. I thought we’d made a mistake. We shouldn’t have campaigned to leave the hospital. I should have convinced Matt to stay one more night.
Matt walked into the house and dropped onto his favorite spot on the couch. And a moment later, the magnitude of what we were facing clanged through me as G and H took in the scar on Matt’s scalp. The kids had questions about the staples in their Daddy’s head. They wanted to know why his hair was shaved. Mostly, they were excited to see him and wanted his attention. But the endless drive home through traffic and the exhaustion of the day had given Matt a headache. He needed to sit in a quiet, dark room. He was angry and irritated. And impulsive (which is a long topic for another day, but explains the pool heater).
The fear that clawed into the pit of my stomach as I told the kids to play quietly because Daddy had “headaches” and called the doctor’s emergency line, was that Matt was irretrievably gone; the surgery had removed the tumor but damaged his brain in another way.
I thought I’d lost Matt again. I think he thought he’d lost himself again.
Then I turned to Google (again). I don’t know what I searched but somehow I came up with an article that matched our circumstances word for word. The author of this article suggested the anger and irritability was nothing more than a side effect of the Dexamethasone (and, in retrospect, probably the anti-seizure medicine, too). The simple suggestion that this wasn’t permanent, that easier days were ahead (when Matt had weaned off both medicines), made it easier to bear the terror.
Hope stronger than fear.
On June 10, 2017, we lived those easier days that were nothing more than flashes of hope just a year before. Matt and I took the kids to see Willy Wonka on Broadway. Afterward, we went to that party Matt always mislabeled as a beer BBQ, the one he’d made infamous in doctors’ offices up and down the East Coast. He didn’t wear a kilt. He didn’t show any red flag symptoms. The day was not marked by highs and lows.
When the worst days came, it was days like June 10 that guided us toward hope. Because two years ago today, hope was stronger than fear. A year ago today, hope became our reality.