Last night I turned to my favorite online resource ask.com and learned that an EEG takes perhaps an hour and a half to complete. I didn’t know enough about the future at that point, or I would’ve asked the same question about MRI’s. And as it turned out, those questions weren’t even the right questions. The real question– the agonizing one now hours after the fact is this: how long does it take to get information after these tests are performed? Foolish me– I didn’t look that far into the future. But the truth is, a terrabyte of web pages couldn’t have prepared me for the feeling of sitting next to a child of mine as an expensive machine clicked and scribbled and churned an inevitable path toward an unknown future.
The EEG was the first, and the easier of the tests. Just wires stuck with a little goop to my daughter’s head. Closed eyes and deep breathing and a band of squiggles wormed across a screen, scribbling hysterically each time she did something as small as clearing her throat or opening her eyes. My husband took time from work to stand at my shoulder. We strained to peer into the hazy future being drawn in cryptic squiggles. An hour. We left the room no more enlightened than we’d entered it. But at least that test was done.
We breathed a sigh of relief and went to lunch in the hospital cafeteria ‘on the house’, thanks to coupons given to us by the EEG tech. The french fries and coke and chocolate pudding made a few moments of the day seem light-hearted. We listened to our daughter chatter about her past life in Ethiopia– about a time of mischief, a joke she’d played on her first mom. We smiled. We relaxed a little. But never for a second did we let loose of the question floating in our brains. The question that drove us here.
All too soon it was time to set aside the chocolate and move forward again. The MRI this time. The mandatory hospital gown made this test feel more official, less friendly than the EEG. My daughter and I peeled off jewelry and set it aside. We were both grateful that I would be allowed in with her. The white of the big room was punctuated by lit panel-photos of a blue sky on the ceiling.
We were warned about the noise and given ear protection: spongy little earplugs for me, and headphones for my daughter that (she later said) played music from High School Musical and Enchanted. My daughter lay on a bed that reminded me of an oven rack being shoved into an oven. They’d told us this would be a long test– 45 minutes or so– about as long as it takes to bake a cake. Before they sent her into the machine’s belly, they gave her a panic button. “Push this if you can’t do it any more.”
She looked relieved to have been given an out. But I hoped she could handle this– get this done. We needed answers.
The machine clicked and roared to life and we were enveloped in a wash of sound. Beeps sang in one key for a monotonous semi-eternity, then the machine quieted and the oven rack jerked a bit forward and the machine revved up for its next session of micro-eternity, this time in a different key. Sitting next to her legs I could stroke my daughter’s ankle. At first our smiles to each other were bright and frequent, me trying to look encouraging and she trying to reassure me that she was still hanging in there.
But as the dull roar went on and on, we settled ourselves simply for endurance. There was not a clock anywhere in the room and I’d relinquished my watch for the privilege of being here. I tried to shoot a glance at my husband on the other side of the glass, looking with the techs at the computer screen that showed images of our daughter’s brain. Was he worried by what he saw? Reassured? The glare of lights made it impossible for me to see him, and I didn’t want to worry my daughter by twitching. So I sat lumpish, wishing for it to be done and enveloped in the terrible beeping that was marching toward the unknown.
And I feared. I feared that the beeps were measuring a narrowing gap…counting down the seconds that separated our normal life from….what? I didn’t know, but in that eternity I remembered every byte of information I’d read on ‘Dr’ Google and none of it was good. Maybe this limbo of noise and uncertainty was better than knowing. Better than discovering we had something terrible to fight.
The beeps paused and changed tone but the bed didn’t move. Were they lingering someplace? Why? Be done, be done, I thought, wishing that I was the one holding the panic button, or better yet, that I was the one in control of this blasted ride.
Let us off.
My daughter had gone off into the haze, just putting up with this. My hand on her leg was quiet– I didn’t want to pull her back if she’d gone someplace in her mind. Daydreaming was better than this hyper-alert state that had me feeling like every minute was an hour.
Droning. Beeping. Noise surrounding us, cutting us off from each other and the rest of the world. Cycle after cycle until I thought certainly hours must have passed.
Finally the machine wound down and doors opened and techs came back in to release my daughter and looked beyond to search my husband’s eyes for news.
He shrugged. Smiled almost apologetically. Nothing obvious, it seemed.
The roar in the room was gone, but there was a silent roar, a whirlwind inside my head. Still we knew nothing really. We would need to wait for a neurologist to read results, to tell us our future.
We drove home and I lay down and slept two hours.
Now, 12 hours later we still know nothing. Tomorrow may be the same. And the next. It may be late next week before the picture are seen and the squiggles are deciphered and the neurologist enlightens us.
Until then we will endure with this roar in our heads. This pressing question. This fear that battles fiercely against our faith.
Because when your 12 year old daughter has 6 seizures in 24 hours, you hunt -hope -persevere -fear -pray -endure – until the future opens its doors and lets you in. Ready or not.
(For those of you who know our daughter in real life, she would be uncomfortable being asked lots of questions about her health, but she would be very glad to know that you are praying for her.)