It’s funny how such a tiny, insignificant, dozen-times-a-day action can become a line of demarcation. The picking up of a phone. The pressing of an on button. Before I pressed it—as far as I knew—my sister Alina was alive. At the moment of pressing, my life split into two distinct epochs: Before the call and After. Before the call, I had no use for a word like “demarcation,” one of those fifty-cent words I knew only because I was an avid reader. Before, I floated through life from one happy moment to the next. Before, I thought I knew everything. I thought I knew who I was, where I fit, and exactly what my future would bring. Before, I thought I knew I had a future. After, I began to discover that I’d never really known anything at all.
~Karen Marie Moning, Darkfever
My line of demarcation was a nap. A tiny, insignificant, at-least-once-daily event that I’m betting every single person in the world experiences at one time or another. Before the nap, my daughter was a happy, healthy, spunky, sassy toddler with four working limbs. After the nap, my daughter was a toddler with a disability; with special needs; with one paralyzed limb. I realize these labels do not define her, and she is still a happy, otherwise healthy, spunky, sassy toddler, and that makes us luckier than some, but at the time, all we could do was wonder how much worse this was going to get before it got better. Would it get better?
Chris and I remember less about the trip to the ER than we do about urgent care.
I know by the time we pulled up to the ER entrance we were both on the verge of either bursting into hysterical laughter or tears. We were tired, strung out, and holding onto the fragile hope that the doctors at one of the premier children’s hospitals in the country could give us the answers we so desperately needed.
Everything blurs together upon our arrival. It’s really just flashes superimposed over white noise and heart monitors. There were blood tests, and taking turns cramming ourselves onto the small hospital bed with Love Bug, and x-rays, and trying not to jostle her too much while neurotically checking that she was still breathing, and ultrasounds, and periodic check-ins by the doctor with test result after test result coming back negative – nobody had any explanations as to why a toddler with completely normal test results experienced sudden onset paralysis.
From the moment the first test came back negative, we began to fear that our daughter was going to die. I didn’t realize it until later, but no one was actually saying what they thought had happened, because no one was really sure. But likewise, no one explicitly told us she wasn’t dying. For all we knew, this paralysis only started in her arm and her despondence and lethargy were signs it was spreading throughout her body, shutting down her little system organ by organ.
To say these were the most harrowing hours of our lives doesn’t even begin to aptly describe the unreal, terrifying, abject, bone-deep fear that she was dying, that our little girl, our still-not-yet-two-year-old toddler, was leaving us forever, and the helplessness we felt was debilitating. I honestly don’t know how we kept it together, except that we knew we had to be strong for her. Finally, as the physician told us another test had come back negative, I blurted out, choking on my words in anger because the other option was sobbing incoherently, “Is she dying? Can you at least let us know if she’s dying?”
The physician blanched, and then her expression immediately softened. “No. Oh, no. I’m so sorry. I didn’t realize no one said anything – no, no, she’s not dying.”
August 21 – Or maybe by this point, it was early the 22nd
After more than nine hours in the ER, we were released with the following information: she may or may not have a virus that may or may not be related to the fact that she’s not moving her right arm at all, but nobody is really sure and she somehow isn’t sick enough to warrant an MRI, so we’re being discharged and supposed to follow up with the orthopedic department later that week, unless her symptoms worsen, in which case we’re welcome to go back to the ER and experience the nightmare all over again.
Feeling angry, helpless, and beyond exhausted, we hauled ourselves back home to sleep through the rest of Monday. Over the next three days, as Love Bug’s appetite declined and she stopped walking and crawling altogether, all we could do was wait until our appointment with orthopedics, and hope they’d be able to give us any kind of concrete information at all.