Evie's story is simple really. She was perfectly happy and healthy...until she wasn't anymore. She was six months old when we had our first family of four trip to Whittamore's Farm. She was six and a half months when she was diagnosed with a brain tumour at SickKids. Just like that - it all just changed.
Those of you who were there, for the beginning and for the first two years will remember that Evie had nystagmus. I explained it as best I could, but to say her eye was shaking...well, to understand you really had to see it. The doctors referred to it as rotatory nystagmus: her eye shook in a circular (but not fully circular) back and forth, like the way you dial a rotary phone...just, well, faster...and non stop. I guess it's not the easiest thing to understand.
It was during bath time on October 28th, 2010 that we first noticed the nystagmus, though we surely did not know it by this name. I remember clearing the table after dinner, getting the dishes ready when Paul called me to the bathroom and asked if I had noticed her eye. As we looked down at our little girl, still cradled in the tub by a mesh bouncer, we watched as her left eye shook rapidly. I tried to downplay it, partly because I was just too naive, too ignorant. Probably because in that split second, the thought of something actually wrong was not even possible. But Paul knew better. He knew things I didn't. Not to say that he thought the worst then and there, nor would he have known what the worst could even be, but he knew it wasn't right. After talking about it for a few minutes, I did what any Mom would probably do. I called my Mom. Once she admitted that she really didn't know, and didn't really understand what I meant, I made the next New Mom move. I calmly took advantage of the system we have set up, and called TeleHealth. And then, while on hold with them, I sat down at my computer and googled.
You should never do that. Don't self diagnose. You'll drive yourself crazy and become a total paranoid hypochondriac. Funny thing is, what I found when I googled, was basically right. But there I was, naive and ignorant, and dismissed my findings of neurological problems, because...well, that was way too serious of a thing to even have happen. As if. Once TeleHealth ruled out any immediate danger, and suggested I take her to the doctor in the morning, I felt better. Not great, but better. Worried. I felt worried.
I know we tried to go to bed normally that night, but the worry did take over, and I couldn't. I wasn't sure what was wrong exactly, but by then I was convinced it must be something. Evie seemed fine, she was happy, nursing well, no different really. But her eye just hadn't stopped shaking. And the more I watched...that pit in my stomach grew. Now, I am awful at describing things sometimes. I can't explain how food tastes, I just can't make the connections. I had this feeling that it would be just my luck that I would take Evie to a doctor in the morning, and not really be able to explain what was happening, and when they looked, it wouldn't be happening anymore. So, in fear of looking silly, I took two videos on my phone. I made sure to capture her eyes in close up, so that there was no mistaking what we were seeing. These videos proved to be really helpful to the medical team, who all gathered around my phone to watch - but they might not have been necessary, because the shaking was still happening when they checked her out the next day. And it continued to happen for years. These are the two videos from that night...the night it all changed.
