Pulled out from under my feet. The very next day after writing that post where I was obsessing about all the things I want to do and me me me me ME!
I can’t write about it in great detail here, if for no other reason than I think it should be a memoir. I have tentative titles for it:
– Rare: One family’s journey through disease
– All Things Considered
– Parenting: It’s not brain surgery (until it is brain surgery)
The short of it: The morning after I wrote that post, my six-year-old woke up with a migraine. They’d been getting so frequent and her anxiety levels and separation anxiety were making things confusing for us. Was she being a drama queen who just wants to stay home with mom and dad? We’d been to the pediatrician after all and there was no grand explanation for these headaches. She wasn’t having neurological symptoms. Just these terrible, incapacitating headaches. Or so we thought.
I took her to emerg that night — September 6 — because I thought she was having a stroke. My eldest had a stroke at birth and so I’m a little obsessed with strokes, so I knew the symptoms.
Oh right, I said the short of it. Well, loooooooooooooooooooooong story short, she had an MRI at Sick Kids the next day and it turns out she has a rare, chronic, progressive cerebrovascular disease called Moyamoya (or Carlos Moya disease as we tennis fans jokingly like to call it, because, well, he’s hot and that makes a mama feel better about things). Moyamoya is Japanese word for “puff of smoke,” which is what the veins in her brain look like.
I’m not quite ready to go into further detail, because well, I’ve got PTSD about it all and we’re still going through it, but I guess I will attempt to process some of it here, so you should know the nuts and bolts of the thing. Her condition causes strokes and in most cases, if left untreated, would lead to severe cognitive and physical delays as the brain persistently gets deprived of oxygen.
A week at Sick Kids to firm up the diagnosis and get the best neurosurgeon for this type of surgery in Canada for the job. Then the decision to have a bilateral pial synangiosis (say that five times fast) less than two weeks later. And in between, buckets of tears shed. And beauty in the tragedy. And it needs to be a book because when you cry that hard for your child, praying to whatever thing or spirit might hear, you should probably not just give that away willy-nilly like your virginity.
So our daughter had brain surgery this past September. And then she had a stroke, which left her with left-sided weakness. And then she got something that looked a bit like Parkinson’s on the other side. And then I fell to pieces. I shattered completely and had to build myself back up from scratch. We rose that day with a newborn baby in a six-year-old’s body and we started over again.
But lo, she is well. The pink is starting to return to her cheeks and the pains are less frequent and she looks like herself somewhat. Tomorrow she graduates from the rehab hospital. “We are moving in a positive direction” is what I keep saying over and over again. But while that’s true, I’m also on edge 24/7, waiting for the other-other shoe to drop (because the first “other shoe” dropped already). Because for my years of anxiety and talking myself down from the feeling that something bad was going to happen, that fear now has a name and a seat on our couch. But that, my friends, is another story.