I am mostly good this week. I say mostly because I will never again be able to say, “I’m good” and mean it. Or at least it doesn’t feel like it right now.
Every time I let a little loose, I get too flexible on the rules, something goes wrong on my watch. The thing is she’s still not totally well and this will take time. And so when she has pain, The FEAR reaches up and grabs me by the throat.
I need to explore The FEAR, because I’ve lived with it for so long. I’ve lived with it since the time when it was just the fear, no CAPS. But now The FEAR has taken on greater significance, and I need to start exploring its origins so that I can move past it. I’ve been writing in a little journal, some daily reflections on what was good and what I perceived as bad, as recommended by my homeopath and friend. It’s been helping me to stay focused on the positive.
But today maybe it made me too comfortable, the positive feelings. I let the rules about treats and bedtime slip a bit. There were myriad things working against us today and they were all mostly un-terrible things. She woke up early, 6am, raring to go. I forgot when her day started by the time I introduced them to Billy Crystal hosting the Oscars (at 8pm). I didn’t take into account that she’s made it through a whole day of school. I was just enjoying the moment. Dad was out, it was just the three of us and I felt like doing something silly with them. Before I knew it, it was past nine and she was unwell. Headache, leg ache, knee pain. She keeps referencing a blinking pain in her leg when she gets tired.
And really, it’s not that terrible. She doesn’t feel well. But it’s so damn terrifying for me. I need to figure out why, need to face this fear. So after nights like tonight, I go into a secret folder on my phone where I keep the pictures from the past four months.
She was being very cheeky on the night I took her to emerg, before all of this. I took photos of her in a stylin’ outfit she put together, complete with motorcycle boots and a scarf. I took pictures of her after we returned from the library, when she put on a ninja costume and showed me she was a warrior.
The next few pictures are from emerg. She’s smiling in one photo, then I’m holding her and looking worried when we get to SickKids. There’s a picture of her in a wheelchair holding an oxygen mask over her face, right before her MRI. The next photo is of the two of us, lying in her hospital bed. We’re smiling. My eyes are swollen, but I tell her my allergies are bugging me.
Then a brightly painted fence. I’m at Margarita’s on Baldwin with my sister and her boyfriend and trying to feel human after being told my daughter has a brain disease. The colours on that fence were all I could grasp.
A picture of her being fierce, IV in her arm. Then the boys are in the room and we’re watching Loonie Tunes and I’m happy we’re all together, even if we’re barely holding it together, if only for the kids. Then L is drawing what it feels like in her brain. She draws something that looks like a messy planet. I am told that is the first stage. Then she fills the background in yellow. Then she stabs the drawing surface with her crayon to represent when “fireworks go off in my head.”
That image is brilliant, both in colour and concept, and it breaks my heart every time. That she even HAD to draw her episodes. That she had to have them at all.
The IV is off and I painted a happy face on Blocko, the block that kept her arm straight when she had it in. Then she’s wearing a purple face mask and waiting for an EKG that they gave us shit for because she had a mild sniffle.
I look at the sad Charlie Brown tree outside the narrow window in the room. I photograph a drawing where she put herself on the cover of Today’s Parent. She doesn’t draw anymore, says she can’t be good at it anymore. She’s just given up on it. It was her most favourite thing to do in the world, to draw. More heartbreak.
A picture of the day she was sick of me and felt safe enough to tell me she needed her own space. We were still in isolation, trapped in a cell of a room. I felt like the mom in Room. How do you spend time apart when you’re confined to the same space? She is drawing in the wee bit of sunlight that the sliver of a window provides.
Then outside in the hallway, where I took my “me-time,” a hot tea and a copy of Drunk Mom. A sad entry into the lunchbox poetry hall of fame. Then bliss. She’s hugging the cat, she’s snuggling her brother with his eyes closed, peaceful. She’s snuggling her dad.
Milk and cookies at Moo. Then her in the chair at the fancy hair salon. She’s having the sides of her head shaved. We encouraged it. It will empower her, we thought. One less thing to have to wake up and deal with after surgery.
Then they are painting tattoos on my shoulders and arms, my two kids. Diligently, tongues hanging out of their mouths. War paint. She’s in the bubble bath and smiling, side-shave looking good. A candle, lit by a friend in a faraway place. A sign that says, “Do not be afraid” in English and French. L, checked into the hospital again, writing the names of her peeps on the eraseable board, calling her Tante on the phone, the day before surgery.
My best friend, posing with a stuffed puppy in front of a poster of a puppy. There are so many more, but I can’t tell you yet. They cut deep and when I look at them I am fragile and raw and right back there.