Having a child go through major surgery, having a family go through major crisis, well it’s a bit like having a new baby. Everyone is around at first, bringing gifts, food, offering help. But then six weeks go by, then two months, then three and no one seems to be around anymore. They convince themselves you’re fine, take comfort in the fact that you’re getting the hang of your new situation and quietly let the current of life’s busyness wash over them. You’ll cross their minds every now and again, but they don’t want to bother you, and the worst is over, and, and, and.
For the record, I do think she’s going to be fine. That we’re all going to be fine. I do. We have to live with this disease in the same way that families who have a child with a nut allergy, or asthma, or diabetes do. Lifestyle change for sure. Caution, always. But eventually we’ll have to adapt and accept that this is our new normal and let life happen and save the worry for bad days or the annual MRI at the hospital. We’re getting there. I can feel it.
I have bad days, of course. Just yesterday I started crying while making breakfast. The energy in the house can do that to me sometimes. J looked concerned, asked if I was OK and I said yes. And that was the truth. I was OK. “This just happens sometimes,” I said, pointing to my red, soggy face. Nothing a strong hug couldn’t fix. It just is, just as we are.
So many things happened this week. On Monday I was rear-ended while stopped at a light and it took the wind out of my sails, but that is too much to write about here, except to say I was feeling like everything was so random and without meaning. I lost faith that anything or anyone is watching over us and making sure the bad stuff gets evenly distributed. And that was a haunting, lonely, desolate feeling.
On the good side, L transitioned back to school. We made it to a full day in school on Wednesday, but then Wednesday night was so terrible I had to run to the drug store to buy vitamins we didn’t need and let J take care of bedtime to calm my nerves. Thursday I got the first call from the office. She’s feeling it out, how far she can push things, and right now she has a lot of leeway. I was calm and worked it out with the office staff and decided not to rush to her rescue. Then my mom got her at lunch and brought her to the rehab hospital for her big magic show finale.
The magic show exceeded all expectations. My daughter, age six, the only one in costume, flounced around the room with exuberance, volunteering to be the assistant for several of the other performers and generally being a ham. Her entire class was there to watch her, as well as so many of the people who had counselled or treated her in her time there, and I realized just how many lives this little beam of light had lit up in six short weeks.
When it was her turn to perform (she was last), she seemed thrilled by the presence of the microphone at her level, and was sure to annunciate into the mic, dramatically, like a true artist. She had the audience in stitches with her bravado and general swagger. It was such a proud moment for us as a family. We finally saw her confidence coming back.
What no one sees in the Facebook photos, in the tiny snippets of joy or humour I share publicly, are the moments no one can understand. Like the night she pulled an old drawing she did for me off my nightstand and said, “Remember when I used to draw good like this?” Or when she has a bit of a meltdown, how I have to determine whether it’s an episode brewing or just her being tired. Or when she is disciplined by her dad, and I have to talk her down from her sobs, even though I should let her have the time out, because hyperventilation could bring on a mini-stroke/TIA.
Brain injuries are so complex and her disease so rare, that it’s hard for people to look outside of just “Wow, she’s doing so well.” I have a tendency to get caught up the underdog moments that no one would champion. I need to stop all of this, need to turn the ship around. I need to be even stronger. To be continued…