Today was a day of errands. With just five days until Olivia’s operation, it’s like planning for the worst vacation ever. Doing laundry, cleaning the house and preparing meals and necessities for the hospital. Over the years of doing this, I’ve learned some helpful tricks – things like stocking up on Superstore fleece pajamas at Christmas time, as they are MRI compatible and the arms are wide enough to fit an IV through them easily; buying the colouring books at Walmart that have adhesive tops so they stick to the walls of her hospital room without tape; buying a brand new pack of the Crayola thin markers, because they are light and easy to color with when her hands aren’t working right; and making sure I have warm pajamas, as the air conditioning vents are conveniently located right over the parent cots.
I’ve learned to pack our own pillows, because sleeping on a rubberized pillows sucks, and I make sure we have a blanket that will cover her entire bed to try to hide the all too obvious “medicalness” of the hospital. I also spent part of the day organizing her schoolwork and making sure her school laptop is up-to-date. Trying to manage school when you are constantly in and out of the hospital can be a challenge, overwhelming at times.
I remember the day we were told there was a problem with Olivia’s brain. She was just eight days old and a resident came in and told us she had a massive bleed in her brain, and that she would probably never walk, feed herself or see. I remember him patting me on the knee and asking if I had any questions. I barely squeaked out a “no,” so stunned I could hardly move. A few hours and a few thousand tears later, the neurosurgeon walked in the door. He checked her out and quickly reassured us that the location of the bleed couldn’t have been better. The bleed was largely in her ventricles (the fluid filled lakes in the middle of your brain) and not in the brain tissue. He said, “She will do great, Wendy. She will need some surgery and may have some learning disabilities, but otherwise will do quite well.” Brett and I burst into tears of relief and I said out loud, “If all she has is learning disabilities, I will never complain.” I didn’t know how painful learning disabilities could be.
In the first grade, we started to notice how hard it was for her to understand math. It was incredibly frustrating for her to do homework assignments. I would sit with her to work on the simplest of concepts, like counting by fives, and I realized that she couldn’t grasp it. When she finally did grasp the concept we would go on to something else. If we came back to that concept five minutes later, it was like she had never heard it before. She had problems with short-term memory. I remember wrestling with what to do. I felt incredibly guilty for feeling so disappointed.
Every day I work with families that lose their child, families that would literally give everything to be able to worry about a learning disability instead of trying to survive their first, fifth or even 10th start of the school year without their pumpkin. Knowing these families has changed me as a person and as a parent. Each one of these kiddos, whether I knew them for eight days or eight years has made me a more grateful person, a more diligent clinician and a more patient mother. I knew I should be able to accept her learning disability and just be grateful to have her, but I couldn’t.
I think any kid who has brain surgery should get a “get out of jail free” card for academics. They should be brilliant, school should come easy to them and they should have every door in the world open for them to choose the career of their choice. But it doesn’t work that way. In fact in most cases, it’s the exact opposite. These kids fight so hard just to survive and then they have to struggle every day in school. It’s unfair. Even more than worrying about expecting too much from Olivia, I worried that I wouldn’t expect enough.
I remember the day we were told there was a problem with Olivia’s brain. She was just eight days old and a resident came in and told us she has a massive bleed in her brain, and that she would probably never walk, feed herself or see.
I remember sitting at the table one evening doing homework with Olivia and Kenzie, as Kenzie whipped through her assigned homework and I gave her a few extra math sheets to work on. When Olivia finished her math, 45 minutes after Kenzie was done, she asked me if she needed to do any extra math sheets. I said, “No, that’s OK, you’ve been working at it long enough.” Not looking up at me she said, “Mom, why do you expect less out of me than Kenzie?” I had no response, because the truth was, at that time, I did.
I come from a very academic family. From the time we were little my parents would ask us what we were going to take when we got to university, not if we got there. I always assumed I would have children who would do the same thing. That’s not to say I was always a good student; I barely scraped by in high school until one day my dad sat me down and said, “You know Wendy, not everyone is meant to go to post-secondary education. We just want you to have a career and work hard at it to be the best you can be.” In my teenage rebellion I thought, “Screw you, I am going to study hard and I will show you when I get in.”
As Olivia moved forward in school, it was clear she would need some help. I had no idea how to navigate the school system. We had private neuropsych testing done to understand how she learns, but I didn’t know how to translate that into the real-world classroom environment. Thank goodness for Brett’s uncle, the principal of a school. Otherwise, I would have completely lost my mind by now. He would tell me to go to the school and ask for various things. I would put on my big-girl pants and march down to the school to politely ask for what he had suggested only to get a “Sorry, we can’t do that Wendy,” and I would leave feeling confused and frustrated.
I would call him and say the school can’t do whatever it is he wanted. He would ask me to repeat the conversation. He would then direct me to go back and say what seemed to me like the exact same thing with one or two words changed and I would magically get a “of course we can do that.” That was when I realized that this was an area of her life that we would never be able to fix on our own, we would always need help. Even with help navigating the school system, I completely underestimated how heartbreaking it is to watch your child struggle to learn. It is like when your child is the only kid not invited to the popular kid’s birthday party, only every day for the rest of their school life. People often say, “Well, she just may never go to university,”
I know I am supposed to think, “Well that’s ok, she’s alive and that’s good enough for me,” but I don’t. I feel sad and mad and annoyed, every time.
In the last couple years, I’ve had to understand a whole new area of technology related to learning. I have learned about apps that shortened the length of an article, dictation programs, pens that you can record on, programs that can anticipate what she wants to write, and I have learned how to be a squeaky wheel, but not too squeaky, at school so her needs are met. I pushed her to work on a laptop all the time so she can have her school work with her whether in the hospital, on the couch or in the class. I learned to let some old-school ideas go – like she needs to memorize the times tables – and accept that she will always need a calculator to figure out fives times five. I have learned how to stop trying to “fix her” academically, and instead focus on finding new and innovative ways to maximize her strengths and minimize her weaknesses. In truth, I had to get over myself and focus on her. I’m not quite there yet. I still wake up every day hoping school will just click for her, and every day won’t be such a challenge. Selfishly I wish the ache in my heart that comes with watching her struggle would subside, but it hasn’t, yet.
There are five days until we head to the hospital. It is hard to decide if I want the time to speed up to get the surgery over with or slow down so I can have more time with her.