Category: "Perseverance"

Back to School - Lingering Lessons From Grade Four

by Helene Louise  

I loved my grade four teacher. It was the late seventies and, at that time, she was already “an old lady”. She was really wrinkly, didn't smile much, she was grumpy most of the time and she ran her classroom in a strict old-fashioned way, but I loved her anyway. She had a great big piano and from time to time she would play "I's the by...", a Canadian folk song from the East Coast as we all sang along, happily but not quite sure what it was all about.

My grade four teacher spent a lot of time lecturing us about "the good old days", like how it had been when she had gone to school in a one-room schoolhouse. That fact alone fascinated me, when the seventies already seemed like such incredibly modern times. One of the things she would tirelessly work into whatever she was teaching us was, "...If you have even just ten minutes of time, then you should make good use of those ten minutes. Ten minutes is enough time to get something done." Whether it was reviewing our times tables one more time or helping our mothers dry the dishes, she insisted that even small ten-minute intervals were to be appreciated and made good use of.

As I wrote in my book, the bulk of my daughter’s rehabilitation after a childhood stroke has actually come from the cumulative effect of many small bursts of effort—ten, fifteen, twenty minutes at a time—over many years. And arguably, this entire project of writing about our experience is also the result of many snippets of time that I’ve made use of while riding the subway, waiting for the bus, sitting at a coffee shop on my lunch hour or wherever else I’ve found a bit of time between other things.

I’m always grateful for the little signs that something good has come of my efforts, modest as they may be. For example, in this back to school season, the Association hémiparesie, a pediatric stroke association in France, has distributed instructions for how to adapt a ruler for those who have limited use of one hand (like children who have suffered a stroke). And in doing so, acknowledged that the idea is based on the adapted protractor instructions that I shared last year (first with an explanation as to how they came about and then as a bilingual version), also developed over many little ten-minute intervals of time. It’s a simple idea, of course, but all of our ten-minute contributions taken together, are making a difference someplace. For those kids who will be helped by these adaptations, the cumulative effect is indeed tangible.

It’s been a really long time since I was in grade four, but since then (along with eventually finding out what that folk song was about…), I have come to appreciate the value of my teacher’s insistence on making good use of even just ten minutes of time. Even if you don’t see the impact up close, somewhere, maybe even far away, in this case a year later across the Atlantic in France, something good can come of it all. (And who knows, maybe even further still—I was thrilled to recently ship the french versions of my books to New Caledonia, located in the southwest Pacific Ocean, about 1, 200 km from Australia!)

So, in this back-to-school season, I am thinking of my grade four teacher whose lessons are still resonating with me today, so many decades later. And maybe in some indirect way, still resonating in a classroom somewhere through the ways in which I have applied her advice. I can’t be sure of course, but I am sure that she was right about making good use of even just ten minutes of time.

“Bonne rentrée scolaire” as they say in French! (i.e. Wishing you a great back-to-school season!)

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Botox and...a break!

by Helene Louise  

It has been six months since my daughter had Botox injections as I wrote about earlier this year, followed since then, by almost daily exercises and weekly occupational therapy appointments. All these months later, however, much like the effects of the Botox itself which slowly faded away, so is our motivation.

Maybe it’s because at this point, we know that thankfully, my daughter has been able to keep much of the gains we were able to make while the Botox loosened the muscles affected by the stroke and facilitated her ability to progress. Maybe it’s because at this point, with the progress she’s been able to demonstrate, we know that, also thankfully, we are in line again to have the privilege of another similar treatment (which will, of course, require mustering up another sustained burst of motivation to support our efforts). Maybe it’s because at this point, with another long school year behind us, it’s normal feel fed up and want to take a break from everything that is routine. The weather is beautiful, the days are long and there are other things calling out to be done—books to read, trails to walk, laughs to laugh and other activities with my love ones that don’t necessarily start with “I should really…” September will be here soon enough and then, whether we have the motivation or not, we will all have to get back into the routine of “I should’s” and “I have to’s” .

So at this point, the motivation I have is to minimize the “must do’s”, take a bit of a break from the “I should’s” and try to enjoy these precious summer days as much as possible. Happy summer!

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Botox, Beauty and Bell's Palsy

by Helene Louise  

As I wrote in January, in order to develop a case study for a McGill University class at which I made a presentation earlier this year, I had to look back through my old files to revisit specific challenges my daughter and I faced after she was first diagnosed. I know I’ve been very dedicated to helping her overcome the effects of a childhood stroke but looking back at the assessments of those early appointments, the references to my younger self made me laugh out loud. For example, a report from 2004 described me as “…incredibly compliant and creative regarding treatment ideas and follow-up” and that the therapist was “…pleased with the dedication of Helene to provide her daughter with the best movement opportunities…”

I specifically remember when my daughter first started occupational and physiotherapy, long before she had learned to speak and could tell me how she was feeling, I was often told by the therapists that the extra effort she would be expending to try to work muscles that weren’t responding, would be very strenuous for her. And as a result, I should expect her to be more tired. Intellectually, I understood what that meant and emotionally, I’ve always tried to be understanding. But it was really only two years ago when when I was unwell for a time, that I could understand what it felt like to be in her position.

After feeling under the weather for about a week or so, I developed an earache. I didn’t think much of it but the next day, I woke up unable to move the muscles on the left side of my face. Diagnosis: Bell’s palsy. It was a temporary inflammation of a facial nerve that left me unable to use the related muscles, which in this case, meant exactly half of my face. I couldn’t close my left eye completely, I couldn’t raise my eyebrow, I couldn’t smile and I couldn’t pronounce certain consonants like “s” and “f”. It was a frightening experience but luckily for me, within a month or so I had recovered. 

The experience, however, left me with some very important lessons. The first one is that I had never realized how much I love smiling at my daughters. And, in terms of parenting, how much I rely on that one action alone as a steady source of encouragement and reassurance for them. Secondly, the experience was a blunt reminder of how fragile our lives are. Literally overnight, the simple things we take for granted—like our ability to smile at our loved ones —can be lost. And finally, in the context of my daughter’s rehabilitation after a childhood stroke, my experience with Bell’s palsy left me with a greater understanding of how things must feel from her perspective, in a way I couldn’t have imagined without experiencing it myself. Although I had been told early on that her efforts as related to occupational therapy exercises would be strenuous and tiring for her, it wasn’t until I was struggling myself with muscles that weren’t responding that I could really appreciate what it meant. 

In our current situation of intense occupational therapy while the Botox is making it easier for my daughter to use her hand, my experience with Bell’s palsy has brought me a new level of compassion. Not only for my daughter, in terms of how hard she’s working to try to make progress, but for all the children and adults who have to work so hard to compensate for muscles that aren’t responding as well as they should. Their courage to continue persevering to do the simple things that so many take for granted, is truly admirable.


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Somewhere Between Nothing and Everything

by Helene Louise  


As I wrote in my book, when I found out my daughter had suffered a pediatric stroke, I was also told that because of the stroke she would “likely never walk” and that in the specialist’s opinion, “it wouldn’t be worth the trouble” of helping her. 

 After many sleepless nights and much reflection I decided, however, that if I did nothing then of course there was little or no chance of improvement but if I did something, anything, then at least there was a small possibility of some improvement—no matter how small and imperceptible it might seem to others. My daughter might never regain all of the mobility she might have had had she not suffered a stroke, but somewhere between likely never walking and competing in the Olympics, between doing nothing to help her and everything possible, surely there must exist an area of unknown potential and possibility worth the trouble of trying to work towards. How could it not be worth the trouble of trying? 

 This summer, my daughters and I spent some time hiking in the Laurentian mountains here in Quebec (the photo above is one we took along the way on Mont Tremblant). Years ago, especially when I first received my daughter’s diagnosis, that would have seemed an absolute impossibility but now it’s our reality. It’s a family activity that we all love to do together. We hike more slowly than most people and much more carefully, taking into account various factors to make sure my daughter is steady and safe but we’re on the trails just like everybody else who loves hiking. With every step I never forget how far we’ve come, how much I have to be grateful for and in particular, how thankful I am that somehow, between nothing and everything, so many years ago I found the courage to aim for that unknown potential in-between, even if to someone else, it wouldn’t have been worth the trouble.

 Somewhere between nothing and everything, somewhere between “likely never walking” and competing at the Olympics, I believe there is almost always something. For us, that something is walking together happily and peacefully along the mountain trails. That is our Olympic sport and the photo above, our gold medal—no matter how small and imperceptible it might seem to others.

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The Importance of Jumping on One Foot - Part II

by Helene Louise  

As I wrote in Part I, in the early days of my daughter's rehabilitation, her inability to jump while standing on her right leg was identified as an "incapacity" that needed to be worked on. But as time went on, despite trying hard to help her with that, it was something I eventually replaced with other objectives. Safely getting to the top of a play structure, for example, playing soccer or riding a scooter. 

A few summers later, however, I was walking along the sidewalk as my daughter skipped happily in front of me. At a certain point, I realized that she wasn't skipping in her usual lop-sided way. She was, in fact, skipping using both legs equally!! "Hey, you're skipping with both legs!!", I called out to her. She spun around and with a big smile said, "Yeah, and I can skip backwards too," at which point she started skipping backwards making up a song as she went along about how she could skip backwards. I asked her when she had learned to do that and she answered, "I don't know, I just did."

It appears, that somewhere, in the period between when I was actively trying to help her learn to jump on one foot so many years ago and that moment, she had learned to do the very thing that I had long since given up on. And, it wasn’t because she had been doing targeted exercises or secretly practicing in her room when I wasn't watching. Probably, it was just that by always being active, knowing it was OK to do things differently, having a strong sense of self and knowing how to persevere, her physical abilities continued to evolve, even as I had let go of certain objectives.

When I looked really closely, I could see that there was a slight difference in how she skipped on her right leg as compared to left one. But then again, who’s really going to look that closely to see how equivalent the jumps are on each foot, and how often do we even jump on one foot? Regardless, seeing such unexpected  progress in this case was another "tiny triumph" that I quietly celebrated as I walked along behind my daughter, as she sang, “I can skip backwards, ya, ya, ya...”

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