Years ago, if I heard the word “Botox” I immediately thought of speculation in the gossip magazines about whether or not a Hollywood star was suspected of having rejuvenated their appearance using Botox injections. Botox, (for those not as familiar with gossip magazines as I used to be), temporarily relaxes specific muscles for a period of three to four months, providing an opportunity during that time, to appear less wrinkly. However, as I’ve learned in the context of my daughter’s rehabilitation after a childhood stroke, Botox injections have a much wider application, such as addressing muscle tightness related to various conditions including the effects of strokes, even in children.

At the beginning of January, my daughter had the privilege of receiving such a treatment here in Montreal. Botox was injected into her arm and hand to try to relax those pesky muscles that despite all of our rehabilitation efforts over almost a decade and a half, remain so tight that they limit the use of her right hand. As is the case in the context of beauty treatments, in the context of physical rehabilitation, Botox temporarily relaxes specific muscles for a period of three to four months, providing an opportunity during that time to, not appear less wrinkly as in the glossy magazines, but to work really, really hard during that little window of opportunity to try to strengthen the opposing muscles enough so that hopefully, when the Botox wears off and the muscles that were injected go back to their usual state of tightness, greater mobility and dexterity remain.

This sounds easy and straightforward but in real life, or at least in my life, not so much. Since the Botox took effect, we’ve been getting up extra early every morning to do what we’ve been calling the “hand Olympics” because with the stress of any given work/school day for each of us, and the regular homework/activity schedule in the evenings, it’s the only way we can consistently fit in the effort required to make any progress at all. And, it does feel like we’ve been training for some kind of Olympic event only on a teeny-weeny micro level where heroic achievements are measured in micro-millimeters. Thankfully, we have seen progress. In the darkness of the early morning hours, we’ve been thrilled to see my daughter’s hand be increasingly responsive and see what is possible for her when the muscles aren’t working against her.

Now however, at about the three-month mark, we’re at the point where the Botox will start to wear off. Will any of the progress we’ve seen, remain once the Botox has worn off? Will we have anything to show for the many early morning hours we’ve put in somewhere between a quick breakfast and the start of another long day? I’m not sure. Still, I remain hopeful. Even if those pesky tight muscles are so stubborn that afterwards, the tightness from the stroke overrides the gains we’ve seen over the past three months, I will see beauty. Unlike the glossy magazine covers, I’ll of course have all the same wrinkles as I had in January, maybe even more because it’s been stressful to try to fit this in every day and try to remain patient (I need to refer back to my own book to remind myself about the challenges of staying patient in the context of physical rehabilitation...).

But, throughout this period of intense effort, with a daily opportunity to annoy each other before most people are even out of bed, we continue to do our best on a shared goal. Helping her as a teenager is certainly very different from the period of time I wrote about in my book, when she was a young child and everything could be turned into a game. But, we're still working together, we're still coming up with new ways of doing the exercises and we're still finding ways to make each other laugh.

I certainly hope that in the next few months my daughter will have the satisfaction of keeping at least some of the increased mobility she's working so hard to gain. Either way, she'll have a clear memory of what was possible which will surely be a powerful motivator and an important reference point for her future efforts. Along with the fact that even bleary-eyed, we're still cooperating and laughing together more often than we're not, this is the beauty in the Botox that I'm seeing right now.

This past holiday season, in and around the usual activities like trimming the tree, cooking for my family and wrapping presents, I did something I’d never done before — I spent a considerable amount of time developing a case study to be used as a learning activity in a university classroom.

Further to my presentation at McGill University’s School of Physical and Occupational Therapy last year, I was asked if I could help develop a case study or “Professional Reasoning Seminar” that could be integrated as a learning activity along with my presentation. I thought it was such a wonderful idea to develop a scenario whereby students would read a clinical write up of a case involving a young girl recently diagnosed with a pediatric stroke, then read the parent’s perspective of the situation as I’ve described it in my book, and then, hear me talk about the themes in my book in a way that I think is most relevant and empowering to young people who will soon be joining the workforce.

In terms of the writing process in this case, initially I found it terribly difficult to look back through my old files to revisit the specific challenges we faced when my daughter was first diagnosed and write about it in a very clinical way, without the themes of hope and perseverance that I’ve derived from our experience since then.

But, as the hours went by and I saw the case study taking shape on my computer screen, knowing what I know now, how much hope and potential there was even when I couldn’t see it, my discomfort slowly turned into a quiet sense of triumph — that fifteen years later we have come so far and I’ve somehow found the strength to turn what was such a difficult period in my life into something that has the potential to make things better for other families in the future.

This week, I had the privilege of speaking to a new group of students and afterwards, the opportunity to watch and answer questions as they worked in groups to develop strategies and solutions for the young patient in question. To some, it may seem strange that I would spend part of my Christmas holiday working on turning what was a personal period of crisis so many years ago into a case study. But, having the opportunity to start the new year seeing my efforts used so constructively was a gift indeed...!

In September, I shared how we adapted a protractor to help my daughter better succeed in math class (Teamwork for Back-to-School Success). Given the interest there has been in this document, I’ve updated it to be bilingual - English and French. Here it is...

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En septembre, j’ai partagé comment nous avons adapté un rapporteur afin d’aider ma fille à mieux réussir dans son cours de mathématiques (Teamwork for Back-to-School Success). Étant donné l’intérêt que ce document a suscité, je l’ai mis à jour en le rendant bilingue - anglais et français. Le voilà...

adapted protractor en-fr.pdf

Today I was very grateful to have the opportunity to make a presentation to a group of students at Marianopolis College, one of Quebec’s top pre-university colleges here in Montreal. In comparison to my presentation at McGill’s School of Physical and Occupational Therapy earlier this year, the group of students today was much younger and much more diverse in the sense that they have not yet chosen an area of specialization. I wondered what I might talk about given that focusing on the challenges of navigating the rehabilitation network in this case was unlikely to be of any interest or relevance to them.

In the end, I decided to focus on the importance of staying open to the possibility that something good might happen even when faced with well-informed expert opinions to the contrary and a mountain of seemingly insurmountable challenges. I talked about how when my daughter was first diagnosed, I was also told that she would likely never walk and that there was nothing I could do about it. But, that by working with her and encouraging her just the same, she eventually did learn to walk, to the point that now, she is free to imagine her life full of activities as it might otherwise have been, with minor adaptations as required.

At the end of the presentation, a student came up to me and said that the story of my daughter and me as I had just told it, was the story of her and her mother. And, just like me, when she was a baby, her mother had been told that she would likely never walk. But, just like me, her mother had worked with her and encouraged her just the same and there she was, so many years later, having just walked across the classroom to come and talk to me. The similarities in our experiences were incredible, right down to the fact that her mother had spent an entire summer helping her learn to ride a bike, just as I have done with my daughter, to the point that now, she too is free to imagine her life full of activities as it might have been otherwise, with minor adaptations as required.

I didn’t have any particular expectations when I set out to write about my experience in the context of this project. I only hoped that it might be helpful to someone in some small way, in a way that I wish I could have been helped when I needed it the most. But as it turns out, this project continues to be helpful to me too in so many surprising ways. The warm response from the students today who have their entire university and working lives ahead of them and very little in common with what I have lived, and at the same time, the immediate understanding and compassion I felt with the student who approached me to say her story so closely resembled mine, remind me that there is always much to be learned and much to be appreciated, even when you’re not expecting it. 

(For English text, see below)

Je suis très contente de pouvoir écrire que mon livre, The Little Dark Spot: How I Came to Terms with My Baby’s Stroke, est maintenant, enfin, disponible en français! La petite tache noire : Comment j’ai fait face à un AVC diagnostiqué chez mon bébé est maintenant disponible sous forme numérique auprès Amazon (incluant Amazon.ca et Amazon.fr).

Je tiens à remercier mes chers amis francophones qui sont toujours prêts à répondre à une série interminable de questions sur les nuances de la langue française, et Cécile Latizeau pour ses révisions et corrections attentionnées au cours de la dernière année.

En plus d’accomplir quelque chose qui était très important pour moi, je peux facilement dire que cet exercice a été une façon exceptionnellement efficace d’améliorer mon français!

Ci-dessous, vous trouverez un extrait ainsi qu'une sommaire. Bonne lecture...!

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I am truly happy to be able to write that my book, The Little Dark Spot: How I Came to Terms with My Baby’s Stroke, is now, finally, available in French! La petite tache noire : Comment j’ai fait face à un AVC diagnostiqué chez mon bébé is now available as an ebook on Amazon (including Amazon.ca and Amazon.fr). 

I am very grateful to my dear French-speaking friends who are always so willing to answer my endless series of questions on the nuances of the French language, and to Cécile Latizeau for her thoughtful revisions and corrections over this past year. 

Besides accomplishing something that was really important to me, I can easily say that this exercise was an exceptionally effective way to improve my French!

Below, are an excerpt and overview. Happy reading...!

la petite tache noire sommaire.pdf la petite tache noire.pdf the little dark spot-overview.pdf the little dark spot.pdf