La lecon de danse

Although Clarisse does not have any fever anymore, she still coughs a little bit.

She did well overall food wise. Avocado, pasta, chicken, ice cream + melted chocolate. We are slowly moving away from pure calories towards more healthy food. The key seems to be the size and the texture: small enough that she does not need to chew, with a preference to things that melt.

We are also going back to have her eat vitamines and omega 3 in the morning (which was the “boost the immune system” diet Elisa had put Clarisse on to prepare her for the big heart surgery).

We found a 13-minute video clip of Clarisse in one of her ballet classe (when she was 3 1/2). She is amazingly cute on it. The small videos we have of her are great tools to project a positive image of her and get her motivated to eat/fight. We intersperse them during the day at key points.

I also try to continuously re-enforce why it is important for her to eat. We use to watch a lot a video series called “La vie”, which is a cartoon explaining how the body works. There is an episode on the immune system. I am leveraging that story to explain to her that there is a battle currently happening in her body and that if she wants to get well sooner and go back to biking, dancing,  drawing, she needs to eat well so that her body is strong and can effectively fight the mean toxins. I think that she likes the image of that war.

Maya has been an amazing sister. Although sometimes she feels frustrated to not be able to do more for clarisse (we all do), today we had a discussion where I used the same war image and explained to her that all the energy/positive vibes she gives Clarisse when she plays with her, makes her laugh is energy that Clarisse receives and use to help her win the war – even though it is not always visible in surface.

I read on a couple of blog posts that a surplus of Vitamin D has had positive effects on people suffering from Chorea, so our new daily routine includes a 20-minutes sun bath around noon, just before lunch. She does not like it – probably because it is too hot and I am dragging her away from the TV but we then spend 20 minutes on the hammock in the shade where we cool down before TV+launch.

Last night I dreamt that Clarisse had recovered. She was talking again – “Shut, shut. Papa. Est-que tu peux mettre les barbapapa a la tele s’il te plait?”.  It felt like one of the happiest moment of my life.


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3 Responses to La lecon de danse

  1. caroline says:

    the power of visualization cannot be underestimated, and that’s a great reminder for all of us. you guys, all of us, are changing so much through this experience and I am dreaming of the day we can all look back and say what a nightmare it was and it’s a distant memory now that made us all evolve and grow.
    Love you all. May the fight continue and health and full recovery be the winner for this phenomenal family that I am in awe of.

  2. Erwan says:

    Edwin, just discovered what a tremendous fight you were all confronted with. I am speechless, greatly admiring how you’re holding on. Would like to help more, I can only send thoughts and love to you and your family.

    If you need any help that I could handle from here, just don’t hesitate. I’d be more than happy to give a hand. I’m hoping that sharing this with us on the interweb removes a tiny bit of the burden. Greatly admiring your spirit, as it’s been the case since I met you.

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