Advocacy, Books, Canada, Cerebral Palsy, Films, Inclusion, Inspiration, Love, Notable Links, Our Son

Club Members Only

On Thursday night Ali took me to the world premier of Demoltion as the opening night film for TIFF (Toronto International Film Festival). As an anniversary gift he also got a ticket plus 1 to the after party. It was a great film. I am a fan of the director’s other work (Cafe de Fleur and Wild) so I was excited to see his newest film, though the after party is what was really on my mind. Starring in the film were a few famous actors: Jake Gyllenhall, Chris Cooper, and Naomi Watts. Would I get to meet them?! Or just perhaps rub shoulders?

King Street was buzzing. Patios spilled out into the street while the section is pedestrian only for the opening weekend of TIFF. With my new dress and heels I walked giddily next to Ali after viewing the film. We were going to the after party! I clutched my wild looking purse under my arm, bulging with a small scarf for warmth as the summer nights turn into brisk fall evenings. My copy of Jesse, snug next to it, filling up the rest of the space inside.

I read Jesse when I was pregnant with Tallula. Written by Marianne Leone, who, I learned while reading, is married to actor Chris Cooper (starring in roles such as Adaptation and more recently The Muppets Movie as bad guy Tex Richman). Marianne, also an actor and writer, took on the primary role to care for their son Jesse, born with cerebral palsy and later developing epilepsy, much like Sebastian. The book became one of my all time favourites, not just in the memoir genre of mothers of children with CP (because I’ve read ALOT of those) but as a book that I wanted others, especially educators, to read.

Marianne is a fierce advocate for inclusion and she fought until Jesse was included in a regular classroom setting. Like Sebastian, Jesse communicated in a way differently than you and I. He used a computer to communicate his thoughts and wrote a lot of beautiful poetry as a teen. Sebastian and I love his poem about swimming. Probably because he expresses the same thoughts Sebastian feels about swimming with such freedom of movement in the water. I was heartbroken when I reached the part of his story where he passes away at the young age of 17. Devistated I read on and then shared the book with others. I wanted my teaching friends to understand where I was coming from. Why I was fighting so hard for inclusion.

I didn’t know if Marianne would be at the premiere with Chris. But I hoped for it and took her book anyway. I also didn’t know how I’d approach them but I knew what I would say. We passed some of the actors getting their photos taken upon their arrival as we walked easily into the after party with our much coveted tickets. Ali went to the bar to collect free drinks while his colleague and I made our way through producers, agents, directors and the like. Spotting Jake Gyllenhall made the experience even more surreal. But where was Chris Cooper? After we lost the nerve to introduce ourselves to Jake, Ali split off in search of Chris. He returned a few minutes later, very excited. I swung back my drink, hoping to calm my nerves, grabbed his hand and followed behind, leaving Jake in the dust.

As we approached Chris Cooper I spotted his wife sitting on the couch next to him. Ali leaned in to shake his hand, introduced himself and then turned to me, ‘and I’d like to introduce you to my wife.’ With a perplexed look on his face, he greeted me kindly and shook my hand. Immediately I told him that we had a son with cerebral palsy and I had read his wife’s book. He smiled, equally surprised and happy, and pulled me towards his wife. He stepped over her and indicated for me to sit next to her. She too looked perplexed (who is this woman and why is she sitting down with us?) As soon as I repeated what I had said to Chris she pulled me into a great big hug.

We continued to talk for another 5mins or so and then she signed my book. She asked to see a photo of Sebastian. She asked about his school. I told her that I had found her fight for inclusion for her son so inspiring and then I had to tell her the schools in Toronto are segregated and she shouted ‘Shit!’ She was angry for me. We hugged again and it was time to go. I told Chris that the Muppets Movie had been Sebastian’s first movie in a theatre. Then I mumbled something about how I enjoyed seeing him in his other films. I didn’t need to. The real reason we were together was because of our sons. And that meant more to of each one of us than what film was up next.

I walked away having not met a famous ‘Hollywood’ couple but having met a mother and father who know what our journey is like. I imagined that I too had brought them joy as we remembered their own beautiful boy while talking about mine. We are a part of the same club. We always will be.


The rest of the evening was just icing on the cake. Yes. I also got to meet Jake Gyllenhall. But we ended up talking about Chris Cooper! I was surprised by how soft Chris’ hands were. When Jake introduced himself to me, ‘Hi. I’m Jake’, after Ali just tapped him on the shoulder and said, ‘Hi, I’d like to introduce you to my wife.’ I said, ‘Hi. That’s my brother’s name.’ He threw his head back and laughed. I then told him that I was really trying to find out who’s hands were softer. He insisted Chris and that also he had a more tender heart than he. We talked about why I had wanted to meet Chris and his son Jesse. He was waved at to get going, ‘I have to go wave at another event,’ he said. Doing the model wave. We said goodbye and he touched my arm as I turned away. Naomi Watts took my place and they stopped next to Ali and I for an industry photo. Ali and I made sure to pose in the same spot after they left for our own photo.

It was a pretty phenomenal evening! Thanks for the spectacular  celebration of 9 years of wedded bliss. I am one lucky gal.

Photos courtesy of Solarina, standing right next to us.  

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3 thoughts on “Club Members Only”

  1. Well, I have taken years off of reading your blog, for no other reason than I am not online very often.
    And in re-signing up with my newest email address I am in awe and amazement at the continued beauty and celebration that your lives seem to be taking. I witness you as deeply present, passionate and in gratitude.

    Thus, these energies rub off on me, the reader, and I am left feeling all of this, and more.
    Thank you, beloved one!
    -Amanda

    Liked by 1 person

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