Today is World Cerebral Palsy Awareness Day. Every day is CP awareness day for our family. Every day is an adventure, whether we decide it is or not! Everyday we experience the same kind of love and laughter you feel with your families. Sometimes there are challenges that seem insurmountable but they never really are.
Sebastian loves to be outdoors and
race his sister in his Red Racer. He loves to play soccer in his walker and ride his (adaptive) bike around the block. He loves to go to the park and swing as high as he can. He loves much of the same things other kids his age love. Chocolate ice cream after dinner? Yes, please!
We help Sebastian DO everything but we also believe he CAN do most things with our help. We INCLUDE him in everything. We live a good life. And we love. Spread some love today. Wear green. Share a story about SEB. Include others. There are no broken dreams, just new ones. Perspective. It makes a difference.
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.
So this is here it all began…Free As Trees. Blogging. 11 years ago this month.
This was my first real blog post. 11.5 years ago I met a boy who encouraged me to write my thoughts on the inter webs. Before digital cameras were the norm and photos were developed on film then scanned onto CDs, then uploaded to flicker to finally post on my blog. In the early days my words were the only photographs. I was so young! This is a little glimpse into that life before this current one. I journaled across the screen. Thoughts and ideas. Places and art. Poetry and stories.
To commemorate my 1000th post I flashback to the early days. And the younger us. Married 9 years this upcoming Monday.
Kathmandu, Nepal. We travelled on to McLeoud Ganj from there. I didn’t meet the Dalai Lama. But I was naive enough that I thought it was possible. Because then, anything was. And sometimes it still feels like it is. Especially with this guy next to me.
Onward to the next 1000!
For the first time this summer Sebastian and Tallula had swim class without me. I watched from behind the glass upstairs, with other parents and caregivers. They took turns looking up for me to make sure that, yes, I was there. I chatted with another mom whose son was in Sebastian’s preschool and then later a mom who used to be one of the therapists on his communication team. I listened to moms of kids who likely lived nearby in the neighbourhood and only came to Bloorview for the Red Cross Swim Lessons. They talked about the level of their child’s swim abilities mostly and other things that didn’t matter to me. I usually tuned them out.
I watched Tallula gain confidence in putting her face under water and blowing bubbles. Floating on her own and kicking independently wearing a life vest. I watched Sebastian kick across the pool, his head leaning back on his swim teacher. Sometimes he’d wear the swim ring and float on his tummy with help. His body free in the water. Moving effortlessly and making progress. I’d watch the kids swim towards each other and smile, enjoying being in the pool together.
Tallula was sad that it was their last day to swim together. Sebastian has a pool at his new school where he will swim twice a week and Tallula will hopefully continue with lessons here once a week. Every night her favourite part of her day is when she went swimming. Even when she didn’t.
I remember the first time Sebastian purposefully kicked his legs in the water. It was in Thompson Lake in Howell, Michigan. We were also doing HBOT sessions that summer. He was about 15 months old. It was amazing. And now he can kick all the way to the other side of the pool with someone guiding him. I remember when Tallula refused to put her face in the water and now she was blowing bubbles for 3 seconds!
Sitting up there watching my kids swim together, I was full of proud moments. Moments of pure happiness and not only did I enjoy watching them but also seeing their independence. Which is a huge thing for Sebastian who depends so much on others (and me!) so much of the time. I loved seeing Tallula’s confidence build and the risks she took were so much greater than when I did swim class with her.
I was having a lovely conversation with one of Seb’s former therapists as we watched our kids swim and talked about end of summer plans. Then I overheard the two women next to me, ‘It’s so nice they let that disabled boy swim [here]. Look how happy he is in the water.’ I was silent and she said, ‘That was weird. I’m sorry.’ I said, ‘Yeah, considering where we are.’ We were both shocked. The women heard us though and started talking about when the hospital was built. As though to tell us they understood where we were.
I wanted to say something back. But all I could hear was that woman saying ‘that disabled boy.’ THAT DISABLED BOY. Not, that cute boy in blue having the time of his life kicking and swimming towards his sister. Then laughing together. I couldn’t believe what I was hearing in THIS PLACE. This place which is practically our second home because we spend so much time here and we know so many families and people within these walls. This place that is OUR COMMUNITY. This pool that is warmer than any other pool in the city because it’s FOR kids with disabilities. Not so YOU can bring your kids to learn how to swim. That’s a bonus for you. You do not belong here. That’s what I wanted to say. You do not belong here with my ‘disabled boy’.
That disabled boy. My heart broke a little. I was thankful there weren’t any other kids around to hear these women. These so very ignorant women. And you know I got stuck in the elevator with one of them and her daughter. And I had to bite my tongue so hard I thought it would bleed. Because of the kids. And you know she didn’t even know what was on the second floor of the ‘hospital’. I opened my mouth to tell her about the aquarium and the big game on the wall you can manoeuvre with your body or your wheelchair and I stopped. Because if I started there’d be no going back.
But next time I will.