Bunny Hugs and Pumpkins

We are still here! A lot of things have been keeping us busy and our minds occupied. A new school year. Two new schools, ironically neither the one we live across the street from. I’ll probably be bitter about that until we move. Which we will. Eventually. I’ve also been taking a weekly writing class in the evening AND I started a big project for NaNoWriMo! As always, we are enjoying life amidst the obstacles and challenges. Here’s proof! Photos from Forsythe Family Farms in Uxbridge a couple Sundays ago. Harvest Festival, picking pumpkins, a wagon ride into an enchanted Fairytale forest, slides and bike rides, hot cider…and watching fresh cider be pressed! An extremely friendly and accommodating place. We will be back! Happy Wednesday.  

Keep Fighting

I met a 52 year old woman today. She introduced herself to me after I made sure she had enough space to see the musicians at the Day of the Dead celebrations at Evergreen Brickworks. We had biked there so had the double chariot which is kind of a monster in small spaces. I had Seb on my lap to dance a bit to the music. When Tallula and Ali went to join the line dancing she rolled up to me and told me she had cerebral palsy. She wanted to tell me about Conductive Education and how it has really helped her (as a therapy) in the past 5 years since she had started. 

We chatted for a bit and I eventually started to cry. She told me that the doctors told her parents to put her in an institution and forget about her. But that things were better now, more inclusive. I partially agreed and brought up school. We talked about Seb’s current school and she too had gone there. She said they were great at the physical therapy part but not so much in the scholarly department. She left at 14 with a 5th grade education. She went on to a neighbourhood school and caught up 3 years of missed education in one year and eventfully went on to college and now works for the government in a very good job. She told me her mom fought to get her into a regular school and then fought to get her one-on-one assistance. She told me that once you find a principal willing to help you there’s no going back, just forward. Then she said, ‘Never stop fighting. Your son will only get in this world what you fight for him to have. Don’t give up. He will love you and appreciate you like no other.’ This is where I cried. 

Because I know it’s true. 

He will not get the equal education he deserves if I don’t fight for it. And that’s exactly what I’m doing. And one reason why it’s been so quiet around here.  

She went on to talk about her housing which has 24 hour assistance so she can live independently. She introduced me to her friends, met in college and now like family. We talked about therapy some and independence. How she had discovered Conductive Ed after her mom had a stroke and her dad found it for rehab for her. I took her email and hopefully we will meet again for coffee. She wanted to make sure she wasn’t overstepping her boundaries and assured me she knew I probably did all sorts of things but couldn’t help sharing how this therapy had helped her. I told her how great it is to get her perspective because I don’t really know what Sebastian is thinking. Mostly, I hope she knows how much our conversation helped me. More fuel for my fire. For our fight. 

Happy Halloween

For my Woody and Doc McStuffins. You made today perfect. From spending the morning carving pumpkins to getting all the candy ready to pass out; to photos on the porch to Trick-or-Treating.  Let’s not forget your request and love of the costumes I created just for you!   
 I am skeptical of people sometimes. I can’t count on them to include Sebastian like we do, so I had set out only planning to visit our closest (3) neighbors. We ended up stopping at every house on our one way street. With Tallula leading the way, bounding up the stairs, ‘Come on, Mama.’ And Sebastian smiling behind with his dad holding out his switch to say things that Woody would say, like ‘Yee-Haw! Giddyup, partner, we gotta get this wagon train a’movin’! And ‘I’d like to join your posse, boys, but first I’m gonna sing a little song .’ Every house had stairs so even though I really didn’t want to do it I couldn’t stop Tallula. And for that I’m thankful. I’m thankful for her open heart and her thoughtfulness and belief that others will be good. Why wouldn’t people see her brother and give him candy too? And they did. Some of them came down the steps to see him and others made sure she got extra to help fill his pumpkin. He had so much fun. They both did. 

  And now for costume photos!  
 It’s hard to trust that people will embrace us. But tonight they did. 

The New GoTo Seat has Arrived!

The verdict is in…we love it!

First, we tried it with the new floor sitter attachment in the basement play area. Tallula often wants to play with Sebastian downstairs (no ramp down for his wheelchair, even though Tallula tried to invent one)! Instead, Ali or I have to hold Sebastian so his playtime is less independent. The GoTo Seat changes that. Sebastian can sit in the seat on the floor with the new floor sitter attachment and play independently with Tallula. He even used his foot to press the button to race his cars! The options are endless, from jamming on the ukele to puppet shows!  The advanced head rest sculpts beneath the base of his head, giving him some extra head/neck support, which Sebastian needs as well. There is also an option to have the sit more upright or tilted slightly back, which is what we use for Sebastian to help support his lack of head control when he’s tired. Both are just as engaging.

We currently use the original GoTo Seat for the Chariot bike trailer so we were excited to try out the new and improved version, especially since Sebastian is outgrowing the original. The new one offers excellent padded side support to help keep him snug and upright, which Tallula appreciates as she’s not a fan when he leans over inter ‘her’ space. Ah, sibling rivalry. The head rest is also adjustable, so it can be moved up or down depending on the growth. Sebastian has the size 2, which covers ages 3-8. While Sebastian is 7, he’s small for his age so I know that this seat will last us well beyond that time period.While the seat was a perfect fit without his helmet – great for family walks – the sculpted padding did not work well for him when he was wearing his bike helmet, which we need for family bike rides. The extra padding pushed his head forward. I think if we switch the headrest for the standard which has less padding and a contoured shape, it would work perfectly. The beauty is that the head rests are removable so this could be an option. Another plus is when we stop at a cafe for lunch while out and about, we can just remove the seat from the Chariot and attach it to a cafe chair! The floor sitter is also compact enough to travel with the GoTo Seat for playdates, etc. too!

The new GoTo Seat continues what the original started, full family participation. We really love how much fun the kids can have together for play time and how we can be nearby to help but Sebastian can sit independently to play with his sister. It’s also an excellent stretch for his legs and hips. The new seat can still sit in grocery carts, but for Sebastian’s age and size, it’s not recommended (over 13 kilos). He also prefers his wheelchair for such outings. We also have a couple more summers in the Chariot for family bike trips so once we get the standard head rest, that will be a huge help as well.

We were provided a GoTo Seat to review. Retail price is $469 with the optional floor sitter accessory at $129. Sebastian is starting to age out of the seat as he prefers being in his Red Racer wheelchair for most independent activity so the floor sitter accessory is a must have for us so he can now play on all levels of our home more independently. A huge bonus is the stretch it gives his legs when his sitting on the floor as well. The interaction with his sister at this age, priceless!  All opinions my own.


New colour combinations! Two new sizes, 1 (ages1-3) & 2 (ages 3-8).


More information on the Firefly GoTo Seat AND enter to win one of your very own!

World Cerebral Palsy Awareness Day

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.

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.