Happy 8 years to us! #tbt


Our anniversary falls on the opening weekend of tiff (Toronto International Film Festival). Each year since arriving in Toronto we’ve tried to catch a film or two – usually on or own so the other can watch the kid(s). This year we saw films TOGETHER: thanks to some good planning and awesome babysitters. Also, really awesome kids who just keep getting older which makes leaving earlier at night or even during the day – gasp – possible.


To start our September 7th, we celebrated with our kiddos. We looked though our wedding photos and had a big long dance party to our wedding album. And we were happy. The four of us. And then later on, we changed out of our jammies and into our fancy pants, just the two of us. So, yeah,  this year we saw a few films. And a few celebrities. We got dressed up. We had a few drinks. We enjoyed ourselves. Just us. It was nice. And fun. And even a bit carefree. Something I need to remember that I can be. Thanks darlin’.


Happy Number 8 to the man who can make me laugh even when I don’t know that I can. Je t’aime toujours!


25 Months

Because I love to remember. Even when it’s late.

Dear Tallula,


Today you are 25 months! We are at Easter Seals Family Camp (Merrywood). August 20, 2014.

I’m going to keep writing you notes every month until you are 3 because every month you change and grow so much. And I love taking the time to just sit down and go through all of the adventures we had over the past month as well as to just savour those moments and look at your beautiful face. Full of adventure and inquisitiveness. Curiousity. Compassion. Love.

The zoo! After you turned 2 we went to the Toronto Zoo with Grandma. You met an Alpaca. Your favorite part of the zoo was the splash pad (Sebastian’s too) and the kids zoo area. You liked the pandas too. You liked being with Sebastian and wanted to walk next to him instead of riding in your stroller. You wanted to run ahead too and explore. It was a hot day and you were both asleep within 5 minutes of leaving.


Two year check-up. You sat still for the check-up parts, like a very grown up little girl. But the rest of the time you played with the curtain, pulling it back and forth. I’m not sure the resident knew what to do with you! You liked learning about your heartbeat and the stethoscope. When the doctor came in she was very happy with your growth. It must be amazing to delivery babies and see them grow.


‘My Brother’. When Sebastian is upset you get very concerned and say ‘my brother’. You want to help him feel better and go near him to help. You love playing with him and I know you will miss his companionship when he does back to school. You don’t think about helping him, you just do. You make him laugh and he makes you feel loved and important. You sometimes call him Sebastian but mostly it’s still Abees.



Baking and chocolate chips. You love baking and your favorite part is eating the chocolate chips. You get very impatient for the tasting of the batter and licking the beaters which I equate as a rite of passage in childhood so I understand fully why it’s your favorite part.



Biker girl. You like to tinker with daddy’s bike and Sebastian’s wheelchair. You ‘fill up’ the air in his tires and push the pedals in daddy’s bike, watching the wheel go found and round (it hangs on a hook off the ground). Sometimes you try to fill up the air in your tires too, even though they don’t work that way.


Popsicles and pizza! Sharing popsicles with Sebastian and making pizza with daddy. What more is there to say? You share every Popsicle with Sebastian. It’s a part of the process. And when we bake, we wear our baking hats!


Being silly. This evening after dinner you decided to wash your tea set. Then you decided the bowl for washing was much better on your head. And then suddenly it was a hat for riding your bike. You danced around in the late afternoon sun. And we laughed with you and your great big imagination.


Climbing. You love to climb on and up everything and are getting very good at it. You balance on any raised path you find and do ‘high jumps’ off of it. Declaring each one.


Swim goggles and bee stings. You got your first bee sting! Right in the tip of your nose. You cried a bit and then were very brave. I love how you aren’t afraid of bees despite this experience. We have a lot of them around our garden and you’ve learned to say ‘shoo bee’ but not to swat at them. You certainly take cover with me sometimes too. And I’m glad. I don’t want you to get any more bee stings.

You also got goggles for swim class. Pink of course. You wear them but they full up with water because they aren’t tight enough. Or you wear them on top of your head. When you slide down the slide and splash me, filling my eyes with water you let me know I should be wearing your goggles instead.


The very hungry caterpillar. You found this fat, green caterpillar on the shell of the Chariot after dinner one day. And you were fascinated. So were Sebastian and I. It was a beauty. We took a lot of photos and every day for a week you checked that wheel for the caterpillar. But he had gone somewhere else to live.


Splash pads with Abees. You are simply the best sister ever. You love to join your friends in the fun but you make sure to check back with your brother too. We had a fun weekend with our good friends the ‘Divodos’ which included splashing around the water, climbing in the park, lots of good food with a trip to the beach and Ripleys Aquarium. I think your favorite part of that was not all the big fish behind the glass but the moving floor and the climbing structure at the end. Oh to be two.


The beach. You love going to the beach. It’s one of your favourite places to adventure to, after the park of course.


First time on the subway. You loved riding on the train. Sitting in your own seat. And being near your friends, the ‘Divodos’. After they left you woke the next morning and headed down to the basement to say good morning. It took you a couple days to realize they weren’t sleeping downstairs anymore.


Eating like such a big girl.


Archery. Sailing with daddy. We are having lot of fun at Easter Seals Family Camp. You are so adventurous and friendly. You are making new friends with the counselors and also a little girl a year older than you. You are nearly inseparable. I love how you look for her brother when you look for her too. Her brother also has a wheelchair like your brother. You are a good friend.




Every day is an adventure with you Lula Lu. and you tell us exactly what you want when you want it. And we so love that about you.



Day of firsts.

Sebastian’s first day of first grade coincided with his first ride on a school bus. He was so excited. I was so nervous (about the bus). We snapped photos in the morning sunshine while waiting. And waiting. And waiting. We watched families snap photos on their porches and then walk their kids to the school across the street. While we continued to wait. Ali had to ride off to work and still no bus.



IMG_5708.JPGTallula wanted her hair to look like Sebastian’s.

IMG_5710.JPGUsing our new ramp!

I started to worry that it wouldn’t fit down our road with all the drop off traffic. So we walked to the corner to look out and wait some more. Just as we were turning to walk back to our house for the third time Tallula saw the bus. So we waved it down and got on just near the corner instead of in front of our house. A half an hour late but with less traffic on the street to navigate. There were lots of smiles from Seb and his driver made him almost laugh. One of his friends from class last year was also on the busy which calmed me immediately. I took lots of photos and stood nearby as the door closed and the driver attached the tie-downs to Seb’s chair.


While doing so, a car came up behind and honked. I told him to wait and he yelled something back so I shouted back ‘he has to time him down’. Frantically missing the word ‘wheelchair’ so I can only imagine what he thought. After the bus left the man parked and apologized saying he thought it was just a photo op when he saw my camera. If he only knew. I simply said ‘no it wasn’t’ and walked into our home, hugging Tallula tight and crying quietly over her shoulder. Another milestone accomplished but my heart was still heavy. My contacts on the ‘inside’ told me that Seb arrived smiling. And I felt better.


After school Seb replied with a resounding ‘yes’ when I asked him if he had a good day. See above photo. I’d say it was more than good. I went in for lunch to coach his new teacher and EA with feeding tips and g-tube feeding instructions. I’m super happy with his team. His teacher told Sebastian he was going to learn to read this year and told me how much he loved circle time this morning as well as sharing about his summer using his switches. She’s already programmed messages he can activate throughout the day to be independently involved.


I know it’s going to be a good year. And I’m happy I still get to pick Seb up after school. So is Tallula. So happy, that she collided with another wheelchair when she ran towards her big brother to greet him as soon as she saw him. She also had a big day sending her brother off on the bus and going to the playroom by herself while I had the lunch meeting. Though it was just for a half hour, it was a big step for both of us. She joined in his classroom afterward, and I love the place she carves out for herself there, because this is our community. She was sad that Seb wasn’t coming home with us and couldn’t wait to see him after school. Neither could I.

Getting ready.

IMG_9584.JPGSebastian sporting his new glasses.

For the past 3 nights Sebastian has woken up around 1.30/2am. He has a drink of water, burps, and falls back to sleep. I wonder if he has anxiety dreams like I do about the first day of school. I used to have them every year a week before my first day back when I was teaching. I probably had them as a kid too. How do I know that he wants a drink in the middle of our hazy early morning wakefulness? I ask and he smiles. Knowing about his dreams isn’t as easy.

Sebastian’s new backpack is hanging near the front door. It’s black outside and bright green inside. We went through etsy and found some cool patches that I’ll sew on once they arrive. He’s already got his swim clothes and a change of clothes ‘in case’ packed neatly in the the front pockets. I’ve added his bag of reusable nappies too. We are getting ready a little bit at a time, in-between enjoying the last days of summer with neighbourhood walks, swings, and swims. Tonight I’ll finish packing it up and lay his clothes out. And set an alarm for the first time.

Sebastian will be in first grade! He’ll also be riding the bus to school this year. Also for the first time. My stomach in knots. Of course he’s very excited. But me? I worry about everything. Even if I don’t need too.

We got our new ramp for our front steps so we can have a smooth transition to the bus from inside the house. His new bus driver called me this week. (After I called the school to find out why I hadn’t heard from him yet though not because I had called.) Seb will be picked up at 8.30am right in front of our home. Which is almost perfect. Almost because now I can worry about all the parents dropping their kids at the school across the street honking impatiently at the bus stopped in the middle of our one way street. Or I can worry about the bus getting stuck and unable to get through our one way street with both sides lined with cars for morning drop off. And then decide to either come earlier or pick up at the corner which would involve a very cold wait come winter. See I think of everything. I want to rejoice in pick up time because it’s really the perfect time for getting enough sleep and eating breakfast. It’s the time I always meant to leave when I took him to school myself, but never quite left on time.

Pick up time aside there’s the actual ride. I’ve got him set up with a special collar to wear so his head can relax but not fall forward when he’s tired. He’s got his trays and I’ll send a boppy pillow to lean on too. What else? Oh yes. That non-verbal part. That makes me nervous. And a new person that is in charge of my boy. Someone I haven’t met yet that I must trust with my child. My non-verbal, physically dependent child. Someone who is driving him. Without me.

Letting go is never easy.

But it’s important. For Sebastian. And for me.

So I’m sewing. I’m sewing him a new kerchief for every day of the week. Several fun, stylish prints. We are getting ready together too. We wrote a journal about his summer adventures. Then we chose our top five to record on his Step-by-Step switch which he can activate with his new custom switches attached to his tray (communication post in the works). Sebastian vocalized a lot for this. And next we are making digital photo collages. We’ve been looking at photos from our summer adventures to choose our favorites.

Sebastian will be in Grade 1 this year. This will be his first year riding the bus. This will be his last year at this school. He will start the year with a smile, undoubtably. And he will use his smile and his communication book/iPad coupled with his ‘yes/no’ to communicate with everyone.

Starting with the bus driver.