Birthday Birthday Birthday!, Canada, Cerebral Palsy, communication, filmpossible, G-Tube, Love, Music, Notable Links, Our Son, Parenthood, Photos, Sebastian at School, Sebastian's Achievements, Toronto

Five.

Dear Sebastian,

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Today you are five! You are such a big boy. I am so proud of you and how far you have come. The celebrations started on Saturday and didn’t end until bedtime today. Each day full of sunshine. Life is good.

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This year you became a big brother! I think Lula agrees that you are the best big brother ever. You don’t get mad when she turns the tv off when you are watching Sesame Street. You enjoy watching her discover the world around her, even when that means interrupting yours! Her laughter fills your heart with happiness and soon we are all giggling together. You don’t mind that she crawls up onto you and pats your face, sometimes accidently poking you in the eye. Or that she reaches for your glasses like a reflex, even though she shakes her head no, knowing they are yours. You love your sister unconditionally. And she loves you.

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You are in your third and final year of pre-school this year. Even though you were old enough to move on last year, we wanted you to have this time with your sister. And I just wasn’t ready to give you up for a whole day of school just yet! You continue to make friends with everyone you meet and next year you will hop right into senior kindergarten. Such a big boy. Our hallway is adorned with your artwork, created in so many different ways.

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You traveled to your birthplace, London, in November. Before we moved to Canada, you were a pretty seasoned traveler, having taken your first flight (to Switzerland) at 3 months and then moving to Cairo when you were just 4 months old. It was exciting to get on the plane again and have a new adventure, this time with a baby sister along for the ride AND your Red Racer. You were certainly a man about town in the big L O N D O N. You loved exploring, from the art on the walls at the Tate to the buskers on the street playing music in Broadway Market. You are a fabulous travel companion.

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In January you got a Gtube. It has been a bit of trial and error and eventually success. You are so brave and such a superstar. You were able to laugh even when you felt your worst. Some afternoons and evenings have been really tough. But you keep on keeping on. Tomorrow you will get your button, just like Patches. I hope it is even more comfortable and makes life easier for you.

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This year you really developed your communication skills using your communication book. And your ‘yes’/’no‘ is clear for everyone. I’m thankful for all the folks in our life and even some strangers we meet that take time to wait and ‘hear’ what you have to say. Your book helped us get through the early days after your surgery when you just weren’t feeling yourself. It helped us understand how you were feeling and what you needed because it allowed you to tell us!

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We are also working with the CWAS team to trial an eye gaze computer. So far, calibrating your eyes with the program is a challenge, but you’ve never been known to give up easily. We will continue to work on it as well as hone your skills using a switch to communicate in conjunction with a low tech and higher tech device. You are even using reading/writing to communicate with us!

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You helped us Bring Visibility to Disability through the Filmpossible contest at Holland Bloorview. With votes from all over the world, you won FIRST PLACE in the Visibility Award category. This Thursday we get to celebrate and accept your award at the Filmpossible Fete. We are so proud of you and the way you bring light and happiness to all those you meet and even those you have yet to meet. You are a star!

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You started taking music classes and have been able to try all sorts of instruments, including the VMI, a special instrument integrated with technology which allows you to create music moving your limbs. Last week you played the drums, using the movement of your hands and feet, for a half an hour straight!

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As I reflect on the last year, I also see flashes of the four before. Five years of memories with you and every day I am thankful for more. I am so glad you are my son.

Love, Mama

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2 thoughts on “Five.”

  1. Happy Birthday, Sebastian! It’s a day late, but it looks like you were too busy yesterday celebrating to get this anyway! Here’s to another year of adventures and much love.
    Mom, Keep living it with love and honesty. Thanks for sharing life when you can. May you be richly blessed!

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  2. Such a joy, I’m sure Sebastian had a wonderful birthday, thanks for sharing Kara and being such a great MOM, you are so blessed to have Seb and now Talula in your life, you and Aly are doing a great job. THANKYOU

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