27 Months (belated)

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Dear Tallula,

On October 20th you turned 27 months. You had so many adventures and a new first! You also had lots of fun with visitors in town.

I love how you play. We made a little snail out of soft clay and you took him on a picnic and on an adventure around the kitchen. You are a little photographer. You take pictures with our phones but also with our camera. I’ve started a folder for you of all your photos. I love to see your perspective. Sometimes I catch little conversations or kisses you give your baby dolls as you hold them tight or push them around. You tuck them into their cots and whisper ‘nice and cosy’ and ‘I love you.’ You make up stories in your big tall doll house from Aunt Shannon. Your imagination grows more every day. I am so lucky that I get to spend my days with you. We have so much fun. ‘Where are we going today Mama?’

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I love how you play games on the computer with Abees. You always want to be the pink basketball player. You are learning to give him time to hit his switches and you both take great pride in winning and high five each other when the other wins.

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I love how you make Sebastian laugh. We had so much fun with Grandma on Toronto Island when she visited. I think it was really our last summer hurrah. You love to learn forward and fly ‘like a butterfly’ on the swings. I’m pretty sure your daddy is afraid you will tumble out, head first. Though he also likes to toss you up up up, and you ask for more, ‘again daddy. to the sky.’ And Sebastian just laughs. We saw farm animals and you sat in the front of a quad-cycle while daddy and Grandma peddled and I held Sebastian. We saw monarch butterflies on all the pink flowers and you took my big, heavy camera and hung it around your neck and took photo after photo. One of my favourites is of our shadows and the pink flowers. Two of your favourite things.

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You also got your very first haircut when Grandma was visiting! You sat up tall in the pink airplane and say very still. You held a Dora doll. I love how you love Dora and her Spanish words. You love trying to speak Spanish and one of these days we will take a class together.

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Your Granny and Pop came to visit all the way from Australia and we traveled to the 1000 Islands where we started with sunshine and then had a lot of rain. You love going on adventures and stomping in puddles, so the rain didn’t bother you. On the boat tour through the islands you spent most of your time moving chairs and making friends. I watched you making friends with little girls older than you that didn’t speak English and their parents marvelled at your friendliness. I think they liked your bright blonde hair and spunky attitude because I spied them taking a few photos of you with their daughters too, on holiday from Japan.

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I love how you climb onto Sebastian’s chair so you can be closer to him. How you move your chair over to be right next to his at dinner time. Sometimes you use it as a stepping stone but he doesn’t mind. He loves your adventurous spirit. If you can’t reach out and touch him you aren’t close enough. Side by side with your ‘bruva.’

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You really enjoyed having your Granny and Pop in town and went on many adventures with them. You even had a special girls’ morning out with Granny while I got my hair cut. You went to Queen’s Park and afterwards we had a little shopping trip on Bloor St. Your favourite part though was taking the subway. A rare treat for you. We spent as much time outside as we could on their three week visit, going to parks, taking walks and playing in the back garden.

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We celebrated Canadian Thanksgiving and I passed on the tradition of breaking apart the bread for the stuffing, something I always did as a child; though usually while the Thanksgiving Day Parade played on the TV in the background. But that’s US Thanksgiving. We celebrated with all the yummy things my mom and Grandma made for us when I was growing up. Sweet Potatoes. Corn. Green Bean Casserole. And of course Pumpkin Pie. The corn and the pie were your favourite. Which you wanted to help feed to Sebastian. He’s a lucky kid! You also decided that wearing your shirt off your should meant that you were Super Girl for the day. And we finished off the day with The Great Pumpkin Charlie Brown. You are a big fan.

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I love how you love bikes. And all because of your papa-daddy. Riding. Locking up. And fixing. You watch everything he does and you want to do it to. In fact, you are very good at it. I also know it’s one of his favourite things too.

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On top of the world! Evergreen Brickworks.

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When we call you a kid you tell us, ‘I’m not a kid, I’m Tallula!’ You are strong. You are brave. You are full of love and laughter, compassion and adventure. You balance on every surface worth a good balance, and you spread your arms wide open, embracing the world and those in it. You are Tallula. Our favourite little girl.

Being a mom really is the best.

Because even on the hard days there are always smiles. Always. At least one. IMG_0465

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Tallula has bronchitis. She’s using an inhaler to open up her lungs to breath easier. There is an airflow attachment that covers her face. I was reading the instructions and they show a teddy bear and suggest using one as an example so your small child isn’t afraid of the contraption. Tallula approaches it very seriously and matter of fact. She takes it out of the box. I shake the inhaler and she helps put it into the airflow tube. We place it over her mouth and nose. I spray. We count five breathe for each puff.

She enjoys the routine of taking medicine. She wants more Tylenol for her fever. She sees Sebastian take medicine every day. Three times a day. It’s a very important part of our routine. As much as she wants to help with it we don’t let her. Because it’s medicine. It’s something off limits to her. Except right now. Right now she has her own medicine. Her own routine. Just like her big brother.

There is beauty in figuring these little people out. I’m so thankful I get to. Because there are more happy days than hard ones. Without a doubt.

Sebastian, Epilepsy, and the Firefly Garden

4692941251_47d5311bdf_oWhen Sebastian was just two he had an ambulatory EEG. He had to have a box with a bunch of wires which were attached to his head, sit on top of his head. Although they put gauze and tape on it, it kept falling off. This was our attempt at keeping it in place. 

Sebastian is now six and a half years old. When we were living in Cairo he was first diagnosed with epilepsy -almost 5 years ago – while we were visiting family in Australia. Being told that your baby (already diagnosed with cerebral palsy) also has a seizure disorder is completely overwhelming.

Dear Sebastian,

Today – the last day of the decade- you were diagnosed with epilepsy. Who has time to think back on an entire decade when we sometimes struggle to take one day at a time? A storm blows in; big, grey clouds eat up the blue sky. Patches of white shine as the sun struggles to hold on to her last day of the year. We’re waiting for the rain. But I feel like it’s already pouring Your great-grandma died three days ago. Her heart finally gave out as she struggled for breath. Here we are, half a world away, where time was only allowed to stop for a moment. Here comes the thunder rolling in and breaking the silence. I wonder if it will wake you. As you laid sleeping in my arms, exhausted, I prayed for a long, restful sleep. You need it; seems your seizures are caused by lack of sleep. Systematic tonic epilepsy. Just like your CP. Its own special name (Dystonic Cerebral Palsy). While our family in Michigan floats through their days as they bury grandma, we struggle to learn about the new medication you must take. The rain begins to drop, cool on my arms.

We left Australia with bags full of medicine. Medicine I didn’t trust wouldn’t hurt my son. Medicine with pages of side effects and no doctor to monitor them. Although Sebastian’s EEG showed seizure activity, there were no seizures. Yet. The medicine was a preventative measure but when I called the International Hospital in Cairo in search of a doctor, they referred me to a doctor in London. An ocean away. We decided to monitor Sebastian closely without giving him the medicine. We also decided that we needed to move.
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Read more excerpts of letters to Sebastian and memories of our journey with epilepsy here on the Firefly (Community) Garden blog, a place to connect with other families, friends, and therapists working with kids with special needs. ‘Firefly Garden is a supportive community of mums, dads, brothers, sisters, grandparents, experts and professionals (from all over the world) helping each other solve the daily problems families like ours face.’

Cooper’s Pumpkin Patch and the Big Pumpkin Topple

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A week before Halloween we took a short road trip about an hour northeast of Toronto. I found a pumpkin patch online and away we went.

We decided to have lunch there and while we thought we dressed warm it was a bit chilly though the hot chocolate and squash soup helped a bit. We ate quickly at a picnic table partially sheltered from the wind and went exploring. Sebastian had to stay in his wheelchair for most of our outing as it takes about an hour for his milk to pump through and he needs to stay put 30-40mins after to ward off reflux.

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I try to plan trips around this to help him be as involved as possible but still feel bad if it seems he will be left out of a fun activity. Like going down a slide or on a swing. So I attached his iPad to his tray so he could take photos of everything, which included Tallula trying out the things he’d get to try out later too. He’s very patient and loves taking photos when he’s not just posing for them.

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While Tallula loved the horse swing and combine slide, Sebastian loved the hay ride. There was a ramp to get on with small bumps in it which made it possible for ali to push up and I helped lift him onto the wagon. Cooper’s is a small family run farm so there wasn’t help though I’m sure had we asked we would have gotten it. Laughter ensued at every jostle of Seb’s chair, and there were a lot. Tallula wanted to get off and run back to the slides.

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We saw produce, pumpkins, pigs, chickens and goats. All being grown for food. The wagon driver stopped at each one to explain how they take care and prepare whatever it was we were looking at with the end goal being food for others. Sebastian watched a group of boys about his age and I could tell he wanted to befriend them but was happy enough watching their silly shenanigans. No one really paid any attention to us which was kind of lovely to just go about our adventure without needing to be mindful of others stares and inquiries. Though during the big ‘pumpkin topple’ I would have loved some extra hands!

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After the wagon ride we walked through the pumpkin patch to pick out our pumpkins (3 for $10). It was a bit of a challenge with Sebastian’s chair and the uneven ground so we didn’t venture too deep. Seb found a good one right away and I put in on his tray to carry back to the check-out. Tallula found a small one but then decided to look for a bigger one. So ali carried both hers and his once they decided. Tallula has recently been into walking backwards. So, naturally, she was walking backwards and Seb was laughing at her so we decided to walk backwards too. We hit one of those pot holes and Seb’s chair started to topple forward. The weight of the pumpkin on the front of his tray likely added to the pull and I let out a small scream as I held on to the handle with one hand and tried to steady his chair with the other as the pumpkin went rolling. Ali had been carrying two large pumpkins and guiding Tallula so was a bit flustered before dropping everything to reach out just as I pulled Seb’s chair back up, having saved him from a major crash. Sebastian was laughing. My heart was beating out of my chest. The pumpkins all survived but the right paddle switch on Seb’s tray was not so lucky. Luckily it still works without the paddle but will need replacing.

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Phew. Never a dull moment.

After that I had no energy for the corn maze and the chill in the wind was picking up. So I went to pay and buy some butter tarts and pumpkin cream-filled cookies and THEN Sebastian got to get out of his chair to try the swing and one of the slides. Even though after the big topple I just wanted to go home. But how can I resist the opportunity to see this grin?

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For more photos and a little bit of text, check out Sebastian’s photo story. Created by me using Blurb

26 Months

Dear Tallula,

On September 20th you turned 26 months. I’m two months late and then some. So I reminisced through photos which remind me of moments I’m thankful to have experienced and happy to remember.

At the beginning of the month you were at Easter Seals Family Camp with us. You loved making new friends. You immediately sought out and befriended a little girl just a year older than you and you were pretty much inseparable the entire week. You learned things like ‘nice’ and ‘sweet’ with alternating one and two thumbs up. You also included her older brother who had a Red Racer like Sebastian. I love seeing your kindness to others. You became friends with another girl too, though she was much older than you. You loved her fashion sense and to you she was just another gal who also loved pink. You don’t see the wheels or the other differences. You see the person. You were brave and adventurous and easily handled your ‘own’ wheelchair during wheelchair basketball! It was awesome. You embraced new challenges and got into the after dinner games; your favourite was searching for the ‘zoo animals’ and bringing them back which won you the camp award for the week. You were both proud and shy to accept it. You went canoeing for the first time and loved being on the water. My biggest fear was that in your our fearlessness you would try to climb out or reach for something in the water. You didn’t. You might have gotten a little impatient, but you mostly enjoyed the ride. The lochs were especially fun. It was also your first overnight camp and although making s’mores was your  favourite part – or at least eating them was – you didn’t like sleeping in the tent. You woke while Daddy and I were at the camp fire and I heard you crying when I took a bathroom break.  When I arrived at the tent you were crying near the door of the tent, unsure of a way out which I know upset you more. Sebastian had just woken and was easily back to sleep. You were only able to sleep on top of me all night so it wasn’t a very restful night for either of us. Oh well. We will trying it again next summer.  You had a lot of fun rides on your bike at camp and with plenty trails, hills and trees to ride by, I’m so glad we brought it.

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On the way home for camp we stopped in Perth. I love how you organize things or make them tidy. Sometimes. Other times you just dump it all out on the floor and leave it once you find what you are looking for. You notice the little things when we are outside, like the colours of the flowers and the butterflies fluttering among them. You chase them but never quite catch up before the are gone. Nevermind. You’ve always got your shadow. And that makes you very happy.

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You had a lot of fun with your ‘bruva’ this summer. You miss him when he is at school and can’t wait to see him come off the bus after school. On the days we pick him up you sometimes ask to pick him up early.

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The park is your favourite place to go. Though you do love the shops and the farmer’s market (which you call the super market) too. You love balancing on anything possible and now do it ‘all by myself’. You climb up onto anything and everything, especially when it means reaching something like a water fountain.

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You love chocolate. Just like your dad. And bagels. With Nutella. And you need a hair cut. Sometimes. We can’t all agree.

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You love being outside. You are running everywhere and now you run backwards too. We are taking a dance class. You love trying new things but sometimes you want me to hold you like the other mama’s hold their young toddlers/babies. Sometimes you want to help them and do things for them. I just sit back and watch you. You are the oldest in the class and I wonder if you should be with more kids your age and older rather than the other way around.

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We tried to go to your first movie this month. It was a free premier of a 3D film. We left after the Paddington preview (which you and Sebastian both say is a must see this Christmas with Grandma). The only thing about the 3D you (both) liked was the glasses. We also went to your first musical. That was much more of a success, though we left with about 15 mins left. You were hungry. It was Seussical: The Musical. The songs were a lot of fun. And there was so much pink! Which is most certainly still your favourite colour.

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Last days of summer. Bubbles and playing in the sandbox. Meeting daddy in town for a lunch break from work. You look so grown up in your pink polka dots. You always pick your outfits now and I love it.

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I do wish I kept better track of our days and our stories without letting too much time pass before I match the words to the photos. There are so many photos and I hope that someday you will point to one and ask me the story behind it and I’ll be able to tell you. For now, we’ll start here. I love you Tallula. All of you. All of the time. Even when you say ‘no no no no no’ because sometimes you do that too.