What I See


‘I love you, Sebastian. Do you love me?’ Tallula leans over me to see her big brother, anchored down into the accessible spot on the GO bus back to the train station. Sebastian smiles. Tallula sees him and repeats his ‘yes’ out loud in case I missed it.

I scroll through photos tonight to look back at our short adventure to Hamilton for part of the long weekend. I see Sebastian’s mouth open as he tries to say something or vocalize his yes. Everyone takes for granted those muscles that are moving together to allow you to speak. Everyone is afraid of what it means to not be able to speak.

At the library today the kids stared and their mothers hushed them and asked them to move away. We waited in line to get some ribbon ‘hair’ for Sebastian’s puppet and two girls walked right in front of us and though they stared they didn’t see Sebastian. They saw a boy in a wheelchair and because perhaps they’ve never seen one before they thought he wasn’t a person worth waiting in line behind. So I reminded them that he was. ‘You see this little boy, he’s waiting in line too. Please stand behind him where the end of the line is.’ The woman waiting to help us told me not to worry, she would take care of us first. But who will tell these kids that my son is a person too? He is a kid. He likes to make puppets and have puppet shows even if I have to be his working hands. Their mothers won’t tell them as they call their children to the door to leave instead of saying hello. Their teachers won’t tell them as they call them back from staring instead of coming over to introduce themselves.

I am so tired of all of you who think it’s ok to ‘shhh’ your children or taken them away. I am so tired of you who think my son is not worthy of a play date with your child because he needs help to do things; even when your child asked for one. I am so tired of you who keep kids like my son out of your schools so that society will never learn to include everyone. I am so tired of a community that is so friendly and welcoming when it’s just my verbal and outgoing daughter with me but when my son who communicates differently, seated in his wheelchair, is there suddenly the community is gone.

After two weeks of doing crafts and events at the library with Tallula and feeling like it would be ok to bring Seb I was reminded of just how much people suck today.

You. Who let your kids stare. You. Who take them away instead of saying hello. You don’t let your children stare rudely at others without disabilities. You teach them to smile and say hi. So why is it different with my son who is friendly and eager to meet others and engage with them?

When I see my son I see a bright boy who loves life and embraces the opportunity to make friends. I see a boy who loves jokes and has a pretty wicked sense of humour. I see a boy who deserves to be treated as the child he is. I see a boy who is adorable and approachable and I don’t understand why more people can’t see the same thing.

Sunglasses and Glue

img_3401I know that scars are supposed to be ‘cool’. Remember Luke Perry and his tiny scar over his eyebrow that really just ended up being a bowling accident or something of the like? We all thought he was such a dreamy ‘bad boy.’ I know that it could have been much worse. And that for others it is. But I’ve still got a pink crescent moon on my cheek. And it’s not there for any other reason than my bike wheel got stuck in a street car track. There was no wrestling with bears or falling out of trees or stumbling over a rock while climbing a mountain. Just my face hitting the pavement. Actually, not even that.

My Warby Parker sun glasses actually did the deed. Flesh meets broken plastic sandwhiched against the pavement. Perhaps that’s why they’ve so graciously decided to replace my prescription sunglasses that I went all the way to Boston to try on. It started with a query as to whether they’d just replace the arm and ended with a one time special exchange, just for me and my broken face.

Today the last piece of glue peeled off after warm wash. The curve beneath, pink and soft. Like a baby bum after a warm bath. I look at my new face and dab some Vitamin E oil to help minimise the scar. I tell myself that I’m not really that vain. It’s just a small scar. But I still stare back at myself in the mirror. My new face. The pink will fade into white, but the space will always be there. It feels strange to touch and I wonder if I will get the feeling back in it entirely. I feel guilty for caring. I try to connect the scar to a deeper meaning in life and I find nothing.

It was just me turning left and stumbling down after getting caught in the street car track. And if I never leave Toronto to tell the story, it won’t be like a stamp in my passport, it will just be something I did where I live my life. My very safe, stay-at-home-mom life. Where accidents sometimes happen.

*I’m publishing this a month or so after I wrote it on the day when a recent study has been published about the dangers of street car tracks for cyclists, Streetcar tracks major cause of serious downtown cycling crashes, new study finds. 1/3 of all cycling accidents are a result of entanglement with the tracks. The solution proposed is a request to city planners for more separated bike lanes. Oh, and that scar in the photo above is mostly hiding under the shadow of my sunnies. 

Bicycles and Memories.

I’ve had a lot of time to think about what happened. After two plus days in bed one thing is certain, our bed isn’t that comfortable.

I wasn’t being over confident. If anything just relaxed. Happy to be out in the sunshine. The freedom of a night with other adults ahead of me. I took my usual path down to Queen. Side streets and through Monarch Park. One of my favourites. With its big, old trees and lush green grass. It reminded me the parks in London. I ride my brakes almost all the way down the hill, slowing cautiously before each stop sign. Waiting to turn left on Queen Street at a pedestrian crossing, a car let me out and I stuck close to the side of the road on the right, away from traffic and street car tracks. I went further down the street, crossing a couple of intersections, eyeing my left turn ahead of me. I looked back to indicate with my left arm out early enough to get safely into the flow of traffic. I easily crossed the first street car track and contemplated the next. Was my arm still out indicating my left turn up ahead at the light? I don’t remember. My front wheel got caught and I tried to pull out of the track saying ’NO NO NO, this isn’t happening, I can do this,’ and then in that split second I realized it IS happening and my cheek hit the pavement. Hard. My head was spinning as I caught a glimpse of the four people lifting me and my bike up and over to the curb. Out of on-coming traffic and allowing the traffic behind me to continue uninterrupted. There were no screeching halts. No soft or hard collisions.

Only later do I realize how awfully it all could have gone had one driver been looking down at their phone instead of the road. Or had those four pairs of legs — I couldn’t see past my helmet — not lifted me so easily and quickly out of further harms way. One thing was clear. It was Street Car Tracks: 1, Kara: 0.

I sat on a bench outside the Bubble Tea Cafe. Someone immediately brought me ice in one of those clear bags that I used to get iced tea on the street in Bangkok in. I hastily put it onto my cheek just as someone said I’d definitely need stitches there. On my cheek? I wondered. I couldn’t feel it but for the blood trickling into the napkin on the ice pack did I realise the extent of the injury over the throbbing from having greeted the pavement. I checked it a couple times to comprehend the reality. My head was still spinning. I knew what had happened and I started to get upset at myself. It hurt my face to cry so I squeezed my eyes tight. Two of the people who had lifted me up now had faces and we’re making sure someone was staying with me. A woman who had been driving had stopped to help and locked up my bike before moving on. The girl at the cafe sat next to me and also helped steady me. I fumbled with my phone after someone reached it out of my purse and called Ali. I hardly recall much but asking him to come get me. He hadn’t even driven since his own bike accident two weeks prior, so I wasn’t sure who would be coming to get me. We had friends over to help with bed time since Ali can’t lift the kids and I was going to be out for the evening. My big night out (a baby shower!) after carrying the load of taking care of the kids since Ali’s own cycling accident had taken a less than ideal turn (fractured vertebrae and rib).

*If you were turning 35 this week like you should be, I’d laugh about falling off bikes and getting stitches in our faces with you. And it would feel good. I’d remind you about the time you came walking up the driveway with a yellow glove on your hand attached to your forehead. Blood streaming down. Instead of picking up the neighbors trash that our dog had demolished you were jumping your bike. You’d flipped and landed on a rock. There were no helmets back then in the 80’s. You hit your head and it was gushing and you held it with a glove that had been picking up trash. I think we laughed at the incredulousness of the situation later. Did you get stitches? Probably. For story’s sake I’m going to say yes. So I can pretend that we are laughing at ourselves now for falling off our bikes and getting stitches in our faces except that I’m 39, not 9. Maybe it’s too soon to joke but with you in my heart, I can*.

When you lose your brother that you knew for your entire childhood — after all he was born the year my memories started — it’s difficult to accept having lived so long without him. I’m living in a third lifetime already, the second without him. The first was my adventure days in my twenties and now I suppose it’s my parent days. He will always have my childhood days. So perhaps I’m lucky to connect with him in spirit now over a bike accident even though it’s been twenty years since he’s been here. *Thank you for sending your angels to lift me up off that street and out of harms way. To keep me conscious and awake and help the nausea pass. To keep the stitches to a minimum and add a little glue. No fractures. Only a mild concussion*.

The fire men came first and then the paramedics. I forgot I was 39 for a moment and answered 38. As I sat there rocking, trying to focus, the woman at the Bubble Tea place put her arm around me, steadying me. I was afraid. My eyelids were heavy and I wanted to vomit. What if I passed out in the car on the way to the hospital with Ali at the wheel? I had her call Ali back to see when he would arrive. It was taking him so long. Then I had her call 911 because I was afraid. The fear creeps in slowly but rises fast.

The firemen checked me over while waiting for the ambulance and then Ali arrived. The Bubble Tea woman got me some water to sip on and stepped to the side. The kindness of strangers is really something to remember when you feel like humanity is failing in other departments. The firemen joked about me staying on trails after this, no more roads with street car tracks. It hurt my face to smile but I wanted to. They helped Ali put my bike into the back of our car while I ambled onto the ambulance. The paramedics told me we’d have to go to a hospital downtown and I explained to them the need to go to the one which is just a block from our home. They said they’d try…I explained to them the necessity including my injured husband, our disabled son, toddler daughter, and lack of family (though plety of great friends that slide right into that space that family usually occupies when you are in need). I later found out one of the paramedics also has a son with a disability and she fought to get me to the hospital near our home and that’s where we went. I remember a time when I believed that people were connected and that certain people came in and out of your lives for a reason and somewhere along the path of time I lost that belief and it was slowly trickling back on this day.

I sat propped up on the bed in the back of the ambulance, covered in an orange sheet and strapped in carefully with gauze on my leg. Road rash. Still my biggest pain was the headache accomanied by my fall, which would later be replaced by the needle shooting numbing solution into my cheek to ready for stitches. But as mentioned, that came later. Now we moved in slow motion. There were no sirens. I was not an emergency. I was just afraid. Injured, yes, but mildly. These coupled warranted me a ride to the hopsital just in case I might pass out. Which thankfully, I did not. As we jostled over the bumps I looked out the back window of the ambulance and saw Ali behind us.

I wondered if he could see me. I wondered if he tried. And I wondered what it was like for him to follow his wife in an ambulance. When he got into his accident, there were sirens. And he had wanted to call me to tell me what happened but the paramedics wouldn’t allow it because it might frighten me. It most certainly would have. My brother took an ambulance after he drowned. I know only because we had a very large ambulance bill to pay. We were also told that he had been air lifted to the hospital so perhaps a combination of the two. I digress. His bill was either in the hundreds or the thousands. I can’t recall clearly enough but I know that it was a lot and that someone else paid for it after he died. Ours? Each separately we received a bill for $45.

There is a memory for everything.

The hospital. We have gone to the ER for Sebastian plenty of times and regular hospitals are just not the same as children’s hospitals. Somehow they are not as scary. I’ll spare the details of the face x-rays (no fractures!) and shots for the stitches and even the stitches themselves. The most heartbreaking part was a little girl next to us with her dad who had broken a bone and she wasn’t in any pain but she was terribly frightened. And it was hard for her dad to ease her anxieties because he wanted her to be tough and to be brave and she felt neither of those things at that moment and she just wanted someone to reckognise that. When she wailed I heard Tallula in my heart and I’m not sure whether my tears were for the pain where the anesthetic didn’t work while I was getting my stitches (3 turned to 2 with a little glue on the side) or the pain of listening to that little girl and her fear she was so easily able to express.

I heard someone calling my name from around the corner, behind the curtain separating each of the ER patients being processed, or taken care of. I didn’t believe they were calling for me until their heads poked around the corner and smiled. It was the paramedics that had brought me it. They’d returned on another call and wanted to check on me. After a thumbs up for the stitches and recommendation for the Polysporin with lidocane, they were on their way. The night before they’d been the unit to respond to a shooting of a 10 year old boy in a neighbourhood not too far from our own. Their stories will always outdo my own.

Recovering from a concussion is hard work when you are used to working hard. Laying in silence in the dark and sleeping only when the Tylenol kicks in to minimize the excruciating headache there is so much time to think. I could hear muffled voices downstairs and I wondered if everything was going according to the way things should go and then I had to learn to let that all go and just trust that it would GO. Which is really the important thing anyways, right? Kids fed, watered, bathed, and entertained?

The irony of a bike injury so close to my brother’s birthday was not lost on me. Getting stitches out on his birthday? I usually try to do something special on his birthday. Like buy flowers. Eat cake. Go to a cafe or the beach or a nature walk. Today? Got stitches removed. It took me 30 years to catch up to the things Josh was doing as a kid. I wanted to embrace the feeling of stitches in my face equating with the fact that I am out there. I am living my life. No fear. But seriously? I’m a stay at home mom who did a lot more risky things in my twenties who must have serious angels about her because I could have had plently more mishaps along the way than the one I experienced last weekend. My kids are proof that I am living. I don’t need some stitches to prove it!

Five days later I was at a follow up appointment with our family doctor. The nurse shouted on her way out of the room, after passing me off to another nurse to remove my stitches, ‘You are alive! That’s a good thing.’ My brother would have been 35 this week. I would have called him up and told him about my accident. He would have teased me but his voice would have been full of love because that’s how Josh was. Full of love. But a joker. And that’s him. Forever 15.

Sometimes you fall off your bike and you just have to climb back on. I’m working on it. (I think Ali is too.) And that’s ok.

*I had my bike accident one week ago Saturday.

Take off and landing. 

Feeling nervous about flying with Ali and without the kids for the first time. Ever. Just going from Melbourne to Sydney for an early anniversary (10 years!) overnight but it still feels a bit scary. Also having left after they went to sleep last night to stay out closer to the airport at a family friends; I keep imagining them waking up for us and realizing we aren’t there. Remembering we will be gone for two bedtimes. They are in their Granny and Pop’s care which I know is good but I can’t shake the anxiety. 

Outside the plane window is a faint horizon as the sun hasn’t come up just yet. Still under a blanket of stars we head down the runway into what looks like the outback to a North American girl such as myself. The plane picks up speed and I link arms with Ali for a fairly smooth take off. I always feel a bit of a rush during take off. I’m usually bracing myself a bit more for landing though the biggest rush comes when you step off the plane to somewhere new or even return to someone’s arms. 

The seatbelt sign dings off and the lights of towns below glow in the early morning hours. To maximize time we got a 6am flight and will depart around the same time tomorrow evening, arriving home just after the kids are asleep. Having left last night while they slept, I will admit I’m already looking forward to kissing their sweet cheeks when we get home. 

But Sydney awaits! Sunshine, sea, and shopping! Good eats and drinks, maybe even some live music and dancing. Who’s to know but as we are heading into the next 10 years together we are excited to find out all that lies ahead. While I know we will feel a bit rejuvenated when we come out on the other side; feeling like a twenty something, newly in love again is the best part. 

  

Maple Syrup and Inclusion

On Friday I took the kids to Kortright Maple Syrup Farm to meet Sebastian’s class for a school field trip. We were running late due to a morning appointment and I wavered between going and staying home. The clouds hung heavy and rain was in the forecast. The kids really wanted to go, regardless of how late we would be. I was nervous. It was a 45 minute drive outside of the city to an area I hadn’t been before and I would be taking the kids on my own. When you have a kiddo with additional needs and a pretty energetic toddler, that can be a frightening prospect. I decided to take a leap and step out of my comfort zone. And it was awesome.

We arrived in time to have lunch with Sebastian’s classmates, which the kids were super excited about. Tallula, not surprisingly, is an honorary member of class and really gets along with one of the girls that has basically seen her grow up as she’s been in Seb’s class for the past 3 years. Everyone was happy to see Sebastian and he was glad to be there. After lunch, we tried some pancakes and the delicious maple syrup, stopped in at the gift shop, and then parted ways for a self tour as the rest of the class had to head back to school.

The first challenge was making it down the very steep hill with Sebastian’s very heavy wheelchair. While it is a paved path, there is some gravel and I was less than confident with the traction in my boots. I definitely envisioned loosing my footing and being dragged down the hill behind Sebastian’s chair, refusing to let go, much like I was as a child by our dog Boo Bear who had gotten off his leash during hunting season. But we made it and the uphill climb upon return was perhaps studier albeit short breath inducing.

We joined a few of the other school groups  having demonstrations along the path so that we could learn first how the native americans tapped sap and turned it into syrup, then the pioneers, and finally the folks of the future, the ones with electricity. The kids really enjoyed the demonstrations and as most of the groups were secondary students they were very thoughtful in moving aside so the kids could see, as well as made sure we had a clear path with the wheelchair. I did spot one of them trying to snap some photos of Tallula looking in the fake tap buckets (she’s so cute!);  while it’s sweet, I always worry her photo will end up on someone’s Facebook page. I suppose a hazard of said future/present. Modern times.

The last stop was the Sugar Shack, which was set up outside due to a fallen tree during last weeks’ ice storm. There was a primary school group in front of us so we went up close with them, partially because we blend in because the kids were similar age group and also so the kids could see. Of course, we do not blend in at all. There were a few kids at the front that decided Sebastian was more interesting to point, stare, whisper, and then -yes- giggle at, instead of learning about the journey of the maple sap to syrup. I was really trying to ignore them. I smiled and tried to act like we were just a family there to learn about maple syrup because that is actually what we are and were trying to do. I didn’t see their teacher nearby. Tallula sidled up close to Sebastian and started making her whining sound that she makes when she is not happy with the outcome of something or if something isn’t going her way. I could tell she was not sure about these kids and how they were acting. Some moments are teachable and some moments you just want to experience life and not have to be the one educating all the time.

So that I can take my kids out on my own and just enjoy the time with them, I am reaching out to the teachers. Teachers. Teach your students about differences. Teach them about acceptance and inclusion. Teach them about kindness and curiosity. Teach them about asking questions and saying hello. Teach them that kids are kids first. And they can have many things in common with kids that are different from themselves. If your school is still in the ‘dark ages’ (as I can refer to my own youth now that I’m on my own way to 40), and doesn’t include kids with disabilities in your classroom, or even in your school, then teach them about kids that are different because it will help them become a better person. Because society should include everyone. And they will grow up to be contributing members of society. Because in our own way, we all are.

I finally had to stop the kids and remind them that they were missing the entire presentation. I am tired of teaching kids that we encounter how important it is to be open minded and curious while also being kind. I am tired of teaching kids not to point or stare. Whispers and giggling was new for us. I’ve reached out to parents. And now I’m reaching out to the teachers that take these kids out into the wide world where they have the opportunity to expand the bubble that they experience at their non-inclusive school. And I’m pleading you, take it. Because honestly, I can’t do this alone.

***

That said, I had a really, super-duper, fantastic time with my kids. All on my own. I did it! It felt so good to get out of my comfort zone and experience a new adventure far from home with Sebastian and Tallula. I used to take so many  risks before I became a mom. When your child is born not breathing, it changes you. A lot. So for me, stepping out of my comfort zone is a big deal! And I did it. There were no meltdowns. Not mishaps. No lost kids. Everything was fine. It was fun. Tallula is more than a toddler these days too. She’s her own little person. And she’s growing up to be quite a fine one, if I do say so myself.

Where to next?

 

‘I could meet him there.’

I’ve started going through my drafts and finishing them. You know those moments when there is something on your mind and you want to get it out into the world and then you run out of steam and you don’t. Those thoughts tend to get buried beneath the newer ones. But here we are nearing the end of a very rainy March Break and well, these thoughts still rise within me so here I am, finally finishing them.

Sometime in January, I started with this…

There’s a March Break camp for kids ages 3.5-8 at a local kids programming centre. My kids both fit into that age bracket. But they can’t both attend the program. There are stairs leading into the centre. There isn’t support staff for kids with disabilities. The program only caters to able bodied kids. Is it being exclusive? Or is it following programs all over the city that are created with the status quo in mind? Certainly it’s not following the example of the school board. Or is it?

There are only 8 elementary schools in all of Toronto that have programs to support kids with physical disabilities. There are over 595 schools across the TDSB. I’ve also been looking into alternative school programs. The ones with wait-lists and lotteries. The ones that have holistic learning, learning time outside (Waldorf inspired), social justice and environmental curriculums. The ones with philosophies on their websites that include everyone. Everything except kids in wheelchairs. ‘I’m sorry, our school is not accessible. I wish you the best of luck in your search.’ Even with the AODA Accessible Ontarian’s with Disabilities Act, there is no plan to make schools in Toronto fully accessible for children using wheelchairs. Many of these alternative, optional attendance programs are on the third floor of buildings. I find it ironic that their philosophies clearly state, ‘equal education for all’, when they’ve left out a part of the population entirely.

It’s frustrating. Stressful. Heartbreaking. For me. I woke at the beginning of the week with a pinched nerve in my neck. My chiropractor asked if I had been unusually stressed recently. Unusually? Not sure about that, but excessively? Oh yes, the past couple of weeks have been hard.

…and tonight I’m finishing it.

I asked Tallula if she would like to go to a school where both she and Sebastian could attend together. She said yes. ‘Wouldn’t it be great if there was a school where you could both play on the playground at the same time?’ She replied, ‘I could meet him there.’ She looked up and me and smiled and I squeezed her hand as we crossed the road from her play school to the car. Later that day I asked Sebastian the same question. I was a little afraid to ask him because I wasn’t sure what answer I would get. He has a good group of friends at his school and I wasn’t sure he would want to leave them for a new school. But when I asked him if he would like to go to the same school as his sister, even if it meant leaving his current school and making new friends, his answer was yes. He is a social guy. He likes making new friends. He is also tired of riding the bus. It was novel at first…last year. Now, the bus driver changes often and while he usually likes his bus driver, he’s told me he no longer likes riding the bus. And why would he when he has to get on just after 8am for a 9am start and isn’t home until almost 4pm every day. An hour each way for a 20 minute drive because the bus is full of kids that don’t all live in the same neighbourhood.

I pick Sebastian up twice a week and drop him off some days too. I try to give him a break from the long days. When I’m driving to and fro I wish life was different. I was I could walk my kids across the street to our neighbourhood school. I wish that people thought it was important to have diverse classrooms. Instead I walked by the other school in our neighbourhood this week (on the one afternoon it stopped raining) and a boy stopped playing and pointed at Sebastian and shouted ‘It’s a boy.’ Pointed at him. And shouted. ‘Yeah, you are right, he is a boy, just like you.’ I replied. And then, ‘You know it’s not nice to point, right?’ And he stared. And Tallula walked up next to Sebastian and placed her hand on the arm of his chair. Creating a barrier between him and the boy. And we walked on.

I want my kids to go to the same school so I’m not sending one on a bus for an hour and walking the other to the school across the street. I want my kids to go to the same school so that the other programs in the neighbourhood will recognize that there are kids of all abilities in their neighbourhood and, hey, why not get StopGap to make us a ramp so we can begin to include them. I want my kids to go to the same school so that we can be in a community that will embrace them together. Instead of pointing at them and singling them out for being different. I want my kids to go to the same school because they deserve to be in a place that provides equal education for all. We are in a school board that says kids will be put in the most inclusive environment possible but they don’t make it possible to do so. I want my kids to go to the same school, because why wouldn’t I?