Mother’s Day Memories

On my first Mother’s Day I was carrying a photo with me of Sebastian in an incubator, connected to machines, as I was waiting for the second bus that would take us to the hospital to see him. We ran into one of Ali’s previous work colleagues and despite a photo in which my baby was connected to tubes, I proudly showed him off. He looked shocked and asked if Sebastian was ‘poorly’. I always remember that interaction as clearly as the bright red double decker buses whizzing by on that spring morning in East London. 

Sebastian had been born on the Tuesday morning before Mother’s Day. After 41 weeks of an uneventful pregnancy, and a 36 hour labour, he was born grey and not breathing. The team at the hospital hadn’t been monitoring him properly and he had almost died. Instead he spent the next 16 days in the NICU and then came home with a feeding tube and on medications for severe reflux. He didn’t cry for the first week and a half of his life because he was too drugged from the medications they put him on to stop the seizures from the brain injury during his birth. 

No one tells you that things can go wrong during labour. No one tells you that your baby could be born not breathing and that you won’t even be told the sex of your baby as they whisk him to a resuscitation table surrounded by a half dozen doctors that have just filled the room. No one tells you that your baby won’t be laid on your chest to try and nurse minutes after being born. 

My first Mother’s Day could have gone so differently had Sebastian not been resuscitated. That was 9 years ago. 9! And I have a very strong and brave boy with me now. The past 8 weeks have included surgery, rehab, and recovery; we are now able to enjoy walks in our neighbourhood in the after-dinner-sunshine and dance parties to our favourite tunes in our dining room. We are laughing with a sister that gave me a very different birth story. One that did involve lying on my chest and nursing immediately. Not everyone gets that second story. I’m so thankful I did. ❤️

Making a Splash…

…with the new Splashy, by Firefly.

We were super excited to receive the new bath seat, the Splashy for Sebastian to try out. Sebastian chose green (one of his favourite colours) and that’s all we knew about the product until it arrived in the post.

Easy to assemble, just a few pieces to click into place and two small bags filled with the accessories; a 5-point harness (adjustable), and  four soft, oblong pads for further support as needed. The seat has holes throughout to enable you to chose the style and sizing that works best for your child and their needs. The cut out handle on back provides an easy way to move the seat. There are four suction cups on bottom which are sturdy but very easy to unattached from tub.

The product itself is easy to wipe down and clean with plastic straps for adjusting. They were easy to tighten and a bit harder to loosen, which makes it safe and supportive if you have a child that wiggles or moves a lot. I found it easy to move pieces around even with Sebastian in the seat to adjust supports as needed. We tried one of the supports behind his head and then moved it to the side to offer support when he is tired or leans to the side, as he does. Once the 5-point harness was adjusted to support the chest area, rather than the waist as we first tried, there was more comfort and support for Sebastian. The seat smoothly reclines back for relaxing or for kids with less head control. Even though Sebastian struggles with head control, especially at the end of the day, he preferred to have the seat more upright to interact with us.

We tried the seat with clothes on outside of the tub to make sure it was the perfect fit and made the necessary adjustments. Once in the tub, it’s easy to strap him into place. We put one of the supports near the base of the 5-point harness to keep his bum from moving forward and pushing onto the hardness strap. It is difficult to get to his body for washing unless unhooking straps at intervals as we had his shoulder straps tight enough to keep him from moving forward, as by the end of the day he’s quite tired so his upper body control is not as strong. We did try the recline while he was in the chair in the tub since he was tired and found it was easy to recline with him in it. But watch out as the harness tightens as the back of the seat goes into the recline, which can be a close call for the pelvis area if it’s been adjusted in the upright position first.

The real test was to ask Sebastian what he thought about his new Splashy. As you can see, he was all smiles. He thinks it’s comfortable (the seat is soft but not cushiony) and he likes sitting secure and upright. But at the end of a long day there isn’t the head support he needs so we had to work to help him keep his head up quite a bit.

We have a jacuzzi tub so the base of the seat in the back takes up a lot of unused space. Sebastian’s feet rested against the side of the tub so I’m not sure someone much bigger than him would still fit in it in the tub. I’m curious how it would fit with him in a typical sized tub.

We are headed out on a road trip at the end of the week and are really looking forward to traveling with the Splashy; it folds flat, is light and compact. We plan to have the opportunity to try it out in the sand so Sebastian can dip his toes in the water and also play with his sister. We usually have to hold him in our lap for beach outings (sand is not wheelchair accessible!)  and he uses an inflated neck ring to swim. It will be fantastic to see if the Splashy could be a staple in future beach outings as well as for quick baths in tubs while travelling.

Overall, I think this is a great new product from Firefly. It promotes inclusion as Sebastian can easily interact during bath time. I believe it will provide opportunity for this in a beach setting as well. With its light weight and ability to fold flat, it’s easy to store (and clean!) and  great for travel.

Updated March 20th: We love the bright colours and ease of use and storage with the Splashy. We recently took a road trip and it folded down easily to take on the road. Once we used it, it dried quickly for packing up to take to our next destination. Staying in hotel rooms that aren’t always accessible means that bathing can be very challenging. With the Splashy we can have the choice of a bath or even the shower, when a roll in shower is accessible. Having the Splashy for travel made a huge difference. We won’t leave home without it again.

 

This is the Point

The point is that this is life. This is love, and sex, and parenthood. These are relationships and this is communication, stilted and awkward as those two both can be. This is taking time to listen, and going slowly. These are four people circumnavigating disability. Two lovers, both with cerebral palsy, and the pregnant mother and father of a son with cerebral palsy, trying to find a way to give him a voice through their work in theatre.

A Different Normal

Dan Watson and Christina Serra, together with Tony Diamanti and Liz MacDougall (along with their Director/Co-Writer Karin Randoja) create a play which invites the audience into the lives of four individuals. Developed in Residency at The Theatre Centre, and based on a play written by Tony, This is the Point, brings the audience into Dan and Christina’s home during their family breakfast routine. It brings the audience into the room with Tony, as he shares intimate details of his first, non-consensual, sexual experience. It shows Tony and his partner Liz, and their zest for life and penchant for sexual experiences. The play reminds us that these relationships, touched by cerebral palsy, are normal, in their own way.

Dan and Christina realised that their usual physical approach to creating a play didn’t work for Tony’s needs. In accommodating them, they realised it was the same with having a child with a disability, ‘you just have to make it work.’ And they do. When there is a glitch with technology, they have to stop and fix it on stage, it can’t be improvised into something else because this is how Tony communicates.

A whole new way of communicating

Tony uses a wooden alphabet board which he points to the letters he wants with a pointer attached to his head. The audience must take the time to listen. They have to accept that they are on a journey with the characters on stage, it’s not about where they are going, but how they navigate through life and relationships to get there.

This is the Point brings the audience in with Tony on stage by himself. His letter board, projected onto a screen behind him, compels the audience to follow along. It takes practice and understanding to communicate differently. The audience is forced to focus wholly on Tony and what he is trying to say. He can’t continue until he knows they have. During early showings of the work, some audience members read out loud, helping others who were struggling to follow.

This is the Point will be performed at The Theatre Centre (1115 Queen St. West) from November 4–20. Parents of children with disabilities will find moments that resonate as well as insight into an adults’ perspective of navigating relationships while also living with a disability. It is not to be missed. Tickets can be purchased online at http://theatrecentre.org/?p=8746 or by phone at 416–538–0988.

This one is for the adults though, as there are references to sex and violence. Leave the kids at home and bring them along to Dan and Christina’s next project, What Dream it Was, an all-ages experience.

Yep. Still Here. Still Writing.

Still writing. Just keeping it to myself. Putting it into something bigger.

Recently I wrote an article for Bloom, an online magazine for parenting kids with disabilities. I remember when we arrived in Toronto and I first read Bloom. It was a hard copy magazine then. It feels pretty great to be a part of the community and writing for them too! We were even featured on Bloom as a news story when Cathay Pacific wouldn’t let us fly to Australia with Sebastian’s specialized car seat back in April! That was fun.

See, a lot HAS been happening around here.

Like I said, I’m just kind of keeping it to myself lately.

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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.