Happy Birthday

Me helping him

My brother was rambunctious. He was wild. Fast, talked a lot and loved his dad. Until one day, he wasn’t. A hospital stay that shouldn’t of happened, a cure that didn’t exist searched out by arrogance, too much of one drug by a crooked doctor and a coma that lasted just long enough to take most if his brain function away.

My brother was strong, deliberate, vulnerable and dependent.

I was too young to really know the difference. Even now, I have flashes of moments I was too young to remember. I see and remember him both ways, but not different.

I grew up in a home where we helped each other, with everything and anything. I think I was about 8 or 9 when I’d support Stephen with my arms, and walk him to the washroom for a shower. Cargiving came to me at a young age. When I was anywhere from 2-5, my mom would always engage me by asking me to get a diaper, shoes, a box of milk for his G-Tube feeds, and anything else I could carry in my little hands.

We went to the hospital a lot. The ambulance could never take his WC, so usually my 10 year old self would push it to the hospital up the street or bring it down to Sickkids on TTC (this was before elevators in stations). People would stare, I would wave, it was lighter without him in it. When I was too young, my mom would leave us both at the hospital, tell me to watch him like a hawk, go home and get it or take a cab if we had the money. We spent Christmases there, Easter’s and other holidays. Christmas was great for him and I as kids, we would get the best gifts while at the hospital. If you knew my brother, you’d know he acts unimpressed at first, but then he puts his hand on the truck and moves it back and forth, or shoves it off his tray and smiles as we pick it up again. I remember hospitals as fun. As I got older, they got a bit more boring, sometimes scary. My mom would always remind us “this too shall pass.”

They say when someone’s been gone for a certain amount of time, you start forget them. I can’t manage to forget. I remember he loved playing in my hair, took naps, could crawl and pull himself up to just about anything, loved being out of his chair, wouldnt smile, until he did, treated me like a real sister, liked music and had no time for those that didn’t have time for him. What a guy eh?!

More people in my life now didn’t know him, than the ones who did. Weird huh? Life is such a shift. I miss him.

Bought my mom a WC yesterday, so I can take her on my long walks on the weekend. As people get older, they don’t always want things that will help them or make them seem weak. My brother put that idea on a bunch of helium balloons and let them go into the sky. As she started wheeling herself around my apt with her feet, I reminded her “this is not for you to wheel yourself around all day, ha” we all laughed. We’ve learned to take help because of him. When we needed it, we’ve taken it, financial, friends, nurses, docters, our Church and each other. That is a lifetime of help. We help others now that we are in a position to do so.

I will always and forever be a sibling.

Life lessons

Ontario Place.  Remember that place?  My mom took my brother and I there a lot when we were kids.  I was the ever passionate dare devil. I would push my brother in his wheelchair through the punching bags hanging from the ceiling, carry him up to go down the huge slide and squeeze him in beside me on the bumper boats.  Sometimes he laughed, other times he gave me a “why me” look.

I learned a lot of things going out with my brother and my mom.  She really does know everything.  My brother being vulnerable, she had a heightened sense of emotional intelligence, seeing what people needed and caring for people even when they didn’t know it.   She slowly and subtly passed those things on to me.

We took Wheeltrans everywhere we went.   That was back when you had to book it five days in advance. If you booked on the fourth day in advance,  you were too late and had to wait till the same day of travel to try and book it.  You can bet I was on the phone early Monday morning booking for Saturday to go out.  My first lesson: planning ahead.

We often booked to be dropped at the East gate.  It was easier to get to. You’d avoid the ramp with about seven rises before you got to the top and you didn’t have to walk along the bridge looking down at the water. Sometimes, wheeltrans would go to the west gate.  You could see it from the east gate.  My mom would say “run over to the other gate and tell the driver we’re at the east gate.  If it’s not our bus, wait at that side and keep an eye out over here.  Run back if you see me wave.”  Lessons two and three: Run fast everytime and be observant.

One time Stephens wheel broke off his wheelchair.  The front left.  We could see the bus sitting outside the gate. Couple bad things happening here.  We could miss our bus, they won’t take a wheelchair if its broken and we had run out of meds and food for my brother. We had to take this bus home and couldn’t wait.  While she ran to explain to the driver, I went into the first aid and asked for tape and string.  They got tape out of the first aid kit and string from their ballons.  I took my brother out and sat him on the floor.  Flipped the chair upside down and proceeded to wrap the string around the broken wheel, attaching it to the base.  I then tapped it. My mom got there and helped.  We must’ve done it in five minutes.  We caught our bus.  Lesson five: Use your resources and think on your feet, because the consequences could be much worse.

Sometimes we’d pack lunch to save money.  Sometimes my mom would buy lunch with the little money she had.  She didn’t pay for herself or Stephen to get in, only for me once I was older than six.  We sometimes had to ask for a “no fare” on Wheeltrans and pay at a later date.  But man, did we always have a fun time.  She never let on that money was an issue.  Even if she said she didn’t have enough money to go there and we’d go somewhere that was free, we’d have the best time.  Lesson six:  Money is nice but people are better.

If I didn’t have my brother and my mom, these lessons would never have been what they were. Thank goodness for that.


Always there!

I dedicate this to a friend who always encouraged me to continue writing poetry. He even bought a small book I put together years ago. I thought since its been so long that I wrote poetry, that I might’ve lost it. Jason Kenemy, I sat down to write a blog and this is what came out. You’re right, it’s always there.

I was sad yesterday, but not today. Because yesterday, I would’ve said goodbye to you. I would’ve said, I’m going to make a mistake and you won’t be here to even know about it.

I was sad yesterday, but not today. Yesterday, everything was hard. Peoples personalities were hard, extra jobs were hard, I rode the train on 40% instead of 60%.

I was sad yesterday, but not today. I felt the tug inside me, the tiredness and staleness building inside. I couldn’t pull myself from the things on my mind.

I was sad yesterday, but not today. The little bit up and the little bit down, never brought me up. It kept me far down, pulling me even, as I fought it off.

I was sad yesterday, but not today. My mind was sharp in the midst of strife. In the back was what I knew was light, strength, you!

I was sad yesterday, but not today. My bed held me tight and warm, gave me extra time and stifled the anger that was within.

I was sad yesterday, but not today. The season has turned, it changed in an instant. Constant change, so fast I didn’t even see it. A heart up lifted.

I cried today, but not tomorrow. I miss your face. I miss your smile. I loved you so much!

…cried today. I want you back!

Tomorrow is only a short while away. You’ll be with me then too and that’s where you’ll stay. Thanks to you, for reaching me. And for always being the light…

Not my house

Have you ever lived somewhere different? Not a different country, but, in someone else’s home…their not home? I have. In fact, last September, I lived in one different country, two different cities and one different riding, all in someone else’s house.

New York was the best. I got to sight see, while my client was at school. That being said, I ran errands, had Skype meetings, worked on my laptop till 2a and wondered how everything was doing in Toronto. Life went on as I knew it. New York is so much like Toronto too, it wasn’t that hard to continue my regular routine. When I flew back to Toronto at 3a, I slept in my bed one night and headed out at 8a the next morning. A whole five hours in my house. No unpacking necessary.

My favourite is coming home. It is not too long that I am bored of my place again though.

Now I’m finally home. I thought, woo, November will be nice to be home. Then I remembered…my best friend is doing a school placement away from home that will be good for her professional career in the end. Guess who’s taking care of her six year old daughter for three weeks? This lady! Once again, not home for prolonged periods of time.

There was a small break in the beginning of the year. It lasted one month and I thought “how nice it is to be home.” I was tired with other things, so, came home every night. But, wasn’t feeling full in my own dwelling. Soon, the calls began to come in for overnights and vacations. Wooo hoo, it meant people were taking a break after the March Break.

It also meant packing my bags and keeping them somewhat packed with essentials.

Currently, I just lived in three different houses in fifteen. I wasn’t taking care of anyone specifically. I did become part of wherever I was though. I became an auntie, big sister and cousin, it’s like having my own children.

I will soon be moving to a camp for a month, to spend different sessions with different children. It will be exciting to meet new people and somewhat bitter too to be away from home and have things change.*

All in all, this home on earth, is not really mine. Even the one I pay for has stories without me. If your travelling or moving around “Peace be da journey.”

*Some things and people stay the same, some don’t. Keep souls and spirits alive in all you’ve known.


When I was young, I did not like camps. It was a combination of me not liking them and my mom not having enough money to send me to one. Me not liking them came first. The cliques, the boy vs. girl, the bullying and not to mention, the annoying counselors. I spent my summers hanging with my mom and brother, playing with a few friends, going to concerts and sometimes playing video games till my fingers were sore.

Now that I’m an adult, I spend my summers at camps, ha.  Sallyanne, my right hand woman, and I take three young ladies to a camp that is for children and young adults who have physical disabilities, although they accept people whom have developmental disabilities too. It is beautiful and ruins other camps that you’ve been to. It is right on Rideau Lake, has every activity any other camp would and, is completely accessible. The staff are wonderful! They hire a lot of international staff, which is so nice to have people from different parts of the world.

What I do is assist my client in personal care, but more than that, during programming, to be social, and with all the secret things that parents do to take care of their kids that no one else can do. Mostly, I provide the extra support that camp staff can’t because of intervention and the ratio of campers.  That’s right, fourteen hour days, with breaks in between. I am so over joyed and fulfilled at the end of the day, that I’m always ready to do it over again.

This year, I did two ten day sessions, with a four day break, a cottage, a dirt road and lots of car travel in between. I had the best time and watched my young adults, transform, make friends, let others help them, laugh, miss their families and truly enjoy being a kid!

This year I took one young man on my own. This was just the first of two sessions I would be at camp.  It was my first time on the boys side, I usually take girls. The young man I took has a physicality says nothing about his personality. He can’t do anything without help, but has a sharp mind and a mouth that he uses to tell you all that’s on his mind from politics to history to inappropriate jokes. His body (as he refers to it separately from himself, dualism) is affected by Dystonia; random un-choreographed movements due to neurological control inhibitors sparking off, leaving him with little to no control over his body. This can affect any muscle in his body, including, Trachea, legs, arms, vocal chords, sometimes leaving him straining to talk, swallow food or completely twisted into a pretzel. He tends to think about danger a lot, because he can get hurt so easily. For example, if I am sitting with him in my lap and there’s a wall near by; His eyes see it and no sooner does he see it, he starts thinking “oh no, I’m going to hit that wall” his brain takes charge of his thought and throws his body into extension, trying to hit the wall. Its a battle, because he doesn’t want to hit the wall, is trying to tell his brain not to hit the wall and the more he says no, the more his body arches towards the wall. This means quick reflexes, being super observant and thinking the way he does. Any hard or plastic chairs or tables, we keep him away from, as his body reacts to it.
So you can imagine when I said I wanted to take him sailing in a small plastic boat with little room for legs, no straps and a bucket seat made out of tight mesh, his parents said “no.” He was indifferent though. I have done some pretty amazing things with his body and connected mind power. A boat meant we were stuck and the only thing around us to make it better was water. Him and I talked and talked and talked about it. I convinced his parents, who have the utmost trust in me. His big worry was that, if we his body was completely unresponsive to my hands and intervention and he was in full extension, he would hurt himself or pretzel under something and get stuck. We finally decided, that if all went completely ary, we’d bail out of the boat and just float until a nearby motor boat came to get us. There are staff in a motor boat that watch us, help if we need, bring us juice and water or bail boats if they have filled up with water.
When we first got in, I explained to him where everything was in context to his body, had my arm tight behind him and padded the boat with towels from his sight lines (sometimes, outta sight, he doesn’t react the same way). Big surprise and not so big surprise, he kept his body calm and was able to stay still. I was able to intervene when he needed me to fix a leg or head and we talked for two hours about life!!!

That is just one of my favourite parts of camp, giving someone the chance to do something, they never thought they could.

Today I am to running some errands for my mom. If you know my mom, she rarely has me run errands. She also never get’s mad at me if she asks me to one thing amd I forget. The only reason I’m running errands for her today, is because she’s not here to do it herself! Otherwise, I’d be out of a job.

As I to pick up medications, go to the bank, etc, I am brought back to these old neighbourhoods. Places we used to frequent, places close to home, in our North West apartments…places we with Stephen. I think about him everyday, but thought about him a lot today.

Remember when we walked up that hill, or missed Wheel-Trans at that door or I took the last dime from my mom because we waited for hours and I wanted gum. He’d laugh at me and watch as I would run around, talk and try to entertain myself when we went to the doctor’s or walked to pick up his meds.

He is in my thoughts always, probably more than people know. My friends who didn’t know him, feel like they did, because I still talk about him.

If you’re thinking about people, let them know. If you love them, tell them. If you miss them, do something you used to do to remember them.


When we’re gone

Once someone we love dies or someone we know, we forgive them of wrong doings, remember them on special occasions, sympathize with their families, or their lives when they were here, think about the times we didn’t spend with them and change our minds about who they were when they were alive.

Today my brother has been gone for thirteen years. Lucky number thirteen! I remember meeting a young lady twenty years ago, who told me her sister had been dead for thirteen years and it scared me. I thought, I never want my brother to die and I never want him to be dead for thirteen years, as if I could separate the two.

My brother was pretty special. Not because of his ‘special needs’ but because of the person he was. I always thought of him as kind, loving and funny. He definitely did wrong in his own way. But there wasn’t anything I ever had to forgive him for. I did get mad at him, but learned to get over it, because I did annoying things to him too. When he was sad or not feeling good, I sympathized with him and always held him higher than most people in mt life, besides my mom. There was no reason to ever think of him differently once he had died. I can’t say that for everyone in my life that has died, and there have been many. How lucky I feel to have someone like that, someone who will always be good in my eyes.

Now in death, I still hold him higher than most, think about where he is, wonder what our life would be like now and love him to this day. We don’t do that for everyone in life though. We get mad at people, hold grudges, fight, say things we don’t mean, talk behind each others backs and are stubborn. If that person dies, all of it becomes obliterated. We forget what ever made us mad (in some cases), pay our respects, remember them on their birthday, death day, burial and significant places we go to that they may have been a part of.

In one way, good for you for letting it go now that the person has died. In another way, why couldn’t you have done this in life? I sometimes try to do this in life. Not persecute someone for something they might have done to me, let things go, be compassionate to someone’s situation even I am hurt in the process and have more they should listen to before they get me again.

Lets try to love each other? I know it’s hard and it may not even be important to some. But, for me, I’m going to love more, be more compassionate and cherish someone (even if I can’t agree with them or see where they’re coming from), cherish them in life! Love is everywhere!

...on a  mission to change the world!

…on a mission to change the world!

Two kids who loved each other to bits!

Two kids who loved each other to bits!

Grand Canyon, life changing

Grand Canyon, life changing

Birthday nostalgia

June 3rd was my brothers birthday. It may also of been the hardest week of the year for me so far, there’s still plenty of year left. There was a lot going on with work, friends, work, kids, volunteer commitments, life and work. Not having my brother right beside me, to sit quietly with, wrestle with and make things so simple my fears are calmed.

I also, would’ve finished this blog a month ago, because we would’ve written together, it would’ve been about you.

Fourteen years and a month ago we’d be celebrating your birthday. We’d wait for Wheeltrans, the old Welcome bus. Probably at our staple Pizza Hut we do once a year. Enjoying pizza you couldn’t eat and then you’d fall asleep from boredom of watching us. You may or may not wake up for you cake and enjoy the birthday song. It was always hard to surprise you, you were so nonchalant about everything. You enjoyed it anyway as you smile and humor us with the party we gave you, always appreciative.

I’m sad this year. I miss you. It doesn’t get easier, it only changes. You become fainter in my memory, but not in my heart. And time, where…comes and goes.

Well, your birthday will come every year. I should make a point of doing something for myself.

Love you Stephen


…I have a number of clients who just turned twelve, when not knowing what to do, I think what would my twelve year old self do, I got a new baby sister when I was twelve and Sesame Street always counts to twelve!

You, have been such a blessing to me over the last twelve years. You’ve watched over me, told me when to shut up, supported me and been my friend when I didn’t want to share my secrets. Always there for me, in life and in death. No one told me it was going to be like this. For me, I was happy to wait for this truth. People told me, but humans don’t know what to say and can’t capture how beautiful this relationship would’ve truly been.

In the last year, I have had a wonderful ride through adulthood. I’ve learned a lot about people, business, friendship, trust and joy. You can take credit for all those things, especially joy, it’s not really an earthly learning. It comes from a higher power. The higher power is God, but you see him everyday and I know you guys share your love for me.

Thanks for being a part of me, from the bottom of my heart! I love you Stephen!


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