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.

Sibling

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A full plate

I am enough
Sometimes too much
Isn’t that why we’re here?
To see another’s plight and take it anyway?
Whichever way we can?

I see you
I don’t see you too
To bend and break and run…
From what doesn’t fit or conform
Into an ever growing smaller box

I hear you
I’m not listening
To the voice that races off your tongue
Or the heart you explode in your hands
Pardon me?

The shoe hangs close to the wire
Who do you trust?
If not the one who’s a piece of you
For sanitys sake
Jump if you will

Words made up
All fall down
Love and love and live some more
The faces look and hands turn
The circle never ends

Cry, till the very last light
Pour everything into the glass
Look through until it is no more
Fight all you have
Charge racing horses,  charge

For myself

My job last week mostly consisted of carrying some bags, lifting a wheelchair in and out of a car and helping set up at speaking engagements. It was different than what my days usually look like and challenged a different part of my brain. I worked a lot on the computer, used physical energy infrequently, was sitting more and not moving around and even though I was doing things, sometimes a part of me felt bored. This was all internal of course and had nothing to do with good company or what I may have been attending to at that moment.

I like to keep moving and that’s why I love the job I have now. The kids and some young adults keep me going. I always joke that I don’t need a gym, because I’m moving all the time. That’s not true, but it feels like it.

I sometimes find it a challenge, to not be physically doing things and moving around or getting that adrenaline kick because I have so many things to do. It forces me to use a different part of my brain. Focusing, analyzing, direct communication and breathing slower. I can’t do C, before completing A. They are separate.

I do different things to train my brain. I play the hard Sudoku, read the King James version of the Bible, practice word puzzles.  Mostly, I have joined a swim class, try to jog once a day for 15 mins and have tried stretching each day.  See, I do things for myself!

 

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Always moving

I know I can

How much are you willing to push, to get the result you want? If we are treated un-fairly, we complain, if there is an in-justice, we try to make it right or are out raged, if we are failing in school, our parents say we need to work harder. Why when you only take care of someone’s physical needs and they have a disability, does no one say, you’re not doing enough?

The effort I put in to support my clients is wholesome. It’s a yearning in my heart to treat them like any other child that I meet. A lot of people say “what do you do with them” I never understand what to answer. I usually say “what do I do with who?” They explain and ask about things like care, and that’s it. When I explain what I do and ignore the care question (because sometimes it’s private) people are floored. The reason I don’t understand their amazement, is because I wonder what people do with their own kids? They don’t only provide care? And what happens when their kids don’t need help with dressing etc, you must do other things? Well, that’s what I do, other things. I mean, who doesn’t want to go out and experience the world?! Or stay home and experience the world as the case may be.

Even my clients who are non-verbal and don’t have a specific “yes/no” communication system, I know they appreciate effort. You can just tell what they like and what they don’t. How many times have I heard “he’ll use the device for the OT, but not for me” or “he’ll walk for the dad and not for her” or “they don’t like going out with me.”  You know what I say to that, TRY HARDER. Yes, sometimes the person won’t “perform”  or doesn’t want to do things. I would ask why?

Supporting the children and teens can be hard, not physical burn out hard, even though that happens too. I mean brain power hard. I am using every fibre of my being to listen, respect and do right by them. Their dreams are my command. If I’ve supported a client in the classroom or at home with school work, I need to believe they can do what I’ve set in front of them to the core of my being. If I don’t believe they can do it and set them up for success, they often won’t. And some of them don’t care. They’re going to continue to go to school, encounter the same attempts, be happy in life and give love unconditionally to those around them. There is something about rising to the occasion. If the occasion hasn’t shown up, should I still rise?

People talk over my clients heads about what they can and can’t do. It makes me angry. We are so concerned with facts, science and check lists, that we can’t shut our bodies up enough to truly watch and listen to those we are hired to support.

I challenge myself and others as support staff to stop and shut ourselves up. We can talk and do a lot of things without assistance. Let’s give those that need us to understand them the floor. For any wish they may have.  With everything in our beings.

This young man thought he could never be near the water.  I knew he could.  Trust me, I got beat up and sometimes had to run (for fun) to get him there.  But once there…amazing!

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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…

Fifteen

I injured myself in a minor way yesterday, but lost some skin and may have needed a stitch or two (which I didn’t get).  My paramedic friend asked me “when was the last time you got you tetanus shot?” I said “probably about fifteen years ago.”

Fifteen years ago today, Stephen would’ve been alive.  At this very moment, he would still have been breathing and smiling and loving.  Even if I don’t think about that day often, I can remember it like it was yesterday.  Sitting, eating breakfast, expecting my mom to call to say she made it to the respite home he was at and will be home with him shortly.  The phone rang, something wasn’t right, it took too long, was she late, did she make it there.  My mom didn’t have a cell phone at the time, she does now.

Mom: ” Hi Marj.”

Marj: “Hi, you made it!”  I wondered what took you so long.”

Mom: “Marj, I have to tell you something.  Stephen’s gone”

Marj: “Gone where, pretending I didn’t know”

Mom: “Stephen’s dead.  Come and meet me right now, they will pay for  taxi for you.”

Marj: As I balled and stumbled around the apartment “damn straight they will pay for a taxi.  How the !@#k did this happen?  What did they do?”

Immediately I went into fight mode.  I wasn’t sad in the least, I was mad and was ready to find the people responsible.

When I got there, he was in bed covered with a sheet.  I said goodbye, which wasn’t real at all.  I was forced to say goodbye to my dead brother, I hated it.  I didn’t even kneel.  We were then sat in  separate room, away from the commotion.  There were paramedics, police officers and we waited for a coroner to show up, who said it was natural causes.  I’ll show you natural causes of death.

Their staff kept talking to me, trying to make me feel better.  It’s a wonder that someone can’t read, no eye contact, subtle to no head shakes and body posture as ‘shut up.  stop talking.’  I just wanted to get out of there.  What were we going to do now, with all his stuff, who would we care for, how would life ever be the same, ever?

We called friends to come and get us.  Cheryl, she was the first to arrive.  She sat with my mom and is just wonderful.  Dave our associate pastor took some of my brothers belongings home for us.  His son Brad drove me home in his car, it was yellow at the time and a, I can’t remember the type.  I know I called it Mello Yellow, because of the loud engine, but cool vibe.

Marj: “I’m not going to school tomorrow!”

Mom: “You don’t have to.”

Marj: “I am going to figure out what happened. there is no way he just died.”

Mom: “Mmhmm.  You’re right.:

At the time we were both paralyzed.  She never said so, but she went with me to every meeting I set up and backed me up while I yelled, took notes, asked really tough questions and put together time lines like a CSI agent.  I finally got it, a confession to the truth.  “One of our staff fed him by mouth.  She didn’t read his file to see he had a g-tube.”

I believe I may have in to someone I never want to be, I wanted to see them suffer, make them pay.  There’s no way he let someone get that close to his face and not push them away.  He didn’t like eating and had the strength and arm control to hit people, trust me, I know.  I brought up force feeding, but they denied it.  I also wanted a name.  No luck in that.  But, I did hold them prisoner in that room for three hours asking for one, I hoped they knew what they were in for.

We wallowed for months, well a year.  I dropped out of school, we were bored and I hadn’t found soul friends yet, that were for better or worse.  Don’t get me wrong, I had friends, my youth group was a big source of friendship, but there was still something missing and it wasn’t Stephen.

Diane a wonderful friend to us, helped my mom clean out his room. It was the best gift anyone could’ve given us, I don’t think I could’ve done it.  We set out to move, because now we were over housed, three bedroom and two people.  Everything had become so impersonal and only necessity based.

Fifteen years and this is the first time I am telling this part of the story and some don’t even know the half of it. I still meet people who ‘have heard’ or don’t know and they say “yes, I understand.  At least he is not suffering anymore. ” Or “he was going to die…he had one of those, I forget what you call it conditions.”  Believe it or not, not everyone that has a disability, dies because of their disability.  It can be age, accident or even someone’s fault.

Never give up if you believe something in your heart, always fight for it.  He was worth fighting for and I know the people that were on the other side figured that out pretty quickly.

 

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Advice

I had someone give my client and I advice the other day. Or a mere suggestion as she called it.
“When you feel pain, just breathe and the pain will go away. You (Marjorie) should remind him.” This does work sometimes, but, not always and more times than not, it doesn’t work within the first Twenty seconds of the spasm, or doesn’t work at all. When he spasms, all muscles are involved, including swallowing, lips and trachea, rib cage, everything. His lips purse together shut (breathing shallowly only out of his nose), his throat stiffens and his dystonia holds him in a un-choreographed movement, one that most bodies are not familiar with. So, he does his best, and once he has his breath back, tells himself to breath, till he somewhat relaxes. When I told her this along with my client she said “as long as you remember to breathe.” I looked at her, my client looked at her, he said loudly “I do breathe” and I said “don’t disregard the things he can’t help.”

I give a lot of advice. Most would say I’m bossy. Some may say I’m particular. Few would say I’m pushy. It’s okay, I’m all of those things. When it comes to advocating, yeah, I’m not so worried about the other physical able person, who can usually adapt.

I’m learning everyday how to better give advice and how to have more tact. Some clients like when I’m a little but rude or give attitude, because that’s what they would do. Others prefer to have a discussion that is clear and concise. Either way, all my clients don’t like getting advice on how to “better” their disability. It’s a bit of an insult to their sensibilities, especially because they have lived their life longer than you have.

On the other hand, I like getting advice as a personal support person. It gives me ideas and helps me better the way I support anyone or provide attendant care. Usually this advice comes from the person I support and that the best kind of advice.