Peace.

Always worrying and wondering
What people think of you;
Always second-guessing yourself;
Packing down feelings of
Fear
Depression
Loneliness;
Finding yourself obsessed with unimportant things;
Peace will always be out of your reach.

Rather,
Focus on light,
On love,
On finding ways to bring joy to others.
Try to be gift to another person
And the gift of peace will find you.

Not my sister...but almost

To do something without expecting anything in return
She opens doors to a world beyond me.
Each time we are together she listens with her heart
Calling me to a better understanding of God's plan for us.
I love it when she sings to me.
She sings to me and lets me sing to her.
God put us together for a reason:
To sing to one another
and to heal one another.

Dear Mr. Putin

Do you ever stop killing people?
Do you ever stop lying to the world?
Do you lie to yourself?

Mr. Putin,
The world waits
The world watches.
So does God.

Lack of Control

Please listen to my voice

I am not in control of very much in my life.

My body never listens to me.

People ignore me like I'm not there.

Look at me and don't even see me.

I can't control other people

Any more than I can control my body.

But if I could

I would love to sing out loud

To talk to strangers without freaking them out.

To see a baby and not break down into tears.

I would be able to sit and chat without getting up every minute.

I would tell and I would show people that I love them, and they would feel it.

A Long Winter

Everything is getting colder outside

I can see my breath more often these days

It would be good to spend time somewhere warm and sunny

Winter is hard for me

Even snow boots are no match for icy sidewalks

Most people don’t shovel

It can be scary

I’m afraid to fall

If I fall my bones are likely to get hurt

Being able to walk without assistance in the winter would be amazing

But I need help so I don’t slip

There is no way to be even a little independent in the winter

It makes me long for summer

When I can walk more independently outside

Less afraid

Less scared of falling

But don’t get me wrong

Winter has benefits

Snow is beautiful

The fireplace is cozy

Movie nights at home with family are wonderful

Most of the time I love winter

Until I have to go outside.

January 2014

Nov.11/2014 

Horses

I have done therapeutic horse back riding forever!

I love it because I am free.

I can ride without holding on to the reigns.

I can fly when we trot. 

Always, people are surprised by my skill tell them it is from years of physio and practice. 

It feels so great when I am up on Chopper or the other horses I've ridden. 

Sometimes there are small children riding when I am riding, 

or watching their siblings. 

That is hard for me.

When people expect me to be able to use my hands

or to stretch my arms on my own-that can be pretty frustrating. 

The volunteers are usually great when I tell them a little about myself.

I am so glad that Sarah and I can still do this together - it is a special time for us. 

No More Apologies

I'm so frustrated with caring about silly people looking at me
when I make noises that make them uncomfortable. 
I'm tired of feeling bad about things that I can't change about myself.  
This is me. 
I scream sometimes. 
I laugh sometimes. 
I stomp my feet sometimes. 
I don't want to always be the one who makes the noise - 
who makes you uncomfortable. 
I can't stop the noise. 
Maybe you can stop looking so uncomfortable.

October 27, 2014

Looking at Me

Since I've started writing this blog, I've wondered what you might think of me - and this has started me thinking about what I think of me. Here is what I think so far:

• I am so lucky to have amazing friends and family who look at me with unconditional love and acceptance always. Even when it's hard.
• I am a complex and beautiful woman.
• I am laughing more than ever. That's good because I am crying more too. I am so happy that I can still laugh.
• I am currently addicted to the Aladdin soundtrack.
• I am generous with my affection.
• I am loveable. 
• I am decidedly greater than my disability.
• I am more than the pain
• I am more than the screams

When I look at myself I see me. 

Tired of the Stares

When I see extreme sadness when people look at me,
it makes me angry.
Why are you so sad?
Are you feeling sorry for me?
Do I make you uncomfortable?
Do you think my life is awful?
Do you try to tune me out?
Am I too loud?
Look at me and see this:

I am strong.
I am loved.
I am funny.
I am blest.

Sure, there is always pain
and talking out loud is impossible for me.
But, there are always reasons to be grateful.

So, don't look at me and be sad.
Say "hi!" and know that I'm saying "hi!" too.

Silence

Walking with music 

It is never silent in my world.
My life is intensely loud.
It is filled with screams and songs,
laughter and tears.
Silence is never possible for me.
Music soothes my soul.
Love is very uncertain for me.
But music is always there.

I don't know what it is like
to meditate in silence - to quiet my mind-
to just be still.
I hear it is peaceful.
It sounds painful to me.
Sometimes I wish for silence.
I don't think it is for me.

~September 29, 2014

Great Big Sea

---Great Big Sea --- 

There are not enough words in the world to sum up the healing power I have found in the songs of these beautiful men.  I have been to so many of their concerts - with family and with friends.  We have been so lucky to get a spot near the front more than once! 

After their last show with Sean in Kitchener, the XX tour, I wanted to let them know what they mean to me and to my family and friends.  Sarah helped me to write a letter to GBS and we posted it on You Tube and sent it to the band via Twitter. 

You can see the video here:  letter to GBS !!

The response was amazing!!!   Alan Doyle sent me a picture  with a Thank You attached --- some of the other guys tweeted about it too.

It was so Awesome!! 

Here are a few pictures from our time at the concerts:

Add caption

My favourite GBS song is Wave Over Wave. Sarah and I tweeted the band before the concert and they wound up playing it at the final encore song of the night!!  When my pain is too much - my family and some of my friends can sometimes be found singing it with me:

My Biography

St. Catherines, Ontario

When I was born, everything seemed 'normal'. I hit the development stages, I started to walk and talk and all of that. At three years old, my life was forever changed.

I couldn't talk anymore. I was sad, scared and angry. It was awful. No one knew what was going on.

I really thought my speech would come back. I waited and waited, it never came. I tried to talk, but only funny sounds would come out. I probably waited two or three years for my speech to return. Eventually I was taught how to use a communication board.

It was so hard to learn the communication board. It is still hard to teach new people to use it with me. Once I could use the board, and other people could use it with me, it was beautiful. I could finally tell my family everything I'd wanted to say for so long.

Saskatoon, SK

Most of my school life happened in Saskatoon. I loved it, I knew I belonged.

I had wonderful, loving young women in my life, who supported me by their friendship. They were my support workers who became my friends.



Waterloo, ON

We moved to Waterloo nine years ago - it was so hard to leave my friends and supports in Saskatoon. I didn't know what to expect in Waterloo. High school was not very fun, but I graduated and that was awesome!  We have met some truly wonderful friends in Waterloo. This town is much closer to more of our family and I like that we see them more often.
I have had many support workers over the last nine years. Some have stayed on longer than others - but no one has stayed with us as long as Sarah. She is more than a support worker - she is part of our family, my sister, my friend. She is working on this blog with me. I'm so glad we moved here. My life is better than ever.

'untitled'

March 28, 2011


 'untitled'

I don't talk very much
You don't hear my voice
So you think I am stupid
Because I don't fit
Into the pretty box you made
For normal

Who wants to be normal anyway?

My mom always told my sisters and I
You can do anything
You can be anything

So why would I want to be normal?

Just because I need a facilitator
For communication
Does not mean my brain is broken
My voice is muted,
But my thoughts are louder.

I am a daughter
A sister
A best friend
I laugh at corny jokes                      
I cry when my friends are hurting

I can't control my body like I wish I could
Sometimes I scream for what seems like hours
When my pain is too much to bear.
Songs are magic then
They transport me
I am distracted until the pain subsides

You might think that my screams
Are too loud for your comfort
I get it, really I do.
Try being inside my head when it's happening
There is no mute.

If I could change one thing -- it would be going to the washroom alone.
Who wants an audience?

What would you change about you?

{no title}

July 28, 2014

If most of the time life is really too hard to go on
I must look at my amazing family and friends
To find joy
To find love
To find hope.

'My Beautiful Friend'

Nov. 25, 2013


'My Beautiful Friend'


More loved than she understands
More sincere than I've ever known
Let's me be me
Slow to get angry
Looks at me with unusual knowing
Stays with me when it's hard
Wonder why more people aren't like her
Still teaches me every time we are together
Listens to my heart
And I hear hers
Being with her is pure joy

{no title}

Nov. 25, 2013

Tear my eyes out
So I don't have to see
The world
Too much sadness
Too many stories of loss.
Understand,
My time is spent looking
Watching the world live.

We need to find some way to sing louder than the silence.

'Meet Me'

Oct 15, 2012

 'Meet me'

Meet me in the pain,
Meet me in the screams,
It isn't as dark as you think.

Meet me in the music,
Meet me in the dancing,
Very slowly, I will let you in.

Meet me.
See me.
Hear me.

See me,
Learn to hear me,
My heart will speak to yours.

The end is the beginning.

'Pain'

Oct. 3, 2011

 'Pain'

Most days the pain is here,
like very unwelcome guests that won't leave.
Too often it makes me scream out to let others know it's back
Why I have to go through this, makes no sense to me
Looks like it's here to stay.

Wish I wasn't so used to it, wish it wasn't part of EVERY day.
Tell me who thought this one up
It is too much pain for one woman, but I wouldn't share it with anyone.

'More'

Sept 26, 2011

 'More'

More time to talk
More songs to sing
More time to listen to words that heal
More versions of the story to share
More long talks
More late nights
More secrets to share.

I want more of this
More of me, more from you

I want more from life.

'Love'

'Love' Sept. 12, 2011

Who gets to decide who loves who
Maybe it's an old man in the sky who keeps track of these things
Or a woman who is too much in love that she forgot to find someone for me.
When will I get my love to come find me?
More than anything, I want someone to love me and touch me like we belong together

We would fly away to someplace warm
We would drink wine
We would be laughing, telling too many stories of all of the things that we had done together.

Random Thoughts

We need to trust that people have the best intentions.

Movies are a lovely way to spend a Canadian winter night.

When it seems that you can't go on, just take one more step.

I am not an expert on this, but love is magical and transformative. Make room for love.

Cold weather is best in winter.

Surround yourself with lively friends who can make you laugh so much that you forget some of your pain.

Always say what you mean - life is too short for lies.

Living with disabilities is not the worst thing that can happen to you.

Feel better about yourself --- you are AMAZING

Let's bury the R-word!  I don't care if you don't "mean it like that." The R-word sucks and it needs to go. 

Looking at the world through my eyes (this is what I see)

1. So many people seem so sad they don't exude love or joy.

2. Music soothes my pain.

3. Letting people into your heart/life is worth the risk of losing them -- positive and healthy relationships are so life-giving.

4. Looking at anyone with a disability with anything other than love is a crime. We are so sad when you judge us.

5. Same goes for looking at anyone with judgement.

6. Amazing people are around to support you, let them in.

7. There is power in touch.

8. Looking at yourself with anything other than love is also a crime.

9. Fear keeps us from new experiences.

10. Beauty is everywhere to those open to it.

My Advice to You

1. Don't stay isolated.

2. Never apologise for who you are.

3. Leave staying angry to someone else.

4. Sing ! ! (in your head, or out loud if you can)

5. Find something you enjoy and do it.

6. Get out of your bed, or room, or house, as you are able.

7. Reach out to others with similar interests: use online or multimedia communication.

8. Spend time in grateful prayer.

9. Good friends are hard to find. Nurture your friends and don't take them for granted.

10. Now and again, find new things to make you smile.

11. Choose your speech wisely, you can't take it back.

12. Move towards love and stay as positive as you can.

13. Music feeds the soul, find some that speaks to your heart.

14. Meet new people and be open to the possibility of friendship.

15. Listen to Great Big Sea, their music moves me.

16. Make room for love.

17. Change the world.

18. Keep somethings to yourself. Leave them between you and God.

19. Wonder how things work and then find out.

20. Every time you are with the people you love, tell them or show them how you feel.

Woman with RS

Everyday something hurts, sometimes I can't name it or describe what/where it hurts.

There is a constant awareness of pain I always have. Sometimes its manageable but it is always there.

I am old enough to know what is missing from my life.

The absence of romantic relationship/intimacy is a real loss, most people don't think I want a romantic relationship because of my RS. They are wrong.

Being a woman with RS

... means pain, loneliness, invisibility, being ignored.

Most people don't/can't/won't learn to communicate with me.

My intellect is never assumed.

I am expected to smile.

Kids stop and stare. I can understand that. When adults stop and stare it is very frustrating. They don't think I see or understand: Stop staring at me.

I can't even imagine speaking on my own.

I want to be independent, no need for help with bathroom, eating, drinking, no facilitated communication.