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Through my eyes…

June BlogThere are many times, especially when I meet new individuals or even when I am having coffee with my closest friend, that I find myself searching for answers. How am I going to explain this? It’s one of the hardest questions I need to answer, and to this day my answers are always difficult to produce.

When you sit back and you have time to reflect, you may think about your life. This one life you have. You think about why this battle chose you and how every single day for the rest of your life, you’re going to be fighting. That’s hard to accept, it’s one of the hardest things to accept. So let me try and explain to you, the best way I know how, what this battle really is.

Slowly, I was starting to notice differences as I was getting older.  A feeling in the pit of my stomach; something was missing and I might never be able to replace it. Something was happening and nobody could tell me what. A code that nobody seemed to be able to crack. Then there are the thoughts of what am I going to tell you? What happens when I tell you who I am? Would you turn your back on me?

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Learn to Make Yourself Happy

 Happiness. You can’t fight the feeling when you feel it, and you can’t hide it when  you crave what it used to be. I thought certain aspects of life might tear me down –  especially with what others might think – but I have never allowed myself to be  defined by what other people had to say about who I was. It was through lessons,  and challenging myself that got me to where I am now. I learned to put myself first.  Yes, sometimes there are individuals who see my flaws, and perceive them as  something they don’t want to deal with –it’s just easier that way. Unfortunately, I  cannot walk away from myself, and I’m not sure I ever would. I am able to accept my  weaknesses, and nobody can use that against me. I know who I am, and who I am  not. Yes, we all want to be accepted, and loved. But it has to start with yourself.

I want you to be happy. I want you to not rush getting a mortgage, getting married,  or growing up. When I was younger, all I wanted was to grow up. I wanted to wear  make-up, and drive a car and feel the wind blowing in my hair. Now, I’d trade  everything to start over, and appreciate those days spent making snow forts, and  eating popsicles. You can’t go back, but you can step back. When I stepped back, I  had a chance to see what I could not see before. I saw what was worth fighting for, I felt my life get brighter, and at the same time I felt my heart become emptier. I found kindness where I did not even know it existed. So have patience in today, in tomorrow. Learn to love yourself, even within in the things you cannot change.

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Life’s Gifts

Life's Gifts

Christmas is one of my most favourite holidays; I even love it more than my birthday. Not because of presents, or cookies, or great store deals. I love it for reasons that are far from hot chocolate and peppermint candy canes.

During the holidays, I feel especially blessed. I find myself asking, How did I ever get so lucky? Maybe you think I am crazy (it’s okay, I think the same thing sometimes too,) because how can you ever feel lucky when your whole life is a battle? Well I’ll tell you why…

In life you are going to meet two kinds of people: There are the ones that spend their lives chasing after the next promotion, and will never be able to give you an answer as to what they are chasing after. Then there are the ones who know about taking chances and forgiving those who did them wrong – they have learned the lessons of life, and do not take anything for granted. They know about doing the right thing even when nobody is watching. Their character is rare in the simplest form.   From them, you will learn everything worth knowing. These are the individuals who will show you all that you are, and not all that you aren’t.

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i AM WHO i AM Presentation – November 21, 2012

061Wow, what an exciting day! The Pine Ridge Secondary School once again welcomed Muscular Dystrophy Canada to their school for a wonderful i AM WHO i AM presentation of positive messages and opportunity to interact with one another.

This week was also part of anti-bullying month and in order to mark this event, Pine Ridge Secondary School held three assemblies that featured the motivational speaking and incredible dancing of Luca “Lazylegz” Patuelli, a National Muscular Dystrophy Canada ambassador.

i AM WHO i AM presentation Nov 21.12 024Luca provided the story of his triumph and how he became one of Canada’s best B-Boys in the break dancing world.  Luca’s message was both powerful and thought-provoking.  He shared how everyone has strengths and should live their life as they choose because everyone is an individual and should be proud of whom they are, which really upholds the motto “I am Who I Am.” Luca also combined this with his message of “No Excuses, No Limits” which means we can all do anything we want if we put our minds to it.  The performances were outrageous and included some high stepping moves and spins that simply were out of this world.  Luca not only performed his talents but shared the stage with many of the students from Pine Ridge Secondary School where they showed off their break dancing talents.  All in all it was an exciting day, which brought the message of acceptance and kindness to all, home.

On top of the three performances there were fundraising efforts to directly benefit Muscular Dystrophy Canada.  These included the sales of I am who I am T-shirts, wrist bands and a sub day fundraiser.

i AM WHO i AM presentation Nov 21.12 001Luca also sold his merchandise which included t-shirts and wrist bands with part proceeds going back to Muscular Dystrophy Canada.

Muscular Dystrophy Canada staff were on hand to celebrate this day and to answer questions on supports and services provided through Muscular Dystrophy Canada.

All in all an excellent day that was inspiring, informative, exciting and “sick” to quote Luca, which means excellent, so I am told.

Thanks again Pine Ridge Secondary School for the wonderful job in organizing such an awesome day and for inviting us.  We love the school spirit and the genuine warmness of you all.  See more pictures here.

Karen Dunbar is a Services Specialist in Ontario and Nunavut region.

Encouraging accepting and inclusive environments

Recently the themes of acceptance and bullying have been coming up again and again.  It’s a popular topic in the media and that’s because many people can personally relate.  The feelings of empathy are prevalent for those who are victims of bullying and for those who are not accepted for who they are.  As a kid, or maybe as a human being, everyone mostly just wants to fit in without drawing attention to their differences, but in some circumstances, including for those who have a long-term diagnosis of muscular dystrophy, the differences can be hard to hide.  But more importantly, differences aren’t meant to be hidden.

Some of the most basic lessons we are taught at a young age –being kind and respectful—get left behind at some point.  One of Muscular Dystrophy Canada’s programs, HOP for Muscular Dystrophy, aims to teach nursery school and kindergarten students the importance of acceptance.  The HOP for Muscular Dystrophy program infuses an educational component that goes beyond the fun hopping activity complete with bunny ears and crafts to promote compassionate and inclusive school communities, where people of all physical abilities are accepted for who they are.

Sometimes these lessons are forgotten, and by pre-teen age they can become huge issues.  An MDC staffer shared this article about the difficultly one boy with a disability had making friends as he got older; once some pre-teens start to register differences more acutely then they draw away rather than put the bit of extra effort that could result in a rich and rewarding friendship for both parties.

Sometimes it’s worse; bullying is an incredibly timely and widespread issue.  An American film called BULLY, which opens at the end of this month, chronicles the lives of individuals and families closely affected by bullying by attaching their stories to the statistic that in America over 13 million children will be bullied this year. A 2007 self report survey among Toronto youth indicates that 16% of youths in grades 7 to 9 had been bullied on more than 12 occasions during the year prior to the survey.  A 2007 review of international literature by Canadian authors finds kids with physical and developmental disabilities are at greater risk of being bullied.  Use this resource when you are navigating bullying and the child with special needs.

In September 2011, Mitchell Wilson took a tragic and drastic measure, and he took his own life.  Mitchell had muscular dystrophy and had been a victim of bullying.  Students from his school region, the Pickering Family of Schools, chose to honour and remember Mitchell by rallying together to effect change and stand up against bullying.  The i AM WHO i AM campaign raised almost $20,000 in three months for Muscular Dystrophy Canada, and their message was loud and clear—acceptance and inclusiveness for everyone.

Acceptance is something that everyone seeks and should receive. I am who I am, you are who you are, and that should be okay.

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