Holidays, Reflection and aging with Cerebral Palsy

This Christmas was the usual good things.  Go home, visit family and friends, reflect and think about the future.

I visited my mom every morning during my short visit.  My mom suffers from dementia.  She has good days and bad days.  Mornings seem better.  Sometimes she remembers everything, sometimes very little.  This breaks my heart. A woman who has accomplished and sacrificed so much for her family cannot truly see how they impacted my world.  My cerebral palsy has taken away some things, but not a true sense of who I am, which dementia has stolen from my mom.

Me and mom

Me and mom

How do you thank someone, who with my father, helped me have all the true great things in life?  Love, friends, and a fulfilling purpose.  How do I thank my mom that someday I would find ones who love me for who I am? That those bullies will become the smaller number of people compared to friends who become family?  How do I explain that your child who struggles to stand enabled 1700 people at TEDxToronto to stand up to applaud a message on change and leadership?  How do I think her for being stubborn, something I am proud to be accused of?  Oh well, I guess I will sit across the room with her and my wife…spending quiet time to allow her to share the moment.

The younger version of myself would visit everyone under the sun in the tight window that I visit home for the holidays.  Rushing from home to home, squeezing one hour here and there.  As I age with Cerebral Palsy, I do not have the strength, nor stamina.  I try my best to see those that I can and am saddened for those I cannot visit. Each visit matters.  Christmas has grown from valuing getting Christmas gifts to spending those moments with friends; remembering those memories that brought you together, and the bond that keeps you struggling to find those rare moments to reconnect.

As you get older you value the impact you can cause for others as the real gift of life.  This year we were able to give a thoughtful gift to cause my in-laws to tear up and cry.  The real meaning of Christmas.  Sadly, because of my Cerebral Palsy, I could not see this reaction.  The TV we all went in to get them was too big to put under the tree so we had it in the basement, where it would be setup.  This was absolutely no ones fault at all.  I married into a very inclusive family that thoughtfully includes me in everything.  However, I cannot help think of the parallel of how my mom’s dementia that steals her of memories that my Cerebral Palsy might be starting to take away sharing new memories.

Although I have to be selective with my finite energy, last night I got to share precious time with people who have become my family.  Participating in conversations and just listening taking in the moments of how their lives were going to change in this new year.  I got to share this with my wife.  Being in the room listening, laughing, and sharing.  I love sharing my life with them. Although I sometimes can’t talk loud enough, taking in the moment is everything. Maybe this is how my mom feels during my visit with her. I look forward to making new memories with them.

Memories are the chapters of the book of our lives.  I am so open on social media to share, influence, and inspire others.  I hope to one day be able to download all of it so I have something to re-experience if my memories are lost.

Merry Christmas - with love,


A Degree in Independence - Post Secondary Crossroads

This is the time of year where soon to be graduating high school students learn which Universities or Colleges they have been accepted in.  They now have to make the gut wrenching decision of where to go.  They will look at many factors - programs, reputation, scholarships/bursaries, etc.

This made me think back to when I had to make the same difficult decision.  In addition to what other kids had to consider, having Cerebral Palsy, using a power wheelchair, and needing to find personal care to help me shower, dress, etc.  This made the decision even more incredibly difficult.

I was torn between my loves of Computer Science and Business.  Also, what was seeming attractive was to take a year off to discover myself like some of my other friends.  I was really struggling.

My dad was watching me struggling to decide.  He said, “Let’s be real, your not going to be a policeman, fireman, or construction worker.  You know what else your not going to be?  Living under my roof for free the rest of your life!  You better decide.”

My dad had a way to be direct and real…

Only now I can appreciate what anxiety my parents were going through.  Not only were they going to have their youngest leave home to start their life journey, but for the first time they were going to have to trust complete strangers to take care of their disabled child who is dependent to have someone get them ups in the morning, shower, dress, get to class, etc…”.  They fought numerous battles with schools and governments to give me this opportunity…now…we were all vulnerable to what was going to become our new lives.  


I had a huge amount of anxiety just dealing with going away for school like all other kids do.  Away from my family.  Away from all my friends.  Away from the only town I have ever known to move to a new city.  

I went away.  I handled the harder academic workload.  I trusted and managed my personal care.  I learned to figure out how to manage to go shopping to buy shampoo and food.  That magical shampoo bottle I had growing up at home that never ran empty did not come with me.  My magical fridge that miraculously replenished itself with more food was also left behind.  
I learned. I overcame. I was lonely. I made lifelong friends. I have amazing experiences, some of them make me appreciate that I went to university pre-smartphone and social media era.  I made mistakes. I got opportunities. I became me.

I have multiple degrees and a diploma as I’m a lifelong learner.  However, what I learned about myself, resilience, and independence far exceeds my academic achievements.

Thank you mom and dad.  We did it. I love you.