Road Trip


In less than 3 weeks we will be embarking on the Road Trip of our life.   I have always envied those families who are able to pack up everything and go explore the world with their kids for some extended time period.   Trust me I have toyed with this idea for some time in my mind trying to figure out how do could do it but the Rett Syndrome factor (i.e. medical needs, physical mobility challenges, and the limited activities that engage Reilly)  keeps getting in the way.  Maybe it is a blessing in disguise.

However, many people might equate what we are doing and how we are getting out to Calgary a close second in terms of craziness or level of adventure.   I would love to even say that we are taking 3 months to get out to Calgary and exploring every nook and cranny en route but nope, just two weeks. I don’t doubt that at times these two weeks will feel like it is two weeks too long but nevertheless we are looking forward to this little adventure and what fun we might get into to.

So what does it entail?

  • Mode of Transport: One Brand new Honda Odyssey
  • Departure Point: Greater Toronto area – Sunday, July 14th am
  • Final Destination: Calgary, Alberta – arrive no later than Monday, July 29th
  • Route: Travel north up to Sault Ste Marie, Ontario and then head south of the border, across the northern US and then up again through Alberta
  • Key Points of interest:  Mount Rushmore, Yellowstone National Park, and anything inbetween
  • Sleeping Plans: Camping (we have only camped 4x before as a family, 2 night maximum). I have only booked the first two nights in Sault Ste. Marie and  then we are just going with the wind from there. Ahh!
  • Fear: Bears – we have no experience with camping in bear country
  • Max Driving Distance/Day: Ideally no more than 6 hours of driving per day. I think this constraint is more for me than the kids.
  • Key Resources: CAA membership and Trip Check information, Honda Road Side Assistance Trip information, updated Magellan with US map information, US Cell Phone Coverage and Life Insurance already in place.
  • Key Success Factor: It will definitely be a sense of  humour

In the remaining two weeks I will be focusing on finishing packing up this house and preparing for this trip.  I am starting to get real nervous that I won’t be fully prepared and there is no reset button on what we are about to embark on.


How one decision influences things

Our original plan regarding our move to Calgary was to sell our house, pack up everything, send it off with the movers and for us to take an extended trip out west at which point we would either look to purchase a home or rent one.   If we had gone with this plan we wouldn’t have been able to move to Calgary at that time due to the recent flooding for it is hard to believe that now there were would be any properties, rental or purchase, available or ones we could afford. It is fascinating how one decision can change your whole life.

It was actually my parents who influenced me to get on a plane to go look for a place back in April. They were worried that waiting until we got out there would be too stressful, but it is not like we didn’t have a place to crash for a couple of months if needed, as I have my sister out there.  Who knows maybe they had a sixth sense that something was to happen that would have made it difficult.  They are not known to have these special powers but I am not going to question anything now.

So back in early May I went out for a week to look for a place and ended up buying a house that has not been affected by the flood due to its location in the city. Although it is inner city, it is not near any water and is on flat ground.  The current owners are fixing up a house right now and thank goodness they should not be affected as well. If this house was in one of the many areas I don’t know what we would have done, probably would have had no choice but to back out of the deal.

I have delayed writing about Calgary for I felt that it wasn’t my story to write about so soon. I wasn’t the one in immediate crisis or hardship mode and for me to express concern about my future house and other long term implications would only be selfish given that we have a roof over our head and all the amenities of a comfortable life. Having said that I have been following the coverage like no tomorrow and I am just floored at what has happened in areas that I only became recently familiar with. When I did the Jugo 10k race, I ran through many of the areas that were hit hard and honestly can’t imagine what the city must be going through.  Down below is just one image of an intersection before and after the flood, incredible.

I absolutely love to read and hear about the amazing stories of neighborhood teamwork and the generosity of so many people within the city and from other parts of Canada volunteering their time or resources to help those in Calgary during this clean-up time.   As much as none of us likes to experience such devastation, sometimes the aftermath can bring this crazy human race a little closer than would otherwise be possible.

There is no question we will experience some challenges once we arrive for we do need to figure out how to make the place accessible and I can’t imagine the process right now to get a permit, materials to build things, and a contractor.  Again in the grand scheme of things this is nothing and we are not letting our mind worry about any of these details that we can’t control right now. They will work themselves out over time and hopefully everyone will be receptive to a little creativity come September should we not have everything in place to support Reilly getting onto the bus in her wheelchair.

Before the flood By Leslie Young

Before the flood
By Leslie Young

Same intersection, after the  flood. By Lesley Young.

Same intersection, after the flood. By Lesley Young.

Describing the Big Change


nbbpinkI apologize if this image offends anyone but I think it is perfect given that numerous people have used the exact words that ‘we must have big balls for doing what we are doing’ (i.e. moving to Calgary and essentially starting over).  Given that I am female, this pink ball image seem to be appropriate.  At first I was a little offended that this male anatomy term was being used to describe our adventure but I guess when you get down to medical science, I believe testosterone is what drives adventurous behaviour, right?  Either way I am cool with it.

There is no question that some people think we are crazy for giving up what we do have here and yes we are taking a risk.  I am confident that although there are going to have some moments down the road where we say to ourselves, what the hell did we do,  I know in the long run we will be glad we made the change.

Then there are people who are cool with what we are dong or indifferent but get absolutely stumped that we are making these bold changes without any jobs lined up.  Sure cash inflows are very important but we have planned for this and have socked away a healthy emergency fund to bridge us at least several months if needed.  Sure we could have waited for A job to be lined up first but truthfully that would have been even more stressful if we have to split up (i.e. one of us go ahead to work).  I would need another post to explain this more thoroughly.  Sometimes I secretly enjoy saying we don’t have jobs lined up only to see the look that we must be crazy or the stupid comments many have actually made that this probably wasn’t the best approach to take. I translate these negative comments as the people expressing their own fear of change.

Then we have the camp of people that  have used the big ball reference, and those are the ones we find completely envious that we are taking life by the reins, as they would love to do something similar as they too are longing for a change but feel the chains of responsibility and stability are wound too tight to even think about it.  And of course we also have a lot of people are completely supportive, similar to unconditional love, have no desire to make any bold changes but truly happy for us.

Since we have made our big decision, one of my good friends also took life by the reins and decided they needed a little adventure. Before we all knew it, her husband took a job in the US and she is busily planning their big move.  Although the new company will look after most of the moving details, it will be nice to have someone in my network that will be going through some similar adjustments.

Not everyone has to uproot their family or do something big like this to deserve the big ball award :-), I think everyone deserves it if you are being true to yourself, your desire and dreams. Now this doesn’t mean you give up or forgo responsibilities but you pursue your dreams in a responsible way. Anything can be done when you set your mind to it, just think one step at a time.

Warning: Moving Date is closer than it appears – Ahhhhh!

Ontario's flower: Trillium

Ontario’s flower: Trillium

Oh my goodness the clock is ticking and it seems that it is going faster and faster as we are down to our final days in Ontario.  Although we  have 26 days left, I want to have almost everything packed up by the end of this month and that is 10 days away, for we are spending the first week of July at my parents cottage/house.  Although I am probably in good shape I am panicking with how little time is left and the feeling that I have so much left to do.

Plus not only do we have to pack everything up for the move but we are also doing an extended camping trip across the country to get to Calgary and also have to plan for such an excursion.  Needless to say I am getting very anxious with what lays before us and hopefully we haven’t taken on more than we can chew with this camping adventure.   Camping in itself is not a big deal but we have only ever camped for 2 nights and it  has been quite a rainy start to the season, add the fact that Reilly rarely walks these days and we won’t have her wheelchair (we will have her Wike), oh and the girls are quite picky these days with their eating habits, will make for some exciting times.   Ahhhhhhhhh!!!

To say that this song is going through my head over and over these days is an under statement:



Trillium: The provincial flower for Ontario

Happy Father’s Day!

I met up with a girlfriend for coffee earlier this week and she mentioned she submitted her husband’s name into a contest that was looking to recognize Exceptional Dads on Father’s Day.  There is no question that he deserves this recognition as he is a pretty exceptional parent to another little girl with Rett Syndrome.  I only wish I knew about the contest earlier for in my humble and biased opinion, my other half is a shoe in as well.  Now let me get the record straight, just because you have a special needs child doesn’t automatically make you an Exceptional Dad, it is an earned recognition and sometimes the task is not so easy.

Here are just some of the reasons I would have noted as to why Reilly and London’s dad is worthy of such recognition:

  • Mike has never shirked away from sharing any care requirements for Reilly – diaper changes, bathing, dressing, feeding, etc.
  • You can often hear him try out one of his many different character voices for the girls in attempt to alter their mood, which almost always result in giggles
  • Shares in taking the girls to their respective extra curricular activities, even if that means ending work early and making up for the time after the girls go to bed
  • Indulges London in her hockey interests (seriously this girl is driving this) by giving her daily updates on NHL games and practicing her hockey skills in the basement or outside
  • He can single handedly care for the girls for a few days while I am away on business or a girls weekend. The girls are well fed and entertained during this time and there is never a question that he can’t or doesn’t want to take this on.
  • Mike is an awesome cook and can come up with some creative options for everyone in the family to enjoy
  • Setting an incredible example for both girls to never give up,  boundaries are meant to be challenged, and that change can be a really good thing

I came across this quote that I think is sooooo true  “It is admirable for a man to take his son fishing, but there is a special place in heaven for the father who takes his daughter shopping”. – John Sinor.  I guess the point of this quote is that everyone expects a dad to do the obvious or the expected in a traditional role (i.e. fishing) and even though shopping should fit into this category if that is his daughter’s interests it often doesn’t, so for a man to do this speaks volumes that he views all of his children  interests, regardless of gender, are worthy of his attention and time. This would be Mike.

I don’t think any one would deny or challenge that having a special needs child calls for additional strength, wisdom, and courage and we have come across many people who have said “I don’t know how you do it”.  We often tell them, you just do and you would find a way but I think the truth is that we have made a choice, and a choice not everyone makes, especially the dad.  Mike would probably say there really weren’t options as the only option he sees in his mind is the one he is following, and that is to not get bogged down looking at what could have been but rather working to create the best life possible for the family.  I don’t think Reilly and London could have asked for a better dad!



London, spring of 2013 (6 years old)

London, spring of 2013 (6 years old)

Reilly May 2013 (8 years old)

Reilly May 2013 (8 years old)

Judging your life

“What if a life was judged not by its monetary worth or possible economic benefit to society, but as a series of complex and rewarding relationships?” Globe and Mail.

I have reread this quote over and over again to myself for it has so much meaning,  application and implications to my own life.  I know that I wouldn’t have given this quote the time of day if it wasn’t for raising a child with severe handicaps for I am part of the economic philosophy and generation of my time that your worth is defined by more external measures.

For me it dates back to my first job at 10 years of age, where I had a serious babysitting gig earning $2/hr and saved over $500 in 2 years. At 13, I was working for my dad selling hockey programs and tickets at the local Jr. A hockey arena during game night and at 14, I was employed by St. Cinnamon, making cinnamon buns at the local mall.  I don’t even think I was legal to work back then but somehow I made it happen.  At 16 I worked at Canadian Tire and continued with various other jobs right through University. The fact that I graduated from a top school in Canada with a Commerce degree is no coincidence.

My goal was to work downtown Toronto in one of the high rises, wearing a power suit,  making the big bucks and living the grand life travelling the world.   At school we were practically conditioned for such pursuits and made to believe that this was THE path to follow.  I didn’t end up pursuing this path upon graduation, another post is needed to address the reasons around that,  but what stuck with me over these years is that those that are deemed successful are the ones that have climbed the corporate ladder and are making tons of money and have the materialistic products to prove it -nice cars, big houses, vacations, etc.  And those that don’t have such demonstrations of success must not be as talented or skilled as opposed the possibility that these individuals have actually chosen to redefine what it means to be successful, and potentially these people might actually rate higher in life satisfaction scores.

Now the fact that I sometimes get frustrated with our circumstances as we are forced to make compromises that other families don’t have to make and get very little support from the community, only highlights further the paradigm shift that really needs to take place in our society.  We talk about companies needing to become more socially responsible what about in our own communities? For instance, recently our family attended a BBQ with 4 other families and out of the 8 children there, only 1 child attempted a little interaction with Reilly. This child was 3 whereas all the other children were 6 or older. Although the adults said hello to Reilly upon us arriving, not one asked to help feed, entertain, walk or do anything to engage Reilly.  I know it is challenging and I am not innocent myself but together we all need to do better when it comes to supporting and accepting differences.

Can you imagine how our communities would be different if we raised our children to place greater value on developing rich relationships  instead of monetary success and material belongings?  Sure money is important and I am not suggesting we take it away but it should be one piece of the pie and not the entire pie.  Here are some of the things I think might be different:

  • Schools would have active partnerships with Senior Citizen retirement homes
  • Children with special needs would be more highly integrated with regular classrooms
  • My daughter with RS would have greater access to the same basic benefits as other children without the parents having to pay extra dollars
  • Other children would do more than just stare and whisper about Reilly being different. Instead their curiousity would blossom into rich and wonderful interactions and relationships
  • There would be funding for all necessary equipment for individuals like my daughter to function with dignity
  • People wouldn’t look at families like ours with pity or gratitude that they don’t have such a ‘burden’ but rather just another example of what a family might look like
  • More accessible housing would be built to allow seniors and those with special needs to stay in their own homes (longer)
  • Children would have more options with career choices that match their strengths without getting caught up in today’s definition of what a cool job is about (money!)
  • Employers would offer more flexible working arrangements for parent’s

Given that my own self-worth is very tightly interwoven into how society views Reilly’s worth or value it is discouraging but yet I am determined to do everything within my power to help influence our network of interactions, not just with our family but also my role to others.  Thoughts lead to actions, here is mine….