Day #1 Destination – Chutes Provincial Park

Sunday, July 14th

We stayed at Mike’s parents place the past two nights as our house was now empty.  It was great for the girls to spend some quality time with them as Mike and I spent most of Saturday doing the final cleaning of the house and preparing for the impending adenture trip.  Part of the preparation involved us packing up the car with all our stuff a couple of times to ensure that everthing fit.  In the end we contemplated putting London on top for we were quite full.

london

We joked that maybe we should take a picture of how we finally organized things so we could remember every time we had to pack up again,  and in retrospect we wish we had for it seemed like things expanded or multiplied along the journey.  In the end we decided to bring our bikes, the Wike (for Reilly and London), Reilly’s collapsible wheelchair, tent, and camping basics and reluctantly gave up the eating tent. 

After bidding the grandparents good-bye at 9.00 am, we headed out excited to embark on this trip. 

bon voyage

Part of what makes this an adventure for us is as follows:

  • We are City Slickers and have only camped 4x as a family, 2 nights at a time with another family except one experience. 
  • We have a child with sever special needs, who doesn’t talk, walks occasionally with support, and thus needs to be lifted and carried most of the time, oh and is in diapers – this is an important point for later.
  • We have never vacationed this long as a family together
  • Lastly, we only had the first three nights mapped out and only had two main attractions dotted on the map – Mt. Rushmore and Yellowstone National Park and I am not the type of person that likes to wing things.

So our first destination is Chutes Provincial Park, which is only about 4.5 hours away. What we did agree on in advance is try to limit the driving time to about 4-5 hours a day as we knew we would be stopping quite a bit for rest breaks and seeing different things.   So 2 hours into the drive we stopped for a bathroom break and wanted to make sure we gave Reilly an opportunity to walk so we put on her new AFO’s. We literally just got them a few days before and they need to be gradually worked in, so we thought we would use them on our breaks. As you can see they are pretty much like a set of legs and going forward that is what I referred to them as ‘putting on Reilly’s legs’. The only problem is that because of Reilly’s special car seat and Mike’s height (6 foot 3 inches), she can’t wear them in the car. So for every stop we had to put them on and take them off (with shoes of course).

afo

We ended up arriving just after 3.00 pm at the camp grounds and it only took about an hour to set everything up. We felt pretty good and still very excited about this whole trip. Hey, we can do this. 

Day #1 to be cont…

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Last week in our home town

I totally underestimated how busy I/we would be in the final week leading up to our move date and Adventure Trip.   There were so many little things that needed to be packed up in the final days that I found myself cursing on whether I could have done more in advance but knew that I was just being hard on myself.  The challenge is that not only were we planning a move but a move that involved going across the country, plus preparing for a two week Adventure trip to get out there.

Of course things couldn’t go smoothly in these final few days and our water heater stopped working two weeks before closing. This is the same water heater that stopped working back in January of this year and sank $400 on getting the main part replaced.  We could have moved to a rental unit for approx. $15/month but we thought what else could go wrong, well there is one other part that can go wrong, that is what!  To make a long story short, we spoke to our Buyer’s Real Estate agent and explained the situation and strongly recommended that they allow us to put in a rental unit for it would be in their long term best interest (most people have rentals in our area).  We also said we would pay one years worth of rental costs. This offer was declined and our last offer was $800 cash and nope they wanted a owned unit and if that meant we had to buy a new one so be it.  So when the repair man came one week before closing I asked him to bring a new unit but first he had to do his best to fix our existing one.  In the end he replaced the gas valve and sheepishly relayed that the cost would be $660. I was thrilled and don’t think he has ever had a happier client in his life paying that much money. Little did he know $660 was better than $1200+.  Technically this fixed unit should last for quite some time but we thought that the first time we dropped a good chunk of cash and we couldn’t help but shake our heads at the lack of cooperation of the new home owners when they would have been ahead in the long run. Oh well.

In the final week we wanted to say a special good-bye to so many people but it wasn’t possible.  I am not sure how we could have done it differently unless we grew more arms and legs to get through our long list of to do’s.   All I can say is thank goodness for technology for it will certainly help bridge the physical divide that has now been created 😦

Our move date was schedule for Friday, July 12th.  Mike spent a considerable amount of time reviewing different moving options and in the end selected one of the big three names out there.  Although we are paying for our own move as opposed to having a company pay for it, we felt we couldn’t afford to go with a smaller outfit who doesn’t have the same published track record.  So far no regrets with this decision.

Within an hour though of the Movers being at our house swiftly organizing our stuff into a container, Mike realizes he doesn’t know where his wallet is.  He back tracked over the previous evenings outings to no avail and we scoured what was still unpacked in the house and nothing.  So here we are Friday mid morning and Mike has lost his wallet and we are supposed to start our Adventure trip Sunday morning that requires him to have a Driver’s License, thank goodness I already put all our passports aside in a special case, otherwise, we would have had to change our plans.  With time ticking away, he promptly phones all the CC companies to cancel his cards and heads to get a temporary Drivers License.   Needless to say Mike was quite frustrated not knowing what happened to it and I am hoping that one of us just mistakenly packed it.  So in about one week’s time we should know what happened to the mysterious wallet.

 

 

I’m Back

Right now I am sitting in my sister’s kitchen in Calgary, AB typing up this post after an unintended three week computer diet.   I had great intentions to document the adventures we had more or less real-time through my Blog as we travelled from the Toronto area to Calgary, AB but it proved to be challenging for a few different reasons.  So instead where we could we posted quick updates through Facebook (never used it much before) and kept a journal.

As a result, over the next few weeks I will be going back and reliving our adventure, one that involved covering over 4700 kilometers with two kids, one with special needs who doesn’t walk (Rett Syndrome), one minivan filled to the brim, one credit card, a will to succeed, and a sense of humour.

In the mean-time we are anxiously awaiting to take  possession of our new house this Thursday, August 1st.

Final Countdown

Two more sleeps until the moving company comes to take all our beloved possessions (Friday) and then on Sunday morning we embark on our Road Trip, yikes.  I am definitely ready to take the next step as I am tired of packing and living in a house of boxes but now that the end is near I am panicking a little more with the remaining to do list.

Although we have purged quite a bit I am still floored at how much STUFF we have to move.  Part of the packing supplies I have bought, includes this 250 foot roll (see below, Puppy has been included to give you a good perspective of its size) and I have made a huge dent in it and expect it all to be gone by Thursday night. It has been great to use for pictures and other pieces that don’t fit into boxes.

IMG_7394

Although I am looking forward to settling in the new house, I do not look forward to the unpacking step. Mainly because we are going to be sooo tight for space all over, bedrooms, closets, kitchen cabinets, and shelves in general that I wouldn’t be surprised if it took us several months to unpack everything.

Here are some packing tips that I have found helpful along the way:

  • Acquire all packing material used by a friend in a recent move. I was lucky in that a good friend moved back in December and she kept all their stuff for us to use – huge plus!!!
  • If your company or good friend’s company has a shipping department, find out if they have any boxes and packing supplies that they recycle. We scored big time from my husband’s work.
  • To help you purge, have a friend come over to help you make those difficult decisions
  • Use a site like Kijiji to sell unwanted items. We did a bit of this but I found greater satisfaction in giving away many items to friends knowing that they would be well loved or used.
  • Check out a local bike store for free bike boxes – we were able to get 4 of them, 2 we will use for bikes and the other 2 for odd pieces
  • Once you throw away your children’s trinkets and toys, don’t leave the garbage bag in site or let them see the recycling bins full of their prized art work. Sometimes it is best to find an alternate disposal plan!

 

Appreciating differences

booksOne of the best lines in this book was at the end, in the author’s notes. It reads “If you’ve met one child with autism, you’ve met one child with autism.”  I honestly have never heard anyone say this before but I couldn’t agree with it more.

I have lost track on how many documented mutations there are for Rett Syndrome but one site refers to there being over 200. So that means there are over 200 mutation variations between 2 specific genes involved, the most common one being the MECP2 and the other one CDK1 (Reilly has a MECP2 mutuation).  Furthermore, since the mutuation occurs on the X chromosone and girls have two X chromosones, you could have two girls with the exact same mutuation but present different symptoms of Rett Syndrome.  For there is something else involved within our bodies that determine how much of the good X chromosone is going to be used versus the defective one.   I am not a genetist and have no biology background  but I am not sure how anyone can dispute that our girls with Rett Syndrome can be so different from one another and some of their nuances and not so subtle differences can not be ignored, especially in therapy and school settings.

This was reinforced not by socializing with another family with a daughter with Rett Syndrome but rather having another typical 6 year old stay with us for a few days at the cottage.  London’s friend D comes from a good family, very similar on the academic front, and they get along really well, but they still have have huge differences when it comes to what they like to eat, what they prefer to watch on tv, how they handle change, etc.  It has been one interesting exercise to say the least and let’s just say they are motivated by different things and we need to apply different strategies and techniques to change their behaviour if so desired.  So why would anyone think it was okay to apply the same approach to girls with Rett Syndrome, just because they share the same label?

There is a review on the back of this book that compliments Lisa for essentially taking “complicated topics and making them accessible to readers through beautifully drawn characters and profound, human-scale stories” and although I totally agree the author has a gift for writing, I would be surprised if her narrative has any residual effect on her readers, especially those with no autism connection.

The more I think about it, I am not a fan at how she connects two characters through the story of an autistic boy.  A story where one mother loses her autistic son at 8 years of age and then her marriage, and another mother who has three typical children whose husband becomes unfaithful, divorce is viable but then they end up working it out.   Although this story appears to weave a beautiful tale and a feel good message at the end, I am dissapointed on a few different levels and almost let down by the author’s choices.