Ready for winter, kind of.

This year we seem a little more ready for winter.  Sophie has been much healthier for longer than ever before, she is still having seizures, but no hospital stays and no nasty virus or infections yet.  I am sure they will come, but the reprieve has been nice.  We woke up to the first snow this morning and Lucas was excited to see it on all the rooftops.

The view out my front door window this morning...it would be kind of pretty if not for the light standard ;)

I have most of the Christmas decorations up inside and I found a few new decorations for the outside (I love unexpected dollar store finds, don't you?!)  that I put up yesterday.  I want to put some lights outside and some garland so hopefully that will happen before I have to do it standing in 2 feet of snow (like I have done so many times before).

There is something fun about decorating a new home for Christmas for the first time.  Trying to figure out what goes where, what looks right and what needs to stay in the bin.

This guy was another fun dollar store find..

However, I have a few plants that need planting and now the ground is frozen.  It seemed so plausible that I would get it done a couple days ago.  So, garden preparedness = FAIL.  I am not sure if this hydrangea, a few hostas and a euonymus are going to make it.  I guess we will find out in May.

I almost have my act together this year and winter is still a few weeks away. Yay me ;)

The Photo Shoot

I have always had photos of Lucas and Sophie taken at the grocery store photo studio for seasonal pictures.  They always come out pretty darn good, but it has always been difficult to get great photos of Sophie.  It is a very overwhelming experience for her and she has trouble focusing on the photographer.  Lucas is always a trooper and gives his best smiles and will even try to hold her up on his lap for a few shots.

This year I decided to try something different.  We went to an actual photographer - Amanda Kopcic Photography -  and had Sophie's Christmas photos taken.  She was a star and smiled right from the beginning.  The photographer Amanda was so nice, she worked really hard with us to get everything all set.  My mom came to help and we were quite the threesome doing itsy bitsy spider to get Sophie smiling.  We got a few great shots of Sophie by herself as well as some with me.   I am so excited to hang them on the wall this Christmas.  I already have one framed sitting on my kitchen counter :)

We will still go to the grocery store photo studio with Lucas and Sophie together but now I don't have this pressure hanging over me to get a great shot of her by herself.  We can just have fun.

I had to add a photo of Lucas of course, so here is one of my all-time favourites, taken 7 years ago...

Our Charlie Brown Christmas tree

I don't know how, but we ended up with a slight "Charlie Brown Christmas" tree this year.  We have an artificial tree that my Mother in law kindly donated to us over 10 years ago.  Each year more "needles" fall off the tree and this year I thought it would be bald by the time we got it decorated.  We decided to put the tree up this past weekend and Lucas was very excited to help me put the lights on the tree.  We were going to start with the white lights and then layer with the coloured string.  So we circled around the tree a bazillion times with the white lights and Lucas went to plug them in.  Nada.  We did not have sparkle.  We didn't even have a spark.  So we moved on to plan B, we would use only coloured lights this year.  So, I plugged in the coloured lights to make sure they worked (see, I can learn from past mistakes lol) and we started the dizzy dance again.  We took the white lights off and got the new string up and put all the decorations on and plugged it in.   Lucas said, mom the middle of the tree isn't lit up.  And he was right.  The complete middle of the tree was in blackness.  By this time I was ready to throw this tree out the window, it had lost so many needles from the first light removal I had no desire to do this again.  So I grabbed an extra light bulb and started checking them all.  Not fun, since all the baubles were on and they were dropping all over the place.  Lucas was quite impressed that they were at least bouncing when they hit the floor.  I explained that we had the best plastic Christmas baubles you could buy ;).  He thought that was awesome lol.  So I kept poking the tree and about 6 lights came back on when I moved the wires a certain way, but the rest were not lighting.  I figured it was just going be an endearing feature of the tree this year.  You almost can't tell, well, if you're not looking at the tree you can't.

Sophie and Lucas helped put all the decorations on, the home made ones get more plentiful each year.

As soon as we had finished the tree, our dog Riley had curled himself up underneath it.  Maybe it isn't so bad afterall.  Then again, he has pretty low standards ;)

Lucas put the star on the top of the tree like he always does, Sophie thought it was lots of fun to watch him way up in the air.  

Perhaps next year we will buy a big new tree that looks impressive in our new home's front window.  It would definitely have to be prelit. Then again, maybe our current version is more us.

Before Now

I sometimes find myself trying to think back, to remember what my knowledge of the medical world was, before Sophie was here.  Did I know what a ng-tube was? A g-tube?  A gastrostomy?  What did I think Cerebral Palsy was?  What did I think blindness meant?  All these things that are part of my everyday now, I can't really recall what I knew of them before.  I think I knew a fair bit, but is it just my mind remembering things from the early days of our journey with Sophie?  I know that I used to think that Cerebral Palsy meant that anyone with CP had an intellectual disability.  I mean, it was a palsy of the brain, right?  So wrong.  I am sure that I knew what tube feeding was but maybe I didn't know any of the details.  Had I ever even heard the term Hypoxic Ischemic Encephalopathy?  Had I thought about the possibility of DNR's?  Can't remember.   Did I know that a child who is non-verbal could still communicate with their parents? I don't recall.  And on and on.

 When I was just about finished university I volunteered for a short time at a residential treatment program for complex care/medically fragile children.   It is a very selective program that about 40 families currently use for their children in Southwestern Ontario.  It is a place that is held in high regard across Canada and is very difficult to get into.  I knew what the children were like that went there and never in my wildest dreams did I ever think it would be my child.  These were beautiful, loving, fun children, who had very, very difficult lives, medically and physically.  When it was suggested to us that Sophie be admitted to the program I was shocked and we resisted for a while.  But after some time we knew the program would help her and Sophie has been going a few days a month for 3 1/2 years.  When I had volunteered there many years ago, why did I choose to volunteer there?  There were thousands of places I could have volunteered.  Was I on that path for a reason or is it a gigantic coincidence.  Who knows.  But I won't lie, it it freaks me out a bit.

Jason and I used to joke about how if we ever had a special needs child I would be raising it on my own because that wouldn't be something he would ever do.  Wouldn't you know, he is the most dedicated dad to our severely medically complex girlie, and he takes it all in stride.  Because, of course, she is more than a medically complex child, she is our daughter, first.  We have had to deal with issues that I wish no parent had to deal with.  I certainly never thought that I would be worrying about how I would be lifting my daughter in the near future.  It is the one thing that has been bringing me down lately.  It scares the crap out of me that she is getting so big.  Thank God I am strong, and that Jason is here right beside me for when the day comes that I can't get her out of bed or the car or the tub on my own.  I am so thankful that we moved when we did and created our accessible home.  I don't know how I would be carrying her up and down the stairs all day and night in our old house.  This new house is tailor made for our girlie and it came just in time. 

We are very lucky, because things could be so much worse.  Sophie is very healthy this fall and we know many people who are struggling.  For now, we carry on as we have been until today, just being us.

The Christmas Window

Anyone who grew up in my city in the 70's may remember going to Simpson's and seeing the Christmas window displays.  I can remember going with my mom and dad, loving the beautiful scenes behind the glass with a huge anticipation of Christmas and all that came with that holiday.  It has become one of those memories that is in my spirit. What I mean is, I don't really remember what I saw, but I remember being there in the moment.  I can picture these ethereal visions of standing at the windows with the snow coming down and just enjoying every cold breath as we got caught up in the excitement around us.

While we were in Toronto this weekend I was walking by The Bay and noticed that they had just revealed Christmas windows!  The scenes were very cute, I loved the little mice sleeping in matchbooks. Everything lit up and moved.  Here are some of the display on Queen street this weekend.  Sorry for the poor photos, the glare was quite bad from the sun :(

I am really excited for Christmas this year.  It will be the first Christmas living in our new house, so I am looking forward to getting ready to decorate and starting some new traditions with my family.



The Big City - Part Two

After our first day in Toronto we were pretty worn out.  We hit the pool and Lucas went down the water slide for an hour.  It is a very cool one that goes outside the hotel on your way down the twists and turns.  We grabbed a pizza for dinner and chilled in our room.  We were going to the ROM (Royal Ontario Museum) on our second day so we didn't want Lucas too tired before we even got there.

We had tickets for the Terracotta Soldiers exhibit and Lucas was very excited.  He plays a computer game called Civilization that Jason got him addicted to  introduced him to about a month ago.  Jason has been playing this game for years and years, so it wasn't a huge surprise when Lucas wanted to try it out.  The game has alot of ancient Chinese emperors and cities so Lucas thought it was cool to be seeing the Terracotta Soldiers.  He was tired by the end of it but he did enjoy it very much, as did we. 

I couldn't take pictures in the Terracotta Soldiers exhibit so this is the best I could do lol....

  Lucas got all his energy back after lunch so we spent quite a bit of time checking out the permanent exhibits of the Chinese and Japanese collection.  Then we found the Natural History floor and spent a long time there.

I had to take pictures of the butterflies.  Butterflies always remind me of Sophie and all these ones were beautiful.

The poor Dodo...

Lucas taking on a raccoon and a beaver...I think they actually look a little terrified.

Being devoured by a walrus...you never know, it could happen to you ;)

We had alot of fun but we were happy to be heading home.  We missed Sophie and we were all looking forward to sleeping in our own beds with our very own comfy pillows.

The Big City - Part One

This weekend we got to have a short getaway to T.O.  Jason was there for business so Lucas and I headed up by train to meet up with him.  Sophie was at her in-patient program for the weekend so we decided it would be nice to make this a special weekend with Lucas.  Sophie gets alot of our attention so we really try to shower Lucas with quality time when we can.

On the train...

Lucas has been on the train two times before and he was very excited to go for another trip on one.    He gave me his regular photo-tude as a warning but I bribed him with some candy for a couple nice shots.  You do what you gotta do, right?  The ride was fun and we arrived to a hectic and bustling Union Station.  Lucas was a little overwhelmed (and excited) by all the honking and mayhem out front of the station, it was gridlocked for blocks on the south side, we crossed the road and hopped in a taxi and we were off once again.  We didn't arrive in Toronto until 10:00pm so it was a late night for him once we got settled at the hotel.

Saturday morning we headed out to Fort York.  Lucas is very interested in history and cultures and ancient civilizations.  So we figured he would enjoy a trip back to 1812.  He was really wanting to take a street-car, which he has never done, so we hopped on the College St. line and made our way across town.  He thought it was very cool.

Lucas was sure that I couldn't see him behind the pole.    Guards must have been shorter in 1812

We did the whole fort and Lucas really enjoyed it all, he sucked up the details like a sponge.  The amazing thing is that he will remember it all.

No wild parties I guess...

Down the steep stairs to the oldest existing kitchen in Toronto.  The money vault was also down there.  That little dark entrance led to the vault.  Lucas said it seemed "ghostly" in there.  I agreed whole heartedly.  We beat it out of there.

 What mother wouldn't be proud of this picture.....   Geez.

All I heard when taking this shot out the window was "Oh God, she's getting artsy".  I could feel the love.  But I quite like how the glass made the other building look like a wobbly house :)

Lucas loved this sailing ship, it is hard to tell here but it is about 5 ft. tall. 

These used to be on the fort walls, maybe one too many tourists got impaled and ruined the authenticity for everyone ;)

Another bribery photo.  He got "toxic waste" candy.  I know, mother of the year.



We had a fun day at Fort York and then caught the streetcar to Queen St. West for lunch at the Queen Mother, my old favourite from when we lived in Toronto.  Lucas informed us he was only willing to eat if he got spring rolls, so it worked out just fine since it is a Thai restaurant.  He also got special treatment from the waitress with his chocolate milk.  He must be cute or something :)