April Always Aims At Awesome (It's late, don't judge my lack of creativity)

In case you're just checking in, I went crazy today, updating the blog for the past month(s)+.  Scroll down if you dare, for there are 5 more new posts below!

In more recent news....

Ryan's always busy and working hard.  Whether it be putting on his parent teacher interview nights, working two jobs, going out with the missionaries, helping Madeline practice her biking, attending conferences, teaching professional development courses, accepting a position on a technology council board or power raking the lawn just before it rains - this guy is the best.

Now that the weather is nicer, our backyard has become the gathering place for many neighbourhood kids.  It's fun, but I'm already running out of freezies and it's only May!

A student teacher in Madeline's class put on a Spring Celebration and had lots of fun activities for the kids to do.  

That same day, she built her own roller coaster and instructed me to take photos while she posed.

Claire is always busy at school.  She tries hard to stay awake all day, but sometimes doesn't quite make it!  She's been working on concentrating, exploring sensory equipment and making choices.  She's got a lot of good friends at school and enjoys attending.  Her favourite time of the week is probably yoga because she giggles through the entire class.

I've been keeping busy with the girls, transcription projects, my various volunteer positions and the ol' household chores scenario.  Also, many trips to the park.  :)

Ryan introduced the girls to Napoleon Dynamite the other day.  They weren't as impressed as he wanted them to be.  Perhaps in a few more years they will learn to appreciate the subtleties of this particular film.

We often have a little visitor in our bed.  She'll usually wait until the wee hours of the morning when we're absolutely fast asleep and we don't discover her until it's too late to really do anything about it.  It reminds me of this:  Funny Baby Sleeping Positions 

This month, we had an interesting experience at the Glenrose, in a Rett Syndrome Clinic.  Apparently Rett Syndrome, a diagnosis that was rejected at the beginning of our journey, is now considered as an explanation for Claire's challenges.  A genetic test originally revealed that the typical gene associated with Rett Syndrome was not affected in Claire's situation, so we moved on to other avenues and found what gene was affected.  

Apparently, they've opened the definition of Rett Syndrome to include a wider range of affected genes, and this placed us back under the radar of this clinic.  So, because we were invited, Claire and I and her aide from school met with several doctors, a physiotherapist (who showed us a really neat bike that we're trying to get for Claire), an occupational therapist, a speech language pathologist and a social worker.

Unfortunately the experience was clouded by the visit from one of the doctors, whose blunt mannerisms were not really conducive to the information that he was delivering.  I asked him for more information about Rett Syndrome and why we were back under the umbrella of this diagnosis and during his long and technical speech he would throw out bits of information like, "Girls with Rett Syndrome don't have a long life expectancy anyway," or "This is a serious illness and girls die from it."  Sitting there, hearing these kinds of things for the first time, trying to maintain composure, especially after sitting in a clinic for upwards of 4 hours and forgetting to eat lunch before I came...it was not a good combination.  Emotions got the better of me and it was difficult to express myself the way I wanted to.

It made me realize that despite the acceptance that I feel for our situation, there are always new discoveries that can be unpleasant.  It doesn't change who Claire is or how we live our day to day life, but it makes the future a little scarier.  I tend to try and focus on one day at a time, to make it as good as I can and realize that we're constantly in an intensive learning situation.  So, as people say, hug your kids a little tighter, enjoy them as much as you can.

On a lighter note, we have a special announcement!  Madeline has become a certified Jedi after attending a Star Wars birthday party.  Be careful around her or she might slap you in the butt with her pink light sabre.

Our children keep growing! Claire is seven!

Our flurry of birthdays comes this time each year.  Claire's birthday coincided with our trip to Banff, so luckily my mom did so much to help us organize an event to celebrate Claire!

They decorated her wheelchair tray with this cool jelly letters.  

She loved it!

She demolished them straight away.

Getting glitter everywhere in the process.

But today was about enjoyment, not caring about glitter distribution!

Even Madeline got in on the action.

Claire's casual lean.

Sometimes I can't believe that I've been a mom for 7 years!  This sweet, gangly, complicated little child...we love her so much.

Everyone was there.  It was the party of the century.  ;)

Claire got some really fun presents.

Aunt Natalie made this fabulous blanket for her out the softest wool you've ever felt.

She got a giant teddy bear from Grandma and Grandpa Patterson.

Noah liked the bear too.  :)

They also gave her some new duvets that have kept her very warm and snug!

One other gift that Grandma and Auntie Natalie gave her was a brand new haircut.  I couldn't believe how grown up she looked!

Grandma Patterson came up with the best idea ever - a playdough cake!

She absolutely loved it, even though it was a bit sticky.

Madeline came to the rescue and extinguished the candle because Claire was occupied with other things.

As mentioned earlier, Claire is a bright spot in our family.  This is not to say that life isn't fraught with disappointment, heartache, confrontation, grief, pain and other horrible things, but we love Claire with all we've got and we'll celebrate every thing about her.

She got to be the special birthday girl at school.  She was over the moon when the class sang to her.

Thanks to Grandma Patterson's foresight and creativity, Claire also shared these with her classmates and they were a hit.

It was a very good day.

Banff, again!

Ryan and I took a belated anniversary trip to Banff.  Here are some of our adventures.

We decided to be totally geeky tourists and stopped at a "scenic view" to take pictures on the drive.

We were lucky - despite threats of record snowfalls, the weather wasn't half bad.

Apparently Ryan is from Japan.

Our room was really neat.  A fireplace loft suite.

After checking in, we walked into town and wandered for a little while.

We spent a good deal of time relaxing, but did take in some neat sights.  We did the gondola, although it was a pretty snowy/cloudy view at the top.

All these mini snowballs, rolling down the mountain.  I kept trying to make one of my own, and imagined it rolling all the way to the bottom.

We hiked all the way to the end of the trail, just to say that we did.  It was very serene.

We went and saw the falls.

We tested out some new camera lenses (Thanks Val) and caught some really neat photos of the ice over the water.

We were super nerdy and took photographs of a fancy hotel that we did NOT stay in...ha ha.

We had a nice relaxing evening at the hot springs while it snowed on our heads.

We ate some yummy food (too much, probably!)

I'm going to leave some space now before the next picture, in case anyone is squeamish.  I probably shouldn't have put it next to the yummy food pictures, but that's just how it worked out.  

Okay, here goes.  I have a confession:  Ryan and I are murderers.  On the way home from Banff, we were marvelling at the synchronized motion of a flock of tiny birdies when SMACK.  One of the little ones at the bottom curve of the formation met the grill of our vehicle.  It was seriously stuck in there.  Luckily Ryan is a manly man and could handle the removal....he took a picture of it before though.  Scroll down if you're brave enough...and then this blog post will be over!