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.