Sunday, 27 August 2017

On Loss

It's been a long time since I've published a post. I've got the same excuse as always that we've just been busy. Which is true, we ARE busy and I even went on leave from my job in June with the support of my school admin.

You see, at the end of May my mother was admitted to the hospital with stage 4 pancreatic cancer. In May, we all thought we would have more time with her before the unimaginable happened, and she died. In May, Mike called my sister and told her to come out to see my mom and to help me get her affairs in order so that she could just focus on the process of fighting the cancer (letting go).  That was the end of May. June 8th she passed away. The same day the palliative care doctor thought that my mom might have 3 months left to live. The same day.

So it was a shock to is, just how quickly it happened. So that even though my sister and I had 42 years with her, and others in her family had many more years, it just wasn't enough. How could it ever be enough?

So it's been hard. Harder than normal. Harder than having 3 years old twins, who understand that grandma is with the angels and a 7 year old who stills goes down stairs hoping to see her beloved grandmother and asks to go lie in her bed, where they so me so much time in quiet company while my mom watched tv and Phoenix watched or played games on grandmas iPad. This is harder than Down syndrome. It's harder than the sleep deprivation of newborn twins. It's harder than failing at your first teaching job. Man, this is HARD.

Here are some pictures that I love of my mom, mostly with her grandchildren, whom she adored.

This is from the last vacation I took with my mom. We went to see my sister and her husband in Nova Scotia. This photo was taken in their coffee shop.
 There aren't many pictures of my mom with the twins separated. Ash and Wren both wanted my moms attention simultaneously, and as a twin mom herself, she knew just what to do.

I put this one last because I wanted to set it apart. It was taken about 2 years ago when my mom went in for her hip revision. I feel like this photo perfectly captures the relationship these two had. They were just so devoted to each other and there was an utter delight in the two of them when they spent time together, and I can see the love right there, in the grasping of each others hands. I just miss her so much.

Monday, 3 April 2017

Changing the Face of Beauty

I took Phoenix to Edmonton last weekend for a head shot clinic for Changing the Face of Beauty. For a nominal fee the photographer took photos, provided props and provided clothes for the children to pose in. Phoenix chose this purple dress (her favorite colour) and refused to wear any of the clothes had picked out for her to wear. Gigantic sigh.

Regardless, the pictures turned out beautifully, and totally captured some of the expressions I most love seeing on her face.

Friday, 31 March 2017

This week Phoenix's school hosted a celebration of learning.

 Mrs G arranged for us to arrive early so Phoenix could have the chance to really focus on showing us her daily routine and some of her learning activities. She showed us 2 videos that she narrated (by reading sentences along with the videos) about some of her work with microscopes and with counting to 100.

The visit was mostly lead by Phoenix (who uses her visual schedule to cue her to the order of activities) who gleefully dragged us to the gymnasium to show us how she completes the mission impossible obstacle course (almost totally independently except the balance portions of the course).

Mrs G and Mrs T spoke a lot about how far Phoenix has come, and how they have been able to pull back the 1:1 support as Phoenix's tolerance for school work (vs body breaks) has increased significantly.
Phoenix is completing modified work, with accommodations like preferential/predetermined seating, the visual schedule and extra body/movement breaks. She is reading at a level D comfortably which is right in the middle of what her classmates can do.

I could not be happier. 

Phoenix greeted every teacher we passed by their last name (dropping the Mr/Ms etc), is interacting and initiating play with students and it is obvious that she is an important member of her school community. I'm BURSTING with happiness.

And, my little girl with SO many fine motor challenges is finally able to print her name without hand over hand. It's a HUGE achievement for her, as well as a testament to the staff team who are working with her on an ongoing basis. 

I'm just so proud of this girl.