I bid you adieu

At this point readers should probably consider this blog as complete. Phoenix is 8, and our life keeps on moving forward a a big, messy family does - one day at a time at a pace where the days are long but the years are short. I don't feel as riled up about Down syndrome or disability as I used to, although it will always be a part of our lives.

To anyone  who has followed along in our journey - I thank you. I hope you have learned a bit about parenting a child with DS, at least my experience of it, and I hope you can see the beauty and richness of our lives with Phoenix in it. Take care and peace be with you all.

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.

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.

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.

Ash and Wren turn 3!

Ash and Wren turn 3!

Because Ash and Wren's birthday falls at the beginning of December, we combine it with the In Laws Christmas and celebrate both together. It's wonderful to see family members from out of town and for the girls to see and reconnect with their extended family. The birthday cake is made by a local bakery and is done in the colours requested by the girls with many of the cartoon characters they asked for.

A few pics and a video from a successful OT session recently. For the first time Phoenix declared "I do it myself!" when asked if she wanted help.

Grade 1 update

Life is roaring along and is busy for us all. Phoenix is finally settled into the routine of grade 1, which has taken all this time since school started in Sept. The teacher and aide have noticed a big turn around in Phoenix's willingness to engage in school work and try new or hard tasks. Phoenix started the year reading B level books and has recently moved to C level and last night a D book. I tell her the new/unfamiliar vocabulary and she reads it back to me with the rest of the sentence. We generally have to do "mine turn/your turn" for her to engage and try, but when I do that she is usually more cooperative. Last night I had a hard time getting her to focus because she wanted to talk about the sand and the snow from the books instead.

Despite a 2 year focus on OT and hand strength (which the OT attributes to incredibly bendy hyper flexible hands) Phoenix still cannot write with a pencil at all. They have introduced a AAC iPad for her to type sentences on. I think this is a great move and I am super excited to see what my girl can do to show her knowledge!

Phoenix has recently started to show an intense interest in wearing make up. Which shocks the heck out of me because I don't wear make up at all. Yesterday morning Phoenix went into my bathroom drawer, found an old mascara and tried to put it on her eyes. She's also been going into my bathroom and asking for make up for the last few weeks. Santa IS being asked for make up this year. I know she is 6, and others may not agree with this step, but if she wants to be a little girl and wear make up, I don't see the problem.

Some Halloween Photos

At a recent hearing test Phoenix did an amazing job and still has great hearing (which we suspected was the case)

Saturday play time with Ash L and Wren R while P was at home chilling on her ipad. 

Jen got one nice picture of Wren while out at a DS dinner and dance. 

Look at what a beauty she is destined to be!

And some painting pictures from recently

Ash here, lips pursed in concentration.

What is life like lately?

Life is busy!! Full time working mom with 3 kids is no joke.

Phoenix is in grade 1 now. She has a 1:1 aide and is doing great. They are going to trial an AAC program called Touch Chat with her. I'm excited about this because even though P does a good job of expressing herself, she doesn't necessarily have the skills to be able to communicate what she's learning. So the fact that she can learn a program to express her knowledge is AWESOME.

This is a cold Saturday morning. It was too icy to go out so the kids asked to bake.

There was probably as much flour on the table and ground as in the bowls...

Wren on a cold weekend

Ash proudly showing the ice she's eating.

Ash and Wren sharing ice

Painting day!

I gave Phoenix's room a small makeover and painted the back wall gray and then added a purple stencil pattern

There was an agricultural fair recently so we went for hay rides and turnip digging! So much fun for the kids to see the horses.

Ash (back) and Wren (front) decided to go "swimming" in the bathtub. 

Tooth brushing time for Ash

Ash twirling in her pretty dress

Wren twirling in her pretty dres

And this classic toddler adventure. Beware the quiet!

I feel guilty for not putting time aside to blog, but there also seems like there is less to blog about. Life is plugging on, Phoenix keeps on making small gains as we work on her hand strength with the OT at home. Our big goal right now is independent dressing. We've stocked up on the greatest invention ever: jeggings, which allows Phoenix to pull her pants up and down without worrying about buttons and zippers. She's a big fan of picking her own outfits and does a fantastic job of coordinating colours.

The other interesting thing is that Phoenix has been asking me to put makeup on her. I probably wouldn't be so surprised about this if I wore make up at all, but I don't. After showering Phoenix asks me to blow dry her head (also surprising since I don't ever use the hair dryer!) and put make up on her. She's 6! So while I know it's early, I think Santa is going to be bringing Phoenix (tasteful) makeup to wear at home.