Happy Holidays/ Here's to a New Year!

In lieu of sending out Holiday cards, I am putting a post on Zoe's blog.  How is this different from any other year?  The difference is that I deluded myself in to thinking I actually would send out holiday cards this year.  I even thought we would get a nice family photo done.  And while we are at it- why not pretend I would finally hang all the previous family photos and individual child photos on the wall?  All those school pictures waiting to be hung would be hanging in my perfectly clean house.

I know you are all shocked that this has not happened.  Even more shocking- it won't be happening any time soon.

As the year came to a close and a new year began, as usual I found myself taking stock of my life.  The highs and the lows of the previous year have been acknowledged, celebrated and in some cases grieved.

The biggest accomplishment that comes to mind about 2015 is that this was the first year in the past five years that no one in our family was in the ICU.  I was not told, "The next 24 hours are critical."  And I was not led to that horrible "quiet room" while a doctor with a sad face told me things no one should ever have to hear.

So I feel pretty good about how the year ended.  Because we are all here, together.  And we are all (mostly) healthy.

And maybe some day we will get another family photo done.  It will replace the last one we had which was taken one day before Gavin had meningitis.  In the photo, Gavin looks happy and healthy. Less than 24 hours later I was in that damn quiet room...

And some day my house will be more organised and life will always be perfect, blah, blah, blah.

For now, I celebrate where we are.  I am so grateful for how wonderful Zoe has been feeling.  In 2015, Zoe spent the first 9 months on morphine in and out of hospital.  Since September, Zoe has been doing so well.

Here we are- the start of another year and as always the hope that life will continue to be as good as this.

 Zoe's Holiday Concert

 Christmas morning

 Ailsa was as excited about Daddy's air hockey game as Gavin was.  And for the Scrubs fans out there- Oh yes, he is wearing a onesie!

 Christmas break this year was full of all the things Christmas break should be full of.  We chopped down our own Christmas tree at a tree farm.  We decorated a ginger bread house.  We went on outings like the zoo.  This photo is Zoe smiling up at the fish at the zoo.  Zoe's vision has matured/ improved in the past few months.  When we went to the zoo, Zoe was actually watching the animals for long periods of time and laughing at the silly things they did.  Zoe has always loved watching fish but is better able to track them with her eyes now.  

This is from a Marlies hockey game that Alison gave us tickets for.  Her brother had gotten the tickets for her nephews but they could not go to the game and he thought to give them to us since he knows the girls love hockey.  We were so touched by this gift.  All of the pictures of Zoe are super blurry from her moving so quickly with all her excitement.  Both girls have always loved going to hockey games.  I don't know if it is the lights, the music, or the food...  Both girls thought it was soooo funny when mommy kept chanting, "Let's go Flyers!"

My little Ice Raider

My little Ice Raider.  Number 8 on the blue team, sponsored by (who else) Tim Horton's.  This is Canada, after all :  )   Her daddy's first hockey team from . . . oh my goodness - 36 years ago was also sponsored by Tim Horton's.  Love those donuts!  

FYI- she ended up being number 8 because she was the eight kid on the blue team to pick up her sweater. Go Ailsa!  Go number 8!  Go Ice Raiders!  

Ailsa is getting better all the time.  She can skate without the support bar now, but is a still learning  so she uses the bar at practice.  The practice mainly consists of the kids skating up and down the rink, sometimes doing drills, sometimes just trying not to fall down.  The kids are all very cute- the tiny little bodies with big heads, falling down all over the place.  Gotta love it.  It's easy to pick out Ailsa as she is the only one with a pink helmet.  And pink hockey tape on her stick.   

Every Saturday, 9:15 AM.  If you are ever in town swing by to cheer her on!  

(this post was done by Gavin, just FYI- I hijacked Gen's account name!  ) 

Life Outside the Hospital is AWESOME!

I have hesitated to post it...afraid to jinx us.  I know, silly.  But life has been chugging along so well that I don't want it to end.  But we are having so much fun- we just have to share it!  Here is a glimpse of our life in the last couple of months with Zoe feeling mostly well.  A few little colds, bladder infection, etc but no major illness.  It is AWESOME!

 I have to type it- "Our life is so bright, we gotta wear shades..."

 On the merry-go-round at Chuck E. Cheese

 Trying out the tractor at the pumpkin farm.  Ailsa picked a nice, small, easy to carry pumpkin.  Zoe picked out a monster pumpkin and when I told her it was too big for me to carry she told me to roll it to the car and up the ramp!  

 Hockey, hockey, hockey.  Every Saturday morning Ailsa's plays hockey.  And every Saturday morning, Zoe yells at us until we agree to take her.  Actually, even after we agree she keeps on yelling until we get her in the car, as if we are going to forget her!  The first Saturday, Zoe was cheering so loudly that Ailsa stopped skating and yelled, "Yes, I hear you Zoe!"  Zoe has been vocalising more and more.  She tells us she wants to use her mouth to talk like Ailsa.  Who knows, maybe some day she will.  For now, it is really great to hear Zoe using her voice.  She makes some pretty hilarious sounds.  And she is LOUD!

Zoe has been feeding herself more and more.  She has really learned how to manipulate objects with her small "contracted" hands.  She is great with food she can bring to her face and drop in to the palm of her hand while her lips grab it and she uses her fingers to push it in.  She is still learning what to do with sticky food like mashed potatoes, noodles, etc.  Shoving her hand in her mouth and licking it just does not seem to occur to Zoe.  It is fascinating to see her eating skills develop.  

Overall, we have seen Zoe develop these last few months.  It is amazing how a few months of not being seriously ill allows Zoe to flourish.  She has gained a bit of weight (1kg/ 2.2 pounds) and this has made a big difference in her strength.  She walked all the way to Tim Horton's (a favourite restaurant in our neighbourhood) several times.  It is about .5km/ .8 of a mile away!  Zoe has also gained some upper body strength and can sit up tall the entire half hour horse ride at therapy.  All that muscle gain has been great for her core muscle strengthening- Zoe is able to have really deep coughs now.  Why does this excite us?  Zoe is able to clear more junk from her lungs.  Between chest physio, suctioning and Zoe's deep coughs we have kept Zoe's lungs clear of pneumonia so far.  She has had junky lungs since late September (this will never change- it is just how Zoe's lungs are) but so far we have kept the junk moving so it is not sitting and growing bacteria.  This is AMAZING!  

Like I said, "Everything is awesome, everything is cool when you're part of a team.  Everything is awesome when you're living out a dream."

Ok, maybe we have watched the Lego movie one too many times...  I know a certain 8 year old who will be very excited that a certain movie with small unintelligible yellow creatures is being released to DVD soon.  We have never actually seen the Minion movie but Zoe has been talking about it for months!  And it will give us a break from "Frozen"!  So it better be good!

First Day of School and Other Fun Days

Zoe started 3rd grade this year!!!!  Ailsa started Kindergarten!

 Zoe and Ailsa- first day of school.  The girls picked their own colour coordinating outfits.  Zoe thought it was so funny to wake Ailsa up in the morning!  Normally we shushed her to let Ailsa get extra sleep.

Ailsa all ready to go to school.  I can't believe this was my baby!  Ailsa is doing great with the transition although she was a little confused why mommy was crying...

Another Great Day!

An amazing organization called "Million Dollar Smiles" (http://www.milliondollarsmiles.ca/home) gave us a wonderful gift.  Our respite work, Alison put in an application for Zoe to receive a play structure in the backyard.  Zoe qualified and on September 13th, 25 volunteers showed up to build it in our back yard.  Despite the rain, the team worked hard to get it built by the afternoon when Zoe and Ailsa would arrive home to see the surprise.  Rogers was our sponsor- they paid for the build, the play structure, all the food, a mini picnic table and even a special needs swing!  And many of the volunteers were Rogers' employees.  Thank you Rogers!  And thank you everyone from Million Dollar Smiles!

 Zoe was feeling great that day and everyone loved seeing her face light up when she saw the play set.  There were definitely a few tears among the volunteers when Zoe was laughing and smiling on the swing.  They could see how much Zoe was going to enjoy her new backyard.

Ailsa took a little longer to warm up to the large crowd of people in our backyard but she was super excited about her new playhouse with two floors!  Both girls insist on playing in there whenever possible.  I have even had to do chest physio and administer night meds in the playhouse when Zoe is refusing to come inside!  How can I say no?  Enjoy the warm days while we still have them.

Zoe has been having a great month and we have been enjoying the last of the nice weather.  We spend what time we can in the backyard on the play set or eating outside on the deck.  The last few weeks give me hope that Zoe will have a better winter this year.  It is so great to see her smiles and hear her giggles again.  She has even put on a little (very little) bit of weight and has progressed with some of her eating skills- she can now finger feed herself!!!  This gives Zoe a lot of pleasure- she loves being independent   We hope she stays well and continues to develop- we can see how proud she is of herself.  Zoe has even pooped on the potty a few times when she asked to.  Amazing!  Imagine where she could be if she had a good long healthy stretch!

Squeezing a Lot of Summer In To August

First stop- Easter Seals Family Camp

Easter Seals is an amazing charity.  One of the great things they do is run camps that are completely accessible (no saying you can't play here!)  Zoe was able to do the climbing wall, sledge hockey, high ropes, zip line, etc.  She was very tired but had a great time.  On the high ropes- she was so relaxed she actually fell asleep!  Mommy was not so relaxed- I needed a lot of encouragement to complete the zip line!  

Zoe and Gavin getting ready for the climbing wall.

 Gavin said Zoe was laughing the whole way up and down.  She kept sticking her hands out trying to touch the wall.  The entire time the blue hammock was swinging and you could see Zoe's little brown boots kicking back and forth.

 There was a big dance party the last night.  Both girls had a lot of fun the entire week.

Next stop- Wheelchair Rugby, aka Murderball

 Michelle (our amazing nurse/ respite worker/ friend) got us all tickets to the Parapan Am Wheelchair Rugby games.  The first game we got to see Brazil crushed Chile.  The second game was more evenly matched with Argentina vs I actually forget already.  We did not stay for the third game (Canada vs USA) because the girls were pretty tired by that time. 

 We met Michelle's partner, Jason for the first time.  As you can see- Zoe was really shy around him!

 We even got to try out wheelchair rugby.  Ailsa threw the ball right at Zoe's face which Zoe thought was hilarious!

Last stop (for now)- Camping with cousins in New York

We met up with my little brother Joe, his wife Kristen, their three beautiful children, my cousin Elena and her three wonderful children to go camping.  All the cousins had a great time playing together.  Zoe loved how loud everyone was!  And Aunt Kristen really loved Zoe's honesty when Zoe asked for a hug and Kristen said, "Oh, you want to give me a hug?" Zoe answered "No"!  It was Kate (the baby) that Zoe wanted to snuggle with.

We all decided hiking 1.5 miles down 800 plus steps and through narrow passages was a great thing to do with 8 children!  Everyone was happy to stop and get wet at this waterfall halfway through the 2.5 hour hike.  I love how Zoe is practically jumping out of the backpack in this picture.  Joe and Elena kept complaining about carrying their youngest children but they never did take us up on our offer for them to switch and carry Zoe instead.  I wonder why...

So far August has been great and we are not done yet!

You Can't Say You Can't Play

In University I read a book called, "You Can't Say You Can't Play."  It was about a teacher who tells the children they can not exclude other children from their play.  The teacher has several conversations with children of different ages about what fair really means and the impact of being told you can not play.  They explored how being told you can't play affected their self esteem, self concept, hurt their feelings, caused humiliation, etc.  Not surprising, when a child is told they can not play it hurts....a lot.

Fast forward many years to this past Sunday at IKEA.  Finally, Zoe and Ailsa are both tall enough to fit the IKEA criteria for playing in the ball pit.  Both girls are excited and ready to go, but wait- first the girl working the counter says Zoe needs to be measured, she is hoping Zoe is too short to come in.  But alas, no the child is tall enough but...a-ha- here is a way to get out of this- the child can not walk on her own!  Yeah, brilliant!  Thank god there is an obvious reason for not allowing this child to play.  This way the girl can discriminate without stating the obvious "we don't want children with disabilities playing in here. She can't play in here because she is different."

Ailsa goes in to play after crying about not being able to play with Zoe.  We encourage her to have fun anyway.  Zoe looks sad and signs, "Ailsa" repeatedly while we try to explain how this is ok when it is not ok.  Not ok at all.  They won't even let Zoe roll around in the ball pit while we watch.

"It's a safety concern, we have to be fair to all the children" meaning all "normal" children.  "What if the other children started jumping on your daughter?  We could not intervene."

Seriously?

That is the best you can come up with?  So if Ailsa slips, hits her head and then falls to the floor and the other children start to jump on her, your four staff who are huddled in the corner chatting will just stand by and watch?

"During an evacuation staff are not allowed to carry children out."  Clearly they are incapable of picking up one child in the event of this impending crisis/ evacuation that is imminent.  Even though we would be standing RIGHT THERE it would still not be safe.  God help the child who is not listening and gets left behind in the burning building because IKEA staff ARE NOT allowed to pick up children.

"Would it be fair for your other daughter to have to look after her sister like that?"  Meaning what?  If a bunch of children jump Zoe we have the unfair high expectations as parents that Ailsa would alert adults to intervene???  Or are they suggesting we think Ailsa will carry Zoe out during the evacuation that is NOT HAPPENING!  AND DID I MENTION WE ARE STANDING RIGHT THERE.

So, here we are- 2015 and they say Zoe can't play.

And I am pissed.

And Sad.

And so fucking angry.

But I have to suck that back.  Help you focus on something else.  And let your sister have fun in the play space carved out for people like her- people who can walk.

The sign on the wall says, "Smaland means small land.  A land for small, but very important people.  Children.  Your children."

But I guess that does not mean all your children, certainly not those with physical disabilities because really is it fair to ruin it for all those other children just trying to have fun?  Apparently Zoe playing at the same time somehow will ruin it for everyone else.  Not sure why that is...

This is not a fight I have energy for...today.  But some day, they will get my angry letter and some day the world will change because of people like me advocating for people who can not advocate for themselves.

Some day other moms hearts will not need to break.

Some day a chid who can't walk will be told 'yes' instead of 'no'.

And some day I will not have to look in my children's eyes as they look to me to explain a rule that is blatantly unfair- even a 4 year old can see this.

All of these hopes for some day.

One small hope for today- that the staff we spoke with (make no mistake- we spoke to not just one but two different managers!) will stop for a minute, just one minute, and think about this.  Because really, is this the way IKEA wants to be seen?

Shame on you IKEA.

Two Great Days

Sisters Forever

Ailsa and Zoe on Ailsa's Recital Day

I may have mentioned before, once or twice or a hundred times, that my girls have a special bond.  Ailsa was so excited that Zoe got out hospital last Saturday- the day before Ailsa's recital.  All week Ailsa was worried Zoe would not be able to make it.  We planned on asking for a day pass...or just taking Zoe out of hospital against orders if it came to that!  But it turned out Zoe was at home and we could all enjoy the day to celebrate Ailsa.  Ailsa kept saying, "This is my special day!"  

Grandad, Alison and Lyn joined us for the recital.  Zoe loved all the music, lights and dancing.  Mid-way through we had to stop to give her a morphine dose but as soon as the pain subsided, Zoe kept on dancing!  After the show, we went out to Boston Pizza (Ailsa's choice) for a special lunch/ early dinner.  Ailsa wore her costume the entire time (as well as the following three days to school!)  It was great to have that day as a family.  It was an awesome day!

Speaking of Another Awesome Day from May

When asked where Ailsa wanted to have her birthday party, she looked at me and said, "With Zoe of course!"  So we had a full on party in Zoe's hospital room!  Zoe was not allowed to leave her room but that didn't mean we couldn't throw a party!

 Zoe and Ailsa's clown friend, Ranger stopped by to sing and play.  Ailsa thought "clown thumb" was hilarious.

 Zoe found it hilarious to pull her nose off and laugh at Ailsa.

 Bubbles- always a favourite!

 Someone was excited to give Ailsa her gift...

 ...and someone was SUPER excited that Alison got Ailsa the critters playhouse!

 Ailsa got a big girl bike for her birthday and rode it for the first time in the hospital hallway.  If you look very closely, you can see Zoe signing, "Ailsa" while we cheer her on.

 Ailsa soon mastered the bike and rode it all around the hospital.  We stayed at a local hotel for two nights so Ailsa could be close to Zoe and we could all spend some time as a family.  Family time can be difficult to find sometimes.  Ailsa loved sleeping at the hotel the first night with mommy and the second night with daddy.  And of course swimming in the pool was lots of fun!