Between Big Moments | Apr ’18

It was that awkward period of the year where spring was starting to peak through the seams but the dryness of winter still had a firm grasp on the thermometer. The snow made it hard to go for walks with the wheelchair and our bodies were still acclimated to the +30C humid air of Jamaica which meant lots of time indoors and cozying up.

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I took her swimming to help her body gain some strength and to increase her mobility. She enjoyed it, while I embraced seeing her start to giggle and be more her cheery, sassy self. April 16 was the first day in weeks, almost months, that Janaya hinted towards normalcy again and I couldn’t have been more thankful. We really missed her laugh.

Another item on the list was a sleepover at Fantasyland Hotel in West Edmonton Mall. Arrangements were made, the room was picked and a best friend was chosen! It took her a little bit as she had several close BFFs, and in the end she went with a friend who had the same love for theme park rides as she did. Galaxyland is definitely a must when staying at one of Canada’s largest malls!

All the stops were pulled out. We experienced the Sea Cavern, went to a movie, rode rides at Galaxyland, played mini golf and slept in the coolest igloo room ever (she wanted the space room, but this was the next coolest). We had an amazing 2 days of fun, giggles and enjoyment.

Bowling, more lego and video games made the next week fly as if I blinked and it was gone. I couldn’t decide if I was happy we were keeping Janaya occupied and happy or sad because the farther we get from diagnosis, the less time we have with her… We set little victories in between, markers to look forward to whether it was movie premiers or vacations. Right until the end, we always had something planned. Currently? Planning the next event for May sometime! Long term was to get her to 9 months from diagnosis (the average survival span) and maintain a positive mind frame.

We had a slight scare with headaches while weening Janaya’s dexamethasone down and restoring Cortef. She had a low grade fever on April 23 that almost seen us in emergency and potentially admitted to the Stollery again, this being Janaya’s least favourite option. So pedialyte popsicles, cold clothes and cartoons to the rescue! The next day she was pain free!! This was also the day Janaya would be enrolled into Racing for a Cure founded by the amazing Christiansen family.

April 25 brought the birth of Janaya’s next bucket list item cross off, singing on stage! A friend of mine I met working at Dynamite reached out and, even though it isn’t New York, wanted to help bring her dream to life via the Church she attends, North Point! It was very short notice, with only 6 days to plan and prepare! Janaya was so excited, she practiced her songs she picked out frequently and could not wait to show her moves and talent in front of everyone, my little star! This also meant she needed official merch!

A Pokemon addiction came with some work ahead in order to build the collection she wanted, to be dubbed a real life Pokemon Master. It also meant driving to Calgary if there was a comic book expo happening! April 27th took us 3 hours away from home on a mission to hunt and retrieve different stuffed animals to add to her ever expanding collection. She decided to wear an Eevee costume my mother had made her a couple years back for Halloween. She still looked so stinking cute in it!

Along the journey through aisle upon aisle of any anime lovers heaven, we found a mask shop that had some really spectacular, realistic replicas. Perusing the options available, she became face to face with the mask of her dreams… Chucky. She wanted it SO bad, she begged and begged but dropping $90 on a mask just wasn’t really something we had budgeted for. I told Janaya to put it back and we would think about it and see if she still really wanted it before we left. About 20 minutes of aisle gazing later, we find ourselves in Pokemon heaven! SO many decisions, a limit of 4 being the only thing stopping her from just grabbing a bag and shoving stuffies in it. After some time and a rather hectic argument with herself, she decided on Litten, Venusaur, Helioptile and Litleo as well as some card booster packs. Did I mention Team Rocket was there?!

Once she was satisfied with her Pokemon choices, we headed back to see the Chucky mask as Janaya hadn’t stopped talking about the horrific thing since we left the booth. She was smitten, and a mother desperate to bring her baby joy decided to oblige. Arriving back to retrieve her new found must-have, we were shocked not to see it there anymore! Janaya began to tear up, preparing for a full fledged bawl with an assumed retort along the lines of ‘we should have gotten it!’. Just seconds after finding out the devastation, the owner of the booth hurries over and exclaims that she set the mask aside in hopes we would come back as she wanted to donate it to Janaya! She began kicking her legs and waving her arms in pure joy as this wonderful lady hands Janaya her new mask and tells her to enjoy it, and they hug. Enjoy it she has, as this mask was never far away for the rest of Janaya’s days. All that excitement mixed with not a lot of fluids led to a minor headache, and with that we headed out of the expo and began our journey back home to Beaumont.

Mommy snuggles came next, naturally.

To end off the most amazing month we had experienced since diagnosis, she was crafted an incredible real-life replica of one of her favourite 1st Generation Pokemon, Aerodactyl! A famous artist from London, England, named Joshua Dunlop is a concept artist and has been working on creating 1st generation Pokemon envisioned in real-life formatting. Janaya and I had followed him for some time and reached out hoping he would create this work for Janaya and he happily obliged! Janaya was so in love with the end result. Thanks again Josh ♥.

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April brought so many wonderful memories, and from the look of things it was only going to get better from there. Until next time, take care and stay safe ♥♥.

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