CNIB Lake Joe: Choose Your Own Adventure

Photo description: Ollie wears a yellow CNIB Lake Joe t-shirt and a mask while holding his white cane and Hope's leash while Hope sits at his feet wearing her CNIB Buddy Dog vest on the boardwalk

Summer sleep-away camp camp is a childhood rite of passage for so many. It's one that Ollie has been looking forward to for 3 years since his older sister was able to go to sleep away camp at age 10. None of us anticipated that over the past two years even this experience would be sacrificed (at least for Abby) due to cancer and COVID-19.

Then when Ollie got cancer and went blind it seemed like another thing he'd likely never experience. Although there are camps for kids in active- and post- cancer treatment (Camp Ooch and Camp Trillium), we figured sending our blind son to a camp that was not equipped to accommodate his vision loss would be too dangerous and frustrating for him.

So imagine our excitement when we heard about CNIB Lake Joe! This is a fully accessible camp for people with vision loss in Muskoka. Not only is it for kids with vision loss, but also for adults and families of those with vision loss. 

Anyone who has ever attended has said that CNIB Lake Joe is a magical place. Days before we went for the second week of Holiday camp, we watched the AMI-TV special documentary about the camp called Ripples: CNIB Lake Joe. It certainly seemed to hold magic for many. After that Ollie was counting the hours until we went.

Photo description: Ollie, Hope and Dawn ride in the backseat of the van with Abby and Mario in front en route to CNIB Lake Joe in Muskoka.

Typically they run 8 weeks of camp each year (3 for children/youth, 3 for adults and 2 for families). Given COVID in this, their 60th anniversary year, they decided it was an opportunity to go back to their original roots and run three weeks of holiday weeks for families. Billed as "Choose your own adventure" weeks with incredible COVID protocols it seemed an excellent opportunity for us to learn about the camp, what Ollie can do with vision loss and what we can do to help him to continue to do fun things with our family.

Photo description: The CNIB Lake Joe Welcome Centre with Lake Joseph in the background.

During week 1 they welcomed more than 40 families. When I heard this it made me a bit nervous. However, given everyone had to have a rapid COVID test upon arrival, daily health declarations, contact tracing at each activity, distancing, masking and hand sanitizing, we felt that it would be worth the risk and simply hoped that our week would be a little less busy. Fortunately our week had only 8 families registered! It certainly felt like the universe (God) was watching out for us and making it possible for us to have a safe week together after all we've been through the past two years.

Photo description: Two cabins at Lake Joe facing the lake with grass between them.

We arrived Monday late afternoon after a relatively uneventful 5 hour drive. We drove through Algonquin Park, which was a first for the kids. Hope was a great traveler, too.

The weather forecast had predicted a lot of rain and thunderstorms so we went equipped for bad weather with many hopes and prayers for at least some good weather. In the end we completely lucked out in that we had a few showers and storms, but those were short-lived. After a short shower or thunderstorm the sun would come out and we'd have a brilliant day or we'd have an amazing day and it would rain at night! Overall we had beautiful warm days that were perfect to be outdoors and enjoying water sports!

Photo description: Signage beside our room in Cabin K (also known as King Maples) with the room number in large letters and in Braille. Qwerty codes are also used for low vision people to use their phones to identify where they are.

The camp has an incredible design and layout to make it completely accessible and as safe as possible. The Welcome Centre and Dining Hall are basically central to the camp and all buildings and activities are joined by either a boardwalk with railings or cement walkways with railings or fences where needed to ensure safety where there is terrain of varied heights as well as along the water/beach. 

Half of the cabins are lakeside, and all are connected to each other and main buildings via a continuous accessible boardwalk and railing. Cabins are all named and laid out according to the alphabet to make them easier to find. Braille signage is everywhere for blind campers and large writing for low vision campers. The layout was so innovative as far as accessibility is concerned that when they did a major renovation of the camp in the early 2000s, they kept the same layout and simply replaced the old wooden buildings.

Photo description: A screened in porch at the end of a cabin at CNIB Lake Joe.

At the end of each cabin is a porch. A great place to gather (during non-COVID times) and to hang your wet clothes to dry every night! In every porch there is a tactile map/model of the camp.

The rooms are all a bit different (we had two the same with an adjoining door), but remind one of a university dorm room, except the mattresses are more comfortable and each has its own bathroom with a shower.

Photo description: A Lake Joe room with twin beds with duvets and two small chests of drawers. There is an adjoining door that can be used to connect two rooms.

The entire facility is way more modern and upscale than any camp I've ever attended. The cabins were rebuilt in the early 2000s and the main buildings have been upgraded over the past few years thanks to the generosity of donors and granting organizations. In fact, Lake Joseph is best known for being the summer playground of the Canadian rich and famous (a few of those with "cottages" on the Lake include Kevin O'Leary, Richard Ivey, Cindy Crawford, Kenny G and formerly Ann Murray) and many of Lake Joseph's summer occupants contribute to CNIB Lake Joe.

 Photo description: Mason wears a mask while holding a white cane and holding the leash as Buddy Dog Hope sits at his feet.Ollie wears a mask holding his white cane and resting a hand in Hope's head as they stand in front of the fence along the swim beach at sunset.

Now let's get to the fun stuff...what we actually did all week! I should preface this by telling you that of the eight families there last week, only two had kids. Ours and another family with an 11 year old boy named Mason who brought along his mom, grandma and baby sister. Mason was a super sweet and polite young man and we all enjoyed getting to know him and his family.

All campers were lovely. It was an interesting blend of our two families with kids, a husband and wife, a mother and daughter, a few singles and a single with caregiver. And the camper to staff ratio was incredible since there were so many staff and so few campers. At all times the kids had the undivided attention of multiple lifeguards and counselors as they did all activities, making it a super easy vacation for the parents! Of course, normally the camper to staff ratio is pretty good from what I understand.

Photo description: Abby holds Ollie's hand as they wade into the water at the swimming beach while accompanied by a lifeguard on their way to do a swim test. A second lifeguard sits in a tower chair in the distance while Mario wades in nearby.

Naturally the boys gravitated to each other and formed a lovely friendship over the course of the week, inspiring each other to try new things.  CNIB even asked us if they could tell Ollie and Mason's camp story as a precursor to a big fundraiser for the camp that they were having at the end of the week. You can read a bit about this dynamic duo here.You can also learn more about Mason and his Buddy Dog Queenie here.

Photo description: Mario and Abby in a paddle boat on the lake.

Like most summer camps Lake Joe has lots of opportunity to spend time on the water. With their beautiful sandy beach and sand bottom swimming areas, everyone enjoys swimming and jumping off of the lillypad. The kids swam every morning and often in the afternoon, too. 

Photo description: Ollie tries a single kayak for the first time as Mason kayaks with two lifeguards nearby in the background.

The kids were not bored a single moment that we were there and we all unplugged from our cell phones to truly enjoy every moment (other than me taking these photos of course as I would feel naked now without a camera to document our family's incredible story).

Photo description: Mason and Ollie paddle on the lake in a tandem canoe with a Lifeguard nearby.

Each day there were a variety of activities available to try:

- Peddle boats

- Kayaks

- Canoes

- Stand up paddle boards

- Sailing

- Pontoon Boat rides

-Tubing

- Waterslide

- Rock climbing

- Archery

- Lawn games

- Tandem Biking

- Shuffleboard

- Basketball 

- Arts and crafts (painting, pottery, tie-dye, etc.)

 Photo description: Dawn and Ollie sit astride a red tandem bike while wearing bike helmets at CNIB Lake Joe.

The REC Centre is a beautiful building with arts and crafts, an incredible hang out space with a comfortable sofa,  ton of beautiful instruments for the kids to just try and jam on and a sun porch with a pottery kiln and a special table game for blind and low vision people called Power Showdown. 

 Photo description: The REC Centre was a bright oasis of cool air and calm decor with its wooden ceilings, large sectional sofa in front of a tv surrounded by musical instruments on one half of the room and craft tables, supplies and cabinets on the other half of the room.

Power Showdown was part table hockey, part ping pong with a ball filled with beads for sound so the blind or low vision person can hear where the ball is. Ollie was great at it and loved to challenge anyone willing!

 

 Photo description: Ollie and a CNIB Lake Joe staff hold wooden paddles and play Power Showdown on a large yellow table with a raised edge and a wooden partition in the middle. The partition is high enough to ensure people will not be hit in the face with a ball and has an opening under it for the ball to pass through. There are nets at either end of the table.

In addition, the climbing wall was new this year and they are just completing a new artificial soccer turf and the first fully accessible mini golf course in Canada which we can't wait to try next summer when we go again! 

 Photo description: Ollie wearing a helmet and harness on the new climbing wall at CNIB Lake Joe with cabins in the distance.

Photo description: Ollie on the lake wearing a life jacket while standing on a stand up paddle board and holding a paddle.

The general philosophy at CNIB Lake Joe is simply that blind and low vision people should try everything and be encouraged to do it independently with assistance as needed. They quite literally put these kids in a kayak, on a stand-up paddle board or on a sailing catamaran and push them out with a bit of instruction. Lifeguards are always on hand nearby. When they send you out canoeing or sailing there are always two staff in a little motor boat nearby in case you need assistance or a tow in. 

Photo description: Ollie paddles at the front of a canoe on the lake with Mason riding in the middle and Dawn not pictured paddling in the back. In the distance you can see CNIB staff in a small motor boat monitoring those canoeing and sailing.

Ollie literally tried everything, often encouraged by Mason's bravery to try an activity, too. It was truly the first time in two years that Ollie was excited to be more independent and do things with little assistance from mom and dad. 

In particular, Ollie was really good at stand up paddle board and kayaking, which came as a surprise as I imagined his balance would be a challenge with the blindness. I should have known better than to underestimate my incredible boy.

Photo description: Dawn, Abby, Mario and Ollie get ready to go sailing in a catamaran boat on Lake Joe. 

Ollie's appetite was great all week and he actually tried a variety of new foods. Typically at home he still gravitates to the things that he knows taste good despite the changes to his taste buds from chemo, radiation and drugs. His willingness to try new things at camp was partly inspired by the knowledge that if he wanted to go to kids camp without us next summer, he'd need to learn to eat whatever was being provided in the dining hall. 

Photo description: Mario, Ollie, Abby and Dawn in the Dining Hall at  breakfast. Ollie was thrilled to feel that our table sign had Braille that read our last names and table number. 

While we brought a cooler with snacks and food just in case he wouldn't eat much that was provided, we assured him that going to camp like a big kid means no mommy and daddy cooler comes with you! He was also so active every day that he was hungry and way more willing to try new foods. The tables were spaced way more than 6 feet away from each other and we took many meals outside to enjoy at a picnic table, too.

Photo description: Ollie and Mario at the tiller while sailing in a catamaran boat on Lake Joe.

Sailing was pretty much the only activity that Ollie wasn't thrilled with, although the rest of us enjoyed it and laughed a lot at Ollie's regular exclamations that we were "lost at sea" and would never get back to shore. I'm afraid the pace was a little too slow for our active boy who prefers the thrill of fast moving activities. It was blissful for the parents despite the complaints, though!

Photo description: Ollie sits atop the waterslide on the dock at the boat house waiting for his turn while lifeguards and CNIB staff look on.

Even when he was nervous to try something like the water slide, he would dig deep into his incredible reserves of bravery and do it anyways. As always after doing the scariest things he declared the fear conquered and went down the slide many more times and a second day after that, too. He always teaches us so much about finding inner stores of courage when we are uncertain if we can do something that scares us.

 Photo description: Monique Pilkington, Executive Director of CNIB Lake Joe, CNIB Buddy Dog Hope, Ollie and Mason meet in front of the lake. Monique holds Hope's leash while Ollie and Mason hold their white canes. 

The Executive Director, Monique Pilkington happened to be there at the end of our week for a CNIB Lake Joe fundraiser that was happening the day we left. She had heard about Ollie, Hope and Mason and came over to meet them and talk to them about what a great week they had. She thanked us all for allowing them to share the boys' story to assist in promoting awareness and fundraising. It is always our pleasure to encourage others to help us to give back to such incredible organizations that help families like ours. In the 18 months since Ollie went blind, the CNIB has been a true light through the literal and proverbial darkness that we've all navigated to get to a point of acceptance of Ollie's blindness and to help us learn how exceptional and capable he is.

Photo description: Mario, CNIB Buddy Dog Hope and Abby all wear life jackets on the pontoon boat ride on Lake Joe. Hope borrowed CNIB Ambassador Dog Willow's life jacket and was excellent on the ride!

Considering that Hope has body sensitivity issues and is a water dog who doesn't really like to get wet, she wore the life jacket without complaint, was completely calm during the boat rides we took and liked to hang out near the waterfront even if she never went in the water herself. She was excellent all week, attending meals and events with us and patiently lying at Ollie's feet as we ate, did activities or talked to people. This was our first

 real opportunity taking her out in public given COVID and it affirmed that her guide dog training remains ingrained in her even if she is not an official guide dog. Monique told us she thought Hope was the first Buddy Dog to attend the camp. Given how much Hope impressed her and others, we know she's helped to confirm that allowing all CNIB dogs at camp is a good idea. Ollie also walked Ambassador Dog Willow on leash while we were there and she remembered her training well, too, easily responding to his commands even though she did not know him. Both the Buddy Dog Program and the Ambassador Dog Program are run by the wonderful Miriam Mas who gave us our Hope.

Photo description: Ollie and Dawn wear life jackets and smile wide on the pontoon boat ride with the perfectly blue lake and sky and beautiful green forests in the background.

I think my personal favourite activity was tubing. The tube was a far cry from the tiny round tubes of my youth that we'd easily bounce off of into the cold water and have to try to climb back on when the boat came back to pick you up. This was riding on a bouncy sofa. The kids and I went first and I cannot remember the last time I laughed that hard. There were big belly laughs from all of us and regular screams as we bounced around. Abby as the lightest bounced highest, while the mama bear in me still worried about Ollie's reduced bone density in his back and asked him began laughs if he was okay. I wouldn't let them go as fastbas they really wanted to out of concern for Ollie's osteoporosis and wanting to ensure he didn't bounce too much or too hard. 

 Photo description: Mario, Ollie and Abby get ready for tubing on a huge colorful tube that looks like a large chaise sofa for 3 with many handles, while CNIB Lake Joe staff and lifeguard assist.

My kids are definitely more like mama on rides and like the excitement and adrenaline. Their ride with daddy was even tamer as he's not a big fan of rides and was nursing a sore leg that he didn't want to exacerbate.

 Photo description: Dawn, Ollie and Abby are pulled in the tube behind the boat as CNIB Lake Joe staff drive the boat and spot. 

Overall we had a blast at Lake Joe. Even the sceptical teenager who had texted friends on Monday night to "rescue" her was by Wednesday telling me how much fun she was having and asking about whether she could one day be a counselor in training and/or a counselor there. The coolest thing was most staff at the camp seemed to have some personal connection to a blind or low vision person or were one themselves. Some were children or siblings of someone with vision loss and had come as kids themselves, just like Abby. This seems to me a beautiful way to teach future generations about accessibility issues and accommodation and to help them to teach others about how to handle vision loss.

Photo description: Mason, CNIB Buddy Dog Hope, Ollie and CNIB Ambassador Dog Willow have a doggy "hangout" date in the dog run at CNIB Lake Joe. Guide Dog Abby and camper/her handler Julia also participated, but are not pictured.

 Photo description: Our Abby and Abby the Guide Dog sitting in the grass waiting for Abby the Guide Dog's handler Julia to finish rock climbing.

I loved the open and honest conversations with other campers about their vision loss stories and they gave me many ideas and tips to further help Ollie. They were touched by Ollie's story and so positive about how well he and all of us were adapting to his new world considering how new we were to it all. There was a feeling of  camaraderie and a lack of judgement among this group. They cheered each other on and were so kind to each other. That's the thing I notice most in this community - empathy and compassion. A feeling that we're all in this together. That they treat each other as they want to be treated. Like the accomplished, capable and "normal" people that they are. Like Ollie I honestly felt at home among this community, the same way that I now feel kinship among other cancer and transplant families. Ultimately Maslow was right and we all just want to belong.

Photo description: An exhausted CNIB Buddy Dog Hope sleeps on Mario's shoes on the floor in our room at CNIB Lake Joe, too tired to move after a busy day of fun.

These are our people. We are blessed to have many people on this ongoing journey with us and are proud to count the CNIB Lake Joe people among them as well. We cannot wait (all 4 of us agreed) to go back to CNIB Lake Joe next summer and are so grateful to have had this opportunity during their 60th anniversary summer.

Transplant Anniversary Highs and Lows

Photo description: Abby and Ollie stand under a marquee sign pointing up at the Gladstone Theatre that reads, "Happy 1st Birthday Post Stem Cell Transplant Ollie! Happy Hero Day Abby!"

On July 20, 2021, we celebrated Ollie's re-birthday/ one year anniversary of stem cell transplant and Abby's Hero Day (part 2 as we celebrated the one year anniversary of her actual stem cell donation back in March as part 1 given the relapse that Ollie had in between her donation and actually getting the transplant in 2020). 

It was a long anticipated day by Ollie and I and one that Mario and Abby preferred to mark more quietly. It seems as we go forward, Mario and Abby want to get back to "normal" (whatever that is - especially in the era of COVID-19), while Ollie and I are so irrevocably altered by it all that we can no longer just go back to who we were before. Perhaps this is because it's Ollie and I who were the every day participants in cancer treatment and stem cell transplant and neither of us got to live in our regular daily life over the past two years. Whereas Mario and Abby still went to work and school (albeit online since March 2020) and carried on with their usual day to day activities most days. Obviously both have been affected by everything, but given Abby is very much like her daddy in some ways, both appear to be stoic, yet have big emotions brewing just beneath the surface.

Abby did let me rent the marquee at the Gladstone Theatre (a great way to mark the special  occasion and to help out a local theatre company that has struggled like most during COVID) and agreed to pose for a photo with Ollie to help us promote our blood donation clinic that week, but felt that was enough for her.

 Photo description: A masked Ollie pushes the cart at Toys R Us with new Beyblade sets. 

Earlier that week Ollie had his last monthly check up and bloodwork at the CHEO Medical Day Unit (MDU) post transplant clinic. The doctor confirmed that all is well, he could stop taking the anti-viral he's been on for a year and is cleared to go back to school if COVID numbers stay low. He still cannot have the vaccines for chicken pox or measles, mumps and rubella (MMR) because they are live vaccines and he cannot have live vaccines while he remains on the Lorlatinib ALK-Inhibitor drug. So he has a medical exemption for those until he finishes his drug and if he should be exposed to any of these, there is a treatment plan if we act fast enough. Honestly it's all stressful, but many cancer kids faced same pre-COVID. And he desperately wants to go back to school and be normal. 

I asked about the protocol for fever going forward and we're now done having to immediately go to hospital for fever! So normal parenting of a kid with run of the mill day to day  illness now. It's mind blowing that one day we need to go to ER for any fever or sign of even a cold and and the next we don't. Of course there's also COVID to worry about and there is heightened risk for stem cell transplant recipients, so I was clearly still uncertain. Dr. Abbott reminded me that the team is still there for us and if we have any concerns we can call or email anytime. From this point forward he'll have checkups and bloodwork every 3 months, but does have certain other appointments in between. 

As a celebration Ollie asked me if we could do something like go to Toys R Us. I think he meant for curbside pickup, but given it was a Monday afternoon and not likely to be busy, I took him inside to pick his own special prizes for this milestone. This was his first time in a retail store in 20 months and he was almost vibrating with the thrill of it. Funny because pre-cancer he hated shopping with me. He touched nothing before I wiped it down and we stayed far away from the free other shoppers just in case, but it was enough normal for him.

Photo description: Dawn sits in a lounge chair connected to a machine while she donates blood at Canadian Blood Services on July 20, 2020 in honour of Ollie one year anniversary of his stem cell transplant and Abby's Hero Day.

Ollie didn't want to do anything different during the day, but had hoped to have some family friends over for cake on the deck. Unfortunately rainy weather put a damper on those plans, so we celebrated with just us four the night of the anniversary with Ollie's Pizzas from Gabriel Pizza and cupcakes and later in the week had cake with some friends, too. Naturally he got the latest Beyblades Stadium set as a re-birthday present! 

The actual day itself was quite emotional for me. It's taken me these last few weeks to unpack all that I have been feeling recently, hence the delay in writing this piece which I started, but needed to leave because I didn't know what to write to explain it. The fear and the relief that I felt on that day last year was not altogether different than what I felt on the same day this year. More relief and less fear this year, but always the underlying worry of what might be next for our incredible boy to face. 

I did a pre-recorded interview with Alan Neal from CBC Radio's All in a Day and Jan Grant from Canadian Blood Services (who has been amazingly supportive of our donor clinic and with whom I have a lot in common). Even doing the interview was more emotional for me than usual. As it happens we'd booked the donor clinic months ago, but suddenly the need for blood and blood products has risen dramatically as non-emergency surgeries and such have been re-started post lockdowns. So it was timely to be doing this and I found myself remembering being in the phone with the transplant doctors in March 2020 as COVID began and them telling me they weren't sure that there would even be enough blood available if Ollie needed it. To which I replied that he was the same blood type as I was and they could just hook me up and give every drop of my blood to my son to save him. The things you remember sometimes are unbelievable.

I had booked to donate blood that day at 5 pm with a friend, which is why I had to pre-record the interview. The interview aired as I was driving to make my donation and so many people in the clinic told me they heard it on the way over, too and it made them feel great to be donating at that time for people like Ollie. As it turned out a handful of my friends who had joined our team were there at the same time donating. I was super touched by their generosity and so thrilled to see Marie- France, Connie, Jenn and Jamie there! 

Photo description: Ollie wears a Canadian Blood Services hat and sunglasses while holding a Canadian Blood Services/Hockey Gives Blood mini hockey stick and puck on his one year anniversary of his stem cell transplant.

The staff at Canadian Blood Services were wonderful and sent me home with a big bag of treats and Canadian Blood Services merchandise for Ollie and Abby.

Since then I've had messages from a bunch of folks saying they donated in Ollie and Abby's honour recently and a few of them were even first time donors! My friend Jenn made her first allowable donation 5 years post breast cancer for Ollie! These were all high points of the emotional roller coaster over the past few weeks. I have the best people in my life!

Photo description: Ollie eats a piece of his #OlliesPizza from Gabriel Pizza to celebrate his transplant anniversary.

My emotions were also yo-yo-ing a lot over the past few weeks as I attended the online funeral of an old friend's husband two days before our rampant anniversary. My dear friend had been one of the first to reach out to me when we shared the news that Ollie had been diagnosed. I've known her since high school and she, her husband and myself were all in Ottawa for university. Her husband was battling cancer and had been for a few years by the time Ollie started his journey. She had a lot of advice to survive it all and throughout the past two years we've been in touch to update each other on significant developments. She'd told me at the beginning of the month that he was palliative. They have two children close in age to Abby. That triggered my sorrow. 

It's not that I'm close to her husband - I actually haven't seen him since university. It's how cancer robs a family. How every member suffers and is deprived of their joy for so long. How those kids had to watch their dad deteriorate and lose him. How my dear friend lost her partner (first emotionally/mentally due to the stress of it all and then physically, too) and spent almost 5 years of her life trying to save her family.

Photo description: Ollie smiles and gives a thumbs up white sitting at the table. A vanilla cupcake with sprinkles and a lit candle sits in front of him to celebrate his transplant anniversary.

Then the week after Ollie's anniversary, I heard from a friend who used to take care of my grandma when she lived at a retirement home. She told me she was looking at photos of that time and found some of Grandma that she thought I'd like. Through the course of our chat, it came out that she was going through the old photos for the mother of her former colleague and our mutual friend who had passed away suddenly of cancer in February. 

This woman was among the kindest people I knew. We became good friends over the years since she took care of my Grandma. She was at my Grandma's funeral and hugged me so tight and told me so many beautiful stories about her and how much she loved her. When she found out that Ollie was sick she sent me beautiful messages of encouragement and told me she knew my Grandma was in heaven lobbying God to let me keep my boy and how proud she'd be of me for the mother I was through such difficulty. She sent a superhero package with gifts to my kids last year just before transplant. 

I hadn't heard from her since late fall, but hadn't thought anything about it because many people who had been following us online grew quieter as things became more stable for us over the past year. I was honestly gutted to hear that she'd been diagnosed on Christmas Eve with ovarian cancer and passed away 7 weeks later. Few people knew she was ill. When I heard the news all these months later I was devastated. I was sorrowful and angry while begging God to help me to understand why innocent and kind people must suffer this way. Why do families have to go through this?!

Photo description: Ollie sits at the table with Mario after blowing out candles on his cake to celebrate his one year anniversary of transplant.

I'm doing better now, but I wasn't alright for a couple of weeks. My therapist says that anger is a normal part of the healing process after the trauma of cancer and my usual positivity and proactive nature will keep coming back, but it's important to feel these big feelings. 

Anger is my least favourite emotion and makes me feel out of control. I hate that feeling and yet a good part of the last two years I have felt that way...tightly wound with my sanity ready to snap at any point without warning. I've talked a lot recently to other cancer moms and know this is all "normal" for us, but still hard for each and every one of us nearly every day. 

Photo description: Ollie sits at the table in front of a Braille version of the game Scrabble and feels a Braille Scrabble tile for the first time.

There have been good days and high points interspersed among my bad days. The interview I did for Healthing.ca finally got posted. This was timely as it promotes donation of all blood products and these are desperately needed right now as surgeries and procedures resume after lockdowns.

We also saw the endocrinologist and Ollie's bone density and hypothyroidism issues are improving (slowly). We have scans again in about 6 months. In the meantime he stays on the hypothyroidism med, doesn't need the osteoporosis injections and cannot use trampolines or go horseback riding.

Photo description: Dawn, Ollie and Mario sit in a darkened movie theatre wearing masks while Ollie holds a huge bag of popcorn.

Another highlight was taking Ollie to the movies. Ollie was having cabin fever and begged me to see if we could safely go to the movies. We haven't been in two years since just before he got sick. 

I checked out COVID protocols and was happy to see I could book seats and everything around them would be blocked off automatically. Also figured Sunday night for a kids movie (the new Boss Baby sequel movie) wasn't likely to be a big draw. 

I discovered that most new movies now have audio description (marked as DS or Descriptive Service in movie ads) thanks to a lawsuit in the US where blind people sued the studios forcing them all to start providing audio description that narrates the details and context a blind person needs to understand what's happening on screen. Not only do studios have to provide audio description tracks, but theatres over the past six years have been equipped to have blind patrons use a special headphone and transmitter to provide the audio description in every theatre for free.

Photo description: Dawn holds a small black transmitter and headphones in her hand that read, "Fidelio". This enables bind and low vision people to use the descriptive audio service in movie theatres.

We went to the 7 pm movie with Ollie. There were three families sitting rows apart in the entire theatre. We bought a gigantic popcorn (we did once order movie popcorn to our condo in Toronto as a treat during transplant there!). We kicked back in the recliner seats. The movie started. The boys were enraptured. 

I sat in the dark and silently cried for the first 5 minutes at the blissful normalcy (despite masks) of it and with the joy of knowing that there is a technology that will allow my blind son some enjoyment of a normal activity. 

My heart was full and I enjoyed that silly overpriced movie more than any other I've ever watched. Grateful. Thank you science and innovation.

Photo description: Ollie stands in the grass at the dog park while commanding Buddy Dogs Hope (foreground) and June (background).

One afternoon we had a great meet-up with fellow CNIB Buddy Dog duo Connor and June at the Country Canines Playpark.The boys enjoyed the hour in a private dog run to keep them safe from COVID and to enable their dogs to run freely and have fun safely. I am always impressed by the CNIB Buddy Dog program and the fact that although these dogs didn't make it into the guide dog program, they are so well-behaved and responsive to commands even given by kids!

Photo description: Abby sits on the sofa with legs folded wearing a backwards ball cap and sitting beside Chewbacca the cat and CNIB Buddy Dog Hope.

Ollie was in his school's playground about a week ago getting re-familiarized with everything now that he's blind and hasn't been there in almost two years due to cancer, stem cell transplant and COVID-19. 

He walked every inch of the yard with his white cane to remember every tree, bench, basketball poll, soccer goalpost, door to the school and playground. At times it was frustrating for him to be back in a place he once felt so comfortable in and now needs to re-learn. 

Lots of patience from his vision loss consultant and many mama hugs later he got it done and even took a swing on the monkey bars. He was delighted to see he'd grown so much in two years that he could even reach up and grab them from ground level!

Photo description: A masked Ollie stands on a raised platform reaching for the monkey bars in front of him in his school's playground.

So ultimately despite the sadness and anger, most of our days were filled with happiness and excitement. My cup really is always at least half full.