Dawn and Déjà vu

Life is a perpetual cycle of love and loss. Even when you gain one thing that you want or need, you often lose another. Or perhaps you first lose and then gain? The proverbial chicken and egg debate.

I have been thinking about this over the past week as we have settled into our newest normal back at home. Examples of this abound. We've secured our son's immediate future and stopped the lymphoma, yet had to surrender his innocence. We've made it back home to get the kids back to learning in school, but forfeited the ability to physically go to school, having to choose online lessons as much because of his stem cell transplant as because of COVID. We've attained the right to rest and be happy that we saved him, but yielded our control of our fight or flight response and are often unable to enjoy what should be a joyous time.

We safeguarded our son's life and had to let go of our cat Minou's. Admittedly it's no contest between our child and our cat (Mom if you're reading this, take note that you should always choose your children over your cats! ;-)), especially since he's 8 with so much life to live yet and she was 18 with little life left in her (besides the whole I carried him in my womb thing). Nevertheless, it was hard to have to take her to the vet to say goodbye in the first week we were back. She had hung on long enough for him to get well. Gain one healthy loved one, lose one sick loved one. 

Abby insisted on coming and I debated if this was the right thing to do as it's such a hard process to go through. In typical Abby fashion she wouldn't take no for an answer when she believed in something and once again she stunned me with her maturity and strength. I forget she's only 12 sometimes...and then her "tweenage" freak outs happen and I remember! 😜

Ollie was sad, but accepted her death with more pragmatism than I imagined he would. He rationalized that she'd had a great life of health and love with our family, had me as her human mama for 17 years (making her more than 90 years old in equivalent person time) and that she shouldn't suffer if she was ill. Minou was a pretty grumpy cat, but always had a special affinity with him for reasons unknown until now, I guess.

We're now spending a lot of time loving up our two year old Chewbacca, who seems depressed that he is now alone. We're also hoping that by spring he'll have a new Buddy Dog friend to keep him company. 

Over the last year, Mario, Abby and I have gained an unimaginable understanding of what's really important in life, while losing some of our physical and mental well-being as we poured every ounce of energy and strength that we had into fighting lymphoma and saving our Ollie. None of us has had a doctor, dentist, chiropractic, physiotherapy, massage therapy or any other kind of health appointment in over a year. I am the queen of planning and scheduling normally, but we had no time and no bandwidth for anything but cancer. 

So now we're scheduling a years worth of check ups in a short period of time. Abby's struggled with stomach issues over the last month or so (believed by her pediatrician to be anxiety, but then this is one of the same pediatricians who was certain Ollie's bump was a bacterial infection that just needed antibiotics, so how does one trust this doctor again?!). Early Saturday morning she was having significant pains in her lower right abdomen, so worried about appendicitis, I took her to CHEO at 3 am. It really is the witching hour and I cannot count the number of nights in the past year that I have been up at 3 am comforting a sick kid. 

The ER was dead and when I told them that Abby's brother was one of their oncology patients who had just had a stem cell transplant, they whipped us into an oncology isolation room immediately. Membership has its privileges. 😩

Soon Nurse Steph came along! She's a floater whom we had several times on the oncology ward. She said she had seen the last name on the board and figured it had to be his sister and had been wondering why they hadn't seen Ollie in months. She was very happy to learn how well Ollie was doing. 

Then we waited 4.5 hours to see a doctor. Sigh. Those hours were long and uncomfortable for both of us. Abby slept a bit and tossed and turned. Yet, it felt kind of normal for me at least. I stood and watched the sun come up over the CHEO parking lot and remembered facing the same parking lot at dawn while standing at a window two floors above in ICU in January. This was after he went blind from lymphoma in his brain and spine and I desperately prayed at that window during sunrise for him to live. This time I spent the time praying it would be something simple for Abby and reassuring myself with logic that the odds of both of them having something so terrible happen to them in the same year were almost impossible. 

About 7:30 am the doctor came in and did a quick exam. He didn't think it was serious, but given the location of the pain, he ordered an ultrasound just in case. Naturally, as that's exactly what Ollie's first test at CHEO was, too. Breathe...settle down PTSD...I'm okay...I'm okay... she's okay...she'll be okay. And wouldn't you know it, same technician as Ollie had! 😄 Maybe I was being tested or some powerful entity was having a little laugh at my expense. I prefer to think that God was showing me that similar situations do not necessarily have the same endings and maybe even that I could do it all again if I had to. One step and one test at a time. Although I sincerely and selfishly hope I never have to again.

The ultrasound thankfully looked clear and we were sent home with medicine for a minor ailment that is easily fixed (Abby asked me not to share what it is, but is feeling better). Abby got a little taste of what her brother had gone through countless times over the past year and how scary every moment can be when you don't know what may happen to you. Ollie also felt incredibly empathetic and very knowledgeable when she came home and they compared notes. 

Overall he's been feeling really good and wants to do more and help around the house. So he helps with folding laundry and prepping dinner (salad is his specialty! LOL). Mainly he just wants to be included and engaged.

So it was kismet that he got invited to a friend's socially distanced birthday party in the park last weekend. The first one he's been to in a year. I wasn't sure he'd have the stamina for it, but of course he completely proved me wrong again. 

He wore a mask the entire time (as did I) and anytime kids and parents came to talk to him, they respectfully wore theirs even though we were outdoors. I really love our village! 

He even begged to get up and play hockey with the rest of the boys. We didn't have a helmet and I was worried about his balance and him getting knocked over, so insisted I stay with him and we play near the sidelines. The kids and the dads playing were so respectful and kind to let Ollie play a bit while being careful not to get too close to him for his health and so as not to cause him to fall. He played a bit and then got mad at me for being there and sat down on the bench. Later at home he told me my being with him made him question his confidence. 😭 Man it's hard to learn how to do everything differently.

Thankfully, he still had a great time and a few of his friends took turns coming over and talking to him about Beyblades and asking about his collection and for his advice on what they should buy next. I wanted to squeeze them and their parents all so hard with gratitude for how awesome and kind these boys are.

Also amazing and generous is their principal, Roisin who with her family and her team has been with us every step of this journey. She brought by her son's outgrown guitar for Ollie on Sunday and he was thrilled to have his very own.

Another thoughtful friend and classmate thought of him one day when he saw Beyblade Micros in a store and couldn't wait to get them for Ollie! He and his dad dropped them by on the weekend and we had a blast playing with what we've dubbed the "Baby Beyblade" set. Ollie knew his friend needed a Garmadon mini figure for his Ninjago Lego set and was so pleased that he had a extra to give him, too. It all makes me so happy to see the cycle of kindness that Ollie has inspired and continues to perpetuate.

On Monday we were at CHEO all day because Ollie had another intravenous immunoglobulin (IVIG) infusion. As I've explained before, this is a blood product taken from the blood of many donors where they extract certain antibodies so that they can be given to immuno-compromised patients like Ollie to boost his immune system as it develops. Still grateful to each and every donor that makes this possible, each and every time he gets a blood product. Blood and blood products have repeatedly saved his life. 

With Thanksgiving coming soon, we would love and appreciate it if any of you are able to go and give blood in the coming weeks. I just made another appointment myself for Thanksgiving weekend to both pay it forward for Ollie and in memory of my dear Grandpa who died of cancer thirty years ago this Thanksgiving weekend. If you download the app, it takes mere moments to pick and book a date and time at your preferred location. For more information, visit Canadian Blood Services.

Monday's day at CHEO which otherwise went so well ended rather badly when the VAT team arrived to try to take his PICC (central) line out. Ollie had decided to have it removed and to have a weekly needle for bloodwork instead to avoid the awful and painful dressing change and the discomfort of the line and made it difficult to bathe and do everyday things without stress. He had explained to me that the fear of a "poke" was the worst part since it didn't really hurt, but just pinched, whereas the dressing change with his sensitive skin always hurt a lot. Fear was easier to handle than pain he told me. The doctors thought that was very perceptive of an 8-year old.

Unfortunately, the VAT team discovered it was a "cuffed" line that Sick Kids had put in, so would need to be surgically removed. Ollie went into a tailspin and had a complete meltdown requiring the poor VAT nurse to slap a dressing on as quickly as possible so that he wouldn't contaminate the line. This is all while we are holding him down as he kicked and screamed, "I hope I get an infection and THEN you'll have to take it OUT!". Not fun. Worst dressing change ever and hopefully his last ever. You think it's over when the cancer is gone, but it's far from over. 

We had to call Mario and the two of us talk him down so he would listen to the new plan which was a rush ask for a surgical time and date. Today we got the call and he goes in tomorrow morning. One more to add to the dozens of times he's already been in the OR this year. 

I won't even get into the challenges of online learning with both kids as I'm sure I'd be preaching to the choir with many of you. Hoping things get better in the coming weeks as we all get used to it.

Time to get our little potato chip addict to bed so he's okay for his surgery tomorrow. Forty-eight hours after that he can have his first comfortable and relaxing bath by himself in a year. Simple pleasures.

Home is where the heart (and the clutter) is...

We're home! Got home last weekend after a quick and uneventful trip from Toronto. It's so good and so surreal to be back.

This time Ollie climbed the stairs on our front porch all on his own steam. Man, it felt great to be coming back after a successful transplant versus a relapse like last time we came home from Toronto.

Family helped us by packing and moving all of our stuff with a van (thanks Sonya, Carson and Christine! 😘) so we could just have Ollie and his commode if needed. 

We took a lot of stuff to Toronto since we knew we'd be there for about 3 months (and bridging two seasons) and couldn't go far for entertaining the kids given COVID and the stem cell transplant. Naturally we also acquired more Barbies and Beyblades (surprisingly still cheaper than our normal summer vacation activities) while away. 

We were also grateful to the Nava family (who we are bubbling with) who brought our Abby home and helped to unpack the truck while their girls let Ollie talk to them incessantly about his new Beyblades.

When everyone left soon after the van was emptied, Ollie asked for an Ollie Pizza from Gabriel's, this time half cheese and half pepperoni. 

We were sceptical as he hadn't eaten pizza since transplant and his tastebuds had still been off, but as usual he showed us...

He ate a whole slice with crust included and had same for breakfast the next day! 😂 

Most of the first days have been spent unpacking and trying to declutter and reorganize our house and lives. This will take a while. We've basically been away from home to all intents and purposes since last November when he was diagnosed, with short weeks at home or at the condo in between/after rounds of chemo, radiation and stem cell transplant. In the 303 days since diagnosis we've spent 131 days admitted to hospital, and a further 83 days outpatient at hospitals for bloodwork, tests and check ups. That's 214 days at hospitals, leaving 89 days not in hospital, but for about half of those we were in Toronto. 

So really we were home without significant cancer intervention for just over a month this year and I didn't even count the online Braille lessons, physiotherapy sessions, online consults with doctors, etc., which still happened in those 89 days. So very little time and basically zero energy to do anything significant at home for almost a year. Now I have to pace myself because I so desperately want to put things in our home to right like we are doing with Ollie's health. It's going to take a while, despite that. Fortunately I'm getting good at running the proverbial marathon when needed. And I have evidence of what's really important.

I went through all of our kitchen cupboards and fridge as I put things from Toronto away and threw out every opened and expired food we had after a year of hardly being here (and when we were, most often you lovely people fed us through the Meal Train and your constant spontaneous drop offs of delicious goodness!). Two kitchen garbage bags full! Also got rid of all opened flour, oats, etc. Basically anything that could have mould spores and make Ollie sick. 

Donated all unexpired, unopened snacks to Ollie's school for Breakfast Club (thanks for picking up, Siobhan!) as my two won't eat them since they're doing online learning and there's no lunch packing for this family (yay!!!). A nice way to help out other families, too since the School community helped us so much last year with their food and financial donations.

We have been having some fun...almost daily walks to the Merry Dairy (thanks for all of the gift cards, folks! We're making great use of them!) to encourage Ollie to walk more.

At first he walked a block...

Got an ice cream reward...

Now he's almost running the whole way (about 3 blocks) and pushing his sister for resistance!

He's singing and wanting to dance. Keeps trying to teach us all how to tango...

Most of the time happy to be together again.

We've played some board games and Beyblades...

Had our favourite Chinese (Cypress Garden!)...

Hung out with our felines...(lots of hand sanitizer after and using HEPA filters to keep things as clean as possible for Ollie)

He's settled in to start virtual classes and we're working up to having the stamina to be in from 9 am to 1:30 daily (not there yet). Also still working on Braille. He now knows all of the letters in the alphabet and can identify a $5, $10 and $20 bill (so don't try to cheat him! 😄). Today he learned how to write in Braille with his Brailler and is super psyched to show everyone his new secret coder! And his new Braille chess set and a deck of Braille playing cards arrived making it possible for him to play without mom being his eyes (thanks Amy!!).

Abby starts online classes Friday and finally got teachers assigned today. She's happy to be home, but was sad to leave the Navas where she stayed the last month. She's naturally nervous about starting her new class, social distancing and whatever other changes may be lurking around the bend.

Her collaboration with Why We Swab continues as they promote our story on social media leading up to World Stem Cell Donors Day this Saturday, September 19. She's also been working on an opinion piece she was asked to write by CBC! Should be online in late September. Her life education in all of this has been extraordinary.

Mario is catching up on physical work like repairing and rebuilding computers that he brings home to work on, so he's geeking out and happy to do more than just helpdesk support. He's uncharacteristically the calm one right now, trying to keep us all from getting frustrated with each other. 

I am finding my groove. Having a hard time carving out time to write (not possible over the last handful of days) and to research for some cancer-related projects. Trying to not strangle my beloved Ollie as he tries to micro-manage my days now that he's feeling better (LOL) and I "work" for him. 

I'm still processing the fact that he's well. I go into his room sometimes when he's sleeping and turn the light on (he's blind so it doesn't bug him!) to check that he's breathing and doesn't have a fever. His rosy pink complexion tells me he's well. His eyelashes and hair starting to grow back are signs that we're through the hardest stuff, but it's still hard to believe that a year that could go so wrong so fast is ending so well so quickly. 

We're all still pretty emotional and often have short fuses right now, but we're working on it. We have to frequently remind ourselves that the constant imminent danger has passed and we need to try to react smaller to everything. A tall order for a bunch of dramatic and strong-willed extroverts who have constantly been in fight or flight mode for almost a year. But we're doing our best and getting some help to muddle through. Just content to be home, figuring out the next new normal.

Racing Lives, Hearts and Go Karts

Our family always seemed to be racing somewhere before cancer. As much as we tried to keep things manageable in terms of work, school, lessons and daily activities, I never felt like we had enough time to just be. To be together, be happy, be mindful, be present. I think COVID-19 has made a lot of families realize that their insane day to day pace was not the greatest for their family. We started learning this about a year ago as the kids were going back to school, we were working (I was actually in full time French class for work) and we were trying to figure out what that darn bump on Ollie's neck was. The stress of it all was unbearable. 

You'd think I'd feel more stressed now after my son had cancer for the last year and almost died, but honestly I was more stressed then, knowing something was wrong and feeling like there was never enough time to figure it out quickly and work our life around it. Soon it became our life and everything else was unimportant. We worked the rest of our life around our family and around cancer. Furthermore, COVID-19 took away the need and really the desire to race anywhere. 

I've been thinking about this because we took Ollie Go Karting last weekend. We wanted to show Ollie that despite COVID-19 and him being immuno-compromised, we can still have (safe) fun. We called ahead to the Centennial Mini-Indy to verify how busy it was and ensure we could get a side by side racer so that our blind Mario Andretti could really feel that he was in the driver's seat and not just a little kid riding with their parent. The staff there were amazing and so kind. They accommodated Ollie's every need from extra care to sanitize things to more time to get in and out of the kart. We used a ton of surface and hand sanitizer and we were off to the races! 

I was behind the boys and was able to watch Ollie spinning that wheel like his life depended on it. When I got close I heard Mario yelling, "LEFT! LEFT! RIGHT! STRAIGHT!" at each bend in the road while Ollie either yelled that his dad was horrible at giving directions or just laughed out loud. At one point I slowed right down to take a picture of them and to wipe my eyes, because I was so happy to see him just being a normal kid that my eyes were leaking. 😭

 

The adrenaline of it was a great release for all of us and a reminder of how many bends and bumps in the road we've had, but gotten around. It also brought to mind the rat race that was our life before cancer. I recalled how the constant adrenaline of running around pre-cancer felt, how the adrenaline from fear during cancer felt and the incredible contrast of our very calm life now as we simply live and heal. I think the only race I want to be in from now on, though, is on the Go Kart track.

Ollie has been wanting to play a lot and frankly, it's not something I'm always great at unless we're at an amusement park, so I brought in some help with games like "Don't Step In It". This is a great equalizer for Ollie because you wear a blindfold (or Dad and I did since he's already blind) and try not to step in poop-shaped playdough. So we're all blind and it has poop in it. Every 8-year old boy's idea of fun! 

We also bought a Hot Wheels track where you launch cars and try to jump them into a scale at the end. Ollie is highly competitive and loves stuff like this. It also gets him down on the floor and moving his body up and down with his own strength, which he couldn't do for the 5 months before transplant!

We've finally got his sleep back on track! Not allowing him to have long naps during the day (1-2 hours max if he needs it, but often he doesn't anymore!) has helped him to be tired by or before his 9 pm meds. He's then sleeping through the night and waking about 7 or 8 am! This has made a world of difference for all of us. He still loves us to make an "Ollie sandwich" when he's falling sleep, though! 😄

He's doing amazingly well. So sometimes it feels wrong. How can things be going so well for us when the past year has so often gone wrong and atypically?! Unfortunately because you've come to expect it and are likely suffering from post traumatic stress disorder (PTSD), you're still on high alert for trouble, even though you are constantly trying to convince yourself to calm down and not overreact. 

For example, two weeks ago before Abby left for Ottawa, she pointed out what looked like a mosquito bite or a pimple on the back of his head. This is exactly how Ollie's bump on his neck that turned out to be Anaplastic Large Cell Lymphoma began. I reassured her that it was only a pimple and tried to forget about it, but my eyes and my hand have been constantly drawn to it, wondering, worrying. Last weekend it suddenly looked bigger and very red. I panicked and consulted my expert ALCL mama friends. They tried to reassure me that it was likely nothing, but both told me to contact the doctor to ease my mind. I talked to Mario about it and stressed him out, too. I sent a message to the bone marrow transplant doctors, asking for a scan this week to rule out it. The doctor promised we'd talk about it on Tuesday at Ollie's check in. I prayed so hard again. Please don't let the lymphoma be back!! By Tuesday it was reduced and almost gone. Just a pimple as his hair is growing back and sometimes clogging follicles.

 He's also had some eye irritation and sometimes pain in the past few days. It would be very easy to leap to the conclusion that he had lymphoma in his brain again given we've seen this twice already, but when we calmed Ollie down and tried flushing his eye out, we realized his eyelashes (that fell out after radiation and chemo pre-transplant) are growing back in and their stubbiness is poking his eyeball and irritating it. 

He's also had a loose tooth for weeks, but in hospital post-transplant they told him not to play with it as they were worried with his platelets low that if he pulled it out it wouldn't clot easily and he could have a hard time stopping the bleeding. So he left it, but it was becoming really annoying to him. On the weekend he decided to play with it and kept asking if he could pull it out. Even though his platelets and blood counts are way up and actually normal, we didn't know what would happen if he did pull it out. He kept pushing it with his tongue and finally popped it right out. A bit of gauze in his mouth for a few minutes showed only a very tiny amount of blood and it clotted in mere minutes. Normal. Not cause for alarm or stress at all.

We have to take every little thing seriously, without overreacting, but I am struggling to balance my emotional reaction with my rationality sometimes. So I'm going to see a psychologist virtually to help me deal with what I suspect is PTSD. There's no shame in it because I have proven how strong I am over the last year to myself and now I need to make sure I've worked through all of it so I can keep moving forward without a constant sense of fear, dread or escalated alarm. As I told Mario and Ollie when we went Go Karting and told Abby every time we went out somewhere in Toronto, we have to LIVE. We've fought so hard to save his life and now we all have to enjoy living life together.

Ollie wants to live. He's interested in doing and trying everything. He's finding new skills and strengths (he can balance almost anything on his head! 😄).

He asked for a chess set and I ran around downtown Toronto trying to find one on Labour Day. He played against Daddy, telling me where to move after we told him where Daddy's pieces were and where his were. It was amazing to see what he could picture and keep in his head. He really shocks me daily. How does a kid who's had 19 sessions of radiation and 6 rounds of chemo remember anything?! You hear of chemo brain and there are moments when he needs short term information repeated, but most of the time he is still sharp as a tack.

Mario also finally acknowledged that his COVID hair had to follow the former COVID beard. Ollie wanted to help. We forgot to bring the clipper guides, though, so Mario really got his money's worth on this one! 😄

Now they can both balance and stick things on their heads! 😜

Ollie is his usual silly self now. Wanting to retry everything. Constant pranks. Laughing at the idea of wearing my glasses because he can't see anyways...

We're connecting with his virtual teacher and his Vision Itinerant teacher and he's getting ready to be a real student again. It'll be a tricky transition after very little formal instruction over the past year. As I told him, he's wicked smart.and can do it. 

We listened to the book, "Who Was Helen Keller?" on Audible and he grudgingly admitted she was pretty impressive and did so much with even greater challenges (in some ways) than he's had to deal with. He agreed that if Helen Keller could deal with being deaf AND blind, he can certainly learn blind.

On Tuesday (Day +50 post transplant) at our appointment at Sick Kids, we were delighted to see Dr. Bader who had been one of our many dedicated oncologists on 4 North at CHEO. He has a tremendous bedside manner and has always been so patient and kind with Ollie. He's doing a rotation at Sick Kids and was excited to see Ollie doing so well. 

His bone marrow transplant doctor, Dr. Ali came in and reassured me that medically Ollie is well and doing better than expected. There is no sign of Graft Versus Host Disease, he's fully engrafted with three chimerism tests of 100% and his counts remain high and normal now. I joked that Abby had said the night before his first chimerism test that her stem cells were likely overachievers. He laughed and said they certainly were and they'd rarely seen a half match transplant go this well. And then he said he'd talked to our CHEO team and they all agreed that there's no medical reason for us to stay longer and we could go home THIS WEEK!!! I was elated and scared all at the same time. 

They originally told us 6-8 weeks in hospital for transplant (we were 5) and at least a month nearby after transplant (it's been 2.5 weeks). Can we really be ready to go home?! We're uncharacteristically ahead...atypical again, but finally in the best way! We've all been pretty emotional over the last 24 hours.

So we're heading back to Ottawa this weekend! I was out running an errand yesterday and all of a sudden became overwhelmed with emotion. I started to sob and had to pull the car over. It's done, I kept thinking (not really, but this part I was so afraid would never happen has been a success add we got through it all). It's real. He's better every day. We kicked the lymphoma in the teeth just like we promised. As usual I get done the hard thing and break down after everything is okay.

On a last happy note and with her permission, I want to share my pride in Catherine Nava. As many of you know, the Navas are dear family friends who have been amazing to us throughout this journey. We got to know them through Francesca who has been one of Abby's dearest friends since Kindergarten. Catherine babysat for us in the past. We have known her for the past 7 years and watched her become an impressive and caring young woman. She's thinking about a career in nursing. She'd be incredible. Every single time Ollie asked her to come and see him in  hospital or at our house, she dropped everything and came. Her maturity (she's 17) and compassion in helping him throughout his battle have touched me deeply. 

Just when I thought I couldn't love and admire her more, she goes and gets registered to be on the stem cell donor registry because of Ollie and Abby!!! My eyes are leaking again! ❤ Please raise amazing humans like Catherine (kudos to her devoted parents). Our future is secure if there are more like her out there.

My heart is full. I am so very grateful to  God, everyone at Sick Kids, Toronto, and everyone who supported us in this part of the journey. Toronto definitely redeemed itself for us this second successful attempt at a stem cell transplant. We're sorry that COVID and our need to keep Ollie safe have kept us from being able to see dear friends who live here and have checked in regularly to offer assistance and support. Your willingness to help was enough and so appreciated. We'll come back for a great visit when COVID is gone for good. 

Watch out, Ottawa! We're coming back! 

The Blind Leading...

The past week was great. Ollie is doing really well and only had to go to hospital once this week for bloodwork and a check up. He's still showing no signs of Graft Versus Host Disease, his blood counts are high and stable and his chimerism test remains at 100%! The rest of the week we've been playing, walking, doing physio exercises, resting and reconnecting. 

Abby is happily getting settled in Ottawa with dear friends who are treating her like their own. She goes with them to our house daily to feed and love up the cats and spend a bit of time at home. Her online classes don't start until September 18 now so she's been getting her haircut, seeing doctors and generally getting caught up on her own needs. We are grateful to her surrogate family for their love and support.

Today I really want to talk about his blindness. Blindness is considered a disability. I really hate that word. Some people think that blindness is a terrible thing. Debilitating. They're horrified at the idea that Oliver is now blind after being sighted. I prefer to think that Ollie is now especially abled. That his blindness has given him other super powers. 

From the very outset of his blindness (that was a side-effect of the lymphoma in his cerebral spinal fluid last January) Mario and I didn't see it as the end of the world. We sat in a room full of experts who told us they didn't know if he'd ever recover any of his vision or not and we looked at each other and said, "He'll still have a great life WHEN we save his life." Then we asked the doctors, "So what's next to kick out the lymphoma and save him?" 

I know from other dear friends who have special children with different needs and abilities that they felt this way, too. That they needed to acknowledge that their child was exactly as he or she was supposed to be and may have challenges as a result, but none that would be insurmountable. That their children are still able to be the loving gifts that they were intended to be.

We've worked really hard to encourage Oliver to appreciate that being blind is not the end of his world, but just a change in his world. That he can still see, he just uses his other senses and input from people around him to paint the picture in his brain now. That it's something that he can adapt to. Something that he can learn to live with and overcome the difficulties of. These last 7 months we've encouraged him to try things and focus on what he CAN still do to get him to a point of acceptance. 

I've had several people forget that he is blind and either send him photos to look at, suggest he might like certain games or toys while in hospital, etc. When they realize, they're all very embarrassed and apologetic. I always tell them not to worry as we sometimes forget, too. It's still new and we're all adapting. Mario, Abby and I are learning to be better explainers and describers. Using more descriptive words when telling Ollie about something he can't see. Trying to remember not to say things like, "Ollie I wish you could see this!", but instead describing to him excitedly what we do see so he can picture it, too. 

We're also encouraging him not to have a chip on his shoulder about his "disability" so that people don't treat him differently in a way he'd dislike. We're trying to make him honest, but matter of fact about how he feels about and deals with it. He tells people frequently that he's legally blind. It's funny because so many educated adults don't know what to say to that.

He also realizes that in spite of his blindness he can do just about anything he sets his mind to, and daily he shows us that this is absolutely the case. So it's awe-inspiring for me to watch a person who has been sighted and is now blind try to navigate the world around them. They have context. They have an idea of what things look like, what their texture and shape is. They get the concepts of size and they understand colour. They have all kinds of frames of reference that a person who is born blind doesn't have. So in some respects that makes a person who was sighted and becomes blind perhaps more advantaged. This was explained to us by the Vision Itinerant team at the school board as well. 

He's leading us and teaching us so much. When we were in hospital, Ollie wrote my mom a letter on his own. I only helped a bit to help him space out his lines of text. My mom has been so touched at the fact that he would actually sit down and write her a letter when he can't even see what he is writing. That's determination. He has an abundance of it and that's one of the many reasons why we won't let him feel sorry for himself. 

So we won't accept it when people seem to think that blindness is the worst thing for him and that we should keep trying to fix it. We have been told by experts that his optic nerves are severely and irreparably damaged. Of course we are hopeful that in future as Ollie ages and technology evolves he may be able to recover some of that vision. We're hopeful that one day he may be able to have an implant much like a cochlear implant that will enable him to see forms and shapes. Perhaps a bit of light. Things that will assist him in his daily life and make things a little less challenging for him, but in the meantime we're really glad that he has learned that he is totally capable of doing just about anything that he sets his mind to. 

I always find it very funny that when he gets mad, one of the first things he wants to do is stomp off by himself. He doesn't let the fact that he's blind or doesn't know where he is stop him at all. He puts his hands out, steps forward confidently and he's ready to go. You can be certain that attitude will take him very far in life...already has in fact because he's stl with us against all of the odds. 

There are still lots of things I don't understand yet. Like how he'll re-learn to do certain things like walk with a cane, find clothes that match, find a missing shoe, move without fear of hurting himself. I know he'll learn them all and so much more, it's just mind boggling sometimes to think abouthow much he'll still have to overcome and learn. He's now been assigned his new vision itinerant teacher and I can't wait to hear more about how they're going to help us to help him to learn in school, but also other important and practical life skills.

We restarted his Braille lessons with oh so patient Leona this week. He was reluctant and a bit difficult at first, but quickly showed us that his beautiful brain retained all 17 letters that he now knows of the Braille alphabet. 

I got a letter in the mail from Canada Revenue Agency telling me that I will now get the child disability credit and that he's also eligible for the Registered Disability Savings Plan. So I spend many hours in a day right now learning about resources that will help to secure my son's physical and financial future. Because now it's more important than ever that we set him up for success for the rest of his life. He's fought so hard to HAVE a rest of his life and we want it to be long and comfortable.