This All Feels so Familiar

The past few days of isolation have been an enlightening experience.  Much of my contact with the outside world had been intermittent. Many of us are probably spending a little too much time on social media, but it is one way that we cope and how we gather information.

One thing that I have noticed that is different about the many people that I follow on social media is how they are reacting to the Covid-19 pandemic. I am seeing some people who have a lot of experience dealing with severe health care conditions expressing genuine fear about this pandemic. These are people who I respect and who don’t panic for no reason. I am not sure why, but it shocks me to hear some of these people say, “I’m scared.” I guess it is not the words themselves but who it is coming from - people who have stared death in the face. It means something different coming from people with that kind of experience.

I must admit that I have been having many feeling of déjà vu as I hear physicians on news programs describe what they see in their hospitals and critical care units. Many sights that we experienced in our own experiences in the ICU. Although the circumstances are different - the language - the procedures - the drastic interventions are all too familiar. Sometimes it is just a good idea to turn off the TV.

For those who know what this is or seen it used - your perspective
on Covid-19 might be a little different than most.

What has also been surprising is comments from experienced doctors and nurses, how they are reacting to this crisis. I saw one physician post a picture of what it looks like to be intubated and imploring people to isolate to prevent the spread of the virus. I saw another physician express the horror of having to intubate a colleague who had contracted the virus. He went on to explain the profound effect of performing this procedure on someone he knew.

I find the impact that this is having on medical professionals surprising, but perhaps my perspective is a little jaded. I recall so many things that our medical team did and how they described many heinous procedures as if it was routine. We do this all the time was how we interpreted the message. In retrospect, I always felt that our very legitimate fears were dismissed. Now that I see practising physicians express many of the same feelings we had - I feel somewhat vindicated but I take very little solace in that vindication. Having been through it - I know what it’s like, and I know it’s hard. I wouldn’t wish it on anyone.

Perhaps that is something we will learn in this whole ordeal. To respect the fragility of life and acknowledge our apprehension and even our fears. The next time a Doctor has to explain to parents why they have to intubate their child -  that they would look at it through a different lens. Also, that we as patients & caregivers will realize that those caring for us have many of the same fears that we do.

We were all there once, and we are in this together.

Everyone Chill Out

Hi everyone - how’s everyone dealing with “Pandemic 2020?”

For those that don’t know - my son Russell and my wife Susan are two people who are at high-risk related to Covid-19 or whatever politically correct name we are calling it nowadays.

Because of our health issues, we started to self-isolate about nine days ago when the first case of the virus was confirmed in our city. We had discussed this with our cardiologist, and she forwarded some beneficial information for us.

We are minimizing social contact - not in complete isolation. I went to work one-day last week and have made a trip to the grocery store and the pharmacy, but that’s about it. We aren’t freaking out, and are trying to take appropriate action based on the level of risk.

One of the most stressful parts of this time has been the constant, unrelenting barrage of coverage of the pandemic. I would typically watch a fair bit of news coverage about this, but I’ve stopped. I don’t think it’s healthy to immerse yourself in 24/7 coverage, especially with the amount of misinformation and wild speculation that is going on.

It’s strange how this whole situation has reminded me of our stay in hospital over eleven years ago now. When my son crashed in a Winnipeg hospital - our lives stopped. In less than 24 hours, we cheated death and were uprooted from everything familiar as our son was medivac’d two provinces away.  Everything familiar and normal was gone. It has changed forever how we look at life and especially adversity. I suspect that this pandemic will have a similar effect for many.

In the past weeks, our lives have changed, but our medical complexity has prepared us.  It is not the first time that we have had to self-isolate because of an infectious disease in our community. We have had to do it on two other occasions. I guess we just live in a heightened state of readiness. No shortage of toilet paper in our house!

I am reluctant to advise as I think there are many things I still need to learn myself, but I completely understand what it is like to have your life turned upside down on a moment’s notice. If it helps - there are a few things that I would cautiously call advice.

Calm down!

For some, they are going through something I could only call group hysteria right now. Social media is an excellent incubator for this. People take their legitimate concerns/anxiety and share them with others and, before long, a group of people whip themselves into a frenzy.  Frenzied people do not make good decisions. Fear, worry, anxiety are typical and very real. However, I don’t recall a single situation in my life where ‘worry’ ever helped me solve a problem. The problem was there whether I worried about it or not. However, it ‘s not unreasonable to be worried. Worry can be positive if it motivates you to take reasonable precautions. Just don’t let it consume you to the extent that it paralyzes you. I mentioned earlier that I reached out to our cardiologist a couple of weeks ago and got some solid advice, which really alleviated some of my anxiety. This trusted source provided me with relevant information absent hyperbole and conjecture. I appreciated that.

Routine

When we were in hospital for months on end in some very high-stress situations, we felt we were not in control.  That is very disconcerting for many people. Having your life and schedule turned upside down creates lots of anxiety. What we did to combat this was developing a routine - just like a regular workweek.  We set the alarm, ate at regular intervals, and went to the hospital just like we were heading to the office. We constructed a time table and tried to introduce as much structure into our lives as we could.  This accomplished several things. It forced us to pace ourselves as we had to plan breaks and take breaks away from the hospital (especially the ICU.) Structure forced us to prioritize the important things and it gave us a sense of purpose. Finally, it gave is control over something. We were so stressed at the time - control over anything was a big boost even if it was just the time you woke up in the morning.

Know yourself

The final thing I would suggest is about understanding yourself.  Susan and I both tend to lean toward the introvert side. Being in self-isolation is not that hard for us. However, if you are an extrovert, I could see this being a huge challenge. I think this might be where social media can help out if you engage with those who are a positive influence - and yes, they do exist. My point is that you have to understand how you cope with stress and what things bring you joy. Let’s face it - we all need a little joy in our lives right now. A good book or a movie is a great escape. I’m taking on some projects around the house, and it feels great to get some repairs done that are long overdue. You have to keep positive and keep moving forward. If that doesn’t work, there are always cat videos.

The last thing I want to leave you with is a piece of advice I had heard many times from our nurses when we were in hospital.

 “This is a marathon - not a sprint.”

We have no idea how long this state of emergency is going to last. We not only need to be prepared to endure this whole pandemic, but just as importantly, we need to figure out how we will deal with the aftermath. That just might prove to be just as challenging as living through the pandemic itself.

Keep calm and carry on!

Am I an Author?

I effectively finished the manuscript for my book in the spring of 2019. That is nearly a year ago now. So what is going on? When is the book coming out?

A question I have asked myself many times, and yes, it is frustrating. I am now at a stage in the process that was a complete mystery to me when I completed the manuscript. In many ways, the publishing process is still a mystery to me.

For someone who never had the aspiration of being a writer, I have had to do a lot of remedial learning. I have operated in the business world all of my career. Complex business cases and contracts are nothing new to me, but the publishing world is like nothing I have ever been involved with before. To say it’s been a steep learning curve would be an understatement.

For the past few months, I have been exploring many ways of getting published — traditional publishing vs self-publishing. Literary agents - predatory publishers are all things I hadn’t the slightest understanding. I realize it is a business and parts of it I gravitate to quite easily. However, the process of taking a manuscript and creating a book are all new to me. Then there is the dark side of the industry. Working with a reputable publisher is huge. I have learned that publishing is a bit of a contact sport - not for the faint of heart.

What has been a big surprise to me and a bit of an epiphany is how much I have enjoyed the editing process. Your cover, book title, and your marketing strategy changes some of the content of the book. A last-minute change of the cover can spark an avalanche of editing, which I find strangely enjoyable. I guess I see the light at the end of the tunnel now and when you see it all coming together, it is quite gratifying.  Now that I am in editing mode, I enjoy the fine-tuning - the crafting — seeing the manuscript from 30,000 feet.

I have been fortunate to have made some very knowledgable contacts in this process. They have been a great influence and source of encouragement. With some positive influence and doing a lot more reading myself, I have learned a lot about the art of writing and crafting a compelling story. I have reached out to several people to read my manuscript and have received some very helpful feedback. Trust me; it helps to approach this process from a position of humility and checking your ego at the door. Listening to feedback and trying to understand criticism will only make your writing so much better.

I would say that my writing at this point is a bit like a blunt instrument. It’s a little raw and unpolished, but the only way to make your writing better is to keep writing. I have re-written whole chapters and done extensive editing. The strange thing is that I have enjoyed the whole process. Learning how a single word used effectively can completely change the feel of a paragraph or paint a very distinct picture. To have a reader see what you are writing and not just the words on a page. To look at the words on the page as a reader would. What questions would they have? Should I answer them or leave something to their imagination?

That has been another interesting revelation in this process. I could start my manuscript today and tell the story completely differently. There are so many ways to tell a story.

At some point, the endless tweaking and second-guessing will have to stop. In the next few weeks, I am going to pull the trigger on this project, and we will go to print. The one thing that I have kept in the back of my mind is that this is “my” project - my book. It is my name that will be on the cover. With that in mind, I have always said to myself that, at any point, I can stop the process. I can choose not to publish. I could print out a hard copy - place it in a binder - and never look at it again. Whatever I publish, I have to be satisfied with what I have written - that it sounds like me and accomplishes what I want.

 All this proves to me is that you can start to get a little squirrelly if you stare at it too long.

That’s the funny part of this process. I have spent my entire life in what I would call the “real world.” I’ve worked in construction, business, and have been completely comfortable in the board room - a very serious no-nonsense crowd. Now that I have written my manuscript and tried to tap into the creative side of my brain - I fear I have become one of those artsy - flakey types that I would have rolled my eyes a few years ago. I guess I have to accept that as well. However, if you see me wearing a beret, sipping lattes at Starbucks, and reading anything written by one of the Bronte sisters, I think an intervention may be required.

Transplant - 11 Years Later

Today is a very unique anniversary.

The days between Christmas and New Year spark many memories from our time in hospital with Russell. It is hard to believe it was 11 years ago. So much has happened since that frigid Edmonton morning.

We had just said goodbye to Nicole the previous night, as she and her Grandma boarded a plane back to Winnipeg. We were left feeling very empty with our family separated once again. We woke up that morning expecting another monotonous day at the hospital, but at about 8:00 am we were phoned at our hotel with news that would change our plans considerably.

The phone call where we were told that there was a donor heart available for Russell.

11 years later, it still feels like a dream and not quite real.

Susan asked me last night - after all of these years - how do I feel about the transplant? A question that is not easy to answer.

On the day of Russell’s transplant, one would have expected us to be overjoyed with high fives all around. Yes, we were very excited that the transplant would be a huge milestone, but we had been in the hospital for so long we knew the transplant would not be the end of the story.  To be quite honest, we were worried and scared.  

At this point in time, we knew Russell still had open-heart surgery to implant the donor heart and the recovery that went with it. We were petrified that we were so close to having a successful outcome that something might go wrong. We were not going to relax until the donor heart was in, and we knew that the surgery was a success. 

We never got that confirmation - at least not right away.

We got the call that Russell’s surgery was completed a little after midnight. We met with our surgeon, who did not have encouraging news. The operation was a success, but there were issues with the donor heart. He told us bluntly, “Be prepared for a rough night.”

The next 48 hours, we watched and waited. There were several anxious moments, but very slowly and steadily, we could see signs of recovery. The worst was over, and we could finally get past this initial hurdle, but there were many hurdles yet to come.

January 1, 2009 - 24 hours post-transplant

11 years later, we have many of the same feelings of apprehension and worry, but with each passing year, we have to look back at the many fantastic opportunities that “transplant” has given us and especially Russell. Russell is slowly figuring out his reality of being a heart transplant recipient. It is a lot for a little boy to process. This is a work in progress, but by outward appearances, he looks and acts like any other healthy little boy. He’s currently playing on the computer - playing video games. We consider it a privilege to worry about his screen time rather than his cardiac health.

Russell also keeps things very real. He is a normal little boy and is downright goofy. It is all of his silly antics that keep us on our toes. In the few moments when we have time to think about something like his transplantiversary - we just say, “Wow.” He truly is a “miracle.”

Happy 11^th Transplantiversary Russell

Dear Anti-Vaxxers

Earlier this week, we had an Emergency Room adventure.  In an attempt to keep our immune-compromised son protected from as many infectious diseases as possible, we make it a priority to get him vaccinated. Because of his medical condition, there are some vaccines that he cannot receive.  The MMR (Mumps-Measles-Rubella) vaccine he cannot receive because it is a ‘live’ vaccine.

However, we do make a concerted effort to get him his flu shot.  This is what led us to the Emergency Room this past Monday.

In the past, our son has had a reaction to the flu shot.  We have questioned whether we should still give him the shot. With the advice of no less than five doctors, we have been encouraged to keep doing it. Now we do the flu shot in microdoses.  The shot is divided into 4 microdoses and given in timed intervals.  If the first shot is given and there is no reaction - we proceed with the next shot.  This process is lengthy, and you can imagine how our son enjoys getting four separate shots.

We took this approach last year, and it went very smoothly. There was no reaction.  This past Monday, we did it again.  There was no reaction until the fourth and final shot. After the last shot, Russell’s skin broke out in hives, and he became very agitated and itchy.  The Allergist who was administering the shots provided an antihistamine, and when she felt that was not working, she then administered epinephrine and called 911.

This engaged all of the resources of the Winnipeg Fire and Paramedic Service.  The first to arrive at our Doctor’s office was the fire truck, with the ambulance closely behind. Yes, it was overkill.

Susan and Russell were quickly escorted into the ambulance and taken to the Emergency Room at HSC - Children’s. Russell got to operate the sirens, which he did think was rather “cool.”

The purpose of going to the Emergency Room was to monitor the allergic reaction and to ensure there was no rebound effect when the effects of the epinephrine wore off. We were there a few uneventful hours and were released. We went home for a much-needed rest.

The decision to give Russell a flu shot is not unlike many of the decisions that we have to make as it related to his health care. Managing a child with a heart transplant and kidney damage prompts many discussions about the types and effects of the medications he takes. Most of the medications he takes have the potential to do significant harm to him. We are not alone in this situation, this is the reality of anyone who has to manage a medically complex condition.

So, why did we chose to give Russell the flu shot when we knew there was a significant risk that he might have an allergic reaction. After all, the efficacy of the flu shot varies from year to year, and sometimes it’s a good match, and sometimes it is not. It is effectively playing the odds.  So, why did we do it?  Quite simply, because of anti-vaxxers.  

Everyone in our home gets the flu shot, so it wouldn’t be a big deal for Russell to not be vaccinated except for the fact that with the increased prevalence of the population not getting vaccinated (thanks to anti-vax hysteria) we now have to worry about every kid with a runny nose who Russell is exposed to at school. 

We have a long history of having issues with this.  Our children have been quarantined twice due to measles scares in their school and Russell had to endure a 5-day stay in hospital when he contracted Chicken Pox. Being immune-suppressed makes diseases like Chicken Pox and Measles a life-threatening reality. All thanks to the tin-foil hat conspiracy theorists who think they know better.

Will we give Russell a flu shot next year? At this point - I don’t know. We will have to make that decision in the next few months. Just another choice in a long list of options that we have had to make over the years. It is infuriating to have to face this reality knowing that many of these diseases could be mostly eliminated if people would just vaccinate.  

The next time you see a GoFund Me page or a Social Media story about a child with cancer or some significant health malady and you feel a need to support these families?  Perhaps, think about ensuring you and the people around you are vaccinated. You might even prevent getting ill yourself.

Adopting Hearts

For the past year and a half, I’ve been working on my manuscript that shares the story of my family. Yes, the story revolves around our battles with congenital heart disease but the project has taught me so much more. I suspect that some of my future posts will be based on some of these discoveries - some of which were victims of the editing process.

Writing the basic story was easy. The fact, dates, times, and chronology was fairly easy. After all, it’s my story. The challenge became in drawing a conclusion or trying to make sense of everything that happened to us. What was the point of it all?

I still recall several conversations with Susan as we talked about the many lessons that we had learned. I was curious if she was thinking the same things as I - or were we interpreting things differently. It was an enlightening exercise in introspection.

One thing that we talked a lot about was adoption. That seems strange given that our adoption story could be considered a footnote in the story of our family. As I wrote and thought about it more I realized how important our adoption experience was and how it prepared us for what was to come.

I still recall vividly, sitting in the PICU at the Stollery Children’s Hospital and having some of our nurses explain the heart transplant process to us. When we arrived in Edmonton we knew we were going there for the transplant but we didn’t know a lot about the process. We were so freaked out - we just knew that transplant was the only option and we wanted it to happen as soon as possible. Not much else mattered - we were in crisis mode.

As we got more information, and as the transplant process was explained to us, we had this strange sense of déjà vu. Things were starting to sound eerily familiar. We had no control over the process. The transplant could happen in a day, a month, or possibly - never. We were powerless and all we could do was sit and impatiently wait. We were completely dependent on somehow - somewhere that someone might make a choice. A very difficult choice.

The sense of déjà vu that we felt was because we had been through this identical process before. The loss of control that we felt and the complete dependence on others was the identical process we went through as part of the adoption process. In fact, even some of the words that were used were the same. What was even more intriguing to me as I now reflect upon that experience was that adoption prepared us for something else. Caring for a child that would require a great deal of extra support for the rest of his life.

When we went through the adoption process. We were constantly reminded that we needed to be prepared for every contingency. We could adopt a child with health issues, or disabilities. These were things that were impossible to predict. Susan and I had to ask ourselves a lot of difficult questions about how we would handle an endless number of possible scenarios. Not only to handle them but be willing to commit to a lifetime of challenges that they might bring. The ironic part of this story was that when we adopted Nicole she was the picture of health and perfect in every way. All of the training and preparation we had done to prepare for potential challenges did not materialize. All of the apprehension an worry that we had felt just evaporated.

The conclusion that we came to was that all of the preparation and education that we received as part of the adoption process was not preparing us for the child that we adopted but in time all of that knowledge would be utilized (and needed) when we had our biological child (Russell) and found ourselves in a life and death struggle in an intensive care unit. This time we would not be adopting a child - we would be adopting a heart.

I know that sounds strange, but when the transplant process was explained to us that is the conclusion that Susan and I came to. After all, it was how we had been taught. This realization was met with puzzled looks when we tried to explain this concept to some of our medical staff. I still recall one nurse having a shocked look on her face when we shared our insights with her and I feared I had said something bordering on offensive.  A few hours later the same nurse came back to me after having given my comments some thought and she understood what I was getting at. I don’t know if she agreed with my conclusion but perhaps she understood that adoption was something we understood and that we were using our own experience to cope with our grim situation.

Our experience with adoption was such a positive experience. It taught us so many things and forced us to think about the things that were important to us. That experience gave us clarity and more importantly hope when we were faced with the uncertainty of a heart transplant. In many ways, adoption was a perfect preparation for what we were going to face. Only now do I realize how important that was to us. It probably got us through some very dark days.

That is also the challenge that we have when we try to support people who are going through difficult times. It is hard to understand what they are going through when you don’t understand the context of their lives. This is why it is so important when we try to offer comfort to be quiet and listen to what they are saying. What is shared may not have significance to us, but it is obviously something significant or they would not have taken the effort to bring it up. We are the sum total of our experiences and inevitably we rely on our experience to cope with the challenges in our lives.

All of our life experiences are so unique and it is really interesting to discover how all of the pieces fit together. After all these years I’m still quite amazed.

The "Goalie" Mentality

Those who follow sports are familiar with a commonly used term "The Goalie Mentality." For those not familiar with sports metaphors, let me explain.

I heard a story a few years ago and it described some of the eccentric behaviour that seems to be common among goaltenders. The story describes a goalie who used to build a mental wall in front of his net. Just before the opening faceoff, he would skate to the blue line and slowly skate back to his crease. The whole way back he would mentally build a wall brick by brick. All the time telling himself it was his job to keep the wall intact. Some nights it worked….some nights the wall came down, but it was a consistent method for him to start every game. There were occasions, where a defenceman would greet the goalie in the midst of his pre-game ritual, to have a chat, only to be met with silence. Of note…do not mess with a goalie, they are a bit nuts. 

I share this story because it has had some relevance to us lately.

As with most kids, our kids spend way too much time in front of screens. As the snow was slowly melting, earlier this year, we could sense spring on the horizon. Susan and I asked Russell if he would like to sign up for a spring sport. We made a couple of suggestions and when we suggested soccer, he did seem to perk up a bit and he seemed genuinely interested.

With a lot of skepticism and a touch of fear, we signed Russell up to play soccer. We knew this would be a huge challenge for him. Russell hasn’t played soccer in 4 years, and that experience would hardly be called organized soccer. We knew he would be playing against boys who likely played every year and likely played indoor soccer in the wintertime. Our much greater fear would be how Russell would handle the whole situation as a boy who has had many challenges in his life, and where sports in school has been an unmitigated disaster. Russell has had many significant developmental challenges and at some point I hope to talk about them in more detail, but that is a decision for Russell to share and not me.

When I try to describe Russell and the challenges he has, many terms get thrown around.  ADHD/ADD - Global Developmental Delay - and some have described him with some characteristics of Autism but then quickly correct themselves and say “but he doesn’t have autism.” For parents, this has been a mess to try to figure out and honestly none of these labels seem to fit.

About 2 ½ years ago it was suggested to us that Russell sees a therapist who specializes in treating children who have anxiety related to medical trauma.  We had always hypothesized that Russell's medical horrors as an infant might be affecting him later in life, and as we learned that might indeed be the case. I can’t say how appreciative we are to finally find something that works for Russell. So far this therapy has been paying huge dividends, but we still have a lot to learn and this is a long term process. Ironically, one of the therapeutic methods that she uses involves playing soccer.

After hearing about our plan to put Russell in soccer, his therapist was very excited. She also cautioned us to just let Russell - be Russell. Don't warn his coaches about some of the challenges Russell has, let Russell figure this out on his own. Her concern was that if we made a big deal out of this that the coaches would just treat Russell the way he is treated in school. That he is different - and that he isn't capable. Don't let Russell get labelled. Don't let anyone put an asterisk beside his name.

As we were introduced to Russell’s soccer coach and the rest of the team, Russell shared something with us that struck fear into us. In trying to encourage him we talked about scoring goals, playing defence, and being a good teammate. Russell has very strong opinions and when he shared with us that he wanted to play goal we knew this was something he had his heart set on.

That may not be a big deal to most parents but for us, we were stricken by fear. Of all the positions to play, being a goalkeeper would put him on an island, by himself, and with no one to back him up. When the other team would score - they would score on “him.” A ten-year-old boy with significant anxiety issues. Suppressing our own fear, we kept quiet and hoped that the coach would take care of this. Surely, he wouldn’t put Russell in goal given that Russell was very inexperienced and was just learning some of the rules. We were not even sure how much Russell would even participate. Our goal was to have him be part of a team and be included. We were trying to keep our expectations in check. Just get out of the house, have some fun, and get some exercise. We would have considered it a huge success if we were to make it through without a meltdown.

The first game came and we could tell Russell was quite unsure on the field. He played defence which was a very safe spot for him. He did OK. He was a little disengaged but had a couple of good moments. For the most part, it was positive. Russell’s team won the game easily, I think the score was 9-1. Russell had a positive first experience but we know he was asking his coach to play goal. We could also see that the team had several very talented goalkeepers. I didn’t see a chance where Russell would be playing in goal anytime soon. We hoped Russell wouldn't be disappointed.

Game 2 came and things were going much as they had in the first game. This game was much closer and as I recall we were down a couple of goals at the half. It was actually a competitive and entertaining to watch. Then the unexpected happened. As the team was gathered around their coach I saw Russell rummaging through the equipment bag. The gloves were going on. Then the bright yellow jersey. I elbowed Susan and drew her attention to what was going on. All I could say was, “They’re putting him in…they’re putting him in goal!”

Both Susan and I had our hearts in our throat, which would seem like a massive over-reaction if you didn’t know Russell. Not just his medical history but his experiences in school where he has many times been labeled as one of “those” kids. The kid who wasn’t given a part in the Christmas concert because he was too disruptive and that was given other tasks to do while other kids would do the regular curriculum. It was also reminiscent of many of our experiences where Susan and I could not protect him. We couldn’t take his place when he was jabbed with a needle or when he was subjected to countless medical procedures. All we could do was stand on the sidelines, try to encourage him, and watch and wonder if this kid would ever get a break. How many times we had prayed that this kid would just get one break.

Once again he was alone in a goal that seemed to swallow up this little boy. Russell is thin and small for his age and it seemed overwhelming. Would this just be one more in a long list of disastrous experiences for him? 

The half began and play continued. Our team started playing much better in the second half. They scored a goal and before long the game was tied up. Then play moved toward our goal where are son guarded the net. The boy who had been aloof and seemingly disengaged had disappeared - he was laser focussed on the ball and protecting his net. The first shot on goal was a slow roller and Russell flopped onto the ball. Not being completely familiar with all of the rules, Russell required a little coaching in taking a goal kick, but he figured it out. Russell’s team played very well in front of him, perhaps knowing they had a “shaky” goalkeeper they knew they had to play well defensively.

Photo Courtesy of Rex Sokolies

For the entire half, Russell’s white-knuckled parents did not relax. As time passed Russell seemed to gain more confidence. He made a couple of stops and many of the parents cheered - which felt awfully good. Before we knew it, the referee was blowing the whistle. The game was over and Russell shut the other team out. Our team chalked up their second win. For Susan and me, we survived a very stressful half. Despite his parents being completely stressed, Russell walked of the field showing no emotion. From his reaction I wondered if he didn’t have a “goalie mentality.”

Since that early game, Russell has played in goal on several occasions. Has he been scored on? Yes. A couple of games were fairly rough, as they have faced some very good teams, but Russell’s reaction to being scored on has been consistent. He pulls the ball out of the net and fires the ball at the referee with no reaction. He just plays on. One of the key skills of any goalie is having a very short memory. So, you let in a goal…maybe it was a soft goal…it doesn’t matter …you have to focus on the next shot - the next play. You need to move forward and leave the past in the past…besides …what do you have to worry about, there is a wall there right?


UPDATE: I wanted to follow up on how the rest of the season went. Russell continued to improve and play goal. He was so into playing in goal he began showing little interest in playing the field.  Something for us to work on. However, he began showing a lot of confidence in goal and some of the other boys were openly suggesting to the coach keep him in goal as that freed up some of the other skilled players to play in the field. Near the end of the season, the boys had a game in Transcona, where Russell once again played in net. The boy stood on his head as his team was severely outplayed and he kept them in the game making several spectacular saves.

After the game, one of his coaches commented on what an outstanding job he had done and patted him on the back telling him he was the player of the game. Yeah...as a Dad I was very proud.

At the end of the season, we have an annual tournament to wrap up the season.  Typically, the boys take turns playing goal.  One boy would play the first half and then another boy would play the second half. We played 3 games in the tournament and Russell played goal every minute in goal. Both halves of all 3 games. He did great!

I wrote done some of these memories because successes like this have been few and far between. It's so important to celebrate the successes. I don't even know if Russell will play soccer again, but for two months we played 2 games a week - went to practices and we had a lot of fun.  I'll never forget it and how amazing our boy is.

The entire season I never once told anyone on the team - coaches or parents - that Russell has a heart transplant. It was so nice not to have to explain that.