A Nation of Hall Monitors - The End of Community

A strong community with neighbours who care about each other is far better protection from Covid than a vaccine passport.

Last year at this time my wife and I were very nervous. School was about to start and sending an immune-compromised kid to school was more than a little nerve-racking. We knew some measures were put in place to prevent the spread of Covid but that remained to be seen. At the time cases were quite low and we didn't think the risk was very high but there was no guarantee it would stay that way. 

Inevitably after Thanksgiving cases did start to rise. What happened in our community was interesting. I recall vividly going to the grocery store and where I saw only a handful of masks being used, a few weeks earlier,  I now started to see more and more masks. I recall many people being more cautious and adjusting their lives accordingly. It was nice to see the community pulling together. 

I had a lot of confidence in our community. When Covid first appeared in our province - compliance to rules was rather amazing...despite the toilet paper crisis.  At the time we didn't know a whole lot and there was genuine unity...however with the insertion of politics into the pandemic - credibility quickly plummeted.  Masks were not effective - then they were.  Certain gatherings were openly sanctioned - others were reviled.  Snowbirds headed to sunny destinations while the bulk of the population languished under lockdowns. The rules seemed to apply to some and not others.

Despite a lot of goodwill from the public, our government overseers were not satisfied. Instead of making the case, being transparent, and providing information - our leaders implemented a series of public health orders. The people who were already taking appropriate action were punished and those who broke the rules - continued to break the rules. "We're all in it together" became a punch line. 

With the introduction of vaccines - there was hope for getting back to normal. However, perhaps predictably - vaccines themselves began to drive our community apart. Even though there was a great demand for the vaccines - that wasn't enough.  Incentives and talk of vaccine mandates took centre stage. Public health officials and politicians openly stated that punitive measures must be taken to ensure "compliance."  It wasn't that vaccine passports work - it was to drive vaccination rates. The resistance increased. Arguments over informed consent, constitutional freedoms, and personal freedom ensued. Family members stopped talking to each other. Neighbours began being suspicious and in some cases were encouraged to report "suspicious" activity.  We've become a nation of hall monitors.

Government officials are now treating their own population as disobedient children. The concept of positive reinforcement had been abandoned for the "Carrot and Stick" approach - with an increasing emphasis on the "stick."

Now - a year later...approaching another school year. Our apprehension has returned. Why?  Are we concerned about Covid.  Not really.  Are we more concerned about another stressful year of threats of lockdowns and school closure - Yes, 

I still recall meeting with my son's school before he started Kindergarten 8 years ago. We did as best we could to explain my son's health conditions and the risks he lives with every day due to a compromised immune system. Honestly, we tried everything we could do to put the fear of God into the school and how we were to be informed of any outbreaks of measles, chickenpox, or any of the standard communicable diseases that could pose a risk to our son. 

We knew that not everyone vaccinates.  Did it frustrate us - yes - but it was unlikely to change.  So we had to do it alone.  As we always have. We tried to use common sense, get the best advice, and take actions appropriately to minimize risk. We had to weigh the risks against giving our son the most normal life possible. Our choice then - and our choice now is that it is worth the risk. What is the point of saving a child's life if you take away every normal aspect of that life by restricting them at every turn? We live with that risk every day.

One of the best ways we have found to reduce risk is by informing everyone around us about our risks. Our friends, neighbours, and family are all aware and because they are informed - they make accommodations for us. If they have a sniffle or cough - they visit another day. We informed the school so that they would take note of any children or staff who might be sick. Although we could never control who attends school - they could at least make us aware so that we can make a decision to keep our son at home? Quarantines are not new to us.

Amazingly, many people in our community stepped up.  I recall talking to one mom at daycare who shared that her daughter was sick - not a big deal - but she thought of our son and decided to stay home from work and not send her to daycare.  I've received dozens of phone calls over the years from our school when they were notified by a parent that their child had strep, measles, or some other ailment.

Our community became a bulwark to protect us.  No one was obligated to share their information - but they did.  They felt it was the right thing to do. Strong communities do that - because most people are decent. At one time this was commonplace.  We used to look out for each other.

In today's environment - do you think any reasonable parent is going to share any health information with the school about their children?  Not a chance. They don't want to become a target.  As such - important information about any illness in our community will likely be concealed.  In the past, there were likely many instances where we were provided information that we probably shouldn't have. However, knowing our situation many people skirted the rules and provided us much-needed information. Those days are over.

Our lives have become significantly more challenging because a lot of the informal communication tools we used to use are no more. Strict adherence to rules and regulations has now become the norm in our society and is observed with almost religious fervour.  It may seem facetious but I really think a lot of people need to "get a life" and I mean that in the truest sense of the words.

I’m Getting the Covid Vaccine – Ask me why?

 You hear it all the time. We are a divided nation.  It seems everywhere we turn we are confronted with the things that divide us. Your political beliefs, race, culture, and religion – the list goes on and on.

When I wrote my book – I tried to concentrate on telling our story.  To focus on our experiences - our feelings and our perception of what was going on around us.  In doing research and trying to come to terms as to why we made some of the choices we made (and there many.) It led me to think a lot about where we came from. No matter how I told my story it was inevitably shaped by what I believed and my life experiences. Without having any insight into me as a person – you would never understand the “why" of our experience.  That is why many people's perceptions are based on their beliefs and their own unique life experience. It is why many of us approach life's problems very differently.

Much of my feelings about Covid and the possibility of a vaccine are shaped by many years of being exposed to the health care system The many people I have learned to trust under very tumultuous circumstances.

First off, the obvious reason why I would get the Covid vaccine is that I have two people in my home who are at high risk for Covid and have significant underlying health conditions. Some of the other reasons I would get the vaccine are less obvious but no less important.

When my son Russell – crashed in an Emergency Room over 12 years ago something happened. Like it or not – we were no longer in control. We had to place our trust in the medical team who was caring for him and even more frightening we began to realize that a lot of what was about to happen would depend on the resilience and strength of an 8-week old baby. There was almost nothing this mom and dad could do but watch and pray.

In those very challenging months that lay ahead, we had to consent to treatments and procedures that still make us wince. Some of those treatments had the dubious adjective – “experimental.”  We often heard unsettled language from an esteemed medical team who used words that did not guarantee a successful outcome. Through those harrowing experiences and living in a hospital nearly 24/7, we gained a much different perspective of the very capable medical professionals. I began to see human beings – fallible and unsure despite a confident veneer.

Without knowing an outcome and seeing a more human side of our medical team we still needed to trust our son’s life in their care. We needed to be vigilant and monitor every step but without trust, we would have been lost. It is ironic but as we began to see the human frailty of our medical team we actually began to trust them more. Honesty creates trust. I believe that now more than ever.

Perhaps this is a very long and drawn-out way of explaining my point but all those years ago we had to trust our doctors and nurses and they came through for us. They held our son on the edge of disaster but never allowed him to go over that edge. We saw first-hand the attachment they developed with our son grow and how they fought for him. At times their advocacy overshadowed our own.

The question remains - after all of these years why at this point would I toss everything I have seen and learned and ignore the advice of the people who have proven themselves to us time and time again. I know these people. I know they have our best interests at heart. To me, to ignore their expert opinion now would be to turn my back on everything they have done for us. We've walked with them this far -we will continue to do so in the future.

When it comes to a decision on the safety and effectiveness of a vaccine – I will trust the people who know us and have been there for us. When the vaccine becomes available I will consult with our doctors – not just one.  All of them. We will discuss the risks and benefits and we will make a decision. I suspect they will strongly recommend getting the vaccine, but the final decision will be made by us - as it always has.

Not surprisingly, we have been in frequent contact with our doctors ever since the issue of Covid 19 came to light. The input from our doctors has not been the panicked hysteria you see on the news and social media. Their advice has been pragmatic and reasoned – just as they have always been. They have supported our children going to school and some of the therapeutics still being debated today were first mentioned to me in February. I've always felt we were ahead of the curve.

We have had to deal with vaccine issues in the past. There are certain vaccines that my son cannot take. In the past couple of years, he has also developed an allergy to the flu vaccine and will not receive it anymore. That has just placed greater importance for the rest of the family to get our vaccines.

That is what I find completely silly about the whole “vaccine” argument.  Vaccines are not benign. You definitely can have adverse reactions. It isn’t common – but it does happen. There WILL BE adverse reactions to the Covid vaccines that will be rolled out soon. Whenever you manipulate the human body – there is always a chance that something will go wrong. This is what frustrates me about those who are pro-vaccine. The arrogance that you should blindly take something without questioning it. Somehow that if you question vaccines you are some kind of “flat earther” and that you need to “trust the science.” Somehow blurting out the word “science” somehow should end the debate.

I know vaccine-hesitant people.  Sometimes they have very good reason to be.  They may have had negative experiences with vaccines in the past. Although rare – these situations are real. As stated earlier – we have had our own bad experiences with vaccines. Trips to the Emergency rooms are not fun.

The one thing I do know is that if you start forcing vaccines and shutting down any debate on the subject – you will only increase the resistance. Anything that needs to be implemented by force almost immediately brings skepticism and resistance.

I have no doubt that we will see benefit from the Covid vaccines and when that becomes evident – you will see people line up for vaccines who are currently hesitant. When something works – people will see that. It may just take time.

My frustration over all of the controversy surrounding vaccines is the unwillingness to (as a society) to debate the issues.  We used to debate issues – we seem to have lost that ability.  Now we are two polarized camps who can’t discuss or disagree. We must stamp out the opposing opinion. Shout people down. We need to re-learn the skill of healthy debate and accept that we may not always agree,

Although I am vehemently pro-vaccine I am always willing to talk to someone who has an opposing view. We need those discussions. The reasons I support vaccines goes far beyond the few words that I have written here. We need to learn to talk again – even if it is something we don’t necessarily want to hear.

Can we change people’s minds? I think so. Can my mind be changed? Yes – I have changed my opinion on many issues. However, we will never progress unless we start to communicate.

Covid is here to Stay! Now What?

A few weeks ago I was interviewed related to the issue of Manitoba schools opening up in a limited format. The story focussed on kids with underlying health issues and the challenges they face in attending school in the era of COVID.

https://www.cbc.ca/news/canada/manitoba/schools-covid-19-complex-health-issues-1.5595219

I was interviewed because my son Russell is immune-compromised due to the medications he takes to prevent organ rejection. 

In spite of limited school openings, Russell never went to school in June. His only in-person interaction with his school was his drive-thru farewell - as he will be moving to middle years school next year. 

My wife and I have a lot of thinking to do about what we will do before school begins in the fall.  Seeing what isolation has done to our kids reinforces the need for them to get out - be social - and be with their friends.  As much as we have attempted to keep things as normal as possible, we can see the effect of long stretches of isolation. 

Our doctors have strongly recommended to wait and see - as there is very little information available on children who are immune-suppressed and how they cope with COVID.  We have obviously learned a lot about COVID in the past few months and the hope is that we will know more in the coming months. 

That still leaves us in a tough predicament as there is no clear cut - right answer. We've lived with the risks of immune-suppression for many years and this is just another complication in our decision-making process.  I still recall our doctors' advice on how to care for our son. They gave us a lot of information about what things to avoid and activities that were high risk. They also stated in clear terms that you also have to have a life. What is the point of having a life-saving transplant if you don't have a life? Managing the risks involves being pragmatic but not paranoid. That is a lot easier said than done.

COVID has just re-ignited a debate that has been ongoing for years.  The frustrations of people who don't vaccinate. Parents who send sick kids to daycare and to school. This has forced us to re-visit all of the risks we face - not just COVID.

I hope that if there is one thing we learn through the whole pandemic experience is how we can prevent the transmission of many viruses - not just COVID. There is a huge opportunity to promote the uptake of the flu vaccine - to make sure everyone is up to date on their vaccinations. What is the point of bending the curve on COVID just to have a measles outbreak?

We should be learning boatloads from this pandemic. The importance of vaccines, hand hygiene, not going to work sick, the transmission of disease in confined spaces - the list goes on and on. In spite of many of these lessons we also realize that we will always live with some risk - we need to start the conversation about what level of risk is acceptable. That discussion is well underway in our household. A conversation that has been going on for 12 years and won't end anytime soon.

If our kids go back to school in the fall - it will be a calculated risk - but it is a risk we have been living with for many years. This is nothing new.

Is This the End of Patient Centred Care?

For a generation, the health care system has been espousing patient and family centred care and the principles they entail.  The belief that patients can participate as an equal partner with health care providers to pursue better outcomes and to maintain control. That is - until now.

So what exactly is patient and family centred care (PFCC)?

To give you the textbook answer:

This perspective is based on the recognition that patients and families are essential allies for quality and safety—not only in direct care interactions, but also in quality improvement, safety initiatives, education of health professionals, research, facility design, and policy development.

Patient- and family-centred care leads to better health outcomes, improved patient and family experience of care, better clinician and staff satisfaction, and wiser allocation of resources.

                                            Source: Institute for Patient and Family Centred Care

In recent years, if you were to go to any health care conference, converse with policy experts or talk to any health care leader, you could quickly achieve agreement on these basic concepts.  It is straight forward and intuitive. It just makes sense. That would be until a few weeks ago when COVID took all of those altruistic sentiments and threw them out the window. In a few short weeks, we have turned our backs on thirty years of progress and spat upon patients and their families.

But why? How can something with such a broad base of acceptance be so easily discarded?

There are likely many reasons but two significant issues come to my mind.

Care Doesn’t Happen in a Board Room.

In health care environments, we have gotten good at politically correct speech and empty platitudes. Unfortunately, this type of language lends itself very well to the board room - but not to the front line, where things get a lot more complicated.

Health care and patient-centred care look far different in a board room than it does in the critical care unit. Things take on a whole different meaning with a patient screaming in pain, gasping for air, or when they draw their last breaths. What does patient and family centred care look like in a crisis?

I assert that the reason PFCC failed during the COVID crisis is that those of us who carry the dubious title “patient advocate” made significant inroads with health care leaders. Still, in many cases, we never reached those groups who implement these ideas - at the front lines. In reality, patient and family centred care happen in quiet one on one conversations between the doctor and patient and likely in many more instances with the bedside nurse. PFCC is not about a policy statement or new rules. It is about an ingrained way of thinking about the patient and how every action is taken affects that patient, which includes that patient’s family. It has to be so entrenched that it becomes a reflex in the way we think, which brings me to my second point.

PFCC Was Never Embraced Where it Matters.

Despite the success of PFCC from a public policy perspective where the failure came was in the hearts and minds of front line providers. We have seen this in the example of blanket visitor restrictions. We have reverted to the default position that families at the patient’s bedside are accommodation -  a nice gesture—something we will address when its convenient. A pandemic forces a decision to identify priorities, and families have been determined not to be a priority. Families are not considered part of the care team despite substantial data and research to support the concept that family support results in better outcomes and makes significant contributions to patient safety.

I have talked to several front line staff members. In the environment of the pandemic, many have reverted to old ways of thinking - that families can be inappropriate - can be a distraction - and certainly can’t be considered essential. Three months ago, comments like that would have been unthinkable.  Now they are called the “new normal.”

The principle of families as “equal partners in care” sounded good - to abandon that principle shows me it was never wholly embraced—just something we said to make families feel good.

So What Now?

Not all is lost. Although what has happened over the past couple of months is disheartening, many people are working in health care who embrace a patient-centred system. Many well-drafted policies support patients and families. We’ve “talked the talk,” but now it’s time to “walk the walk.”

In small isolated corners of the health care system - change has happened - and it’s a beautiful thing to see. But how do we re-invigorate the discussion? It starts with your next visit to a clinic - your next trip to the emergency room.  It begins by questioning the status quo.

Unfortunately, this is on you, patients. Lead, follow or get out of the way. That sounds harsh, but no one is going to give up authority or control willingly. Accepting sub-standard treatment is a choice. We all need to learn how to be better advocates (me included). We need to raise the bar. For those who are familiar with how to navigate the health care system - you may already be doing this. However, the vast majority of the population has no idea what goes on in health care, and those people need help when the inevitable day comes when they need to use the system. We need to show those who are unfamiliar with health care how to advocate for themselves and demand better care.

If a member of my family were admitted to the hospital today - despite a pandemic - I would never accept the idea that I could not be at their bedside. I can wear PPE. I can self-isolate. I can take all the necessary precautions to mitigate any risk—the same as any other staff member. The benefit of me advocating for a family member far outweighs any risk I present.

That’s a hill I’m willing to die on. Why? Because lives are at stake.

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.

To Stay or Not to Stay? That is the Question.

The Pros and Cons of Staying over-night in the Hospital with your Child.

When we embarked on our medical journey a little over ten years ago, we were clueless.  Before my son was admitted to hospital for the very first time he was only a few weeks old - we had no idea what we were embarking on.

To give you an idea of how completely unprepared we were I recalled our first few moments when we arrived on the ward on our first hospital stay.  I still remember the horror both my wife and I felt when we saw the crib that our son would be placed in.  The sides with the bars were extended all the way to the top and it had the plastic isolation barrier fixed to the top so that it was a completely enclosed chamber.  To us it looked like a baby jail.  It wasn’t a great first impression.

We had two relatively short stays in hospital that lasted just a couple of days. Those stays were extremely brief and involved starting our son on heart medications. They were actually boring. We did stay overnight in the hospital during these brief stays but we certainly learned that a hospital is a very difficult place to get any kind of meaningful rest. We realized early on that we needed to trade off.  My wife did one night and I did the next. Even in these early days we were starting to think a little more strategically about how to manage a hospital stay.

Then the Big One.

When our son crashed he was only 8 weeks old, this touched off a 5 month stay in hospital.  This situation was not even remotely similar to our previous two short hospital stays. The first 48 hours were a nightmare. If memory serves me correctly, we didn’t sleep for nearly 36 hours and found ourselves airlifted from Winnipeg to Edmonton.  The phrase “We’re not in Kansas anymore” took on a whole new meaning.

Ironically, in that first night in Edmonton, neither one of us stayed in the hospital overnight.  We came from the airport and arrived at the hospital in the late evening. We had time to see that our son was OK, spent an hour or two at his bedside and then we left to our hotel. We really had no choice.  We were exhausted and desperately needed sleep and the PICU was a completely open environment. There was no obvious place to stay even if we had wanted to. Were there other accommodations in the hospital? We didn’t know and we were just too tired to ask.

The next morning was our first full day in the ICU environment. We really lucked out and had a bedside nurse who coached us through what “life in the ICU” was like. She implored us not to spend too much time in the PICU. We had no idea how long we would be in hospital and we were told it could be weeks or months. Our bedside nurse repeatedly told us that we needed to “pace ourselves.” If we spent every waking hour in the hospital we would rapidly burn out. She was absolutely correct.

Having already spent one night away from the bedside and being confronted with many of the realities of an extended stay in the hospital we made the choice not to stay overnight. For the next 5 months my wife and I never stayed at the hospital overnight. Not once. I would say that this decision played a key role in our ability to survive our hospital stay.

Thinking back on that decision now, I am left with a bit of an uneasy feeling recommending that approach to anyone else. What worked for us may not work for others. It’s important when dealing with a crisis to be able to assess your own skills. What you should be spending time on and what things you need to let go.

Why Did We Choose Not to Stay

There were two main reasons why we chose not to stay overnight. We trusted the staff and the fact our son was only a few weeks old.

We had been at the Stollery Children’s Hospital for only a few hours and even in those early moments we were already developing a significant trust with the staff in the PICU. In the PICU you have one to one nursing and even when a nurse was on break we could visibly see the watchful eyes of the nursing staff as they monitored our son. Many times we would stay in the evening just to see who our nurse would be for the night. When we became aware that our nurse was someone we knew and already trusted it became an easy decision to leave. If it was a nurse we had never met before we would stay a little longer and try to get to know the nurse a little more until we were comfortable leaving. Even when we were eventually moved to a regular ward, all of the cardiac patients were on telemetry. From the nurses desk they could tell if our son was awake - just by looking at the monitors. There were times that we arrived in the morning and our son would not be in his bed. He might have woken up during the night and one of the nurses would have picked him up and may have taken him to the area where they may be charting or doing other work so that they could keep a closer eye on him. This was very reassuring to us. It actually felt like the kind of care that you would get if you were at home.

The second reason we were comfortable leaving was that when we arrived in hospital our son was only a few weeks old. Being so tiny he slept or was heavily sedated. He was at a *developmental stage where he would not have had the same awareness of the environment that an older child would have had. If he had been older…possibly 8 or 10 we would have likely re-evaluated our approach. This is why in later years we have stayed with him during hospital stays as he is just at a different stage in his life. As children grow and develop we have to change our approach.  What worked 5 years ago doesn’t work today. As he approaches his teen years, we will likely have to consider other approaches as caring for a teen in hospital will be a much different experience.

The point I am making is that hospital stays are hard on a family. That cannot be avoided. There is no magic right or wrong. We have to figure out the best way of managing our situations based on your own specific needs and the specific challenges you are facing.

I know some parents might say, "I could never leave my child alone at night in a hospital." I get that and I understand.  However, “how are you going to survive?” is a very valid question. I have seen other families take very different approaches than we did. I know several who have traded off with other family members to stay overnight.  One night it is Mom, the next night it might be Grandma and so on. If you have a large enough care network, this is a very viable approach. There are many solutions. 

There is no perfect formula, we write this script as we go. The one thing that you can’t do is beat yourself up over a decision that you made. In this process we all make mistakes and you have to accept that. I know that I made the case for why we chose not to stay overnight but there were times we questioned whether that was the right choice. Our son went into V-Tac on one night when things were very tense. He could have easily have died while we were comfortably sleeping in our hotel room. Perhaps my take on this topic might have changed drastically if that had happened. These are the choices you are forced to make when your children are in hospital. It’s not easy.

If you are facing a challenge like this I would make a couple of suggestions. Talk to your nurses, or a child life specialist. They see these situations all the time and they can provide valuable insight. There may even be a place to stay in the hospital that is not at the bedside that is in close proximity to where your child is. This would be dependent on the facilities in your hospital. I would also encourage anyone to reach out to peer parents who have been through situations like this. They can provide a lot of practical advice about not only how to manage a hospital stay but many other life situations that parents of medically complex children face. There are people out there who want to help, perhaps the biggest barrier to cross is to admit you can't do it all on your own and to ask.

* Note: The effects of medical trauma on our son were profound and only realized years later. Although we were told and believed that he would never remember his experience in hospital - research is now showing that not to be true. Another factor to consider when leaving a child over night in hospital. I shared our experience based on what our understanding was at the time. I think we would have made the same choice but I think parents should have the best information available to make an informed choice.

Basketball and Parenting

  This past Wednesday was my daughter Nicole’s last basketball game of the season.  I’m a little sad that it’s over.  I’m going to miss our conversations on the way home - talking about boxing out and the pick and roll.  I was lucky enough to be able to get to almost all of her games.  I only missed one. 

So, why am I sad?

When you have a medically complex child, many times the healthy sibling(s) takes a back seat.  This has happened on more than one occasion and it kills you as a parent to short change your own kid.

For the ten years that Russell has been with us it seems he has dominated many things we do.  Nicole was 2 when Russell was born and even at that very young age she has been a tower of strength.  She has rolled with almost everything that has been thrown her direction.  Her easy going personality and ability to adapt to some very awkward situations has made our job as parents immensely easier.

That is why when we get a chance to do things - just for Nicole - it takes on more importance. 

The second reason why the end of basketball season is a sombre event for me is that way back in the dark ages, I coached Junior High Girls Basketball.  Seeing Nicole play now brought up a lot of very fond memories.  I tried really hard not to go into coaching mode with Nicole to which I was only moderately successful.  Regardless of her basketball skills, what impresses me most is how her personality serves her so well on the basketball court.  She is actually a pretty good shooter and passer.  Passing the ball to a teammate so that they can score is totally in keeping with her personality.

There was one thing that she did during one of her games that I was most proud of and it had nothing to do with basketball.  While Nicole was on the bench one of her teammates got hurt and had to leave the game. The game went on and when I glanced back at the bench where Nicole was sitting I noticed the injured player who was in tears and Nicole with her arm around her. 

When we have kids we have no idea how they will turn out.  Susan and I have tried really hard to enjoy our kids for who they are and at whatever age they were.  It’s easy to think ahead and think how much better it will be when our kids are older and will be more self-sufficient.  Then they get a little older and we start missing some of those earlier days when they may have been a little more work but did so many other things that that made us smile.  And perhaps didn’t talk back quite so much.  I always try to encourage other new parents who might be feeling a little overwhelmed and that may not be getting much sleep to enjoy the moment with their kids.  Those special moments with your kids are fleeting and in a blink of an eye they are gone.  I’m constantly amazed when I observe our kids wandering around the house and wondering…who are these children? And how did they get so huge?  It seems like it was not that long ago that I could carry them around like a football in one arm.  Those days are long gone.

Being a parent is an adventure.  It is never dull.  There are many times that we wish we could get a do-over but unfortunately we can’t.  Tomorrow is another day and we get another opportunity to try to get it right.  Now, I can’t wait for spring so we can get the basketball hoop up in the driveway so we can work on that "lay up."