While we were in hospital with Russell waiting for his transplant. One of our cardiologists would
relentlessly drag us into a stranger’s hospital room and with unbridled enthusiasm tell us “you have to
meet these people.” He was trying to show us other families who had been through our situation and
had survived the transplant process. We still keep in contact with several of these families; even if it just through Facebook.
relentlessly drag us into a stranger’s hospital room and with unbridled enthusiasm tell us “you have to
meet these people.” He was trying to show us other families who had been through our situation and
had survived the transplant process. We still keep in contact with several of these families; even if it just through Facebook.
Shortly before Christmas (2008) we were introduced to a family. Their daughter had
been through two heart transplants. It was a bit shocking to hear their story as we thought it was
tumultuous to go through this process once but to do it twice was unthinkable.
Their daughter was in hospital for a routine check-up and was the picture of health. A vivacious young teenager. Every indication was that her cardiac issues were behind her. In spite of the challenges this family had gone through they seemed to have survived the process well and it was great to meet another transplant family.
been through two heart transplants. It was a bit shocking to hear their story as we thought it was
tumultuous to go through this process once but to do it twice was unthinkable.
Their daughter was in hospital for a routine check-up and was the picture of health. A vivacious young teenager. Every indication was that her cardiac issues were behind her. In spite of the challenges this family had gone through they seemed to have survived the process well and it was great to meet another transplant family.
Through some of my volunteer work with the Stollery I re-connected with this Dad several months later. There were some issues going on in the transplant program, at the time, and we began exchanging emails and sharing some of our thoughts and experiences. It was a good experience for me to connect with another Dad. So often, when I volunteer I am the only father in the room, it is usually me and the Moms.
Our email exchanges took a decidedly negative turn when this family once again encountered health
issues. Their daughter was admitted to the Stollery once again, with Coronary Artery Disease and
indication of organ rejection. Some of our worst fears. I was on an email list of family and friends who would receive email updates, almost daily, from this family. Day after day and week after week I was a distant spectator of this young lady’s slow decline.
This was a very surreal experience for me. A year earlier I was the one writing messages like this,
documenting Russell’s experiences in hospital. Now I was the one receiving these cryptic emails and
wondering how this journey would progress. I then realized how important my own updates were and
what I had put people through only a few short months ago. It was not a pleasant experience to be on
the receiving end of these emails and being helpless to do much more than to hope and pray.
The weeks turned to months and things got progressively worse for this brave young lady. Then it
happened. I got to work, and checked my email. There was an update, but it was not from the Dad that I had be-friended. It was from his brother. He very calmly and carefully explained that the young lady who had been afflicted with years of illness had passed away the previous evening surrounded by her family. This was devastating news. This was not just a sad story of a young person who had passed to soon. This was one of “our” people. This was a transplant kid…just like Russell. We had lost one of our own.
documenting Russell’s experiences in hospital. Now I was the one receiving these cryptic emails and
wondering how this journey would progress. I then realized how important my own updates were and
what I had put people through only a few short months ago. It was not a pleasant experience to be on
the receiving end of these emails and being helpless to do much more than to hope and pray.
The weeks turned to months and things got progressively worse for this brave young lady. Then it
happened. I got to work, and checked my email. There was an update, but it was not from the Dad that I had be-friended. It was from his brother. He very calmly and carefully explained that the young lady who had been afflicted with years of illness had passed away the previous evening surrounded by her family. This was devastating news. This was not just a sad story of a young person who had passed to soon. This was one of “our” people. This was a transplant kid…just like Russell. We had lost one of our own.
Unfortunately, this is not the only child that we have gotten to know over the years, whose story ended to soon. Obviously, getting attached to these kids is an emotionally risky proposition. Some of these children are not only at risk of losing their lives but so many have other challenges they have to deal with on a day to day basis. It is good to know that we are not alone with these challenges but it is also very difficult to see children struggle.
Very early on in our medical journey one of our nurses cautioned us. “Don’t get emotionally involved
with what is going on in the next bed.” In other words, you have your hands full with your own child you don’t need the added stress of worrying about a child who is in the next bed who my be struggling just as much as your own. I understand the intent of what the nurse was saying and I think it was well intentioned but it is pure unadulterated baloney. Getting to know and to empathize with other people and having the ability to consider life beyond your own circumstances is an essential skill that has kept us grounded. You CANNOT isolate yourself. You can’t do this all on your own.
with what is going on in the next bed.” In other words, you have your hands full with your own child you don’t need the added stress of worrying about a child who is in the next bed who my be struggling just as much as your own. I understand the intent of what the nurse was saying and I think it was well intentioned but it is pure unadulterated baloney. Getting to know and to empathize with other people and having the ability to consider life beyond your own circumstances is an essential skill that has kept us grounded. You CANNOT isolate yourself. You can’t do this all on your own.
If I have learned anything in this process I firmly believe that human beings are capable of showing an infinite amount of compassion and empathy. When we have seen other families suffering it has been very difficult to deal with but by supporting others and engaging with other families it is taught us thankfulness and gratitude. It has also shown us that no two children are alike. One family’s experience will be different from another. We are unique and our experience will be unique. Our life is very challenging at times but the fact remains that our family is whole and intact. Caring for someone else is always the right thing to do.
We are very fortunate, that when we go for Russell’s checkups at transplant clinic, we see many familiar faces. Because they schedule all of the transplant kids on the same day; we get to see all of our fellow transplant families. Some we don’t know and some we know very well. It is so encouraging to see how these kids have progressed and have grown. If you ever want to be encouraged, this would be a great place to go. A room full of smiling faces; each with an amazing (and compelling) story. A story with many pages yet to be written.
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