I read an interesting blog this morning from another parent writing about her son’s experience of a recent day surgery. This family is one of the “jaded” few who are very familiar with hospital trips as her son has some complex health issues.
I laughed as this Mom shared her story. Her son is old enough to understand what is going on and is now offering his own opinion on the whole experience. My how these kids change. It isn’t just a matter of getting your kid doped up and having the medically induced calm. They are real people who have their own distinct ideas and feelings and most importantly they have a voice.
We are now going through this with Russell. It is really interesting to try to imagine what your child is thinking as he goes through the process of hospital visits, clinic visits, evaluations, and procedures. We don’t have to imagine as much anymore as Russell is now sharing his opinion of the whole process. Russell’s perspective is rather unique. As a result, some of his comments are very interesting. A week ago I was interviewed by the Winnipeg Sun to discuss measles, vaccines, and immune suppression. A picture of Russell and I appeared in the paper. Now Russell is skeptical of anyone taking his picture, and he asks “is this going to go in the paper?” We think this reaction is quite humorous but it reminds us that our boy is growing up and is understanding more and more about his unique situation.
I have been talking to Russell more and more about some of the volunteer work that I do which invariably involves sharing part of our family’s experience and specifically his story. I have to realize this is “his” story and that I am just a part of “his” story. I hope that in the next few years he is OK with sharing his story. He has a very unique perspective to add as I can only tell the story from my point of view. His view could be much different (than mine) and I think we have much to learn from him.
Many people would think that after all that Russell has been through that he would be a seasoned veteran and would be so used to his many medical appointments. The truth is that he is extremely wary of hospital visits and makes no secret of the fact that he wants nothing to do with Doctors or anything medical. Our regular blood work has gotten a lot better but Russell makes no secret that he can’t stand the whole process. When I think about it and try to understand where he is coming from I have to come to the conclusion that he has good reason to be “difficult” and to express his anger at being poked and prodded. This has changed my attitude. Instead of trying to keep Russell “quiet” and to have him “behave” I let Russell express exactly how he feels. I feel he’s earned it. If he wants to yell his head off when a needle goes in his arm; the yell away. I don’t like it and as a parent it upsets me but if it helps him blow off some steam…I can swallow my pride for a few minutes and let him scream. Yes…other parents in the waiting room are probably horrified at my son’s behaviour but I have to get past that. It’s not about me and what others think of my parenting skills.
That is the interesting part of our medical experience. Our story did not end when we received a heart transplant and came home from Edmonton. We have constantly been challenged by new issues that just seem to crop up, almost on a continual basis. Our journey is far from over…there are many more chapters to be written. Just when we start to get into a routine and we get comfortable something comes up and we are sent on a new adventure. Let’s just hope that there are more positive adventures than negative ones.