I have a confession to make- I enjoy our visits from New Brunswick to the IWK.
I know… it sounds almost bizarre to enjoy packing up everything (a lot of work in itself) and travel to the IWK Health Centre – who wants to have a child going to the hospital??? We’ve been fortunate with our son – although he has Angelman Syndrome (AS), and is considered to be low-functioning for someone with AS. For years he hasn’t had any hospitalizations for anything considered to be life-threatening. Our visits have been to gain the expertise of many wonderful specialists who have helped with his very complex needs.
Cameron will be 10 years old in June. He is non-verbal, has seizures, cannot walk, has a feeding tube, and has very poor fine-motor skills. Although he definitely has his cranky moments as all children do, he has a smile that warms people’s hearts, and a giggle that is contagious. He is medically complicated, yet at the same time I consider him to be my “easy child”, because I don’t have to deal with the same discipline issues with him that I do with his two younger sisters.
We make the trek to the IWK when something arises that can’t be dealt with easily in NB. Such as specific feeding tube issues, or special therapies (like introducing him to the ketogenic diet for seizures last year). In good weather, the trip is just over 4 hours each way with no stops (Impossible, when you have to take into account stops for snacks, of course).
Walking through the doors of the IWK is kind of like arriving home, to a comforting and welcoming place. Sure, I’ve had some scary and sad moments there, but the positive far outweigh the negative. I am at ease under that roof. I feel relief as soon as I arrive, and every time it is difficult to leave. Since our journey began almost 10 years ago, it’s the only place in the world that I’ve ever felt that way. If something were to happen with Cameron’s feeding tube while we are visiting, there are countless people who know how to deal with it. If a seizure or gastric issue were to arise, there are many specialists there to help him.
Aside from the comfort of having so many specialists under one roof, the IWK has succeeded in creating something that so many hospitals have not – a real sense of community. I’m amazed that a place that hosts so many difficult situations for so many families is still such a positive place to be. The IWK is truly unique.
Most importantly – like I’m sure many other parents of children who are “different” feel – I don’t feel like I have to explain my son or our situation to people when I’m there. It’s comforting to be in a place where there are SO many children, with SO many differences, and they are all celebrated. It’s a place where I feel “normal” (whatever that means!) with other families who really “get it”.
So yes, I do enjoy our stays at the IWK because it offers me peace of mind that I don’t usually have. I do wish the health centre were closer- not only to have that peace of mind more often, but also to shorten the drive. Four hours is a long time for little Cameron to be trapped in a van listening to his tone-deaf mother belt out pop songs. And, then there’s also the drive back to New Brunswick. Maybe I should buy him some ear plugs…