Given a Voice
There are two ways we were able to give him back control (at a reasonably young age) of his life. Both required learning, respect and consequences. The first thing we did to help #1 son regain control in his life was to give him a voice. While in attendance at the doctors, specialist or nurse, he had to speak to the professional person first. When we first started out if often went like this ….
Doctor “So #1 son how have you been since I last saw you?”
#1 son “I’ve been fine.”
The doctor would then look to me with raised eyebrows and I would say “#1 son, yes you’re doing really well today, however, how did you feel last week/day”.
#1 son would reply “OK, so ….” And a small amount of what was actually going on would come to light. Eventually around the age of eight or so a situation came up where a previous procedure’s scar was regularly becoming infected with staph. The specialist wanted to remove the site and #1 son didn’t want to have ‘another operation’.
“It’s not fair” he said. “None of my friends have to do anything like this. I don’t want to have another operation!”
Now, knowing that we were starting to have issues with defiance and negative thoughts the specialist asked “So, what do you suggest we do?” after explaining why the operation would be of benefit. #1 son said “How about this, you give me medicine to get better this time. Then, if the infection comes back you can operate?” The specialist agreed and sent us home with medication to clear up the staph.
Two weeks after the infection was cleared up, the staph came back. #1 son said to me in the morning before going to school “Mum, you better ring the specialist and book me in for that op.” Said operation was carried out and from that time on #1 son has had at least a contribution to the type of care he receives. Being able to at least assist in the decisions has given him a reason to live.
Given a Choice
The other way we were able to give #1 son a reason to live was introducing him to wheelchair sport. For him wheelchair basketball was a way for him to forget about what didn’t work in his body. It is something he has always had control of. He is in command of his body, wheelchair and what he needs to do to make his contribution to the team and ultimately winning. Again, #1 son made the decision of which sport he wanted to play. For him playing a team sport and being with a group of people who although not the same as him, have similar backgrounds with their bodies and hospitals and a time in their lives where they didn’t have control of not only their bodies, but their lives. Sport was able to give him that grounding, that it wasn’t all about him. That other people are also doing it tough. That by supporting one another as team mates, they also give each other the strength to carry on. Basketball gave him the reason to live, cause how can you not feel great about your life when you are surrounded by like-minded people who only want to you to succeed. Oh, and also, it’s so much fun!
Finding a Reason
As I said earlier, we all need a reason to live. For some of us finding the right reason takes time. But, once found, you can infect others with your passion and pass on the reason to live. If you are struggling with depression and feelings like you do not have a reason to live, please seek the advice of a medical professional.
Disability Expo Sunshine Coast – “Everything disability under the one roof”