Apparently Marty thinks I am obsessed with juvenile arthritis. I asked him today what was the worst thing about having it and he said it was that I wouldn’t shut up about it.
I know I talk about it a lot with him and Bella, because it is such a life-changing diagnosis. Also I’m still learning about how it could (and probably will) affect him for the rest of his life. I don’t think Marty is ready to face the magnitude of the lifelong impact his disease will have on him. Forever. There may also be an element of denial. Teenagers sometimes think that if they ignore something it will go away. Men tend to think that way also.
Also I know that Marty doesn’t like me to talk about JA publicly because it embarrasses him. I guess sometimes I save my comments for when we are alone, which just irritates him more.
I know some day he will need to take a more active role in his treatment, and learn to make informed decisions about his care. He will have to weigh the risks of taking medications with the potential damage he could suffer without them. He will have to either learn to give himself injections or make sure there is someone available to do it for him. He will have to find his way through the insurance maze and figure out how to make his copays. Honestly, I don’t blame him for not wanting to think about those things. I don’t either.
When he is ready for that I will answer his questions and help him catch up to me learning about juvenile arthritis. He knows I am here for him and will make the best decisions I can. I will continue to do that until he is ready to take the reigns from me. But I have to wait until he is ready.
Just some of the things the mother of a juvenile arthritis patient can’t forget about.