Well, we’re one week into the new year already. Despite the fact that I’ve got so many things begging for improvement in my life, I’ve resisted the urge to make any resolutions, because for me, it seems to be the quickest way to ensure I will do the opposite. But it’s hard when the air is filled with the idea of a fresh start and TV and radio are bulging with commercials geared to a brand new you. I’d like to make some positive progress – just not of the standard proclamation- type promise to lose weight, exercise more, read more, worry less etc (though secretly, I need to do all of those too).
So instead of making some new goal, or regimen, or adopting a new habit –I’m going to try to adopt a new motto. I’m going to take a lesson from the many wise and experienced JRA warriors I have met over the years. I’m speaking of the people who have had JRA since they were children, and have passed silently and mostly unrecognized into the adult world of jobs, independence, marriage and perhaps children. It’s these people that parents of kids with JIA flock to for advice…. Please, tell us how it was for you. Tell us what worked, what didn’t, what you would change. Tell us what we should do. Tell us that it will be OK.
At the National Juvenile Arthritis Conference, there is usually some type of session for young adults to share their stories and address the questions of parents of children struggling with some form of arthritis. These sessions are generally the most popular and fill the rooms past standing room only capacity, for many reasons. It’s inspirational to see young adults maintain such humor and strength despite growing up mostly without access to the medications available now. And there are practical lessons provided in what types of tennis shoes work best with orthotics, how to get your child to enjoy school, how to work with teachers, how to make your child complete assigned physical and occupational therapy when they would rather not. Its one thing to hear advice from another parent – but it’s something different to hear it from somebody who has been there, and understands in a way you can only intellectualize. Mostly though, I think there is comfort and validation in seeing successful young adults, who have followed their dreams despite the obstacles of JIA and knowing then, that your own child can do the same.
There is one lesson that keeps coming up from these warriors. It’s not unique, or earth shattering – it’s actually age-old sage advice. And you will actually hear the same thing from people with adult onset arthritis. But it needs to be repeated – for me, all the time. So, my new motto for 2010 is FOCUS ON TODAY.
When arthritis starts rearing its ugly head, it’s easy to see the storm clouds rolling in and focus on all the bad stuff potentially around the corner. At the first sign of inflammation in my daughter, my mind starts replaying recent episodes of missed school, blood tests, joint injections, new medications. My heart starts leaping ahead in fear, predicting challenges and borrowing trouble that hasn’t shown up yet. We have another hip replacement on the horizon this year and it’s difficult not to start seeing the months as a nasty slippery slope to that end. Instead, I need to focus on today. What can Caitlin do today? What can we do to get through today? Today, she actually could not go to school. But she did get out of bed and get dressed by herself. She did eat breakfast and brush her teeth and hair without assistance. She is able to walk, though with a limp – and she still has made me laugh several times this morning. This is a lot more than I can say about many mornings we have had in the past!
In response to one of my recent posts, Christine reminded me of this lesson once again when she said that looking back to her childhood with JRA, she doesn’t remember long flares so much as she remembers coping with “bad days”. In dealing with arthritis day to day, it didn’t cover her whole childhood’s memories – but some bad days. She is now 33 and went on to say “I still attack it with positivity-not what I can’t do but rather what I can do today. I continue to remain as active as my body will tolerate daily.” Another one of my inspirations, Laurie Miller posted that in her last blog. Things had not been going well, but she posted a list of things she could do that day.
It’s not easy to force yourself to look at the positive and stay in today. Arthritis can be like a magnet, drawing your attention and energy into sad and desperate places. But life has just too much to offer to allow this disease to create a myopic future.
So to all of you arthritis warriors… and I mean everybody with any form of any of the more than 100 types of this disease, and everybody who feels it in your family –I wish a Happy New 365 Todays to you.