Right now, its quiet. My boys are being typical teen agers, sleeping in every minute that they can while I am up rustling around getting things ready for our day. I choose to let them rest, since they will need all the strength they can get to push through the coming week.
Today we are driving the last leg of our trip to Washington D.C. so that we can advocate for the 50 million Americans (including 300,000 children) who have arthritis. The truth is that it will be a grueling week- a 700 mile drive followed by half a week of non-stop meetings and appointments just to turn around and drive back again. So why do I do it?
If you read my last post, you know why we advocate. You read the facts and recognize the need. But there is another, slightly more selfish side to our choice to advocate…and this is what we choose to remember when it just seems too hard.
I use advocacy to create change in the world, but I also use it to create a change in us. Let me explain.
Its not easy to be a teen with autoimmune disease. Some days are good, some are not good at all, and as Forrest Gump put it so well, “you never know what you’re gonna get.”
Being a teenager is hard enough, but coping with all the extra issues that come with a chronic illness make things that much harder. Advocating helps my kids make sense of their disease. They have a powerful story to tell, and when they do, either through advocacy programs like the one in Washington D.C., or as Youth Honorees for our local Arthritis Walk, people stop and listen. It gives them a purpose, and it give the role that Juvenile Arthritis has played in their lives a purpose too. By speaking out, they are making a choice to turn something that is very negative in their lives, into a positive force for others. It turn, it creates something positive for us. We make a choice. That choice is not just to fight every single day (for what others take for granted) but also to take control and transform their situation to something that has meaning.
Its easy to get down and think “why me.” Our choice to advocate helps us prevent getting stuck there. My kids can use their story for good, they can use it for change, they can become empowered by sharing it, and see real results. It doesn’t change the fact that JA is hard to live with, or the fact that NO child should have to go through what we do, but it does give them a reason. It gives them something to cling to when times get hard. Dealing with JA may be awful, but at least there is some purpose, some good that is coming out of it in the grand scheme of things, and that makes the day to day struggles a little more bearable. We can hate JA, but that doesn’t mean that we can’t make it work for them.
Advocacy has allowed us to use JA for good, rather than allow it to just be one of the “bad” things in their lives. That is a choice, and it is a very powerful thing. It means their suffering isn’t for nothing. It means that because they have these issues, important people will take time to listen, and maybe even make a critical change… because of them, because of what they go through.
And in the meantime, we get to surround ourselves with some amazing inspirational people, and even get to take in a sight or two on our travels. It is a choice, and it is many smaller choices that we make every single day. It has become woven into the very fiber of their beings, and is shaping the young men that they are becoming. The choice we have made to advocate has become just as important for us, as to the other 50 million people for whom we advocate.
Even if you don’t have someone you love who suffers with JA/RA/OA I hope you will join us, I hope you will make that choice to help us advocate. I promise that it can become a powerful force in your life as well. Please take a moment to sign up, it only takes a minute, and it doesn’t take much to send an email to YOUR congressman. Let them know we will be on the hill this week, that you know us and you think they should listen. Chances are SOMEONE from your district will be in their offices this week, telling their story too. Make that choice. Help us make a difference. Show my sons that living with this disease isn’t for nothing, and help them make an even bigger impact. It really is our choice.