Listen, I get it! I’m just as guilty with saying, “but they look fine”. However after Mason was first diagnosed, I still constantly questioned if it was true, because well, “he looked fine” most days. I started to realize how many people in this world have Invisible Illnesses, and have people question them constantly. Once this started happening with us, I just knew I had to change the way people see this. That’s how Candid Stripes was born.
As the parent of a child with an invisible illness, day after day, your heart hurts. You hope the world changes and can be more accommodating, to make space in their hearts to just have some empathy. You settle into days where pain is minimal, life seems normal for awhile. You plan all of your outings, and activities, based on what he can handle. Then he wakes up one day, and cant walk. Can’t get himself to the bathroom, can hardly stand without feeling like he can’t support the weight of his tiny body. He falls, he dislocates another joint. Then you’re consumed with worry. Will this one joint stay in place for awhile, or will this happen daily.
A year ago, Mason dislocated his shoulder when he scratched his back. Now every day all day, his shoulders come out of their sockets. It doesn’t phase him anymore. He actually told me today, when I needed some lotion on my back, ” mom why don’t you just do what I do to reach my back?” I told him, “bud, its not typical to dislocate your own shoulders to reach your back. not everyone has that power!” Which of course he thinks is so cool.
I had a friend say to me to help me understand how I was feeling, when we were deep in a flare up. “Its like you’re carrying around a 350 pound weight everyday, but you get used to the weight of it. Then someone points out, a doctor, a pain day, whatever, that you have this giant weight on your back, and all of a sudden its heavy again. It’s all you can feel, and think about. She put it into words so simple, but so big. It does hurt some days to carry around this worry. The fear of what his future looks like.
Some days your heart is carrying something so heavy, its hard to stand. Knowing that his life, we can make it as normal as we possibly can, but the bottom line is, he wont have the same kind of life that his friends and siblings will have.
People, while we know they mean well, because sometimes its so hard to know what to say. They will say ” oh you guys will get through this” or “God will fix him”. We won’t get through this, because there isn’t an end. This never changes, we will have and end to a flare up, and be ready for the next one. God can’t fix someone who isn’t broken.
Mason has so much patience, he’s so happy, and understanding. Willing to understand what his limitations are without a fight. He’s not afraid to sit out, to advocate for his own body. To say “I cant do that, but i can do this instead!” He teaches me without knowing it, how to be a better person. To give more grace, more understanding. To live in the day with what we have at the moment.