For some reason, I seem to get hints from my universe to take better care of myself -- me, the carrier who cares for the teenager with Fragile X Syndrome. These karma-type things usually happen in threes, and yesterday was no exception.
First, we attended a memorial service for a friend who was my age when he passed away from cancer. I watched his children during the service wondering how much longer I will live to care for Josh. I couldn’t start beefing up my exercise and diet quickly enough.
Second, after the service, my husband decided to take Josh to the lake for a couple of days to give me a break. I didn’t ask for it; I didn’t even realize I needed it. He did (is that good or bad? LOL).
And third, from time to time I pick up one of my favorite Fragile X reference books, "Fragile, Handle with Care" by Marcia L. Braden, Ph.D. So in my quiet evening alone last night, I read from this book and happened on a page at the front with a short writing entitled “The Carriers.” I was drawn to it. I couldn’t read it fast enough. Marcia Braden wrote something about ME, not about how to teach my son, not about behaviors, not about sensory integration, not anything related to Joshua. I have decided I need to share it for all of my carrier friends and I hope that Marcia Braden won’t mind. So here it is:
They’re called carriers because they carry a specific gene they pass on to their children.
I call them carriers because they carry all the hopes and dreams possible for their children. They carry their fears, anxiety, struggles, defeat and pain. They are capable of carrying the joy of success and the disappointment of developmental delays all at the same time. They carry a favorite toy, an old picture or funny cap that brings comfort and security wherever they go. They carry mental ammunition to their school placement staffings and strategies for treatment. They carry the strength to defy all odds and march on with fortified courage and unconditional love.
These are the carriers I know.
March L. Braden, Ph.D.
Those were my three karma moments yesterday (or as Oprah would say, aha moments) which reminded me that carriers desperately need to take care of themselves, myself included. Most importantly, we need the mental ammunition to survive this journey. For me, that ammunition is keeping a positive attitude and an unwavering drive to figure out how the heck to fix something that isn’t working for Josh. Of course, we all know that first I have to figure out what caused the problem to begin with. It took me a very long time (and an occasional margarita) to adjust my attitude and abilities to get to where I am today. But over time, I learned that I can choose to be happy no matter what, or I can choose to be miserable. Miserable takes so much more energy than happy, and quite frankly I just don’t have enough left over at the end of the day. I’m choosing to have a positive attitude and when something isn’t right, I think about finding a way to fix it instead of wallowing in it. Now, I am by no means wallow-free all of the time, but I have taught myself to be that way most of the time. We carriers are the only ones in control of our X world, no one else. If a medication isn’t working, find a new one. If your child gets poop on the toilet, buy a box of gloves to use when wiping and cleaning it. If your child has a meltdown, take a deep breath, remain calm and give them a bear hug from behind. If he needs an aid at school, write a letter or set up a meeting and tell them why and how it would benefit the staff and your child. Whatever the roadblock on any given day, we have to teach ourselves to troubleshoot in a calm and rational way. There are no manuals for what we do, but there are reference materials and we have each other to turn to for advice (thank goodness!).
I feel very strongly that I have a mandate from God to be the best dang carrier I can be…..to be strong and have unconditional love for my children, Jennifer and Joshua. In short, I am a carrier on a mission, and I need to keep reminding myself to put “ME” on the list in order to accomplish the mission at hand. Carry on carriers!