Here are a few of the truths I have discovered in this early phase of what will be a long journey.
1. It’s the details that sneak up on you.
I always thought my undoing would come in a dramatic moment when the diagnosis was revealed or another serious piece of bad news was shared. In reality, those are my bold moments. When they are upon me I know I must press into God and I am strengthened. What tends to get me the most is when we're trying to get out the door for a critical appointment, I can't find my keys and then someone manages to spill something on themselves. It's like the world ended and I can't catch my breath. I'm doing better at sensing those moments are coming and taking the necessary actions to gain control but there's nothing like a cesspool of seemingly unimportant demands to reveal the raw emotions under the surface.
2. People will say ridiculous things.
I hesitate to give examples of some of the things I've heard regarding my children's conditions and treatments for fear that someone will recall making the statement to me. Most issues we're dealing with aren't common and are steeped in myths and misconceptions. It was hard to hear certain things over and over. I don't always feeling like being an advocate; educating the masses next to the lettuce in the grocery store. I suppose one advantage of having *mostly* invisible issues is that we can often fly under the radar in instances where we don't need obvious accommodations. When I first started dealing with probing questions and borderline insulting comments, it was hard not to take them to heart. In my worst emotional states I could rant and cry to my husband over a sentence or two for an hour. I am slowly understand that by and large, these comments are completely innocent and are born out of ignorance. The sad reality is that we aren't brimming with tact and social graces these days. And sometimes people just don't know what to say so they open their mouths and start talking. It doesn't mean it doesn't sting sometimes though.