Last night I got out the kids' expandable, spring loaded tunnel fort and set it up on the dining room table. It's blue. And looks like an owl. Which is hard to imagine if you've not actually seen it, because owls are neither blue nor tunnel shaped, and are (almost never) spring loaded. Picking up our , blue-eyed boy I slid him head first into the fabric cylinder. Legs straight, arms at sides, body still but eyes darting. He listened to the clunks, bonks, and bleeps fuzzing out of the speakers of our emac. At four or five years old, it's an ancient machine when measured by the standards of an industry that survives by way of planned obsolescence. We hope it survives a little longer. It holds all of our photos. Which are really just 1's and 0's. But to us they are memories. It's always hard to imagine that it's just 1's and 0's when you're looking at the photos. There's one of Charity holding our newborn daughter on her first day home from the hospital. They both look so tired. Being born, giving birth. Such hard work.
For over a year our middle child Sam has exhibited a strange rash on his fingers, knees, elbows, toes and face. Multiple trips to our pediatrician yielded little in the way of a solution. Initial diagnosis was eczema. The treatments didn't seem to help. Soon thereafter it seems Sam began to grow weaker physically. It wasn't too apparent at first, but in hindsight we can see it. Eventually the problem became undeniable, especially when we observed him playing with other children his own age, and as we watched his little sister grow and develop and play. At first the doctor suspected muscular dystrophy. We were elated when the test results came back negative.
Now it seems we have a diagnosis. Juvenile Dermatomyostis. It is a three in a million disease. The good news is that most children respond well to the treatments and the disease can usually be sent into remission. Sometimes it never comes back. It is a very serious disease however. In the 1960's the mortality rate for JDM was 30%. In the 1970's that rate dropped to 10% as better treatment strategies were developed. Today the number is fortunately down around 1%.
"Almost never fatal" It's one of those sentences that jumps off the page and grabs you round the neck. It's good news, right? It's good news that the disease your son has is "almost never" fatal. 1%. That's one in a hundred. How can you not be encouraged by odds like that? Paint a penny blue. Put it in a jar with 99 others. Close your eyes and pick one. Who wouldn't take those odds?
After several seconds, I slid Sam out of the big, blue owl. (No chords to cut this time). We talked about it. "Now that's sort of what it will be like. We can practice again if you'd like. And remember, Daddy will be right there beside you the whole time, ready for when you come out". So later today Charity and I are taking Sam back to the hospital for an MRI. Because we're expecting again, Charity can't be in the room with him, so I'm going to do it. I can't imagine having an MRI at just four-years old (old for a computer, young for a boy). Hopefully our practice round last night on the dining room table will take the edge off of the fear. I don't know how to calculate the odds on something like that.
