...But at least I have these little angels with me. I took this picture during a fabulous rainstorm this morning. It has been a crazy summer of rain. In this picture, we see them in a single dimension brimming with health, vitality and beauty. We spend a lot of time looking at others in a single dimension. Ironically, singularity emodies both truth and deception. These children are brimming with health, vitality and beauty. But three of these children have PCD. A disease which ravishes their lungs. A disease we spend hours a day treating in an effort to halt its progression. Two of them have hospital stays, surgeries and IV therapies dangling over their heads in the near future. But they look so healthy, right? There can't be anything to worry about...or so the well-meaning tell me over and over. The best way to support is to acknowledge grieving and offer a listening ear.
I've said it before, but I think there has to be some sort of law of compensation. If you are given a nasty disease to deal with when you are born, and for the rest of your life, you are given an added measure (a huge one) of sweetness and depth. I know it is true with my children. And the 3 of us born without it, that same nasty disease strips us of ambivalence and clothes us with keen awareness. We are better too because of it.
There are a lot of times, in the moment, when I question if taking on the education of my children at home is really what I want to do. It often pushes me to emotional exhaustion...Invariably, I conclude yes. Most days I spend 5 hours on the piano, directing school from the bench next to a practicing child. But the vigorous study of music has equipped my children with an amazing ability to work through very difficult things, which are not fun in the moment, for a greater, delayed reward of mastery. It's taught me that same lesson. I never imagined the role music would play in my life and in my children's, but I am grateful for it. It was a driving force in bringing Ellery back to life after a severe prolonged illness. I feel music is poised again to pull our family through some rocky times ahead.
It's been a very long 6 weeks. I'll be grateful for answers tomorrow.
