The roses have been in bloom for most of the summer now. They all survived the brutish winter, more or less, but it's 'The Fairy' ones that enchanted The Spanish Inquisition. She asked for one, and then two: one for herself, and one for her father. They're tiny, these fairies, tiny and perfect.
I don't often talk of my private life or my family on this blog, and that's deliberate; I'm a fairly private person in general. But something this big and all-consuming is hard to hide, so here it is.
My life is incredibly complicated and incredibly simple right now. With the exception of four days, the Kidlet has been at SickKids for more than two months. No, she's not well. Yes, she's getting better ... except that she's not. Not in the way you mean; not in the way we usually mean. It's complicated. She has a rare metabolic disease. It is progressive, and it is severe. There is a treatment, but there is no cure.
What do you do when you're blindsided like this? You take a breath, and then another. You try to discover the new world that surrounds you: your new spiritual home. And then you move forward, hoping with each step that you are still on solid ground. Sometimes, you are. Too often, you're not.
I have been going to SickKids every day. It's my new job: I go there after the Spanish Inquisition leaves for preschool; I try to get home before she does. In between I meet with doctors, and I spend time with my darling girl. She likes music, and Madeline. Sometimes, when the day is good and the wind is fair, she smiles. And it lights up the world.
