The funny thing about life is that I used to feel sorry for myself that my former husband; father of my two girls; went unexpectedly crazy and disappeared. Before I realized what was happening, I was angry, then sad, so very sad.
It was kind of like a car accident that had a slow and long skid that ended catastrophically in the cement median. The kind where you still have hope, until the final impact, that you can right your course or somehow walk away unscathed.
I used to think "that" was a great tragedy- losing him; that vibrant, gentle, creative man who once hand cut 100-mermaid tails, glued sequins onto them, and then attached them to the top of half of dolls to make me a chain of mermaids as part of a larger surprise party in which our rickety victorian flat was transformed into an enchanted underwater world filled with my best friends. The same man who later in our marriage, on one valentines day, suspended handmade hearts from the ceiling, one for every week we had been together - they fluttered like red and pink butterflies in the candlelight. I remember how the champagne tickled my nose and I felt so incredibly blessed.
I used to think seeing the pain of my girls -- in losing him without notice to his battle with mental illness - and the struggle to heal them while making financial ends meet - was among the worst the gods could smite me with.
I had no idea. That seems so bucolic and naive.
The ante was upped when my one sweet bright light of a girl was suddenly no longer, and rudely out of, remission. It got worse. There is no treatment right now. Well, there is one, its works less than 22% of the time and is incredibly toxic with horrendous side effects and involves three injections a day -- for almost a year. And still- I had hope- the new drugs; the lauded new drugs.
Then we (I still say we- as if I don't journey this alone) found out there was not enough time for her to wait until they were tested and released for use in children. And still - hope again - perhaps a place in a clinical trial even though at seven she will be the youngest in such a trial. I hold that hope and don't think beyond it. That is where this tragedy ends.
That seemed the worst thing. Until my other girl got sick. I comforted myself with the adage that lightening does not strike the same place twice. That no one gets two kids with completely unrelated, different life threatening illnesses. Hubris.
I wondered if it was hubris. Did I somehow smite the gods? Did I bely some form of parental morality in believing it would somehow all be OK - even though its been so not? Was my insistence in keeping childhood magic alive enraging to the shadows of the universe? My psychologist assures me "no". There is no cause and effect in these cosmic accidents - where two children become horribly ill from differing and unrelated causes. Two accidents of the cells as it were.
Its the period of the unknown. This the period where I read blood counts like tea leaves trying to predict a future unknown. Genomes and superstition blend into long nights filled with quiet tears and troubled sleep. And I wait, for the final verdict, trying to read the signs knowing those are futile efforts to make meaning of a world I know longer understand.
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