I still choose to get up each day and smile fiercely at the sun. Sure, maybe sometimes that smile looks more like a grimace of pain. Yet despite trisomy 18, despite grief of unimaginable magnitude, despite leukemia, despite Alzheimers, dementia, and mental illness, I choose to dig in my garden, to read books, to write, to cherish my children, the living and the dead, to kiss my husband, and to keep striving towards … whatever it is we strive towards—maybe just being a better person in the world. Maybe just spreading compassion and love.
I hear stirring on the deck. Matthew is carefully lifting Rose up, wrapped in her blankets. He brings her to the car and lays her on the gurney. Normally, I would help, but COVID renders me useless. Resting a hand on Roses’s head, he says to me without turning, “you’re an angel.”
For the briefest second, I entertain saying “tell my kids that.” Angel is not a word I think I’ve EVER been called, not in 41 years. I am many things, but angelic is not one of them. Still, I am honored that they see me as such.
My body is strong and capable. Treating it poorly is not the answer to my sorrows. In fact, it almost seems like an insult to those who yearn to use their bodies but cannot.
How is pediatric chemotherapy different in this age of pandemic?
Recently, I’ve constantly thought about control. It’s an illusion. We have absolutely none. My son died and taught me that. My daughter was diagnosed with leukemia and reminded me. COVID19 shuts down the world, and I scream “OK I GET IT, UNIVERSE! NO CONTROL!” Most of the time, I am able to hold the knowledgeContinue reading “The bubble”