Parenting a child with a progressive disease is not devastating everyday. You climatize to the horrible realities and come to accept a turn of phrase I’ve come to loathe: “a new normal”.
What has impressed me the most, are the ways devastation have taken root in my everyday life. Grief, as Emily Rapp rightly wrote, is like a bubble, wobbly and fragile and so easily burst, spilling all over your day. I continue to be marked by the moments that steal me away so completely, that I am marvelled by my ability to move forward, quite literally, to move onward in one fluid motion as though my thoughts were about pragmatic things, dutiful things. When in actuality, my thoughts are replaced with a reel of dreadful memories strong enough to compel me hurl myself off a building, or veer into a car. Dramatic, I know. But real nonetheless.
Red is still struggling with nightmares. Last night she was jerky and jolted through her sleep. She said “I don’t want to drink it down” — a specific memory from when I forced her to drink contrast dye for an upper GI scan. In an audience of 4 medical students, 2 technicians and a radiologist, I was told to hold her down and force 60 mls of dye into her orally, more than she had had in over a month by mouth, during a time of profuse vomiting and painful GI cramping. I held her down by force, I looked her straight in the face and said “we just have to drink this down, one squirt at a time”. I would get her to breath, look into my eyes and I would pry her mouth open with one hand as the weight of my arm and chest held her naked and cold body down on the radial table. I would then squirt the thick white liquid into the side of her mouth to prevent her from gargling and choking too much. We repeated this for 20 horrifying minutes by audience.
Sometimes when I walk down the hallways at work, which resemble in many ways the hallways of a hospital, I can hear her voice begging me ‘no more’ and ‘i don’t want to drink it down’. I take a step with my left foot, the memory invades my thoughts and my heart is in my stomach by the time my right foot hits the ground in stride. And you would never know to see me. I say hello to friends and colleagues as they pass and my insides are a burst and messy and all over the place.
My new normal is masochistic.
I have a hundred of these stories to tell. As her disease takes hold and gets worse. As I bite down on the leather strap with her when her body is struck with pain, through the long, sad, dreadful nights.
Then I go to work, I say hello; I answer “how’s your daughter?’ with “oh, you know, she’s stable” and I push forward, through all the bullshit of the world as though the stench didn’t make me ill and I think, how did I get this lucky to have this daughter, in this life? How is it that I, get the gift of a thousand lifetimes worth of perspective at 34?
It’s because I have constant and immediate rectification if I go off balance. The grief and the horror are there everyday, bullying me to acquire meaning and gratitude for the smallest, most asinine parts of life. To pull something, from the absolute horror it is, to see your child writher in pain, physically and emotionally.