Ani's Home

We lost our daughter Ani to Lupus a few days after her 12th birthday. The virtual world of the Internet helps to keep her moments alive and share them with others. The first posting was on August 2005 To read all past postings from 2005 onward, please go to https://toani.blogspot.com/ and you will see all the previous entries listed. Click on the one you wish to read.

Thursday, October 06, 2005

Lupi, the Bad, Bad Wolf

There is something calming about hospital rooms. Especially in the early lights of the night, between shifts. There, under the oxygen mask is a body surrendered. Yet, it is a body warm to touch, perhaps too warm. It is a small person who now knows about nephritis. Hospital acquired pneumonia. Immuno-suppression. It is a small body that has not thought about ice cream for a while. Her friends now are Sharon and Kelly, nurses wearing colorful gowns. There are elephants and palm trees, lions and bright sunshine. There are no wolves on these gowns. And there are no children with bald heads. These pleasant nurses never say her potassium is too high. Or her saturation level too low. No. They just tell her she is on the right track. That her IV port needs flushing sometimes, just as they flush their eyes after leaving the room. In the early lights of the night.

There is something soothing in surrendering to trust. That small body knows she can do nothing by herself. She can ask for food, learn how hemoglobin carries oxygen, why the TV does not work in her room. But cannot make those kidneys work. Not alone. They are on strike now. Was it too much candy? The language she used toward her mom? Or the homework she never finished? No. It is the nasty wolf, Mr. Lupus himself! He found her in this big city full of children. He fooled her immune system. He made her sick. Now, the young doctor will find the wolf, and will cage him. Will take him away. All these nasty syrups she drinks are not binding agents. No. They are Secret Agents going after Mr. Lupi. That is why they are dark! So they can sneak behind him and zap! He will then leave her alone.

There is something strange when the little heart starts dancing. It hurts. It makes her throw up. “I cannot take it,” she says. Then she wears the top-gun mask, turns on the oxygen, and looks at the monitor. Ha! Her brother knows how to play computer games. But she can read the monitor now. Pulse, heart rate, oxygen saturation level, sinus waves. It is her own way of learning about herself. She knows it will beep when the IV fluid is low. When her BP is high. Her cheeks get rosy. Her feet look cadaveresque. But Sharon is there. Or Kelly. They scare Lupi away. Sharon knows about Lupi -- she had caught him before when other small bodies came under her care. She does not talk about gross hematuria -- just tea-pee! Sharon knows how to find a good vein when all other butterflies have hurt small bodies. She does magic with butterflies!

There is something telling about the cough in the early hours of the morning. A cough that wakes small bodies up. Makes their eyes wide open. Makes their geographic tongues curl forward. It makes them put their little hands on their chests, while looking at the monitor. It makes them very, very sick.

It is during those early hours that I put my feet up upon a chair and listen to this small body sleep. Sleep with Lupi, being chased by the secret agents Sharon hides in a syrupy, dark drink. This small body that has surrendered to trust, under the white linen. And I look at the city from the window overlooking the playground. Most of these small bodies are too weak to go to the playground. But they can spell phosphorus without hesitation. And they have learned that Lupi may win.

June 25, 2005

(I wrote this early during Ani's illness -- I was still optimistic)