Mag’an is our daughter who has been afflicted by AIDS since birth. Margoan lost her hearing when she was 18 months old, and while the loss of hearing has nothing to do with Margoan being an AIDS patient, I think it’s good that she doesn’t hear disparaging comments about AIDS. So every time the doctor explained the treatment to us, I reminded him to turn her back to Maguan, because then she wouldn’t be able to see the doctor’s mouth shape.
I know their family’s secrets, but I can’t live without them
I started dating Margoanne’s father, Jeff, when she was two years old. The summer before college, I went to work at Jeff’s restaurant, where I heard people talk about his wife, only to know that she died of a rare form of cancer. Jeff and I used to sit in restaurant chairs after closing and talk late into the night. But he never mentioned his wife’s death, nor did I ask, and I think he must still be suffering from it.
Later, I learned that she died of AIDS. Since learning that Jeff has tested negative for HIV, the cause of his wife’s illness has been filled with mystery. Worst of all, she also passed the virus on to their daughter, Magian. Jeff was worried that I would leave after learning the secrets of their family, but he had no idea that I had fallen in love with them both.
When I first met Mag’an, she was a troubled and frustrated child, often screaming at what she wanted because she couldn’t say it. A few months later, Jeff and I started dating, and I borrowed a children’s sign language book from the library to teach her some basic sign language. She learned faster than I did, which surprised me and Jeff. Slowly, Mag’an’s vicious tantrums disappeared, replaced by a very likable child. She loves to read, is polite, and is always smiling. Our language, sign language, became the link between her and me and the outside world.
Two years later, in October 1997, Jeff and I got married, when Margoan was 4 years old, and we were already three inseparable. I’ve never been willing to admit the fact that she might die, Jeff sometimes complains about the injustice of fate because his wife died of AIDS and his children were afflicted by the same disease. I, on the other hand, spend a lot of time collecting articles on the latest developments in AIDS and drugs.
But doctors say most of the new drugs have not been tested on children, and Maguan is too frail to resist the side effects. I felt a little dizzy and leaned limply on Jeff, and we asked her how long she had to live, and the doctors didn’t know. Jeff and I hugged and sobbed, knowing there was only one thing we could do, and that was to let her live every precious minute of her life.
I was ready for her induction ceremony and her first dentist appointment. Now, I have to prepare for her “coming home” trip
We are desperate, almost crazy, but can’t escape reality, we have to prepare for our daughter’s death. The most heart-wrenching thing is that although Mag’an didn’t know how serious her condition was, she knew that she was different from others. She often asks us why she takes so many medicines and why she goes to the hospital so often. All I can tell her is that she has a disease and the doctors are trying to find a suitable medicine.
Once, we passed a church where a funeral was being held. Magian pointed to the hearse and asked, “Why do people die?” I replied that sometimes people were so sick that the doctor couldn’t find a cure for them. She laughed and said in sign language, “Mom, there will be medicine in heaven, won’t it?” I nodded, but I burst into tears. I said, “Yes, my darling, there is a cure for all diseases in heaven.”
After that day, Mag’an began to refer to heaven frequently, and drew pictures of the house waiting for her in heaven, Every room is marked. Jeff and I thought it was incredible, and some relatives and friends didn’t understand Mag’an’s vision of heaven. “She should try to live, not talk about dying,” her grandmother told me on the phone one night. After hanging up, I thought maybe she was right. But when I went back to Margo Ann’s room to tell her a bedtime story, she pointed to her Bible Story and signed, “I want to hear this tonight.”
The story she chose was about mothers who took their children to pray to Jesus, but were driven away by the disciples, and Jesus reprimanded them. As I read, my back couldn’t help but feel a chill, “Let children come to me, don’t forbid them, because in the kingdom of heaven, such people are…” I suddenly realized that maybe these That’s what I should answer. When she asks questions like “Who will interpret the sign language for me when I get to heaven” and “What happens to the body after death?” I shouldn’t put her off any more. I’ve prepared for her entrance ceremony and her first dentist appointment, and now I have to prepare for her “going home” trip.
In the days that followed, we watched a lot of movies and books about childhood AIDS, and I explained to her in sign language. We needed to stop a lot during the movie because she had so many questions to ask. When there is a circus or a cowboy show in town, we must see it. We never say “go next time” because we don’t know if there will be another time. We drove out for a drive when we had time, ran wild on the grass, and basked in the sun. We begin to realize what a precious gift this is from God and be grateful for every day of our lives.
I think I heard her voice, this time it was her real voice, not sign language, she said, “I’m so happy to be home. Mom, I’m so happy to be home!”
In April 2001, on the 8th birthday of Magian At that time, her lips and mouth were covered with blisters caused by a high fever. She dropped to less than 50 pounds and couldn’t eat anything. She begged us not to send her to the hospital, but we had no choice. She spent almost two months in the hospital, relying on morphine injections and nutritional fluids to maintain her life. On the day we were discharged from the hospital, when we walked out of the hospital gate, Magian
kept sign language: “I am so happy to be home, I am so happy to be home!”
A lot, but still too weak to go outside. When she woke up, we were at home playing games, drawing and watching movies. One day, while we were playing a Scrabble game, we discovered that the English letters of her name, Maegan Nacole, could be rearranged to read “an angel come.”
Since June, Magan has been vomiting a lot, and we have to give her strong medicine to stop the vomiting. One night, she grabbed my hand and weakly signed, “I’m so glad you’re my mom.” I nodded, trying desperately to control my tears. “Mom, please tell God to take me home and ask him to keep my body intact.” I told her I would.
The next few days were the hardest we’ve ever had, and Mag’an could barely sit and she couldn’t sign anymore. One night, her grandparents came to accompany her, and Jeff and I went out to buy food. When we got back, she was sitting on the bed gesturing excitedly about the movie that was playing, and she even got out of bed and walked around on the floor. We were overjoyed, as if seeing great hope again, none of us knew it was her saying goodbye to us. Before going to bed, she smiled at us, gesturing, “I love you!” Then she fell asleep. I thought to myself what a happy little girl she looked! She was dying in her sleep, and I think I heard her voice—her real voice this time, not sign language, and she said, “Go home. So happy, Mom, so happy to be home!”
Postscript
Ten years later, I am now an official sign language interpreter, and I often share Mag’an’s story with others. On November 7, 2004, we gave birth to 7 healthy daughters, and every time I see her, I seem to see Magian. While I also know that she is not mine just like Magian, whether she has been with us for 6 or 60 years, I will treat each day as the most precious gift in my life.
