“If you’re asking me if an end point is near, I’d have to say yes.”
The doctor was talking about our Maegan, soon to be seven, who was dying of AIDS. My head spun, and I shook as I pointed to the article I’d brought about a new drug for AIDS patients. “Why can’t we get this for Maegan?” He sat with his back to her, though she was sleeping, so if she awoke she wouldn’t be able to read his lips. This was one time when I was grateful for her deafness.
Maegan had lost her hearing to meningitis when she was 18 months old. Although her doctors said it had nothing to do with the fact that she was HIV-positive, I believe it was her shield from scornful remarks about people with AIDS.
I began dating Maegan’s father, Jeff, when she was two. He managed a restaurant where I worked the summer before I left for college. I’d heard his wife, who had been a believer from a strong Christian family, had died from some “rare cancer.” We often sat on the restaurant’s deck after work, talking into the night. But he never discussed his wife’s death, and I didn’t push him; I thought it still would be too painful. I later discovered she’d died of AIDS. Since Jeff was HIV-negative, the source of his wife’s infection was a mystery. Most disturbing was the fact she’d unknowingly passed the disease to their daughter, Maegan, during childbirth. Jeff was afraid I’d run as soon as I discovered their secret, but I was already attached to them both.
Maegan was a confused, frustrated child when I met her. She often screamed and pointed at things she wanted but couldn’t ask for. A few months after Jeff and I started dating, I borrowed a children’s sign language book from the library, hoping to teach her some basic signs such as “cookie” and “milk.” She learned faster than I could teach her, and the vicious tantrums faded to reveal the most delightful child I’d ever met. This language of ours—talking with our hands—made me her link to the world.I married Jeff two years later, in October of 1993, when Maegan was four. We were inseparable by then, and I never let myself consider the fact she might die.
I’d been a Christian since childhood, but I think deep down Jeff still was bitter towards a God who would allow his wife to die such a horrible death and his child to become infected by the same disease. I fervently prayed for a cure, and saved every article about new studies and drugs.
But now Maegan’s doctor was telling us these new drug therapies wouldn’t work for her. Most hadn’t been tested on children, and she was too weak to handle potential side effects. He told us they would keep treating the infections as they occurred, but that eventually Maegan’s body would stop responding to medication. At that point, they would concentrate on alleviating her pain. We wanted to know exactly how much longer she had, but of course he didn’t know. Jeff and I held each other and cried, vowing to make each moment count.
We couldn’t escape the fact we’d have to start preparing for our daughter’s death. What we didn’t expect was that it would be Maegan who prepared us, even though she didn’t know how sick she was. She knew she was different, though, and often asked why she had to take so much medicine and go to the doctor so often. I explained she had a disease and the doctors were trying to find the right medicine. Once we drove by a church where a funeral was taking place. Maegan pointed at the hearse and signed, “die . . . what happened?”
I answered that sometimes people are very sick and the doctors can’t find the right medicine. She grinned broadly at me and signed, “Momma, Jesus has the right medicine in heaven, doesn’t he?” I blinked back tears and nodded, “Yes, Jesus has the right medicine.”
Maegan began to talk about heaven constantly, and drew pictures of the “mansion” that awaited her. She labeled the rooms, including the one that would be hers. Jeff and I shook our heads in disbelief, mainly because much of what she was saying didn’t come from me, and up to that point I’d been her only teacher. She asked to be baptized, and I asked, “Do you know what baptism means?” She rolled her eyes and signed emphatically, “It means you believe in Jesus, and you know I believe!” Jeff also made the decision to accept Christ, and they were baptized together on July 7, 1996.
Some friends and relatives didn’t understand Maegan’s preoccupation with heaven. “She should be fighting to live, not talking about dying,” her grandmother told me over the phone one night. After I hung up, I wondered if she was right. But when I went to Maegan’s room for our bedtime story, she picked up her Bible story book and signed, “I want this story tonight.”
The story she’d chosen was about some mothers who had brought their children to be blessed by Jesus, but were turned away by the disciples. Jesus had scolded them for sending the children away. Chills ran up my spine as I read, “Let the little children come to me and do not hinder them, for the kingdom of heaven belongs to such as these” (Matthew 19:14). I knew it was my answer. I no longer could put Maegan off when she asked questions such as, “Who will sign for me when I get to heaven?” and “What happens to your body when you die?” I’d prepared her for her first school day and first dentist appointment. Now I’d prepare her for her journey home.
We watched movies about children with AIDS, and I interpreted the dialogue for her in sign language. We stopped the tape often so she could ask questions.Jeff and I didn’t forget the vows we’d made at the hospital that day, and seized every opportunity for fun. When the circus or rodeo came to town, we went. We never said, “maybe next time,” because we didn’t know if there would be a next time. We began to realize what a precious gift we’d been given—a resonating appreciation for life.
By Maegan’s eighth birthday, in April of 1997, fever blisters covered her lips and the inside of her mouth. She weighed less than 40 pounds and no longer could eat. She begged us not to take her to the hospital, but we had no choice. She was in the hospital all of April and most of May. There they put her on morphine and a nutrition supplement so she wouldn’t starve.We made arrangements with a local hospice organization, and after nearly two months in the hospital, Maegan was able to go home. As we walked out of the hospital, Maegan kept signing, “Happy go home. Happy go home.” Those days at home were bittersweet. It’s amazing how God provided for our every need. We were residence hall directors at the university I attended, so our bills were paid and we were able to work from home and still care for Maegan.
She slept a lot and was very weak, but when she was awake we played games, drew pictures, and watched movies. One day while we were playing a word game, we discovered that the letters in her name, Maegan Nacole, could be rearranged to spell “an angel came.”
By June, we had to give Maegan powerful medicine to control her vomiting, and she was only awake 30 minutes at a time. One night, Maegan grabbed my hand and signed weakly, “I’m glad Jesus picked you to be my special momma here on earth.” I nodded, holding back my tears. “Momma, please ask Jesus to take me home and make my body well. In heaven, there’s no more sick and no more hurt.”I told her I would, but how could a parent pray for her child’s death? Jeff and I were so completely distraught, we sought advice from our pastor, who told us we could continue to pray for healing, but that God’s healing comes in three forms. Either God would heal her miraculously, or he would work through the doctors to heal her with the right medicine. “The other way,” he said gently, “is the ultimate healing. He will take Maegan to heaven and heal her completely.” I suddenly remembered her words, “Jesus has the right medicine in heaven.” We felt better knowing we could continue to pray for healing, but that we had to leave the rest up to God.
Maegan already was teaching us how to see God in this situation, despite her suffering. She’d say things such as, “I want to thank Jesus because I only had to push the pain button once today.” We also saw God’s hand in the teacher who sat with her while we went out to eat, and in the nurse who waited to draw blood until after “Tom & Jerry.” It was as if God was whispering, I’m still here. I haven’t left you.The next few days were the worst we’d been through. Maegan could barely sit up, and her signs no longer made sense. Jeff and I went out to get some food and fresh air one night while Maegan’s grandparents sat with her. When we returned, she sat up in bed, gesturing excitedly about the movie that was on. She even got up and walked around, and we felt a surge of hope. What we didn’t realize was that she was saying good-bye. She asked her papa to say a prayer. Then she signed, “I love you,” and drifted off to sleep.
I remember thinking how happy she looked. She died the next morning in her sleep, and I thought I heard her voice—her real voice this time, not her hands—saying, “Happy go home, Momma. Happy go home.”It’s been seven years, and I’m now a certified sign language interpreter for the deaf. I have many opportunities to share Maegan’s story.
On November 7, 2001, we gave birth to a healthy baby girl, Savannah Nacole, and I can sense Maegan’s presence every time I look at her. Holding her, though, I realize she’s no more mine than Maegan was. She’s only been lent to us for a while, and whether she’s with us 8 years or 80, I’ll try to remember that each day is a gift.
(Published as “Lessons in Dying” in the July/August 2004 issue of Today’s Christian Woman magazine.)