A few weeks before Dori died, she and I snuggled like spoons on the couch of her Seattle home.
Maybe we were feeling nostalgic, or just trying in vain to stop time. But we began to recount our story, how over eight years a young girl born with HIV-positive and a grown woman without children became as close as family.
"I remember," Dori began, "the day we met and we went for a walk on the beach ..."
But she dozed off, leaving the sentence hanging.
Of course I remembered. Every important moment of our relationship was seared into my memory, from the day we met when Dori was 12 and I was 28, to now, when this young woman of 20 hovered near death.
I had to remember. I knew I'd someday be the only one.
Just as quickly, Dori roused from sleep and resumed reminiscing, hopscotching through time as if it all happened on the same day. I just held on to her tightly on the couch, not yet ready to let go.
When Doriann Bryon died this fall, doctors at Seattle's Children's Hospital said she was one of the oldest AIDS babies they had treated. But to me she was the child of my heart, the child I was afraid to love but could not help falling for.
I never wanted to grow close to a child who would certainly die before me. How could a heart survive that?
When I started volunteering in 1995 at Rise n' Shine, a group that works with children affected by HIV and AIDS, my reasons were both altruistic and selfish. One of my best friends was sick with AIDS, and I was bracing for his death. This would be an outlet for my helplessness, but I told the volunteer coordinator not to pair me with a child with AIDS. It would be too heartbreaking, too intense, too much.
But then I met Dori at Rise n' Shine's camp that summer. She was 12 and had soft, curly brown hair, a brilliant smile and eyelashes so long they brushed against the thickest glasses I'd ever seen. She was tiny, less than 4 feet tall and delicately thin. We sat together on a bench talking. She worried her mother, Barbara, would get sick while she was away.
I already knew Dori and Barb's story. Dori was 2 in 1985, when Barb discovered they were both HIV-positive.
Mother and daughter were intensely close and Dori, who didn't have many friends her own age, missed her whenever they were apart.
Dori looked at me through her flower-rimmed glasses and suggested that a walk on the lakeshore to collect rocks would be a good distraction. I agreed. It was the first step on a path we would walk together over the next eight years.
We walked slowly, her joints inflamed and aching because of AIDS. We came to a set of stairs that went down to the beach, and I was certain she'd need help. But before I could ask, she sat and scooted down the steps, one by one.
At the bottom, she stood and continued walking, picking up her favorite stones, handing me the biggest ones to carry.
Faced with the flight of stairs on the way back, she dropped to all fours and crawled to the top.
After that walk, I saw Dori every few months at Rise n' Shine's parties and camp. We had a standing thumb-wrestling match and she almost always won.
We were getting closer, but a part of me held back. I had my own life - a husband, a demanding job and a father who was sick.
But in 1998, when Dori was 15, she was diagnosed with cryptococcal meningitis, a dangerous fungal infection of the membranes that line the brain and spinal cord. Barb, who was in another hospital recovering from surgery unrelated to her HIV, was afraid Dori might die alone. So, I went to see Dori at Children's Hospital, and at the end of each visit, she asked me to come back the next day. I did.
For the rest of her life, I never really stopped. Shortly after, we became officially "matched" at Rise n' Shine.
"Now, you're stuck with me," I teased her.
She got very serious and looked me straight in the eye: "I'm glad, Lind."
When I fell, I fell hard. I loved her completely. I was in over my head, but I didn't care. I couldn't give her what I wanted most - to make her better and to buy her time to grow up. But I could give her myself. I could simply show up and be with her, even if I had no idea what I was doing.
It was love without a net.
I was scared and Dori was, too. She looked for promises that I wouldn't leave her. Near the end of each visit, she wanted to make plans for us to see each other again. Sometimes she cried when I left, not wanting to be apart. For both of us, even these small goodbyes were a prelude to the ultimate one.
"I'm afraid I'll die before I see you again," she told me.
I was afraid, too. Then I held her tighter, making memories, storing them up, knowing a day would come when I would ache for just one more hug from her and there would be no more.
Later that year, she was diagnosed with non-Hodgkin's lymphoma, a form of cancer that sometimes afflicts those with HIV and AIDS. I went to her home the night she learned the test results and asked what I could do.
"Just be there," she said.
That night, we made a pact: "Together forever, no matter what." It was a promise that neither of us would run away, no matter where this journey took us.
Dori never let sickness temper her dreams or stop her from planning for the future. Though gravely ill in the summer of 2000, she scrawled on a scrap of paper a list things she wanted to do in her lifetime:
"Learn to drive
Get a wig
Go to Portland
Live long enough to go to camp
Become a secret agent
Go to California
Have energy again
Meet Ricky Martin
I want to be free ..."
I couldn't stop AIDS, but we could defy it. We started working through the list.
A friend got her a purple wig she loved. I taught her how to drive - sort of. She was too weak to manage the clutch in my geriatric Nissan, but grew adept at shifting while I worked the pedals and steered.
"You want to drive?" I'd ask when we got in the car. Together, we cruised the neighborhood streets of Seattle - and sometimes freeways - with her shifting at my command when I pressed in the clutch.
We also visited Portland and went to Los Angeles to see Disneyland and the Hollywood Walk of Fame.
I worried when I took her out of town. What if she got sick? Sometimes I peeked in on her when she slept to watch her breathe.
She watched out for me, too. People sometimes asked me if I was afraid of getting AIDS from her. I was careful to keep rubber gloves in my house and car, but I used them mostly to protect her. I knew I could kill her with a cold.
One evening as she rested in bed, she asked me if she had something on her teeth. They felt sticky, she said.
I saw a brown substance coating them. Dried blood. Her gums were bleeding. Without thinking, I reached for her mouth to wipe her teeth. She grabbed my hand.
"I'll do it," she said. "Blood."
She was right. There were rubber gloves and I forgot - but she never did.
But as thoughtful as she was, she could also be as manipulative as any teenager.
She didn't have many friends her age and was used to getting what she wanted from adults. I struggled with where to draw the line. One of the first times I was going to visit her in the hospital, I phoned to ask her if she needed anything - magazines or slippers from home.
"Well," she ventured, "I could use a new boombox."
I brought her books.
I gave in too many times, sometimes because I didn't think she'd live long. If all she wanted was a new Barbie before she died, who was I to say no?
But, later in our relationship, I knew I had to find a solution. I decided to give Dori $40 a month and that was it - most of the time. She could choose whether to spend it instantly or save it.
I was like her big sister, she said. Or her other mom. Often she called me "her golden-haired angel."
I felt maternal toward her and often thanked Barb for sharing her with me. But I had my own family, my own responsibilities. Dori didn't always recognize that and could be selfish.
A few years ago, my father's heart was failing and my responsibilities at work were growing. I felt pulled between my dad and Dori.
One night, Dori and I had plans when my mom called.
"Honey, we're back at the hospital," she said. "They think your dad had another heart attack."
I called Dori to cancel, so I could be with him. The phone went silent.
She had spent the day looking forward to our visit - and now I was telling her I wasn't coming?
She hung up on me.
I called right back, and Barb picked up. I told her Dori was being a brat - AIDS patient or no. While we talked, Dori picked up the extension and slammed it down again.
A few days later, she greeted me at her door with a hot pink card decorated with cutout hearts and the inscription, "I'm so very sorry for slamming the phone down when you and my mom were talking! Love ya, Doriann!"
Dori made sure we left things on good terms. I did, too. There wasn't time for grudges.
"Enjoy me while I'm here," Dori told me.
And that's what I was doing, curled up beside her on the couch, remembering our good and bad times and holding on tight to this child of my heart.
Linda Dahlstrom: 253-597-8438 Linda.Dahlstrom@mail.tribnet.com
CHILDREN BORN INFECTED WITH HIV
After Doriann Bryon was born HIV-positive in 1983, doctors didn't expect her to live long enough to make it to kindergarten. Children born infected with the virus before the mid-1990s, when better AIDS medications became available, weren't expected to live longer than nine years, according to the Centers for Disease Control and Prevention.
At her death at age 20, Dori was one of the oldest "AIDS babies."
"Dori defies most odds," said Dr. Ann Melvin, who cared for Dori at Children's Hospital & Regional Medical Center in Seattle. "If you'd looked at her at age 7, you'd have thought she'd had two more years. ... Dori spent most of her childhood at a time when (AIDS) couldn't be adequately treated. But now that there's therapy, we see kids that are 15, 16 and 17 and there's no reason to think they won't get to be adults. We will see more of this in the future."
No one knows for sure who the oldest child born with AIDS is. The CDC doesn't have statistics available on how many babies born HIV-positive in the 1980s and 1990s are still alive.
Other facts about children born with HIV:
The number of babies born with HIV in the United States peaked in 1991 with 1,760, according to the CDC. In 2002, between 280 and 370 infants were born infected with HIV.
During the early 1990s, before treatments became available to reduce transmission of HIV from mother to child, an estimated 1,000 to 2,000 infants infected with HIV were born in the United States. By 2000, that rate had dropped to between 280 and 370.
The life expectancy of children born HIV-positive since 1996, when protease inhibitors became available, is 13 to 15 years and rising.
An estimated 2,400 adolescents born with HIV are living in the United States.
SOURCE: Centers for Disease Control & Prevention