Ryan White - My Own Story (8 page)

Christmas was still a week away—a week that Mom had to wait out, behaving as normally as possible. She and Andrea got a room across the street from Riley at the Ronald McDonald House, a place where relatives of kids who have to stay in the hospital can sleep over—not that Mom got much rest. My mother and sister spent all day, every day, in the visitors’ lounge. Andrea could only see me once a day, but every forty minutes, Mom would dry her eyes, take a deep breath, push open the swinging doors into the intensive care unit, and visit me for twenty minutes. Our conversations were still one-sided, though I wrote her notes like “Rub my neck gently,” or “Thanks for coming to see me,” or “Itch the top of my head.” (I’m better at math than at English.) I had a rash because I turned out to be allergic to some of my medicine. Last thing we did every night was pray together. Mom and I would clasp our hands together, and she would say, “Thank you, Lord, for another day. Lord make everything come out okay, in Thy precious name, Amen.” I would chime in silently, and then she’d kiss me good night.

Ryan and his favorite nurse, Laura Kreich, December 1984, at James Whitcomb Riley Hospital.

Once my intensive-care nurse, Laura Kreich, came in to see me while Mom was still visiting. Laura was only twenty-two, just out of nursing school. She was pretty, she came from a big family, and she was practically a kid herself. She was always dropping by to talk to me, even though I could only nod or shake my head. We’d do stuff where I didn’t have to talk, like playing cards or watching movies on the VCR Mom had rented and brought in. When I first went into the hospital, Mom had given Andrea and me two of our Christmas presents early: a jam-box for Andrea and a radio/cassette player for me. Laura never left my room without first changing my tapes for me. If I was asleep when she arrived, she’d leave me a little note on a paper towel, telling me when she’d be back. This time she had work to do: She was there to hook me up to a new IV.

“What are you giving him?” Mom asked, thinking I might be on new medication.

“It’s Factor VIII,” Laura said. “It’ll help him heal.”

Mom couldn’t say a word, but she wanted to yank Laura’s needle out of my arm and dash the bag of Factor on the floor. She knew I needed it to recover from my surgery, but she was furious that what had been keeping me well had given me AIDS, drop by drop.

I waved at Laura. I had a note ready for her: “How will they take out my chest tube?”

Laura knew me well enough to realize that I was worried about being hurt. “They’ll just slip it out,” she said soothingly. “It won’t be painful.”

As soon as Mom had left me, she always started crying again immediately. Andrea was waiting for her, and sometimes Steve or my grandparents, and Mom would cry along with them. There was even another mother who was practically living in the visitors’ lounge. Her daughter Julie had a brain tumor. She and Mom cried together all the time—but one day the other woman disappeared. Mom wondered what had happened to her, and to Julie.

That night, walking back to the Ronald McDonald House, Mom turned to Andrea. “If anything happens to Ryan,” she said, “I don’t want to go on without him. You and I should go out to the garage, close the doors, sit in the car, and let the motor run.”

Andrea didn’t think Mom was one hundred percent set on a suicide pact, but she sensed it wasn’t a good time to say so. Andrea has a lot of sense. She put her arm around Mom, hoping silently that Mom would start getting some sleep. Probably then she’d change her mind.

But Mom certainly fooled me. I never suspected what she knew or how awful she felt, and I truly believed I was getting well. It helped that Dr. Kleiman treated me like I was a grownup. When you’re in a children’s hospital, lots of people speak to you in baby talk. I hated that. But Dr. Kleiman seemed to realize that as far as I was concerned, being sick was a way of life. He understood that if I was in the hospital, his job was to get me home, and keep me there. He knew I had some smarts and wanted to be told what was going on; I didn’t like medical types trying to put anything over on me. I let him know how much I hated having blood samples and IVs—they make your arm ache and the bandage pulls your skin. Dr. Kleiman promised to keep me informed about what he was doing and why. He said he’d always tell me the truth, and he’d never do anything to me that he wouldn’t do to his own kids if he thought it was absolutely necessary to help keep them well. And he gave me his home phone number. I could call him anytime to check if I wasn’t sure about some treatment the hospital wanted to give me. All right!

I did call him, maybe three or four times. When you’re in a big hospital like Riley, lots of doctors and even medical students come through your room all the time and ask you questions. Most of the time they’re asking as part of their training, but sometimes they think you’re an unusual case and they’re just curious. (No one knew all that much about AIDS yet, especially pediatric AIDS. Every single patient could be a little different.) Sometimes these doctors—and nurses too—haven’t read your chart, where your regular doctor writes down everything he knows about your case and all the medications you’ve had or are supposed to get. So they bop on in, take a look at you, and try something they think is right. The trouble is, it may not be necessary at all, but they’ll make you suffer through it.

For instance, one time a pair of nurses appeared by my bed with a new needle. “Dr. Kleiman wants you to have another IV,” they told me.

“Dr. Kleiman didn’t tell
me,”
I protested. Why should I get stuck again so they could have some practice? “I’m going to call him to make sure.”

“Dr. Kleiman’s gone home,” one of the nurses said. “You can’t call him.”

“Oh yeah?” I said to her. “Watch me!”—and I grabbed the phone.

It turned out that Dr. Kleiman
had
ordered that IV, but had forgotten to tell me. So I had to have it. At least I had stood up for myself and gotten the straight scoop.

On Christmas Eve day Dr. Kleiman took me off the ventilator. What a great present—my throat was still very sore, but now I could almost talk to Laura! When she was around, I felt like I had a big sister with me at Riley. She made being in the hospital almost bearable. Laura didn’t feel too old to look at my G.I. Joe collection, or to sing along to my John Cougar Mellencamp tapes. I was big on John Cougar. To say “so long” to the ventilator, we’d go,

When I fight authority
Authority always wins
Well, I’ve been doing it since
I was a young kid
And I come out grinning!

I couldn’t wait for Christmas. Dr. Kleiman also had a present for Mom—some good news. Starting the day after Christmas he was putting me on a new drug called pentamidine that he didn’t think would make me itch. At first I had to have pentamidine shots in my thigh—yech!—but later I could get it intravenously. When Mom heard this, she began to believe that I’d live longer than the three to six months Grandpa had predicted. She asked my grandparents to take poor worn-out Andrea home with them so she could sleep in a bed for once instead of under a hospital lounge chair. That night Mom slept well herself for the first time since I’d gone into the hospital.

The next day was her favorite of the entire year—Christmas. Mom starts planning for Christmas well before Halloween. She begins decorating our house at Thanksgiving, and sometimes leaves all the trimmings up until March, just because she hates taking everything down. “The house looks so blah,” she complains. We always have at least two trees: a big one covered with all kind of ornaments that Mom has collected, and a little one hung with framed photographs of everyone in the family. Even Dad is on our family portrait tree—and certainly Steve.

As for our big tree, Mom’s been known to set the whole thing up, lights and all—and then decide she doesn’t like the way it looks, tear everything down, and start all over again. She crochets snowflakes, and she clips real candles in tin holders onto the tree’s branches. She makes popcorn chains for the tree that she puts in the freezer after Christmas so they’ll keep until the next year. She bakes her special stained-glass cookies, made with melted Life Savers inside. They’re so pretty that they make perfect ornaments, but she can never save them; someone always eats them long before Christmas!

When Mom said good night to me at Riley she left the winking lights on my little tree, along with my guardian angel. We had lots of cards to decorate my room—word had gotten around my neighborhood and church. Some kids at Western, my school, had sent me cards too—even some kids I didn’t know. They said they thought I was brave, and they hoped I was feeling better. My school also sent a giant computer banner. The computer had printed out “Get Well Soon” in huge letters. We hung it over my window and made a wreath of cards around it.

Ryan’s first day back at Western Middle School. Behind him is his stepfather Steve Ford.

Ryan with his dog Wally, 1989.

Every year Mom makes sure that Andrea and I find tons of presents under our tree. She gets a kick out of picking out things she knows we want. “If I don’t have anything to show at Christmas after all my years at Delco,” she always says, “I’m in bad shape.” That year she’d worked a lot of overtime in October and had done all her shopping by the time I got so sick. She had plenty of presents for both of us in her closet, including a computer for me. She asked my grandparents to bring our gifts on Christmas Day so Andrea and I could open them at the hospital.