My son, Ryan White, died in 1990. Ryan, a hemophiliac, contracted a fatal illness from a type of blood product critical to people with hemophilia. But at the time no one realized that a new and deadly virus was then lurking in the nation\u2019s blood supply.<\/p>\n
Ryan had just turned 13 when he was diagnosed in December 1984. I was a single mother. We lived in Kokomo, Indiana. Ryan had been born there, as had his younger sister, Andrea. So had I, and my ex-husband and my parents. My mom\u2019s big worry when I was growing up was that I might marry someone who would take me away from Kokomo. You weren\u2019t ever supposed to leave Kokomo. Kokomo took care of you. It was home. Then Ryan was diagnosed with AIDS.<\/p>\n
When Ryan first became sick, we took him to the James Whitcomb Riley Hospital for Children in Indianapolis, where they discovered that Ryan had a rare form of pneumonia that usually indicates AIDS. But it was a few days before his physician, Dr. Martin Kleiman, knew for sure. I didn\u2019t want to tell Ryan until after Christmas. Ryan loved Christmas<\/a>, and Dr. Kleiman couldn\u2019t guarantee that this wouldn\u2019t be Ryan\u2019s last.<\/p>\n \u201cThe disease is so new, and so few children have it, that we just don\u2019t know how long Ryan can hang on,\u201d he explained.<\/p>\n Looking back, two incidents at Riley should have warned me of what was to come. First was a snatch of conversation in the cafeteria, a nurse speaking to a doctor: \u201cI will not go into that boy\u2019s room,\u201d she insisted, trying to keep her voice low. \u201cI don\u2019t care what they say about not being able to catch it; I\u2019m not taking a chance.\u201d It wasn\u2019t just what <\/em>she was saying. It was the hard edge of fear in her voice.<\/p>\n Then two of Ryan\u2019s favorite teachers from his middle school showed up to deliver a big batch of get-well wishes from his classmates. Though Ryan didn\u2019t know about his diagnosis yet, I thought it was time to tell his teachers. They paled and, fumbling, pushed the cards into my hands. \u201cWe shouldn\u2019t bother him,\u201d one of them said. Quick as that, they were gone. Strange, <\/em>I mused, they drove an hour to see Ryan, all the way from Kokomo.<\/em><\/p>\n By Christmas Eve, Dr. Kleiman was able to take Ryan off the ventilator and removed his chest tube so he could talk again and celebrate Christmas. The day after, I told Ryan he had AIDS.<\/p>\n He didn\u2019t cry. He didn\u2019t even seem scared. He just wanted to know when he could go back to school. \u201cMom, I want to get on with my life,\u201d he said.<\/p>\n Before I left his room that night I switched on a little plastic guardian angel<\/a> that church friends from Kokomo had given us when Ryan was in and out of the hospital with hemophilia. It was just a battery-operated night-light, but Ryan always had it by his bed whenever he was hospitalized.<\/p>\n In the morning Ryan told me something incredible. \u201cMom,\u201d he said, matter-of-factly, \u201cI saw Jesus last night.\u201d<\/p>\n I didn\u2019t know what to say.<\/p>\n \u201cHe told me that I had nothing to worry about,\u201d Ryan continued. \u201cHe promised he would take care of me.\u201d<\/p>\n \u201cRyan, what did Jesus look like?\u201d<\/p>\n Ryan kind of smiled. \u201cWell, he didn\u2019t look anything like that picture I have<\/a> hanging in my room.\u201d<\/p>\n He never again mentioned the incident. But I thought of it often. I hoped it meant that God would work a miracle and cure Ryan. Is that what you mean, Lord, by taking care of him? Are you going to give us a miracle?<\/em><\/p>\n Ryan came home in February but missed the rest of the school year. By summer he was well enough to get a paper route and hang out with his friends. He began agitating to go back to school. Ryan could never play sports because of hemophilia, so he poured all his energy into his studies. He was desperate to go back. He was bored to death sitting around the house watching I Love Lucy <\/em>reruns.<\/p>\n \u201cAll right,\u201d I said. \u201cI\u2019ll tell them you\u2019re coming back in September.\u201d<\/p>\n It wasn\u2019t going to be that easy.<\/p>\n The school board wouldn\u2019t let him back. Everybody was afraid. The board claimed it couldn\u2019t guarantee the health of Ryan\u2019s fellow students, despite overwhelming medical evidence that AIDS wasn\u2019t contracted through casual everyday contact. Finally a court forced the board to relent and Ryan returned to school.<\/p>\n But only for a day. A group of parents promptly brought suit to bar Ryan and he was sent home until arguments could be heard in court. Months dragged by. Eventually a judge affirmed Ryan\u2019s right to attend school. But by then, after more than a year of bitter legal combat in the center ring of a national media circus, the damage was done. Kokomo had hardened its heart against one of its own.<\/p>\n Still, Ryan was glad to be back; he even agreed to endure some completely unnecessary \u201cprecautions.\u201d He drank from a separate water fountain and used a separate bathroom. He ate with other students but was forced to use paper plates and disposable utensils. He wasn\u2019t allowed to take gym or use the locker room or pool.<\/p>\n Crazy rumors spread: that Ryan spat on food and tried to bite people. Parents didn\u2019t let their children associate with him. When he walked down the hall at school, kids ran away screaming. One day Ryan found his locker defaced with obscenities.<\/p>\n \u201cMom, are these people nuts?\u201d he demanded. \u201cI don\u2019t even know what half those words mean!\u201d I knew how he felt. At my job with one of the huge auto plants in town, I was getting threatening anonymous notes attached to my time card.<\/p>\n Usually Ryan was able to shrug these things off. He was tough. He\u2019d wanted to fight this fight. He\u2019d always been more disgusted with the people who secretly supported him but were afraid to stand up than with those who openly attacked him. Now he worried about Andrea, his grandparents and me.<\/p>\n On Easter Sunday 1987 we were sitting in the back pew of our church\u2014Ryan, Andrea, my parents and me\u2014so Ryan\u2019s cough wouldn\u2019t upset people. When it came time for the traditional Easter greeting of peace, folks turned to the people in the pews behind them with a handshake and the words \u201cPeace be with you.\u201d As the greeting rolled to the back of the church, I glanced over at Ryan. There he stood, gaunt, his growth stunted by AIDS at five feet, with his hand outstretched. But no one would shake his hand.<\/p>\n Afterward, as we walked to my father\u2019s car, I cried out silently, Lord, I thought you promised Ryan you would take care of him.<\/em> Every night Ryan and I had thanked God<\/a> for another day. Now I wondered how much more my son could take. Ryan had been in and out of the hospital with the kind of illnesses that plague AIDS patients. He was on a medical roller coaster, and it was taking its cruel toll. Yet he held on. He had faith. Each time he was hospitalized, he brought his little plastic angel. But I was still waiting for a miracle.<\/p>\n The next Sunday, while we were at church, a bullet shattered our home\u2019s picture window. \u201cMom,\u201d Ryan announced, \u201cit\u2019s time to get out of Kokomo.\u201d<\/p>\n I dumped our house at a tremendous loss\u2014everyone dubbed it the \u201cAIDS house\u201d\u2014and we moved 20 miles south to a community called Cicero.<\/p>\n To our amazement, Ryan\u2019s new high school accepted him with open arms. The students themselves<\/em> had decided to get together for AIDS awareness classes. They invited expert speakers and offered counseling to anyone who was afraid. The truth was, when the issue was left to the kids, they handled it much better than the adults.<\/p>\n Ryan\u2019s life had taken so many incredible turns. By now the whole country knew of his plight. He\u2019d been on Nightline <\/em>and the Today <\/em>show and had made hundreds of new friends. He traveled the country speaking to people about AIDS. Everywhere, AIDS patients told Ryan the same thing\u2014because of his public battle, Ryan had eased the way for them. \u201cSee, Mom,\u201d he said, \u201csome good did come from that mess back in Kokomo.\u201d<\/p>\n I thought a lot about Kokomo. You don\u2019t just walk away from your hometown. I had family there. The local paper stood behind us, and our true friends never faltered. Ryan put it in perspective. \u201cLook,\u201d he explained, \u201cpeople were just doing what you were trying to do\u2014watching out for their kids. They were scared to death, and that\u2019s why they acted so crazy. In a way, I really can\u2019t blame them\u2014though they were wrong.\u201d<\/p>\n Ryan didn\u2019t have time to be bitter. He had forgiven. I prayed to find that same forgiveness<\/a>.<\/p>\n In the spring of 1990 Ryan began slipping, and while we were in Los Angeles for an AIDS benefit, he became very ill. As soon as we got back to Indiana, Dr. Kleiman admitted him to Riley. Ryan knew it was bad. \u201cI\u2019m scared this time, Mom,\u201d he said.<\/p>\n He was 18.<\/p>\n Over the next week Dr. Kleiman exhausted the medical options. Ryan\u2019s immune system was failing, and he slipped into unconsciousness. \u201cJeanne,\u201d Dr. Kleiman said, \u201cI give him a 10 percent chance of making it. And the only reason I give him the 10 percent is because he\u2019s Ryan.\u201d<\/p>\n Ryan had always said that when it got to this point, it would be harder for me than for him. Now I was afraid he was struggling to hold on to life for my sake. \u201cJust let go, sweetheart,\u201d I whispered to him. \u201cIt\u2019s all right now.\u201d<\/p>\n On Palm Sunday, 1990, Ryan let go. Like the day\u2019s last rays of sunlight, his breathing faded and then his heart stopped. Dr. Kleiman nodded. I leaned over and gave my son a last kiss. Then I reached for his guardian angel night-light and switched it off.<\/p>\n A week later, after the funeral, I put the angel on our mantel next to Ryan\u2019s high school picture. I stared at that angel, remembering how it had been given to us by our Kokomo friends so many years before. In Ryan\u2019s last week, word came through that the churches in Kokomo were praying for him. That was the Kokomo I wanted to remember.<\/p>\n And then, suddenly, looking at Ryan\u2019s angel, I knew that God had <\/em>worked a miracle<\/a>. He had taken care of Ryan. How else could Ryan have survived for nearly six years when the doctors had given him only six months? God chose Ryan, an average boy from an average town in Middle America, to do his work\u2014to be an example in the face of ignorance and prejudice and fear, and to sow compassion<\/a> in the heart of the nation.<\/p>\n Four years later, I still keep his angel on our mantel. Ryan has not been forgotten. The other day at the mall I noticed someone staring at me. A few seconds later she came over. \u201cOf course,\u201d she said, \u201cyou\u2019re Ryan White\u2019s mother.\u201d<\/p>\n For the life of me, I can\u2019t think of anything better to have been.<\/p>\n