by Jeanne White
It has been seven years since my son, Ryan White, died. Ryan had hemophilia, and he contracted AIDS from a blood product that hemophiliacs take to help their blood clot properly. This was before anyone really knew very much about AIDS. He was only 13 years old when he was diagnosed. The doctors told us then that Ryan would be lucky if he lived another six months.
Ryan lived six more years and was “the kid who put a face to the AIDS disease and helped to educate the nation.” President Clinton said that about my Ryan on the day that he signed the reauthorization of the Ryan White CARE Act. The Act provides medical and support services, medicine, home nursing and outpatient care to hundreds of thousands of people in America living with HIV. I know Ryan would be so happy that his life, and his death, have helped so many people.
In the beginning, when we first found out that Ryan had a fatal disease, I was totally and utterly devastated. I was a single mother of two kids who meant everything to me, and my son, my first-born, was going to die. I didn’t think I could go on. Then, on top of that nightmare, we had to deal with the ignorance, fear and hatred that surrounded AIDS at that time. Ryan wanted to go back to school but the school wouldn’t allow him to return. Parents were afraid their children could catch AIDS from being in the same room with Ryan. We fought for him to go to school and we won, but the community hostility and pressure were too much for our family. We decided to move to another town.
At Ryan’s new high school, it was a completely different story. The students actually went out of their way to welcome him: They organized AIDS education classes and arranged counseling to conquer any fear that still remained in any student. Educating the public about this disease became Ryan’s life, his career. Ryan became an international spokesperson for AIDS, appearing on television and in magazines and newspapers around the world. This helped to give meaning to what had happened to our family and ease some of our pain.
We learned to live with AIDS. The nightmare of the disease is that it brings you one powerful infection after another. I thought every cough, every fever might be his last. With AIDS, you never know whether a symptom is serious or mild. The patient is sick and then gets well, and no sooner does he get well than he gets sick again.
Ryan was almost always in a good mood. Even when he had to go to the hospital, he’d try to give me a smile when I walked in the door. However, sometimes if he couldn’t do something—go to a particular concert, or meet some exciting people, or travel to an interesting place because he was too sick or too tied up with school—he’d get pouty and upset. Then I might scold him. He’d feel contrite and apologize right away. Maybe write me a note or send me a card.
A sick person would have to be downright saintly never to give in to crankiness. And if you’re the one giving care, you can’t ever take an angry outburst personally—because it’s really the illness spreading or the medication speaking and not the true, loving heart inside.
One day Ryan just grabbed my hand and started swinging it.
“Now, Ryan, when you do something as nice as this, you must want something.”
“I don’t want anything. Can’t a son hold his mother’s hand?”
“Come on now, Ryan…”
“No, really, Mom. I want to thank you for all you’ve done for me. Standing by me like you’ve done.”
No one can ever take those words away from me. No one can ever take away what I felt that day as a mother.
I remember someone once asked me, “How do you live, Jeanne, day to day, knowing that your son is going to die?”
I answered, “We don’t think about death. We don’t have time for it. If you allow it into your life, it will eat you up. You have to go on with your life, making the most of every day and every hour.”
Finally the time came when Ryan’s body couldn’t keep going. When Ryan was dying, the hospital staff must have thought we were insane. Here’s this comatose kid, on life support, with a half-crazy mother calling his name, talking to him while he slept. He probably couldn’t hear a thing, but we brought him music. He couldn’t see a thing, but we stood precariously on chairs, hanging decorative posters and banners on the walls above the screens and the wires and the bleeping monitors. We didn’t want to give up on him.
Yet as I stood there watching Ryan’s thin little body, I knew there was nothing more anybody could do. Before he drifted into unconsciousness, Ryan had told me, “If you think there’s a chance, Mom, go for it.” We did. Until the last second, we went for everything we could.
I leaned down close to him and whispered, “It’s okay, son. You can let go.”
Then he died. They revived him for a few minutes. Momentarily he would die again: I knew that perfectly well. I knew there was no chance. But still, to have to call the battle lost . . . it was a moment of inexpressible sorrow for me and my family.
“If you want, you can tell them no more,” a close friend said. “It’s up to you, Jeanne.”
I talked to my parents, and to Ryan’s sister, Andrea. Then I told the doctors, “No more.”
Dr. Marty Kleiman, who had taken care of Ryan from the beginning, who helped him live for almost six years when other physicians predicted that he would die in six months, went out and made the announcement that my boy had passed away in his sleep, without pain.
The sparkle was gone.
Now, seven years later, the sparkle is slowly returning. My state of mind is like the dawn these days. I look forward to everything. I love being married. My new husband, Roy, has made my life fun again. My daughter, Andrea, has grown into a strong, smart, beautiful person. I look forward to everything our life has in store for us— adventures, travels, grandchildren. On the edge of the sky just beyond a cloud, I think I really see the end of the plague of AIDS. Every day, people whose lives once seemed to be finished are bursting with new health. The cure is coming. It’s almost here. I feel that I will live to see it. What greater gift can anyone receive than this sense of happy anticipation?
The garden has been my therapy. Here among the flowers and the bright fruit, when the light is brand new and everything is fresh and wet and the leaves are beaded up with dewdrops, I work in the household of nature and refresh my spirit. It seems to me that every weed I pull is a bit of grief I am learning to set aside, a tear I’ve weeded out so that good cheer can grow again.
I see in the faces of the flowers all the friends I have lost: I see my son’s face. They are beautiful in the new morning, opening like smiles and shining with hope.
Thank you, Lord, for another day.