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AIDS + Starcross

Children with HIV/AIDS

The Starcross FamilyFrom February 1986 to the present the AIDS pandemic has been a part of our life at Starcross. It's a story of people, mostly children, and of dreams.

It started one night a few weeks after David, our adopted son, was born. A TV news program showed a picture of a toddler in a walker tethered to a doorknob in an empty hospital hallway. He was one of a growing number of children with HIV/AIDS warehoused in hospitals. They were called "Boarder Babies." Many were afraid to provide them with a normal home. The United States had no national public health policy on AIDS. Agencies were cautious. It was assumed the children would not live long.

We looked at happy David and back to the TV. It was wrong. These kids deserved to experience life no matter how short that might be. We had a big house but we were worried about handling medical issues from our rural location. Dr. Marshall Kubota, the remarkable physician responding to the people living with AIDS in our county, told us "At this time we have no medical answers. What these children need is love." So it started.

Children at StarcrossThere were a lot of friends; doctors, nurses, social workers, lawyers, judges, journalists, and neighbors. But there was also a lot of fear in those early years. We were denounced in public meetings. The county dump would not take our garbage. Store clerks would not touch our money. A volunteer fireman would not respond to a call for help. Some social welfare, and educational agencies responded to us with panic and hostility. Fortunately other officials did not. To us, we were simply offering to provide a home for a few children made homeless because they carried a deadly virus. The negative reaction surprised us. It was painful and very time consuming. In time it passed - but there were new challenges.

Brother Toby with AIDS childFor reasons we could not understand we caught the attention of the international, national and regional media. An ABC-TV producer tried to explain that "in a sea of despair because of AIDS you represent something hopeful." As the story spread, so did the calls from people impacted from the pandemic. Mothers without family and with AIDS who did not have long to live were trying to make responsible plans for their children. We could only take a few children. Sister Marti became a one person hub for putting people in need together with those opening their hearts and homes. Other well-meaning people wanted us to become an agency for Children with AIDS. We just wanted to be a few people responding to a need by providing a home and love for children as individual children, each with a right to be cared for lovingly.

It was hard for us to have a normal home life. Some well-known people moved forward to provide us with protection so that we could simply focus on the children. Several authors visited and became close friends: Dr. Elizabeth Kübler-Ross, On Death and Dying; Randy Shilts, And the Band Played On; Paul Monette, Borrowed Time.

But what was a normal day for us in those early years between 1986 - 1896? Sister Julie wrote:

"Caring for desperately ill children brought out incredibly intense emotions. The deaths were more devastating than we could have imagined. There were sleepless nights followed by days of fighting bureaucracy. But we took utter delight in the world of the babies - reveling in each of their little victories."

It was a bit hectic. We had 4 toddlers learning to walk. We were milking cows and trying to keep our Christmas tree farm going. Whenever there was a conflict the needs of the children came before the needs of the farm, and so money was an issue as well.

Sister Marti playing with AIDS children.Some of the children died. That was very hard. But they had lived well. Others came. Some died and some lived. Two who tested positive were found clear of HIV when the tests became more sophisticated. We had adopted them and they are very much a part of our family now as healthy teens.

Children with AIDS is no longer a major problem in the United States. Medicine has found strategies to greatly reduce the transmission of the HIV virus from mother to child. It is now down to 1% transmission. Adults and children can now live with HIV/AIDS much longer with antiretroviral medication and proper care.

If you want you see and hear what our life was like in those days you can watch Christmas at Starcross. The San Francisco filmmaker Bob Elfstrom followed our lives for two years. The film was first shown by Boston PBS station WGBH in 1989. It is distributed by Villon Media. A copy can be ordered from us.I f you would like to purchase the DVD, please call 1-800-960-1500 or email community@starcross.org.

Brother Toby has written two AIDS memoirs. The first, Morning Glory Babies (St. Martin’s Press: New York, 1988) was awarded a Christopher Prize. If you would like to order a copy of the book please call 1-800-960-1500 or email community@starcross.org.

Please read on: Starcross in Romania >

 
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