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Saturday, 8 July, 2000, 10:55 GMT 11:55 UK
Mothers preparing to die
By Orla Guerin in Kampala
If you had to say goodbye now, what would you say? If you had to gather up all the fragments of your life, and tell your story to those you are leaving behind, where would you begin? How would you find words to tell your children that you are dying? And what advice would you leave behind?
Up a dirt road in Kampala, Uganda, past rows of wooden huts coated in squalor, there is a small house where dying women are writing the stories of their lives.
The house is small but welcoming. So many little feet have played in the garden that the grass has been rubbed away. Inside the bare front room a framed photo of Princess Anne hangs over a long table. She visited in 1998.
At the table, women work on their memory books. These are home-made scrapbooks with photographs pasted in, and pencil drawings of family trees with tribes and clans.
They contain the happiness and pain of a whole lifetime, tracing the story of the mother from her own birth, right up to the birth of her children, and on to the present day. The women tell their sons and daughters about their first steps, their first words, their first days at school. They will leave behind a separate book for each of their children when they die.
'I am not going to die today'
Irene Namagembe Nakku has four books to write - for her daughter and her three sons. She is working hard to finish them in time.
"The books will be the treasure that I leave them," she says. "The children see me crying as I write some parts, but through the books I can tell them things I find hard to say."
In her memory book, Irene is telling her children about their father's death from Aids.
"The children say 'you are going to die just like Daddy','" Irene says. "But in the book I am able to explain that I am not going to die today."
The memory books are an act of love, and of bravery. The women explain how they were infected, how sick they sometimes feel, and how much time they may have left.
Hopes and dreams
Those who cannot read and write are being helped by their own children. One woman died after she had just written a few pages - her son is trying to finish her story.
"My son Ezra loves football and his brother Ediger likes music," Irene says. "So I am telling them to keep up those interests when I am gone, although they must study too.
"For my girl I am saying that I don't want her taken in for marriage, even if there is no one to pay her school fees.
"If we live long enough we can tell our children what we want for them. If not, at least it's in the book."
Rebecca Nakabazzi is just 24-years-old. She has already finished the memory book she is leaving for her nine-year-old son, Julius Lugoloobi. This attractive slender young woman, with carefully braided hair and tiny star-shaped gold earrings, seems to be well.
But when she sits by my side and begin to show me her book, I can see that her life is slipping away.
"That's me," she says, pointing at a picture of a broad-shouldered girl with a round face and full cheeks.
I can see no trace of this girl in the slight figure beside me.
"Julius, I was in labour all night," she writes, "and you weighed 4.3 kilos when you arrived.
"As a baby you were fat, but you sat up early. You liked porridge with no milk and you never cried before going to school.
"You always liked to play alone. You liked keeping rabbits and going out on your bicycle. My favourite memory is of the time when someone bought you some food, and you kept a piece for me.
"And then there was the time when you stayed with me all through the days after my brother died."
A lively confident boy smiles out from among the photographs in Rebecca's book. Julius looks like a happy child, but the family snapshots of picnics and parties include many loved ones who are already dead - his father Patric, his young cousin Brenda, his aunt Betty. They have all died from Aids.
"You might meet with problems, but I want you to bear with them," Rebecca writes. "If you get the chance to stay on in school, I want you to be active in your schoolwork.
"I want you to go to university and to get married when you grow up."
But Julius may not live long enough to fulfil these dreams. In the book Rebecca tells him very gently that he too was tested for HIV when he was just four-years-old, and he also has the disease.
Simple as they are, the books cost more to put together than many of these poor uneducated women can afford. But they are struggling to do it.
"It's the last thing we can do for our children," Irene says.
The project was started by retired British social worker, Carol Lindsay Smith. She is still a regular visitor to the house in Kampala.
"It helps the women so much to know their children are prepared," she says. "And the children get to know that their mother is not just someone who is dying, but someone who also led a life."
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