Today was a very sad day. Today, one of our participants in the Nutrition for HIV-Exposed Infants, Daphrose, passed away at the age of 39. To meet Daphrose, you would never know of the traumas she faced in her life. She was always smiling and laughing. The joy with which she played with her daughter was so very touching. She jumped at the opportunity to learn how to make baskets and banana leaf cards, although her true dream was to return to secondary school.
What is not clear from meeting Daphrose are the losses that she carried with her. The first hint is within her home. She lived with her two brothers, and her sister next door, in a relatively new ‘umudugudu’. The home is large and well-made, although strangely lacking in furniture. There are wires that travel up the wall to an imaginary light bulb, but no electricity. The story is that her mother died when Daphrose was young. Her father lived in this home with his children, until a few years ago, when he packed all of the furniture (as well as the family’s lone solar panel) and moved to another community to begin a new family. Through this experience, the brothers and sisters became even closer and supported one another through the challenges that they faced.
When Daphrose became pregnant for the first time, she thought this would be the opportunity to give her daughter what she had lacked. Sadly, this child was born with HIV and died shortly after she was born. She celebrated when her second child was HIV-. But, in a terrible twist of fate, her second child also died. This time, the cause was unclear but thought likely to be due to malnutrition after Daphrose stopped breastfeeding. When her third child was born, she was absolutely determined to avoid the tragedies of the past. She took her HIV medications diligently, followed all of the recommendations for breastfeeding, and joined our pilot group to ensure that her daughter would not develop malnutrition when she stopped breastfeeding. Indeed, her daughter thrived! She is HIV-, and did not suffer the complications of malnutrition as her other child had.
Life was looking good for Daphrose and her young daughter! Tragically, in January, Daphrose became very ill. She went to the hospital, where she was found to have an invasive form of pelvic cancer that is caused by the wart virus (HPV) and is stimulated by HIV infection. She was sent to the referral hospital in Kigali, only to be sent back to Ruli with the news that nothing could be done. Daphrose was in the hospital for 3 months before passing away from this aggressive cancer. Throughout her hospital stay, her sisters of the Ihangane Artisan Association visited her daily to provide food and emotional support.
Her terrible loss is a reminder that there is still so much work to be done. Her passing weighs very heavily on our entire team, her family, her fellow program participants, and co-workers at Ihangane Association. Especially for the Rwandans who must watch these tragedies every day, it feels as though when they find a way to “plug one hole”, they lose someone to another hole. Despite this, their faith and perseverance carry them through and they continue to do their best. In Rwanda, I often hear “you must try” and “you can do your best”. For those like Daphrose and her daughter, we must try and continue to do our best.
Written on May 17, 2011 and posted later due to lack of internet access in Rwanda.