What I Will Do This Year

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Sarah wakes up at 3:00am, and she cannot fall back asleep. She sleeps on a thin mattress on the floor of her one-room home in western Kenya, sharing the space with her three children. It is not the hard floor or the shifting children that keep her awake. It is not the echo of rain on the metal roof or the ever-present question of whether they have enough food for tomorrow.

Sarah's mind keeps turning over and over in that dismal three o-clock hour because she is worried about her middle child, her daughter Rose.  Sarah tries not to think about these worries too much during the day. She works hard to care for her children and to gather and sell firewood for the money to buy food. But during the night, she wonders if there is something wrong with Rose.

Rose has been sick several times - rashes, pneumonia, a few bad bouts of diarrhea. Sarah has scraped together the money for many trips to the doctor's office, even for two admissions to the hospital. She has always managed to buy whatever medicines the doctors prescribed. Rose is much shorter than her older sister was at the age of seven, but Sarah tells herself that children are different. Rose seems skinnier and skinnier, but Sarah wonders if this is just because there has not been money for three meals a day during many of the last few months. Rose has had a cough for weeks, but so has Sarah, and she thinks it may be allergies and dust from the dry season.

Sarah has a mother's worry that something is not right with her child, but she rehearses all the reasons why her fears might be false.

After weeks of 3:00am awakenings (does her brain never forget what time it is?), Sarah brings Rose to the private clinic of one of the pediatricians in town. She asked all of her neighbors for money for the fees, and she gathers up her courage to admit that she thinks that something is wrong. Sarah and Rose wait for hours in the pediatrician's office. When they are finally seen, the imposing man across the desk tells her that she should bring her daughter to the AMPATH clinic for a special test.

"A special test, for that problem," he says. And she knows the one weighty word that remains unspoken - HIV. But they have treatment there, he says. And Sarah goes, if only to have a chance for a 3:00am where she can sleep.

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Now, Sarah and Rose sit across from me in the pediatric HIV clinic at AMPATH. Sarah is clutching a pink, folded slip of paper the size of a credit card. On that pink piece of paper is that one weighty word, the answer to Sarah's nighttime worries. Rose is infected with HIV.

I cannot read the expression on Sarah's face. Someone else has already told her what that piece of paper says, but I cannot tell whether any relief at having a name to put on her worries is completely drowned by the new worries that this diagnosis brings. I can only guess at her questions because she does not ask them of me.

Will my daughter die? How long will she live? How will I manage to give her these medicines every day for the rest of her life? What if something happens to me? How will I tell Rose that she has HIV? What will happen to us?

"This is a disease that you can live with," I say. I try to speak to those 3am fears. "With treatment, Rose will grow strong and big. She will be able to go to school, to get married, to have children."

I listen to their story, look at the lab results, do my examinations, and come up with a plan for which medicines to start for Rose. But I am guessing that the best thing I can offer to Sarah might be my explanations: what it means to have this virus living in your body, how we can keep the virus sleeping with the medicines, why these medicines need to be taken every single day, how we will partner with Sarah for the rest of Rose's life to help her grow and thrive and understand.

I know that Sarah probably will not be able to hold on to these explanations in the midst of today's shock and worry and hearing only that ONE WORD that no one wants to hear. I know that we will need to have this conversation again and again. I am hoping, though, that she might hear that she can have hope - hope in a treatment, hope in a clinic, hope in a commitment to partner with her, hope in a long life for Rose.

My plan for 2013 is to keep building that hope. Whatever I can do, whatever our program can do, whatever our research can do. Building hope.

Posted at 09:40

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