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 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
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.
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
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
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.