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| Julius (left) speaking to Mark in November 2019. |
In one of the tribes in Uganda,
there is a common proverb that can be paraphrased as ‘stories of tribulations are not only told by elders but even by children
who have lived through trouble’. Of course, the norm is that it is the old
who tell stories. All sorts of stories. In fact, for this particular tribe,
many homesteads still have fireplaces where young children gather every
evening to listen to the escapades of their grandparents.
The life story of Julius is an
adventurous one. He tells it brashly and with the confidence of a conqueror. He has
seen and experienced what some adults are yet to. Julius doesn’t know his
biological father. All he knows is that his father was from some distant
district and that he was not a good man. Stories are told about the man mistreated
his mother until she left the marriage. She traveled back to her parents with
two boys. So Julius and his elder
brother have grown up at their maternal ancestry home.
Julius remembers a few days of fun
with his mother. The few days are memorable though short. For the larger part
of her stay with her two boys, she was tormented by a ‘strange sickness’ as
everybody in the village called it. Together with his two boys, she trenched 8
miles to collect her medicine refills from Tororo Hospital. Months before she
dies, she was unable to walk that long for her medication. This was Julius’
first episode of walking the 8 miles to collect medicine for one he loved. He
had to do this in turns with his brother. One had to remain home to care for
the sick mother as the other walked. The journey would begin before sunrise and
end at dark. Almost all the time, there was no meal between the hours of
walking. Sometimes there was a piece of sugarcane as an ‘energy booster’. Later
on, the mother succumbed to AIDS and was buried in front of the house they live
in up to now. At least she had escaped the horrendous pain she endured.
“She is resting peace… ” Julius says.
After the death of their mother,
Julius and his brother lived with their old grandparents. Soon, the
grandmother’s health deteriorated. She had been sickly hitherto though not bedridden. They were in and out of Tororo Hospital. Soon the second episode of
walking the 8 miles resurfaced. This time, the walking was not as often because
a team from Hospice Tororo visited and delivered the medication regularly. But
sometimes it would be investable to walk. On all occasions, Julius picked Oral
Liquid Morphine. The lack of this medicine caused sleepless nights at their
house. The availability of it meant peaceful rest to their dying grandmother
and to everyone in the home. Later on, the grandmother died of liver disease and
was buried near her daughter’s grave.
The house was now left to three ‘men’,
the young Julius and his brother and their sickly grandfather. The old man became
weaker by day. His energy was giving away. But he often confided in every visitor
that he was a happy man. He was happy because ‘good Samaritans’ had offered to
support his grandson Julius through school. He had been assured that Julius
would be supported to continue school even after the death of his parents and
guardians. A team from Hospice Tororo
visited the old man regularly. Julius and his brother trekked the 8 miles for
the 3rd episode to pick medicine refills for another they loved. The
old man died due to prostate cancer in April 2019 and was buried near the
graves of his wife and daughter.
The episodes above have an
average of three years between each. Whereas Julius was on and off for his school
days during that period, his elder brother dropped out of school completely. He
got married and started another life of struggle with his young family.
The main reason for Julius’s stay
in school was the Road to Hope Program by the Palliative Care Association of Uganda
(PCAU). The program supports child CareGivers on a range of interventions
including Health Care, Psychosocial Support and Education Support. This program
is supported by PCAU’s partner the Center for Hospice Care in Indiana USA under
the arrangement of the Global Partners in Care.
Julius’s story is unique but every
one of the 58 children being supported by PCAU has a profound story. Suffice to
say, these stories are not exclusive to children on this program. There are
many other children who are vulnerable in Uganda. Statistics by the Uganda Bureau of Statistics showed
in 2014 that of the 17.1 million
children below 18
years (over 50.7%
of the population)
in Uganda, 11.3%
were orphans, 8%
were critically vulnerable
and 43% are
moderately vulnerable. Of those
who were orphaned, 46% (1,108,080) had lost their parents through AIDS.
The story of Julius is, therefore,
the story on the lips of many children in our country. What is paramount to
note is that each of these stories can be changed. This year (2019), Julius sat
his Primary Leaving Exams (PLE). He is extremely excited that he has attained
some level of education. To him and his entire community, this was never
envisioned given the circumstances surrounding his upbringing. Julius is an
influence on his peers in the community. When a team from PCAU visited Julius
at his home recently, he had just returned from giving a talk at his former
primary school. As he waits for his PLE results, he has decided to offer his
time to counsel his peers on virtues of endurance up to the end. In his former
school, he is famed for his confidence in public speaking and presentation.
Julius is hopeful that he will pass his exams to join a secondary school in 2020.
About the Road to Hope
Program
The Palliative CareAssociation of Uganda (PCAU) in partnership with the Center for Hospice Care (CHC)
in Indiana USA, established the Road to Hope project in 2012 with an aim of
supporting child caregivers for palliative care patients to enroll in or
proceed with formal education. The program was in response to a serious call by health
care workers that PCAU should support them to address one of the key
psychosocial pain cause among palliative care patients. The pioneer child on
the program was George Bazeire who took care of his sick father till death and
was thereafter left alone and frightened in a dilapidated house. To date, the
Road to Hope Program supports 58 children from various districts. The children are identified in collaboration
with palliative care practitioners especially in the rural districts of Uganda.
