The school was remote. The building sparse. The community seemed desolate. We were providing a school-based outreach clinic, a health fair, where we taught kids about health, hygiene, dental care and self esteem. We were working in partnership with a local organization. The day was going along as expected - too many classrooms and not enough time - that was until one of the teachers asked if we could help with a "special case."
Special cases are not unique to our work. Every time we are out in the community we're asked to consult on a special case. Often our contribution is reassurance. Often we are just acting as caring, compassionate witnesses to complex challenges that have no easy solutions. The special case at the small town high in the mountains - that was something entirely different.
The little girl had been seizing since she was very young. The seizures had become more and more frequent. She had not seen a doctor. The mother, a woman barely 30 years old, worked at the school as a caretaker . . . a janitor. As a part of her salary, she received a small room to live at the school. Her husband worked in a mine many hours away. When he was back "home" to their room at the school, he was often drunk and abusive. He had little patience for the needs of a medically fragile child.
When we saw her, she was in a desperate way. A condition known as Status epilepticus. She was seizing so often that she was literally in a medical emergency. We had to make a decision - do we intervene, make the unconditional commitment to help? Or, do we work to get the family to a hospital and hope the health system would advocate. We decided, after careful consideration, that we needed to go all in. We needed to do everything we could to support this little girl and assure she survived.
The details of what happened next are complicated and involve years of advocacy and support. Her's was not a simple story with a simple solution. Her story was complex . . . made all the more complicated through the context of entrenched poverty, intimate partner violence, substance use disorder, classism, and fear. We stuck by the family for a number of years. All the while, fully aware that our commitment was well outside the scope of our original outreach project to that far flung school. And, fully aware that we had an ethical responsibility to stay committed . . . even when things felt overwhelming complicated.
Things didn't end with rainbows and unicorns. We lost her and her family to follow-up. The last we saw her - we made a 9 hour trip to a small town high in the mountains. We visited her and her father (he made the remarkable commitment to be fully available to his daughter - even after the mother left with their other daughter and had not been heard from since) in a small family home. They had the medicine and she was no longer seizing, but they had stopped going for their medical controls. We did what we could to get them connected to the local health post - going so far as to walk them over to the clinic and sit with the young doctor to craft a care plan.
However, life seemed to pull the family in a different direction and we lost touch. I think about her often. I know there is no simple solution. But I am thankful that HBI is flexible enough to be present to challenges that seem to have no solution.
I am thankful for a team that focuses on services over programs or projects. HBI works to build models of care delivery - and, we never forget that people are what make the models successful.
Thank you for all your continued support.
The HBI Blog is a rotating journal from our staff. Our Blog is a series of messages from the field, insights from our work, and lessons in service.