Dedication and Difficulties

I feel incredibly blessed to do the work we are doing. I am continually reminded what a great privilege it is to be in the lives of the people we serve. There are, however, days when the challenges and difficulties feel really heavy.

This has been a particularly challenging week for our team. Here are a couple short stories that speak to the dedication and commitment of our amazing team  –

Tres Hermanos: We have three brothers who have lived in our home in the city of Ica for a number of years. The brothers – I will protect their identities and not share names – desperately want to build a life that includes school and work. For the past few years, they’ve been in a holding pattern – awaiting a signature from their mother to move forward with their lives. All we have for the mother is a nickname. She lives in sprawling squatter community of over a million people in the city of Lima called San Juan de Lurigancho. She works as a prostitute and sleeps in different places each night. We desperately need her to sign the birth certificates for the children, in order to get them formal entitlements. She refuses to sign the documents. She is afraid that signing means the children will be sent back to her (even though the boys have not lived with her for over 10 years;   and, she has 7 children all living in homes like Casa Girasoles). Her life is so chaotic and fractured. She is paralyzed with fear. Our social worker had to walk street to street in the last neighborhood the boys remember living to find her. When she finally found the boys mother, she was drug affected and fearful of the implications of the criminal charges (she has a number of denuncias – similar to warrants). She refused to sign the paperwork. Not to be deterred, the team is already working on a plan to spend the night in one of the staffs car to be in the area where the mother lives. They won’t give up. This, I am certain.

Sr. Roberto: This past January we were helping a partner NGO with an outreach project in a rural mountain community in the Sacred Valley. One day, while wandering around the community with a professor from a university, a women approached and asked if we would go with her to see her husband. She, speaking in Quechua, wanted someone to help her husband “get out of bed.”  Thankfully a number of team members on the project spoke Quechua. So I grab my medical bag, a nursing student and a Quechua speaking guide and we hiked the almost hour to the family home. There, lying on a bed in a cramped, dirt floor room was Sr. Roberto (not his real name). Through a convoluted conversation in Spanish and Quechua, and a review of a number of documents from various hospital visits and clinic appointments, it was determined that Sr. Roberto was suffering from ALS (amyotrophic lateral sclerosis). Worst of all, he and his family were completely unaware of the diagnosis, prognosis or next steps.

He pleaded with me to help him get to a neurologist. I assured him I would do everything I could. I left money with the family for food and clothing and promised to return the next day. That night I put together a referral letter and a plan of supportive and palliative care. We decided the best course of action was to advocate for Sr. Roberto by getting him seen at the regional hospital in Cusco – a complicated process that would involve visiting the local health post in a community about 15 kilometers from their house. With no money, no mechanism for transportation and only a modest level of Spanish language skills – we knew we had to be the advocacy for Sr. Roberto. What followed was a complex set of arrangements, a hospital system that refused to see him and a lot more questions than answers.

Fast forward to this week and our team was back in the Sacred Valley to visit our Casa Girasoles home. We decided to revisit with Sr. Roberto. We were told his brother had taken him to a private hospital. After almost a full day visiting a number of hospitals and clinics, we finally got a phone number for Sr. Roberto’s brother. He was not in a clinic or hospital – but at his brother home. We packed into a car and made our way to the family home. Inside a small, dimly lite room that was primarily designed to store farming supplies, was Sr. Roberto. His condition has greatly deteriorated. Through a complicated and very emotional conversation we talked about the diagnosis, prognosis and next steps. We talked options for care. We talked about what Sr. Roberto most wants. He told us he wanted to go home. He knows, however, that his single room home – without running water, a concrete floor or hygienic areas – is not a great place  He wants to know his children, he and his young wife have three, one girl only 7 years old, have a future. He wants to die at home. We talked for a long time. We laughed and cried together. We decided we would build a plan. And, well the HBI team – in partnership with our colleagues from the Minneapolis-based NGO Andean Community Partners, are going to do whatever it takes to help Sr. Roberto to find the dignity and support he deserves.

This week has been tough. One thing is clear – we won’t give up. There is too much at stake. The one thing we have in abundance is our dedication. I am so proud of our team!