Monday, June 9, 2014

The Boy

Finding Freedom board members are either medical professionals themselves or are intimately related to one. We have studied, worked with and cared for children with physical and mental challenges. Thankfully, our United States health care systems have excellent provisions to meet the needs of our patients. Some of us have required this same quality of care for family members. We have watched our children get CAT scans, intravenous fluids, visit local emergency rooms, undergo stitches, broken arms and car accidents. We have walked out of our neighborhood hospitals (sometimes the same ones we work in) with gratitude for the blessings of understanding the medical process and having the connections involved in getting a loved one back to health.

As medical professionals we have the ability to assess children and to have a unique understanding that certain children will always suffer challenges that will create hardships for themselves and their families. After years of working with children undergoing physical or mental disabilities, something seeps into our thought process. It is often unspoken, sometimes secretive and fear provoking. It happens when we see a child who can't be helped, children who are destined to be less than he or she was capable of being, either because of genetics or from an accident. 

 It is human nature to feel grateful that this child in front of us at the moment is not ours to raise. We can walk away, turn out the lights, lock our office doors and say a prayer of thanks that children like Jonathan are someone else's issue. Someone else, usually the biological parents, will make appointments, pace through sleepless nights with a sick child, and coordinate health care. It is a relief to be on the giving side rather than the parenting side of raising a child who will live with lifelong challenges. 

Children like Jonathan.

We are not sure yet what Jonathan's developmental issues are. Perhaps he suffers from birth trauma that caused a lack of life-sustaining oxygen as a newborn. He may be the victim of maternal malnutrition during gestation, or pediatric malnutrition at a critical part of his cerebral growth. His issues may be genetic; his grandmother is mentally ill and lives in his household, and is cared for by Jonathan's mother. 
For whatever reason, this boy, with his sweet doe eyes and languid features, will always be just that...a boy. His mother is afraid to put him in school; bullying among students is a universal issue. He will not meet his earning potential. He most likely will always need to be looked after by relatives who live day by day themselves and have little to offer him. Jonathan will not fill the expected role that the oldest son would typically have in rural Guatemala; to labor on behalf of his mother, to harvest firewood and crops and to help earn an income to feed the family.

There are no respite workers, no developmental pediatric centers and certainly no social service funds to help Jonathan's mother. She is the poorest of the poor in the highlands of Guatemala, and is new to our program. Jonathan will not receive interventional therapy to assist him in reaching deeply to find his hidden talents. There are no speech therapists, physical therapists, occupational therapists, vision specialists or even a basic pediatrician within hundreds of miles of where this family lives. Those of us who work daily with the realities of life for the critically poor in Guatemala have a saying: 
"It is what it is."

Jonathan's house: dirt floors, no furniture
 Jonathan and his mother Candalaria were referred to us by neighbors, who themselves live just a fraction above the means of this family. The villagers living near Candalaria and her sons knew that this mama was at the end of her ability to survive her situation much longer. 
Candalaria is the someone else that we think of when we see developmentally delayed children, whether here or in Guatemala. She is the only parent, breadwinner and guardian of everything her mentally ill mother and disabled son need. As a widow with no education and no job, Candalaria is in many ways as limited in her options as her son is. She is chronically exhausted, hungry and hopeless. 
And that is where, as medical professionals and parents, the real fear-based inner voice rises from. We all know that we would do anything humanly possible to meet the needs of our children to the best of our abilities. But what happens when the caretaker can no longer take care of those who need her most? 
Every parent has had this dark thought; the terror of wondering what would happen to your children if today was the last day you could carry on. 

 Supporting mothers so they can care for those who need them most is what we do as an organization. How we do that for this family remains to be seen. We delivered food staples last week so that the family has one meal a day for the next month. We can't help Jonathan with resources to nurture his abilities, but we can diminish some of the fear his mother feels when she wonders who the someone else is if she can't carry on.