Thursday, June 26, 2014

Someone Cared

Petronia before treatment in spring 2013
She is 34 years old, with four children and a husband who is a laborer in rural Guatemala, which means he can sometimes find work and sometimes not. The only unusual thing in the sentence above is that she survived to the age of 34.
In May of 2013, the day our Finding Freedom staff member took to a Guatemalan doctor, Petronia's blood sugar was over 1000. A normal blood sugar reading is considered to be under 120. Petronia knew she was sick, but her husband struggled to feed their family and to keep the children in school, and she knew better than to ask for him to take her to a doctor. The money simply wasn't there. They were 3,000 Q's ($380) in debt just to keep their children fed.

Uneducated women are not stupid, they are simply unschooled. Petronia is smart in ways FFF board members couldn't conceive of; she knows how to make a meal stretch, how to build a fire using just the right kind of wood, how to get clothes sparkling clean even when washing them in polluted water. She can forecast weather, negotiate the problems in her community and she is resilient and brave. But she didn't know how to get rid of the malaise, nausea, neuropathy and itching skin she suffered for several years before seeing a doctor. Her severe weight loss and muscle wasting was a mystery to her. She only knew enough to ask for help.

Taking a mother like Petronia into our program is financially risky. We have no separate budget for
Blood sugar check by FFF volunteer, six months later

medical needs. Medical care for mothers is more expensive for us than food donations, and furthermore, Petronia has a husband, so she does not fit the criteria for our assistance. We only took her into our circle of concern so she could access medical care; what started as one visit to the doctor has turned into a year long relationship. In the nonprofit world we call it the "gray zone"...dealing with human lives has no black and white area, no crisp edges. She has four children that we didn't want to leave motherless. It was enough reason to add her medical needs, and occasionally a food donation, to our program. Thanks to a few special donors, we have been able to keep her supplied with the life-saving medicine you see her holding below. 

Diabetic meds donated by FFF

A year ago we received this message about her from Roland, one of our facilitators:
 She has nausea after eating. She has pain in her ovaries. She has pain in bones in all of her body. She is having burning pain in her vagina. She has gastritis. She has pain in her head. Since 5 months ago she has great difficulty to sleep. During the day she has her eyes closed most of the time. Could be that she has diabetes? She has not received exams and she can’t afford exams, journey or medicines.We can travel with her to the doctor’s clinic on Monday. The doctor said he wants to make blood exams and other exams of her. She repeated, "I am having tremendous pains."
Many monthls later, Petronia's health is still very fragile. Her diabetes would be a challenge to care for here in the states; in Guatemala it takes herculean efforts on the part of Pedro and Roland to get her transported to the doctor, scrounge through local pharmacies for the right medicine, and to deliver the food we send every few months. Her blood sugar last month was still over 500. We have a long way to go, but she is still here, a year later. Her face is filling out, and her eyes have brightened. She is listening to the advice the doctor gives her and she is compliant with medical care. 

Another year of mothering her children, and year of knowing that someone cared. 

Which means almost as much as the insulin she is holding.

Thursday, June 19, 2014

He Would Be A Hero

"I have spoken with many Guatemalan men and women about them coming to the USA to find work. All of them have been in a desperate situation. I have told them all it's not a good idea to go illegally to the States. It's dangerous and more than not they won't be able to find jobs.Yet this is hard for them to believe. They all know someone who made it to the U.S., found work and is now sending money to their families. One day in February I sat in a dirt floor adobe hut precariously placed on a Guatemalan mountain side. Manuel sat with his 2 year old son on his lap and his wife by his side. He was explaining to me he desperately needed to leave for the States. He didn't want to leave his family but they were hungry and he need to do something. A family living 100 yards down the road from them were receiving money from the their son in the States. They now had food, better clothing and a better house to live in than before. Manuel could not believe he may not have the same luck as his neighbor. Manuel believes he would be one of the people that made it here and found work. Then he would be able to support his family. He'd be a hero. He didn't consider what would happen if he was sent back home. None of them do."

The words above are taken from an email sent by a Finding Freedom friend who is expressing his thoughts about the past and the recent human tide from Central America who are crossing the border illegally. 
These concerns are not just words and feelings for us, they represent people in Guatemala who we are working with daily.  Two of the women in our program have lost, respectively, a husband and a son who died while trying to cross the border to  find work in the states. One FFF mother recently had her son return to Guatemala after he served a six month jail term for crossing into the U.S.. He now owes the coyote $5,000 that he can't repay. He supports his wheelchair dependent mother and his four siblings and he hasn't found work since he returned.
Reality is just about as authentic as it can get when FFF volunteers are in Guatemala sharing a day with a recent widow who sent her husband off to the land of opportunity, only to have him return in a coffin. 

Catarina became widowed after her husband died crossing border

Crossing the border is extraordinarily difficult, dangerous, expensive and terrifying. 
Living a life of extreme poverty is no less so. 

What would you do if you were in these shoes; when being a hero to your children simply means being able to house and feed them? 
The recent news events concerning the flood of children who are illegally crossing our borders looks very different depending on which side of the border you stand on; the side of desperation or the side of opportunity. The reasons for this current humanitarian crisis are political and economical, and very, very sad. Our board members are tired of watching the news of the new waves of arrests, looking for faces we may know.
Finding Freedom's role in this human drama is small, and seemingly insignificant against the crush of numbers. 
We simply want to feed, educate, employ and house the people in the mountains of Guatemala so they don't have to leave home to be a hero. 
It seems so easy. 
It is so damn hard. 
It involves long nights at the computer, long days writing grants and longer weeks balancing budgets, packing humanitarian supplies, documenting spreadsheets of information on our families, and working hard at our jobs so we can donate out of our own pockets to keep our program going. 
And if it keeps even one girl in school so she has earning potential, or one family fed, or a roof intact against the relentless rainy season, then it is all worth it. 

The family now walks 6 miles a day to earn money by washing laundry in a nearby village

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.