Why do we do this ministry? There have been quite a few people who have asked me that question. It has been asked by both Guatemalans and Americans and is usually stated with a look of confusion. I have been planning to answer that question in this blog for some time, but I am only now finding a chance to do so. So, here goes…
When they found out that they were expecting a baby they were both excited and scared. It was difficult enough to feed themselves, and now the task will get more difficult with another mouth to feed and another body to clothe. But, as usual, the excitement overcomes the fear and the father begins to look for other work he can do when the avocado plantation has no work for him. He begins doing odd jobs and they see their income increase to about $120.00 a month. That should help.
Their daughter, Maria, is born six weeks early, but she seems healthy. She is tiny, but begins to grow and they believe everything is fine. However, at five months her mother begins to notice that she is not developing at the same rate as her nephew who lives nearby. She is still not lifting her head well and her limbs seem to be stiff. Her tiny fists curl into a tight ball around her thumb and her feet tend to point downward.
At first both father and mother tell themselves that she is fine. Children develop at different rates, and she will soon catch up. But as more time passes their concerns increase. At her first birthday she still cannot sit on her own and is unable to crawl. So, they catch a bus to a nearby town to visit the health clinic.
At age two, they have seen no improvement and, in fact, she seems more stiff than before. Her legs and arms will no longer straighten fully and they have noticed periods in which her eyes roll back in her head and she trembles and becomes more tense. So, they take a two hour bus ride to the national hospital. After waiting four hours to see the doctor, they were finally ushered into a room where the doctor did a cursory examination and told them that they needed two tests. The total cost for the tests was Q1100.00 ($140.00 US).
Meanwhile, their extended family had continued telling them that their daughter was cursed by God and the only way to lift the curse was to let her die or abandon her.
When we met them their daughter was 2 1/2 years old and they were still giving her the vitamins while praying for the money to have the tests done. They were desperate and very much alone in their plight. Out of both money and vitamins they were hoping we could help them pay for the tests. That was a difficult conversation. I sat and explained to them that their daughter had cerebral palsy and that there was no cure. I also had to explain that the vitamins that they had been buying at great sacrifice for the last 1 1/2 years would not help at all and, while the tests would show them what areas of the brain was damaged, there was nothing that could be done to correct it. Both Maricio and Lydia cried as the truth became clear.
This wonderful little family was surrounded by obstacles. They faced a financial obstacle as they could not afford the medical care their daughter needed. They faced the obstacle of ignorance in much of the medical community that spoke of vitamin deficiencies instead of the real cause of their daughter’s illness. They faced the obstacle of indifference that caused a doctor to send them away with orders for tests that he knew they could not afford. And then they faced the obstacle of isolation, believing that no one could or would help them in their plight, and knowing their families did not support their love and fight for their daughter.
If I could use one word to describe the lives of families in Guatemala with children who have special needs I would use the word “obstacles.” On a daily basis they are surrounded by obstacles yet have few or no resources with which to face those challenges. That is why so many children with special needs end up in institutions. Often they have loving families that have no means of caring for the children they love.
Put yourself in the place of Maricio and Lydia. Imagine it is your child that is suffering and you are desperate to find help for them. For just a moment, feel their anguish and desperation. What would you do in their place? The answer is this: Nothing. There is nothing you could do more than what they have done. There is no government program to help. There is no means of increasing your income. There is no recourse available.
That is why we do this ministry. We are here to help families tear down the obstacles that are surrounding them.
This is where the story begins to take a happier turn. While the Maricio and Lydia were still crying, we were able to comfort them. We told them that, while their was no cure for cerebral palsy, there were some ways we could help. I explained that their daughter was not cursed, but both she and they were loved by both God and us. I showed them a picture of my daughter, Kimmie, and explained that she had CP as well. I then explained how she had blessed our lives and family. And we then began to talk of how we could help with physical therapy and anti-seizure medicine.
But, above everything else, we told them that they are not alone. We promised that we would walk with them and face their obstacles at their side. We also told them that Jesus would walk with them if they would allow Him to do so. At this point, Lydia began to cry and told us that she and Maricio had felt so very alone for so long, but now, for the first time, she felt like there was someone with them.
And so, my family and I live our days surrounded by wheelchairs, formula, braces, crutches, doctors and therapists. The same is true of all those who work with our ministry, including the Beyer family, Gerardo Hernandez, April Clark and Aura Monroy. We do that because we never want these families to face these obstacles alone. We are also working hard to make Hogar de la Esperanza a safe and loving place for children with special needs who still end up in the system, and our desire is to open additional homes like this one to accommodate more children. We do all this to bring glory to Jesus Christ by caring for those whom others have written-off.
There are moments when I just feel overwhelmed and scared. (I know, not the kind of thing you want to hear from the missionary you support and pray for.) But before you write, I want you to know that I do have faith and trust God…most of the time. Most days I have a bounce in my step and most nights I sleep like a baby (actually, better than most of the children and babies in our house). But there are moments, hours and even a few days when the fear creeps in and robs my joy and my sleep. The e-mail messages from encouragers slow down and stop, the work and financial load increases, donations dwindle and the enemy shouts doubts at the top of his lungs. It’s the perfect storm, and its effects are terrifying.
That is the real reason I am writing about all the Maricios, Lydias and Marias today. I think it is really more about answering my own questions than answering yours. Some days I just need to remember why we do this ministry in order to get my bounce and peace back. Today is one of those days.
Blessings from Guatemala…
Daryl, Wanda and the Crew
