Driving home after our house visit, one of the physical therapy students said, “I heard you talking to the Darrell’s mom. How would you answer the questions he asked his mom?”

Accurately perceiving a difficult situation, I shared a little more of their story. About nine years ago, shortly after moving to Guatemala, Darrell’s mom and dad brought him to ASELSI for a physical therapy evaluation. At about six years of age, it was evident he had Duchene’s Muscular Dystrophy (DMD) by the way he walked up his legs to stand and his frequent falls. As if this wasn’t hard enough to explain, I knew his mother was pregnant, and if there is DMD in a family, there is a 50% chance of each subsequent son having the same diagnosis. How would I explain that to the family in a culture that blames a woman for a son’s disability, where the woman may or may not have a choice on the number of pregnancies, where God is punishing someone by giving them a disability, and much more? The conversation would not be easy, but I felt the family needed to know and make their own decisions, assuming we explained it well enough to them. 

A few years later, after the birth of her fourth son, Darrell’s mom showed up at the clinic crying. Her husband had been drinking, leaving no money for food.  The boys woke up, once again, crying and asking their mom for something to eat. Heartbroken, she sold her last ‘huipil’, the typical top women wear here, in order to purchase food for her children.  Things at home were only getting worse. She didn’t know what to do.  Should she leave her husband? If she did, what would she do? What would he do? How would she provide for her family? 

Now, several years later, we went to visit Darrell and his family in their new home. Darrell’s health has been fading with increased hospitalizations due to pneumonia. One of his younger brother’s also has DMD, fatiguing quickly just getting up out of bed and falling frequently while walking. Their mother had to stop working in December when Darrell was hospitalized on and off for several months for pneumonia, while still looking for ways to provide food, shelter, and clothing for her sons. Thankfully, her church is providing some help and a few people bring their clothes to her to wash in her home as a way to make some money. Despite all this, there are many questions and needs. Life isn’t easy and there aren’t any easy answers, especially answers to the questions her son has about his disease, his pain and suffering.  He has questions like these:  Why did God allow this to happen to me? Why am I like this? Why do I have so much pain? Why am I not like other children?

My answer to the student was “I don’t know.” I don’t know what I’d tell Darrell, if he were my son, which would bring encouragement and love and not more pain. I know God is at work in and through him and there is a purpose. But how would I say that without sounding trite or minimizing his genuine pain and suffering? 

I may not have an answer, but I do have hope. I pray God gives us wisdom and discernment in how to minister to Darrell and his family in ways that show His genuine heart and allow us to enter in and share in the suffering while also looking forward with hope.