Sam was my introduction to the world of strange muscular diagnoses. I was pretty relaxed about her. Then I met Carlos. And in all the reading I did on him to try to figure out what was going on, I started learning that Sam had potentially much more going on than I’d previously considered. Then Rosa came. Then Osman. Then Lucas. And that’s just been the past month. All of a sudden, I am running a muscular mystery clinic and racking my brain wondering how these children have survived so long with so little help. It is a pretty awesome testimony to the care their families give them that they are as happy, as well-nourished, and as well-tended to as they are.
When you consider their background, you learn that most come from homes with low literacy rates. Only one has a parent who has graduated high school. Most come from families where there is no steady income. The daily tasks of caring for the child is the only task the primary caretaker does. It is full-time. There is no one else to help, and no way to do more. And yet it is all done without complaint, without pity parties, and without any mention of ever desiring a break. I am challenged by the quiet humility and strong dignity I see modeled in the caretakers of these kids.
Carlos is 7. He comes to clinic in the arms of his dad, because they can’t find a wheelchair for him. He sits on the table in my room, grinning and laughing. He hasn’t walked in 2 years. He is losing strength in his arms. He loves to color, although soon he likely won’t be able to anymore. His gap-toothed smile shines across the room at me as he asks for another sticker.
Sam is 2. Abandoned by mom, she is cared for by her elderly grandmother. Sam lays limply in her arms, never fighting to sit or change position. Her eyes focus on me and track. If I work really hard, I can sometimes win a hard-earned smile from her. She eats only soft foods and liquids. She cannot hold a bottle. It takes hours a day to get the necessary nourishment into her to maintain her at a healthy weight. Grandma spoon feeds each bite to her. I wonder what will happen to Sam when Grandma is no longer able to care for her.
Rosa is 12. She can still walk short distances, but her body is so warped by spasms that it is necessary to move her in a wheelchair for long distances. She is cognitively intact, but quickly progressing and losing the ability to consistently communicate. Her eyes track my every move during her visits. She is sharp. She latches onto words. Asks questions. Has dreams of what she wants to be when she grows up.
Osman is 14. He stopped walking 5 years ago. Somehow, his parents have kept him in school. He is in 6th grade. He loves to read. He is so excited to tell me of the latest math lesson, I usually have to limit his conversation so we can fit an actual exam into his visit. He smiles so big, his cheeks puff out and beg to be grabbed. I wonder how his face doesn’t hurt from all that grinning.
Lucas is 5. He is Osman’s little brother. He is just beginning to show signs of weakness. The family knows what is coming. They bring him in, desperate for a way to stop the progression. For now, he still crawls on the floor, playing with cars. He climbs up on the chair to read a book. He holds my hands to jump off the table. In only a few short years, he will no longer be doing any of that.
It started with one kid, and now they are coming out of the woodwork. They are coming and saying “so-and-so was seen at this hospital. They told us we should come here.” There is a whole under-ground network of parents with disabled kids that I had no idea about, and I still can’t fathom how it all works. They are coming from distances requiring a full day of travel. They are coming on public transportation and changing buses and taxis multiple times to make it here. They are coming from areas with no roads and traversing rough terrain with kids who either come in arms or in wheelchairs, all for the chance to be seen. I read all the notes they bring with them, I listen to the stories, I ask the questions, and I wonder “what more do I offer? What more should I offer?”
Is diagnostic certainty worth a family’s livelihood? Is the search for extensive (and expensive) testing that won’t change the outcome of value? Is setting up care plans to monitor in a culture where preventative medicine is so foreign of any use? In my western-trained mindset, absolutely! In a culture where uncertainty is part of life, where answers are often elusive, and where there is a constant undercurrent of a fatalistic attitude — not necessarily.
I’m still working on answers to those questions. Instead of finding more certainty in an answer with every patient visit, I find more reason to change the answer I thought I was settling on. I am learning that my best isn’t necessarily using every resource at my disposal and fighting till the death. Instead, my best is about evaluating the situation, knowing the resources, and then wisely stewarding their use. And that changes in every. single. encounter. But what doesn’t change is the reality of these kids’ souls. So with each kid, we talk of life. We talk of now. We talk of Jesus’ great love for them just as they are. We talk of the day they will run again on streets of gold. They wedge their way a little deeper into my heart every time they come in. And when they leave, those smiles that I didn’t think could get any bigger have grown just a little bit wider.