I haven’t really had time to think about how to explain all that has gone on with this situation. It is difficult to write about when it seems like the situation changes daily and we are still uncertain of what is going to happen.
This is about Lydia. She is one of the craziest, spunkiest, most stubborn, 5 year olds I have ever met. Naturally, we are great friends.
If you follow me on Facebook, you have seen her face. Heard bits about me taking her to the hospital. Know she is sick. Here’s the summarized story and a bit about why it has been so difficult physically and emotionally.
In March, she got sick. It probably happened long before that, but in March her symptoms started to show and she became so inflamed she was unrecognizable. Since March, it has been a difficult and frustrating journey trying to weave in and out of an unreliable, foreign healthcare system and parents who don’t have the resources or education to do anything to help their daughter or realize anything is wrong.
With the help of some incredible people both here in Nicaragua and in the States, we have tried to get her seen and treated…treated for what? We didn’t know. But it was killing her. I was Stateside in July when I got the text that her organs were shutting down and she might not make it through the night. But she did, because she’s a stubborn little thing.
In September, we started looking for different help. And realized that she wasn’t being cared for like she needed to be by her parents. Rounds of medicine were stopped in the middle of treatment, she was eating a diet she wasn’t supposed to, she was missing appointments, and we didn’t know what to do. We got in contact with Cheryl, an amazing woman who works with children who are sick, handicapped, or neglected throughout Nicaragua. She helped us get Lydia into another hospital. The day she was admitted could be a blog in itself. After waiting 5 hours in the Emergency Room watching other traumatizing emergency situations pass by, doctors took one look at Lydia’s “before she got sick” photo and admitted her.
I wish I could say that was the end. That she was diagnosed, released, sent home, and is better. I can’t. It’s been so frustrating working through family dynamics. We visited her once or twice a week (as the hospital is an hour away), met with doctors, reviewed her medical charts, talked to her mom, and made Lydia supplemental “homework” assignments so she could practice her writing (I mean, we are teachers!). One day, we showed up and her mom had bought herself new clothes with money we left, and another day, we showed up at the hospital and they were gone. The nurses said her mom took her out against doctor’s orders. A long, hard conversation and several days later, she was back in. Lydia spent almost two weeks in the hospital this time. (Not counting the earthquake when the hospital sent everyone home for two days.)
Nephrotic Syndrome. That’s what doctors are saying she has. It can have a good prognosis if treated and properly cared for.
Treated and properly cared for. This makes everything in me scream a little, because it sounds SO EASY. It’s not. I’ve set up appointments so that I can personally talk to the doctor, I’ve picked Lydia up from her house to take her to get tests done, held her while she cried because what 5 year old likes having her finger pricked, cooked for her, carried her around because she gets tired so easily, held her on the bus while we both passed out so tired from getting up at 4am for her appointment, and told her what she can and can’t eat because her mom doesn’t listen.
I was mad at her mom for a while, frustrated that she wouldn’t take care of her. I had to look for some grace. She doesn’t want Lydia to be sick as much as I don’t. We just have different ways of approaching it. She has tried desperately to believe Lydia is better, that she’s not sick, and to ignore it. She’s scared. She had never been to the capital city until she had to go for one of Lydia’s hospital visits. She doesn’t know how to do it. She doesn’t really know how to be a mom as her own mom died when she was young, and she has never been to school in her life. She relies on Lydia’s nine-year-old sister to read and write. We’ve had conversation after conversation to encourage her to take control of Lydia’s treatment, and I have seen a small improvement. What we are asking her to do is hard. I try to remember that. I have to remember that.
This is where the line of dependency and empowerment gets so messy. I want to do everything I can to get Lydia well. More so, I want her family to take that role. Her mom sits in the same appointments as I do, but it takes hours afterwards going over her medicine routine for her to understand it. I made a notebook with picture instructions and a chart to color in circles for every day she gives Lydia her medicine. What comes first? Lydia’s health or stepping back so that her family MIGHT step up? I don’t know the answer.
I pray that I am empowering her family by pushing the dad to get work and not doing everything for Lydia’s care. I pray that empowerment comes through her mom filling in the medicine circles and just checking in to make sure Lydia had her meds that week. I pray that I can find the right balance between empowerment and Lydia getting better. Somewhere, there is a line. And I hope that we can find it, because I love that little girl so much.