Grace and I are hanging out in her room. She’s been admitted for a VEEG (video EEG) so she can’t leave her room except for one hour a day. She needs to be monitored at all times. This is a wonderful place. It’s a specialty hospital so the doctors here are highly specialized. We are in the Neurosciences Unit. There is a tiny girl in the room next to us with the sweetest voice. She cannot walk on her own, and she’s on oxygen. I’ve not seen her parents so the nurses are in the room with her most of the time playing with her and helping her walk and exercise. She doesn’t cry. She must be very brave.
The Child Life Specialists invited Grace to the common room last night for crafts. She had been saving up her time to be off the monitoring for the evening so she was excited to actually walk around! We sat at a table with a boy with cerebral palsy. He was born at 23 weeks gestation and had endured 14 surgeries to date. He was in sixth grade. His dad, John, was conversational and down-to-earth. When you’re in a place like this, I notice that all the parents are quick to ask what’s wrong, and there is no judgment. John asked me directly why Grace was here. So, I told him. Grace was being looked at for possible seizures, but her doctor was also trying to track vascular activity in her brain. I explained her current diagnosis, and he just nodded. He didn’t look at her as if she had a contagious disease. He just said, “I bet her migraines are related to her schizophrenia. That’s a brain thing, I bet.”
John drives a truck for a living. He isn’t a scientist, but his conclusion was the closest thing to accurate that I’ve heard from anyone. It’s amazing what people are capable of when they aren’t afraid. I met his wife a bit later, and she looked utterly exhausted. As it turns out, they were from Indianapolis. They had just driven ten hours to get here, and they didn’t know how long they would be staying. Their boy was in line for yet another surgery. I stopped and looked around at all the children present for craft night. Grace was the highest functioning child there. Every child was strapped into a wheelchair. Most were barely conscious. I looked at the two parents from Indianapolis, haggard from road weariness and worry. The suffering that families know. It was overwhelming. I wanted to do something about it, and I couldn’t. So, I chatted with this family and their son. I asked them about their trip and their story. How were they doing? Where were they staying? Women are much quicker to discuss their emotions. Men often don’t want to go there. They want to do something. Stay active. Avoid feelings of helplessness. I’m like this. I will discuss feelings, but, when it comes to my kids, I would rather do than sit.
We were discussing the Ronald McDonald Family Room here in the hospital–a wonderful resource–when I saw John disappear. He came back with two cupcakes for Grace and me. It’s in this act that I see the character of people. Even exhausted from driving ten hours and worried about his son, he was generous. He still thought about others. This is really how we keep our humanity and empathy intact in the middle of caring for special needs kids. We maintain relationships with other people and try to avoid being self-involved. In a crisis, it’s hard to avoid self-involvement. You only have so many resources to go around, but, as a lifestyle, living generously is the antidote to that strange sense of entitlement that tries to creep in when unusual needs and hardship settle into your family.
Grace is currently watching “The Muppet Show”. She had her blood drawn this morning. I was told that her neurologist has indeed decided that she is testing her for mitochondrial and metabolic disorders. We were told that it’s very hard to diagnose mitochondrial diseases, and we may be referred to a mitochondrial specialist. We may be at the beginning of our journey there. They have asked me a lot of questions about my own migraine treatment since I have chronic migraines as well. Grace is plagued with almost intractable migraines at this point. I am hopeful that they will attempt to treat her. She is missing school.
I don’t feel fearful. I feel grateful. I feel so thankful that we have resources in our city. We don’t have to drive ten hours to find help. It’s in our own backyard. That was the last thing John and his wife said before taking their son back to their room: “You’re lucky.”
We are. In many ways.