Lately though, I have been working closely with a Pediatric hospital here in the main city of my state. It is getting to me a bit. Kids, when sick, break your heart. But when they are dying, it destroys you. To the core. Not being able to help keep them safe is devastating.
Watching them die at home, a living nightmare.
These kids are so brave. They still laugh and smile and love. They go through treatment with minimal complaint. They mostly want to play and eat junk food and watch Disney movies and hang out with mom and dad and siblings and friends.
They don't like the nurse so much. The nurse reminds them that they are ill.
I sometimes hate being the nurse. I hate being the one that isn't there to play and have fun. The parents are tense when I arrive. The siblings hide in their rooms.
Sometimes we bring good news. No changes! Things seemingly stable! But we also, many times, bring bad news. You can see the faces of those in the room just bracing for it. And, as hard as we try, we know we are welcome, but not really. We think we are part of things in the home, sometimes going there daily, but not really. We think we know how they feel. But, not really.
And that makes us sad.
But I know how lucky I am. I get to go home after my visits to my healthy daughter and husband. My now teenaged daughter complains about school, homework, being tired. She complains about me not buying anything good to eat. She wants a new sweater. She is bored. She doesn't want to take the dogs out. She complains about a lot of nothing.
This is all music to my ears.
And I hug her for it.
This always, not surprisingly, puzzles her.
I cannot explain to her what it is like in these homes. She knows what I do and she hears bits and pieces. But unless you are there, it is hard to explain to anyone.
So I don't.
I don't tell people how awful it is for so many. I don't lecture them on how important life is. They all know what I do. Most do not want details. But what I do tell people when they complain to me about things that seem important to them, but are essentially trivial, is this; enjoy every minute of it. Enjoy complaining about the mundane, the ordinary. Enjoy it for as long as you can. It is a blessing in disguise. A song to my heart. The other day I was in a crowded elevator just having left the room of a couple whose baby was in the NICU and was soon to go home with them to die. It was horribly sad and I had been with them for three hours planning what we could do to get their precious baby home, even for an hour. It was emotionally draining for all involved; the parents, their extended family, the staff of the NICU. Everyone.
When I finally left, I had a very heavy heart thinking about them all. So when I got into the elevator and there were people jammed in, I tuned in, not out. I heard people talking about the weather. How rainy it was. I heard someone talk about the crappy food in the cafeteria. Someone else said they were sure they had lost their keys.
And I felt better. Because this is life. The small, petty nonsense things that make up our world and our thoughts. The things that make us laugh, and rage and stress out. This is where we live. Who we are. And death does not make these things irrelevant. Death makes them a celebration.
And I went home with a much lighter heart.
