The Big Guy has been fasting after lunch each day, so I text him early in the day to see if he wanted to break his fast to go to hibachi for dinner to celebrate two kids with honor roll and a full week of no hospital visits. He texted back ‘Zes’, in the mangled affirmative that had emerged with Thing1’s first words 16 years ago.
It was my last day off during the kids’ spring break (the term Spring is used very loosely in Vermont to describe a mythical concept based on the absence of snow). While the Big Guy got done with work, I played Monopoly with Thing2 so Thing1 could drive himself for the first time since his anemia was diagnosed and treated over a week ago to see SuperGal.
The morning felt normal, but normal doesn’t mean permanent.
I was still recovering from a bad property trade with Thing2 when Thing1 got home. He was pale and weak and complaining of pain that had all the hallmarks of a resurgent flare up. The Big Guy had arrived, and we debated staying home, but Thing1 insisted we carry on with our dinner plans.
“I have to eat,” he said. It was true, but his earlier excitement for a meal of celebration had devolved into determination to not surrender a favorite meal to his condition. The Big Guy and I voiced our concerns about his endurance, but he answered, “I just don’t care anymore.”
I have no doubt that’s true on a lot of recent days, and when he’s too tired to care, we know it’s our job to account for the deficit to get him through. As we packed everyone into the car and headed to the restaurant, however, in the rear-view mirror I could see his eyes close as he rested his head against the top of the door frame.
A worried crease appeared between his eyebrows, and I knew I was seeing a kid that is losing hope. I’ve seen that expression before. Usually I promise him we’ll keep searching until we find the right drug, but last night, as we drove, all I could do is promise him a delicious meal where we would all have fun.
We did have fun, and, for two hours it was a good drug.
When we got home, Thing1 had enough energy to crawl into bed. I went to the bottom of the stairs to his room several times during the night to make sure his breathing was normal, wishing I could give him my healthy organ.
It’s 6am as I write this, and we’ll head down to the hospital shortly for blood draws and more phone calls.
A lot of days I look for the silver lining. Thing1 has grown wise beyond his years. We have all gained empathy for people with long-term illnesses and appreciation for the privilege we enjoy in being able to seek out treatment option. This morning, however, I am focused on the lessons.
I’ve written a number of times about my own issues with mental illness and about the depression that invades life independent of any events, but what I’m feeling — what Thing1 has expressed he is feeling — is not that. There is an ongoing event.
This is not depression. This is understanding the new normal and its impact now and on the future. This is sadness. Last night, even when we were celebrating, it was grief.
There have been many times over the years when the only things keeping me from literally throwing away my life were Thing1 and Thing2. You can convince yourself that the adults in your life would survive and even thrive if you died, but no one can honestly tell themselves that a child would be better off with the knowledge that a mother willingly abandoned them.
So I’ve picked my battles with life, even when I didn’t really want to, and, even when life was awash with depression, it was worth it.
As I’m learning to understand the gulf between sadness and depression, I’m also learning that even if Thing1’s battle has to be fought indefinitely, I will fight it for him for as long he needs us to because he gives my life meaning.
So much is written about happiness these days. There are the happiest countries and the best paths to happiness. Life doesn’t have to be filled with happiness all the time to be worthwhile, however. As I’m slowly learning, filling it with meaning may be more sustaining in the long term.