I’ve steamed about 25,000 lattes since I last wrote something on the blog, or written anywhere else for that matter. Sometimes I feel like I haven’t opened my mouth in ages. I feel like the tin man. The inertia of working/coming home/sleeping/and repeating…has made time slip away in silence.
But rest assured readers, all of this time, I too have been here. I too have feared what would happen and I’ve imagined the future and lamented the past. I’ve done it in blog-o-silence, but I’ve done it all the same.
The other night Brandi and I agreed that just being present hasn’t felt the same, and that I should again stretch my typing fingers out to give a small contribution to this thing that was initially a group effort. It’s probably just once a week, and only time permitting.
So--what’s happened since March? Well, after Scarlett’s tumor was removed, looking ahead to the painful endurance of chemo, we realized that we couldn’t keep doing all of this without money, and that I had to go back to work. Yuck.
What’s work like? I steam milk. I pour coffee. I’m polite to customers. I clean bathrooms. I wash windows. I count money. I mop floors. I stock pastries…other three word sentences like this...
I’m the one who goes to work. Brandi’s full time job is Scarlett’s care. That’s the story you’ve read about, and that’s what this blog is about. The parts in between is what I do every day.
Work takes up a huge chunk of time, and because of that, a strange thing started happening a few months back. I started missing things. It was just a few appointments here and there, and that was rare at first, but it became increasingly common over time . I started getting overwhelmed with the schedule of appointments and assessments and therapies, and it just got too difficult to manage requesting days off. Eventually we found ourselves in a place where it was common for me miss things. It began to feel normal.
Now I miss a lot of things. In fact, there are people who only know Brandi, because she’s the only one they’ve dealt with. There are departments and services that only Brandi manages. Social workers ask for Brandi, not ‘the parents of Scarlett Wecks’, over the phone. I give the phone over. When I do go to appointments, who am I? I’m the male-half of the relationship. I’m that less eloquent, less informed, less authoritative supporting player. I’m less. In their eyes, I’m less. In the context of Scarlett’s care, I’m less. I’m the one who their eyes pass by before they reach Brandi’s. In the story of our day, I am often missing.
And I don’t know things, too. Difficult to imagine, but I’ve lost track of which person deals with which service. The major people I still know and see: our oncology PNP, our neurosurgeon, and others…but a lot of people I don’t know, and I can’t keep it straight. If I come home at 8PM, there’s only so much I can retain while we eat dinner and put Scarlett to bed. I rely on dosage notes on the sides of Scarlett’s medications now when I give her the evening meds she takes with her chemo and overnight feeds. I ask how much she’s eaten, because I don’t know. It’s a struggle I am working hard to overcome.
It’s been a strange thing. Working while Brandi takes care of Scarlett has made me an outsider in my own life.
Of course I’m not without a life. For over a year I have been trying to launch a small business. Every now and then I write a little still. I’m still on the job hunt. And the little things in my days still stick in my memory. Conversations and interesting things all still happen to me.
But when family and friends talk to us, there is little of that to include. We are a story about Scarlett and her care. My portion of this is the money it takes to make it happen. So when they turn to me, they say one thing:
“How’s the job hunt going?”
It is, after all, the only relevant thing to ask me. If Brandi and I are the narrative of Scarlett’s care, then that is what I am reduced to. When people think of me, it’s about a job they think I might be good at. Little else matters. I don’t sew bibs or make appointments or fight with social workers. I make money, and the more of it the better. My interests and ambitions are private ones because they aren’t relevant, and frankly they’re second place to anything to do with Scarlett. All of my experiences become trivial, because they don’t contribute to the overarching story of Scarlett’s care
This is partially why a lot has happened, but I’ve written so little. It's impossible to even frame my life here.
I'm hopeful that things won't always be this way. There’s a lot I thought I’d be doing with my life by this point, and I look into the future and dream of days when the pieces of my life will become relevant and important again. Brandi and I both do. Until then, here’s to latte number 25,001!