Facebook Update – 4/19/2016
I’m having a hard time this week. I recognize some of what’s going on as depression – I keep wanting to sleep, for example. I’m not able to find enjoyment in doing anything. Sitting and staring…that’s my main activity. I feel like time is an actual physical thing and every second that passes where I’m not doing something meaningful is wasted, yet I can’t seem to get going. I’m angry and I wish I weren’t. I nearly smashed my phone yesterday when I had to call the insurance company back about Ana’s new meds (Jakafi was rejected and they’re trying to get a pre-authorization now – she’s begun taking the expired pills we had leftover). Jim pointed out that if I broke my phone, it would’ve meant even more time on a call with Verizon so I could replace it. Maybe I should go downstairs and his drums as hard as I can.
I’m watching Ana come to terms with her prognosis – and no amount of helicopter hovering can spare her. She didn’t go to school most of last week or yesterday, but by 4 o’clock or so yesterday, she came down and admitted she was bored and unhappy. We know she’s depressed too and have asked Dr. Yamashiro to prescribe the anti-depressant she was on back in 2011/2012 (it was rejected, of course – we’re appealing).
It’s been an odd kind of adjustment – figuring out the purpose of school in her life. I told her I think school’s important so she can be distracted, plus continuing to learn new things is never a waste of time. So today she went back and even seemed cheerful as she got ready. She chatted with me all the way to Woodstock. That’s another thing school allows – 30 minutes of driving time where I get Ana all to myself.
We all focus so much on the next steps for kids in high school – namely…college – but for Ana it has to have a different meaning, a more immediate purpose. It’s not easy to shift thinking like this. You become so used to having goals all lined up in a neat row – they will go to kindergarten, they will learn to read, they will move up and up and up until they become teens and begin to separate…they will graduate and go to college.
But life isn’t always so predictable. The challenge for me – for all of us, really – will be in trying to adjust to how Ana’s reality changes the shape of everything we thought we knew about our lives.