On June 23, 2017, we were ten days from a MRI that would mark the beginning of a new chapter in our fight against Glioblastoma. And ultimately, it was an uneventful day that I don’t remember well. Matt went to work. G and H had a playdate and we went out to dinner with Matt’s parents. Easy, normal, and oblivious. Or at least trying to be.
I remember June 23, 2016 with cutting clarity. It was G’s last day of Kindergarten and Matt had an appointment to get the staples out at the neurosurgeon’s office. I made (possibly the first?) need assessment: who needed me more, Matt or the kids? G, who wanted to celebrate her last day of school (at that end of the year lake party), or Matt, who was getting staples out. Matt’s mom offered to go with Matt to the appointment and I took her up on the offer. I chose to stay with G and H.
I said many posts ago, and frequently since, that I owe this story honesty. Sometimes that honesty won’t paint me in the best light. This particular need assessment wasn’t completely selfless. I wanted to be the one who got to hug G as she got off the bus on her last day of Kindergarten. I wanted the kids to go to the end of the year lake party, look up from playing, and be able to find their mom in the crowd, just like all of the other kids. I wanted a minute to just be with G and H, and breathe.
But as I wanted all of that, I knew it wasn’t fair because Matt couldn’t be afforded the same luxury, not for a while. For the foreseeable future, he’d never be able to take a break from any of it.
Matt called me after the appointment. He told me the neurosurgeon was pressuring him to make a decision, that he was stunned we were still discussing options. I remember feeling the looming deadline close in tighter, that panic I thought I’d be able to escape for an afternoon wrap firmly around my heart. And then Matt told me the neurosurgeon asked about me. Why isn’t your wife here with you? And I unraveled. That simple question tore open all the guilt I’d been trying to stuff down. Because I heard it as: why isn’t your wife supporting you?
I couldn’t stop the tears, the gasping sob, and I couldn’t get away from the crowd fast enough. It seemed to me as if I’d made a need assessment and chosen myself. I couldn’t think of a worse sin.
On June 23, 2016, I didn’t yet know that there would never be a right choice or a wrong choice. I couldn’t know that I would always feel guilty not being there, wherever there was. And, I hadn’t yet learned that the rate of brain tumor caregiver burnout is extremely high and it’s okay—necessary, even—to take a minute, if you can find one, to breathe; it’s not selfish to take care of yourself, too.
Looking back, living what we lived, I can understand why the idea that the neurosurgeon thought I wasn’t supportive enough devastated me as much as it did. I was terrified that he was right, that I wouldn’t know how to be supportive enough. I didn’t think I’d be able to support Matt through all that we needed to do. I was thirty-three, but in this, I felt like a child, and every day it seemed as if I was trying to help steer a ship forward, but I had no idea which way was forward, anymore.
I don’t know if I did everything right, if I was all the support Matt needed. I know sometimes I let fear and anger and despair gain too much space in my mind. But I know I did the very best that I could do. I wish I could have done more. But I have to hope that my best was enough.
I have a feeling, at least when it comes to this, your best is always enough.