It looks like I’m becoming a “blog once a quarter” type of person. Sometimes I feel guilty about that because I genuinely do want to keep everyone updated on Ben. But honestly? I’m tired. Plus, Ben and Madeline have both recently told me that I talk about Ben’s illness way too much. I guess I took that to heart and backed off quite a bit. I mean, I want to be an embarrassing mom in a fun way, not the “holy crap, here comes the lady who can’t shut up about her son’s terminal cancer.”
Since joining social media in 2009, I have fallen in love with learning about your lives. I felt comfortable communicating with anyone and everyone because writing was my preferred mode of corresponding. I didn’t have to sort through my social anxiety in order to interact, which was completely refreshing. And when Ben did relapse that summer of 2009, Facebook got me through the long days at the hospital. I could slip into your world for a couple of minutes… virtually celebrate milestones with you, applaud your kiddo for acing a test, enjoy your life as if I were right beside you… it was a form of sweet relief. Thank you for that. Plus, social media allowed me to cultivate a following of amazing supporters from around the world who have nothing but love for my Ben. So, while you might not want to STAY in our world, you could visit whenever you wanted to.
I’ve received a couple of messages lately from people checking in, worried about us. This is certainly not my intention to cause concern, but the truth is we’re kinda in neuroblastoma purgatory. Each doctor’s visit determines whether we get to hang out in NED heaven or if we’re being thrown back into treatment hell. Right now, nothing is going on. We have a lot of downtime. I wish I could say that we’re doing a lot of productive stuff with that time, but we’re not. Matt goes to work. Maddy goes to school. Ben sometimes works with his teacher. I generally get lost in the sub-world of Pinterest, but sometimes I try out self-tanners. And cry. Of course, I try not to do the self-tanning thing and cry in the same day.
I’ve learned that having something to look forward to takes some of the pressure off the landmines otherwise threatening our environment. For instance, Maddy recently turned 13. She wanted to have a murder mystery party so I myopically dove in… oblivious to everything else in my life. I viewed her birthday party as the pinnacle of my parenting… throw her a great party and I’ll win the “Best Mom EVER!!!” award. I really needed that kind of win. And while I’m confident that the party was a success (she gave it an 11 out of a score of 10,) now I’m back in that sea-ravaged boat asking “What now?” What if I get started on a new project and learn during next week’s scans that radiation didn’t do what we’ve hoped? And then that leads me to just sit here paralyzed… occasionally crying and pinning things on Pinterest that I’ll probably never make. I feel that continuing my search for the perfect self-tanner for my fair complexion is the safest activity for now.
I haven’t completely lost hope, but I’m also not turning a blind eye to what simply is. I know that after my last blog post there was concern that I sounded like I was throwing in the towel and conceding defeat to Ben’s opponent. I’ll admit that it is becoming more and more challenging to accept this bullshit that my son continues to bravely face. I try not to let those cracks show when I’m with him but he knows. He knows. The streaks in my self-tanner leaves no room for doubt.
Everything hinges on what this next set of scans report… I am hopeful.
But I am terrified. And the terror part is getting harder to suppress.