Choices

Everyone has to make choices everyday, although these days, it seems the stakes are higher than ever. Prior to the Pandemic, we had figured something out in my family: the medication that has finally put my RA into remission, after years and years of trying to accomplish this, also has basically left me without an immune system. I catch everything that blows in the wind towards me and even things I am actively trying desperately to avoid. My joints and body feel like I'm back in real fighting shape again. I can do the things I've wanted to do for so long, like walk farther than from my bed or couch to the bathroom, sit on the floor and get right back up, crochet and sew without constant extreme pain, and even start the process of shedding the extra person's worth of weight that has become a part of my body because of the years of high dose steroids I've needed to combat my illness. I've 100% weaned off of all of the insane amounts of pain medications I've needed in order to be even a somewhat functional human being. All of these victories have been so hard fought and for years, have felt like an impossibility. I've always known that the treatment for RA comes at a price. My doctor says that, with how bad my infection rate has been since being on my miracle drug, if I were "any other normal person" she would make me switch to another medication. But there aren't any other medications for me to try. The one I'm on now started as a study drug that I got put on under a sort of compassionate care clause because I was out of treatment options. Now, the drug has a commercial and I'm sort of proud of that because I was a part of the final study and analysis that allowed this medication to come to market for people like me. The problem that I have with the price of my treatment is that it is now a part of every single choice that I make each day. 

Obviously, in the times of Covid, everyone is making choices about their health. The stakes just happen to be higher in our family. We have been in lockdown mode since before March, when Ollie's immunologist first told us that this bug was coming and we needed to be ready for it. The only time that Oliver has been outside of our house/yard is to go to his orthodontist appointments and, just this past week, to go to the med center for 2 doctor visits. He rides his bike around the neighborhood or takes the dogs for walks and he drops into my Mom's house, just to get a change of scenery. But I take Oliver's health and well being much more seriously that I take my own. For the most part, I've been in the same sort of constant quarantine as Oliver. The once exception came when we took Caroline to NY for school, but even then, we were quarantined for nearly the entire trip. We had to be in order to meet NY state health guidelines that allowed us to help move Caroline into her dorm. I felt safer in NYC and CT than I have felt in TX since this pandemic began. And so much of that has everything to do with the choices that the community around me makes. 

This year, Adam is a senior and he is a Drum Major for his high school marching band. His freshman year, I volunteered for every Band Mom job that there was and I loved every second of it. Getting to know the other kids and parents and be a part of something that I was never a party to in my high school years was so fun! And the best part was that Adam was so happy to have me be there. I wasn't sure if he would love it or hate it, but he never had a moment's hesitation about running up to hug me or wave or smile or ask me to please ride on his bus when I was a chaperone. At the start of his sophomore year, I signed up to be a volunteer for everything again, without hesitation. But Ollie had been in and out of the hospital the whole summer before and that didn't end when marching season began. I only managed to make it to a few games that year and never saw a single competition in person. Adam understood and Kevin was there for every moment of everything, so at least he had one parent in attendance. Last year, it was my health that kept me away from volunteering. And really, I would have found a way if Kevin or Adam would have let me. The two of them were adamant that I not worry about it and just come to games when I could. But the guilt, my God, the guilt!  Because even though I was needing a walker to get around most of the time, I could still manage to volunteer for the theater at school, selling shirts and flowers at a table in the lobby during performances. Volunteering for Band requires a lot more physicality than selling shirts and break-a-legs. You have to be able to get on and off buses, keep up with kids, follow the band everywhere it goes (on competition days, this can mean miles and miles of walking around huge football stadiums in the TX heat), and I knew that I wasn't up for that last year. 

I have been so excited for all things band this year, though, because my body is so much better and I can do all of the things now. Except that I can't actually, because every time I am near another human being, I get sick. Not with Covid, thank God, but I pick up all of the viruses, I am plagued with thrush and random, strange skin infections that pop up out of nowhere. So the boys in my life decided to collectively put there giant feet down. I am absolutely not allowed to volunteer for any Band Mom duties this year, end of story. Do they even know me at all? I have been trying to figure out what to do about this family moratorium on my Band Mom life. This is it. The last year I can volunteer with and for my kid. The boys have even been against me going up to sit with the other moms who are there in case anyone gets sick or hurt. It's a fully outdoor gig, with social distancing and masks and it seems safe to me.  

Anyway, this weekend, the band will take the field for the first time this year. The show looks different this year...the kids must remain far apart on the field at all times, no exceptions, so they have focused on choreography over marching. And there aren't going to be any marching competitions this year, so the need for big sets and props has been eliminated. I've been so excited for this weekend for a long time, despite the ban on my volunteering. But last night, I made a choice. Kevin wasn't even a little surprised by it and I think that Adam might be secretly thrilled, but I can't say either of them was very happy with me.  The band needs volunteers. In this strange year of Covid, we are all just trying to give our kids a little bit or normalcy. And these kids have worked so hard. Our band directors decided not to rush back to in person practices, once the district began to allow it. They gently eased the kids back in and have done a tremendous job keeping the kids responsible for their actions and healthy. The kids have had to make major adjustments in expectations for their beloved marching band and so when I saw the call come out, multiple times, for volunteers for the game on Saturday, I made a choice. I watched all day long to see if anyone else heeded the call. I waited for more than 8 hours, but not a single person stepped up (Mind you, there are already plenty of people who have been stepping up and volunteering for the band from the start...I'm talking about other parents, like me, who had not yet volunteered). Chaperoning for the Band is one of the most fun volunteer positions I have ever been a part of in all of my years of volunteering for schools. I talked it up on the posts and pleas, telling everyone how rewarding and amazing it was to do, but nothing seemed to budge anyone. 

So, I said yes. I made the choice, weighing the risks, and finally deciding that I cannot continue to not live my life. I am missing out on so much and I know that we all are right now, but I have been for years and I am tired of it. I understand that it is too risky for me to go to the grocery store, but if it is okay for me to go to the game to see my kid, than it has to be okay for me to volunteer and help the Band that I love.  I will not go and sit at the Band Aid tent this week, like I had planned, because I know I shouldn't push it, but I am going to chaperone on Saturday. I'll help Band Aid next week, after I've proven to myself and my family that I can volunteer safely. I'll be the Chaperone who has to wipe down her own bus seat, even though the seats have already been cleaned, who might wear gloves to protect myself, and who brings gallons of hand sanitizer along in my Band Mom backpack. And that's okay. I'll down Emergen-C all weekend, in the hopes of keeping myself well and I'll social distance like a champ. I just don't want to look back and regret the what might have beens. I've always plowed through challenges head on and I don't want to quit that now.  I know the risks are big. I know that the price I pay for taking any risks seems to be my health and that sucks. I'm hoping that I'll get lucky this time and nothing will happen, other than getting to ride the bus with my favorite Drum Major, at least this one more time before he graduates. This weekend, I just want to be a Band Mom like all of the others, so that is the choice I am making and I can't wait! Oak 'Em!