Finding my Voice
I know that the updates have been few and far between since we got back from Michigan. Without trying to sound like the world’s biggest complainer who ever complained about complaining, the holidays were exceptionally hard this year. Brent and I did our best to enjoy our time together. I was feeling overwhelmed at the thought of having to discuss his situation with my family, most of whom had not received an update from us since his release from the hospital in August. I didn’t want to spend Christmas Eve being sad and talking about an uncertain future and thinking about all of the things I was desperately trying to compartmentalize and ignore. To combat this, I told him that we didn’t have to go to my sister’s house for Christmas Eve nachos and we could spend the night at home eating whatever he wanted.
He never said anything in the moment, instead, when we were in Tampa at the ALS Clinic before the holidays, he held my hand and looked me in the face and said: “I’m dying. Don’t take away my Christmas Eve nachos.” So with that decision made, I put on my big girl panties and called my sister to make sure we had a parking spot in the driveway and somewhere to put his wheelchair on the night. We ended up spending an enjoyable evening with family and watched the new generation of littles open their presents.
As we enter the new year, things are still hard. I find writing about it even more difficult because I don’t like how every post seems to read like a laundry list of complaints. I don’t feel negatively toward Brent or our situation. I have feelings…big feelings…like BIG feelings about the cards we’ve been dealt, but I am in this for the long haul. I am working on finding my voice again…the one that can find the silver lining and articulate emotions in a way that makes sense. In the meantime, you’re stuck with old posts that were held in drafts for a month and an update post from someone who clearly doesn’t know how to remedy a comma splice.
All that said, I know that you all rely on me for information so I have updated the calendar on the website with some upcoming appointments and events we have scheduled. I included notes from Brent’s last ALS Clinic on the upcoming appointment in March. We will be doing voice banking and messaging this week and will have a visit with his Neurologist on Thursday to determine if infusions will continue for another two months. Sam (our niece) has spent a lot of time at the house helping with Brent’s infusion treatment in January, helping me organize the house, and trying to keep me from injuring myself too badly. We are going to be looking into additional home health care and household support in the coming weeks.
We celebrated Brent’s birthday on Friday with a giant steak for him and a carrot cake from Publix. We got him an oversized llama balloon cause Grace always said that it isn’t a birthday if there are no balloons. We watched some movies and just hung out at home working on a 3D puzzle he’d received several years ago. I’ve posted a picture in the gallery here and several on Facebook. Look for updates in the near-ish future.
