Deflated, but Floating
In the natural scheme of things, a helium balloon has a half-life of a week or two before it slowly floats to the floor and with its descent, taking with it the joy of the occasion being celebrated. Louisa the Llama was purchased on January 19th, 2024, in celebration of Brent’s 46th birthday. In what can only be seen as defiance and an uncommon, plucky, can-do attitude, Louisa still floats high above our heads. Now, don’t get me wrong…she’s had better days. She’s a little anemic and her head is a little less than full, but she hasn’t started to reach for the floor yet - two months later.
What a fitting mascot for our current plight. Deflated and still floating, Brent and I have made it through the last couple of months. His strength has waned quite a bit and he spends the majority of his time in his comfy chair playing video games. He still has use of his hands, but his strength has lessened quite a bit. He gets frustrated because he is unable to open bottles or peel wrappers off of things that he used to, but he’s created a routine that works and allows him to be mostly independent. His voice has changed drastically and sometimes he sounds like a Muppet when he talks (he loves this comparison), but he is mostly intelligible. We’ve banked his voice and are ready with a technology solution should his words fail.
We have emotional days - believe it or not, we have been having fewer and fewer of these in recent days. Perhaps we’ve come to a place of acceptance or whatever stage of grief this is, but we’ve definitely stopped leaking from our eyes quite as often. I have taken it upon myself to remind him when he does get emotional that he’s acting like a little bitch and his tears are quickly replaced with fits of laughter. Call me a monster if you choose, but I would rather hear him laugh through the tears than get lost in the swamp of sadness. (Fun movie throwback there for my 80s people).
We got approval for a power wheelchair that will hopefully be delivered in the next couple of days. Hopefully this will give him back the mobility he’s lost and we can go on adventures outside the house again. We’ve been isolating pretty hard. Combination of his loss of stamina and him not wanting to be “watched” everywhere he goes. The man who gave no F#$&s about what anyone has ever thought of him now cares a great deal. Hopefully some manly wheelchair accessories, horns, and perhaps a fart machine will entice him to find our own adventures again soon.
Let’s see…what else? We got his medical paperwork in order and he has listed out his wishes when it comes to the progression of this disease and how he wants to be treated medically. Those were tough conversations and I cannot imagine walking through the reality of those current hypotheticals, but it’s settled. We also have news…there won’t be a funeral. I figure I will leave this here for everyone to get upset about now so that they can get it out of their systems in advance. Brent will be cremated and his friend has hand-crafted a box for his ashes, at Brent’s request. The finishing touches are going into it and then all that remains will be the inscription with the dates... hopefully still a fair bit into the future. Sure we’ve planned, but I’m not quite ready yet. I wager you guys aren’t either.
Stop crying and acting like a little bitch. People are watching.
In other news, Brent has finally talked me into making him a blanket. I crocheted him one, years ago, but his toes popped out of the stitches and he accused me of trying to kill him with the blanket. I threw that blanket away and have created many crocheted items since then, but nothing for this ungrateful grump. I figured that it was time to give it one last shot. However, if he keeps calling it his death shroud, I may give up for good. Someone get him under control.
We have had a great number of surprises and blessings from friends and family in the form of cards and cash. For each of you that continue to surprise us or reach out in all of the small (and very big) ways, know that it is appreciated more than words could ever really say. We aren’t really good at reaching out for help and truth be told, there isn’t really much help needed right now (unless someone is hiding a cure for this mess in their pocket).
In the coming weeks, we are looking forward to hopefully having a visit with our daughter and grand-daughter. There’s a big surprise coming up for Brent (it’s a clock radio that shines on the ceiling) soon, as well. I am still working full time, mostly ignoring my own needs, and trying to keep it all together. Daddy didn’t raise no little bitches.
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