SMALL & MANAGEABLE: I woke up Thursday and made a quick 'to do' list. I often create manageable lists that I think I can get done in a day on the back of a used envelope. Friends, my coat pockets and my purse and my countertop . . . littered with written-on, folded-up envelopes of to do's or grocery lists. I have my main notebook where I write stuff, but sometimes there's so much stuff there - I recycle an envelope to keep things small and manageable.
During morning naps, I was gonna:
1. plug in my crockpot of leftovers.
2. submit my next chapter (already got a 'reminder to submit' email Wed. night
3. We 'won' tickets to the musical Bernadette at a silent auction for Rae's high school, so I wanted to select the date and clear it with my folks, as we are taking them, and email the ticket office to share our chosen date.
4. I like to post on Thursday morning, but I was working diligently on my chapter on Wednesday, so I was all . . .'It's fine. I'll draft something quick Thurs. am during nap time.' It was gonna be a bunch of random stuff. Ever draft something in your head, imagining it short and sweet? This was that, or at least that's what I envisioned.
5. Bake cookies for 2 events.
REAL LIFE: I put babies down right at 9 am, the 3 toddlers were playing. I plugged in the crockpot and was about to sit at my laptop at the countertop. Reg called.
"I've been having so many deja vous (his term for his mini-seizures) a day over the last week - I'm losing count. I was having like 1 a week. I threw up this morning. My head hurts. I have a cold, so maybe my head hurts from that, but I slept terrible last night because of all the deja vous."
***(skip to 'derailed' if you've been here for years) Flashback to 8/1/22 Reg threw up all day the day before while caddying, but wasn't ill, and had nonstop deja vous (at the time we hadn't pinpointed them as mini seizures - unaware he had epilepsy). He woke up the next day and his head was killing him - I put him in the car to drive to the ER and he seized in the passenger seat for what felt like hours - but was minutes. His one and only tonic clonic (formerly grand mal)***
We'd gone our for Mexican with the whole gang the night before - before kids headed back to college. I look at the photo of us from that restaurant and I think of it as the time before.
DERAILED & EMOTIONAL: Told Reg to go to class but keep his phone out in case the doc reached out to zoom with us. Called the neuro. Called student health services. Then I fell apart.
Why'd I let him go to class? What if he takes the stairs?
A nurse, Melissa, called from campus - the other nurse (at a clinic - loud, sick people, maybe off campus a bit?) had Melissa call me, saying Melissa's location would be better for him to be monitored while doing homework, etc. Started out as a to do list, but used it to
take notes while in the car on the way
to Kay's game, because that's
when the specialist called me.
Melissa was amazing. Gave me her personal cell#. Both nurses helped me get his records sent (yes, I thought this was done before school). Set up an account.
Reg went to Melissa after class, but knew he'd not be able to sleep much on the available recliner (a space for students who need infusions), so he made sure his roommate was in the room and he napped there.
I paced my kitchen. Called Coach sobbing. Texted friends and family, requesting prayers.
The neuro increased Reg's morning med. Had me call the specialist, who'd previously said Not much I can do, cuz can't control the mini seizures. He'd ordered the neuro psych which diagnosed Reg as having lost 95% of his verbal memory from, we suspect, all the deaj vous (ramped up when a coach verbally and mentally abused Reg/we sued our school). Specialist called back after hours - I'd called him at the end of the day. He's the best.
Specialist called Reg in an RX rescue nasal spray. I was so excited -
Feel like an event is about to happen? use the spray.
Um, no - if he seizes for over 5 minutes, then his roommate has to put the nasal spray up his nose. That's not comforting. What if his roommate isn't there? What if no one notes the time? I'll stop. There are a million what if's.
There are no answers. No quick fixes. It's scary. I wanted to get in my car and drive there (6.5 hrs). Lad offered to come watch babies so I could do just that. I begged Reg not to go anywhere alone, to steer clear of stairs. No pools, no working out alone.
During afternoon naps, I submitted my chapter. I baked. In the evening, I brought my huge desk calendar in the car as Coach drove to Kay's b-ball game. (see: envelopes, desk calendar . . . old school much?). We found a date for the musical. I invited my folks. Emailed the ticket guy. And now I'm drafting my Thursday post.
And I'm trying not to worry. Reg has called to check in multiple times, per my request. Once he did this while he was talking to someone else in the distance and I only heard 'noises' and I panicked. Was he seizing? Then, "Oh, hi mom. Sorry, I was talking to someone. Um, I took a nap . . . "
*****
Anyone else recycle envelopes from snail mail? Do you make doable lists when your big lists get too overwhelming? Anything derailed you lately?










