Friday, February 14, 2025

Sunday, February 23, 2025

Thank you, everyone, for pointing out my goof yesterday in writing the wrong date for Valentine’s Day. It was actually intentional—to make sure you had time to get something for your sweetheart. At least I know you’re reading these posts.

So, happy Valentine’s Day today, from our hearts to yours. 💌

Yesterday was a long day at the ALS clinic, so when I woke up this morning at 4:15 am, I wasn’t sure what to capture from the day because so much had happened.

We arrived at the hospital at 11:30 a.m. and didn’t leave until 5:15 p.m. I had been warned that clinic days would be long and exhausting, and they were right—it was all that and more.

As many of you know, I start each morning with backgammon to wake up slowly and gather my thoughts. Today was no different, but as I played, the emotions from yesterday came flooding back. Tears ran down my cheeks as I thought about how incredibly caring everyone was. I lost count, but at least 15 different people came into my exam room.

I won’t go through the entire experience but will focus on what was most important and impactful. Maybe Cindy will add her perspective later, but I suspect we’re on the same page this morning.

I’ve talked before about Peggy, my care coordinator—an angel disguised as a human. I don’t know if I’ve ever met anyone as caring, loving, empathetic, understanding, and willing to listen. She problem-solves anything we throw at her, and there truly isn’t anything she can’t do.

She was the second person we saw after the nutritionist, and she walked in with a big smile, arms open, and gave me a huge, loving hug. Then she did the same for Cindy. Mind you, this woman is maybe 5’3”, but she hugs like God. I mean that. In all my years as a Catholic, I have never felt anyone as empowering as Peggy.

We sat in the exam room with another care coordinator, Snovea, and just talked—about our needs, emotions, life, family, the clinic, and so much more. As our conversation flowed, I hit emotional bumps where, yet again, I was overwhelmed and couldn’t get a word out. I’d try to speak, but nothing came. Peggy would pause, touch my knee, and Snovea would pass me the tissue box while I tried to regroup.

The hardest topic is always about the kids. I often looked to Cindy to finish my thoughts when I can’t continue, but she was struggling just as much as me. More pauses, more knee touches, more tissues.

I think we talked for 45 minutes—probably way longer than scheduled. As we wrapped up, the conversation turned to the other specialists we were scheduled to see. They told me I could opt out of anyone if I wanted, and my mind immediately jumped to the Jeff, the social worker. He tries to be helpful but just doesn’t connect with me. Maybe it’s because his first question is…”Do I feel safe at home?” My first thought is “NO, I don’t feel safe at home, I have a fatal disease and I spend all day trying not to fall” I know my response is not in context with the question, but question just rubs me the wrong way. So, I asked them to cancel his time. They agreed, and then Snovea said, “The last 45 minutes was basically a session with a social worker.” Then she added, “I am a trained social worker.” Awkward moment.

Why do I say these things? I apologized, feeling a little embarrassed. But Snovea just laughed and told me not to worry—they’d let Jeff, the actual social worker, know he could skip us today.

We finally wrapped up, and they left so the other 12 disciplines could cycle through. The day continued with back-to-back exams—many of them repetitive. They must not share notes because the same tests were done two or three times as I rotated through the different disciplines. No big deal—I only have to do this every three months.

Near the end of the day, we were waiting for the last group when there was a knock on the door. It was Jeff, the social worker. Ugh… he didn’t get the message.

By 5:15 pm, we were done. Slowly—very slowly—we walked back to the hospital entrance to retrieve the car from valet (big plus) and begin the hour-plus drive home. Cindy and I looked at each other, thinking the same thing and we agree that…this was a very good day.

Have a great Friday date night, everybody.

Love you all very much! ❤️