I’m CSPC Director of Worship Landon Paul, and this is how God has been working to help me live deeply.
Mom knew something was wrong about a year before the official diagnosis. She and Dad had been in downtown Nashville on a date -just walking down the sidewalk- and she noticed she just couldn’t walk as well as she was used to. Early on, she told me several times, ‘You know, baby, I can deal with anything, as long as it’s not ALS [commonly known as Lou Gehrig’s disease].’ But in the fall of 2017, we learned what we ‘d dreaded was true: It was ALS. I remember that moment- it almost plays out like a scene in my head. After she and Dad called to give me the news, I remember sitting on the porch of our house by myself and just crying out. That was all I had. I couldn’t hardly even utter any words. The Scriptures say when you don’t have words, the Spirit will pray for you, and that’s what was happening. God knew my heart and mind- what I was trying to say and couldn’t. The front end of Mom’s struggle was where we all did our most bitter grieving. Do you remember how John Wood used to pray for people grieving the death of a dream? That was the bitter, weighty mourning for me, my wife Ashley, Dad and my two younger brothers. My biggest heartache was hearing Mom talk about the death of her dream, which was meaningful time with grandchildren. She always had been looking forward to having grandkids, and at the time she didn’t have any, though we were pregnant with our first. She wept so bitterly when she was first diagnosed because she felt she had so much left to give, and she did! She was only in her mid-50s. All she ever wanted was to walk her grandkids down to the creek on her and Dad’s farmland in Middle Tennessee, skip rocks, play with them, that kind of stuff. That was the dream she had. And it died, just like that. That was the death of a dream for her and for us- that my and my brothers’ children wouldn’t get the same grandparent experience we’d had growing up. The hardest part was that bitter grief of the death of a dream on the front end.
A few months before Mom’s official diagnosis, Ashley and I were at Mom and Dad’s place for the 4th of July and revealed to our families that we were having the first grandchild on both sides. Mom was jumping up and down on the back porch- not with the strength that she used to have, but she dropped the ice cream maker and was just elated. She really believed at this point, ‘Wow, I don’t know what it’s going to look like, but I think I’m going to get to at least see my grandchild.’ Mom and our oldest, Weston, ended up bonding and having a really special relationship. Weston would sit in Mimi’s lap, watch movies on the iPad, and let Mimi read to him. One of the sweetest things Mom ever did, while she still had strong voice, was to record audio books of her reading and singing to the kids -she had the voice of an angel and even briefly sang professionally. So we’ve still got those upstairs and we just treasure them. It was important to know we’d have those as the disease broke her body down. That’s the worst part of ALS- it just entombs you within it; your mind is still perfectly capable. She was still perfectly Mom inside- she just couldn’t be the same person outwardly. For a long time, her physical decay would go in stairsteps- something would happen, and she’d lose some function, but then she’d plateau for a while. She’s reached a point where there had been relatively little regression over a pretty long stretch. But in the spring of 2021, she got strep throat, and something about that really set things off. After that, it was a very exponential dive all the way. Month after month, something was getting worse. Then it turned to week after week, then day after day. We were at Mom and Dad’s for Thanksgiving last year. Despite Mom’s downward trajectory, God’s grace was on display in amazing ways. That Wednesday night, she was sitting up in her chair and got to read to Weston, which was one of her favorite things to do. We played a game together. She was happy, engaged- just had a great night.
The doctors had recently switched Mom’s sleeping medication, so she slept all day on Thursday, Thanksgiving Day. We thought she still had the worst part of her disease left; the hardest season left to go. Ashley and I had all our bags packed up in the foyer of my parents’ house Friday morning. We were going to come back to Knoxville to be with Ashley’s family a little bit the same weekend. So I was just listening to music in my childhood bathroom brushing my teeth, and my RN cousin who was there came knocking on my door. I cracked it open, and she looked pale and almost like she was sick. ‘Baby, I think your mom only has like an hour left,’ she said. And I was like, ‘What are you taking about?!’ It just didn’t seem feasible. I threw some clothes on and texted Andrew Keasling and James Forsyth immediately, saying, ‘Hey, I need you guys to pray. I think Mom’s about to die.’ By the time I’d texted them, gotten clothes on, and made it into her room, it seems she had just passed. My cousin couldn’t hear her heartbeat anymore. I went up to her and took a carotid pulse but couldn’t feel anything. Her forehead was still warm, but her cheeks were not- you could tell her blood had really slowed down. I whispered a little childhood saying, ‘Ah bee ah’, to her- that was how I tried to tell her I loved her when I was little. And that was it- she was with Jesus already. I guess you could call it a severe grace, because the Lord spared her from everything that she was really afraid of. At the same time, He prepared everything to where we -the whole extended family- could all be there; be there for each other, be there with her. It was just God’s providence. All the things she was afraid of, like severe breathing struggles… none of that happened. Hospice had brought in a breathing machine and air treatments. On Thursday, she was hooked up to that and she slept. Less than 48 hours earlier, she had been sitting up without help reading to my son in a chair. Two days later, Dad couldn’t get her to wake up, and the Lord just met her in that dream.