For this one, I’m going to be grateful for the technology that allowed Belinda to have a surgery that allows her to swallow again. I think I’ve already said enough about it, so I’m going to stop here.
This is the entry for the 21st, but I am backdating it from the 22nd. I was thankful for a lot yesterday, though. I had a quiet, contemplative day. I thought about Jerry a lot. I thought about other loved ones that are no longer here. I prayed more than normal and spent time reminiscing.
I don’t have a job. Not a normal job, anyway. I consider myself a writer, even though none of my novels have been published. I’m a homeschool educator, but that is just an extension of “mom” for me, so it doesn’t feel like a job. I also started writing for the newspaper again recently, and I appreciate that work. It is nice to do that kind of thing without having to be too entrenched in the journalism world.
Anyway, I guess I am most grateful for the creative writing job. I am thankful for all the friends I have made on the path to publication. I’m thankful for all I’ve learned and all I’m still learning. I catch myself getting down about it, sometimes, but I know that if I’m not published yet, that’s how it’s supposed to be. And I can be grateful for that, too. I am glad that my writing is a way to express myself, and I’m thankful that I am somehow naturally good at writing. A lot of people have to really work at grammar and storytelling, but it seems innate to me. My writing has helped me process a lot of things, which is good because I barely understand myself.
So that’s what we’re going with today.
My stepdad died this evening. It’s still a shock, even though we knew it was coming. I wish I had spent more time with him the last few years. But I was doing the best I could. It’s been so hard. I am going to miss him terribly. He has been in our lives for a long time. I had my own dad for 21 years of my life. I had Jerry as a stepdad for 17.
The hobby I am grateful for today is traveling. I did not get to travel very much until Jerry came into my life. He was always willing to go anywhere and do anything. Without him I would not have taken the trips we took. I just didn’t have the confidence to travel like that, and Ben doesn’t really take the lead on things so if I didn’t do it, it wasn’t getting done. Then Mom mentioned that she wanted to see Washington, DC. And then they bought a van and drove there, with Ben and me and the three kids in the back. I planned a lot of it, and Jerry planned too, and we made it happen together. After that, we kept going. Sometimes Ben got to go, and sometimes he had to work, and me and the kids went with Mom and Jerry anyway. We went to Florida, to Miama and the Keys and to Disney World and Universal. We went to Carlsbad Cavern and Roswell and the White Sands. We went on a Caribbean cruise, to Mexico and Honduras. We went to Mount Rushmore and the Oklahoma Panhandle. Our next planned trip was going to be to California to see Hollywood and the redwoods, and then go north to visit his sister in Washington state. We even talked about continuing north into Canada, and to Alaska. He was always willing. I was trying to figure out the logistics for our family and then Covid happened. Jerry got bit by a tick and started going physically downhill fast. Mom started to develop dementia. Finally Jerry’s daughter had to move in with him and we brought Mom home with us. Mom didn’t take that too hard, as her memory was failing, but it was harder on Jerry. But I didn’t know what to do. I didn’t think I could care for him like I knew he needed. And Mom was trying to help him when he fell, and she couldn’t pick him up. I couldn’t either.
I will always love him and appreciate him for being a dad to me when I didn’t have one, and being a grandfather to my children, who never knew my dad. On Father’s Day, I gave him cards that said Dad. Officially, legally, he was my stepfather, but it didn’t feel that way. Not really. It was so much more. He was a wonderful husband to my Mom and if he hadn’t lost his physical strength, he would have taken care of her even with her dementia. He loved her so much, even after she couldn’t remember things.
I didn’t have the confidence I should have had when Jerry got sick. I took him to the hospital and to appointments but when his daughter came I just left it to her. I felt like she and her brother would do most of it and I felt awkward because I shouldn’t really have a say. And I felt stretched in so many directions. And I know it hurt Jerry’s feelings that I pulled back so much. I know he loved me, but I just didn’t know what the right thing to do was. I didn’t know how to have conversations with him when he couldn’t speak well. I didn’t know what to do when he needed help eating and drinking. Jerry was always so strong and in charge, and seeing his weakness felt so foreign. I know he didn’t like being like that, and having us see it. I also thought maybe he was upset with me for taking Mom away. I don’t know how I could have felt different. But now that’s over.
I am so thankful that he took us on those trips. He gave me confidence that I could also do such things, and after 2020 we have been to Orlando and to Galveston for dance competitions, and I was able to make those things happen. Maybe I would have been able to anyway, but not with the confidence he gave me.
So traveling is the hobby I’m going to go with today.
I had plans for tomorrow, but I’m not going to do them, I don’t think. I am going to stay home – I need to tell Mom because she was asleep when we got the call and I want to be here for her. I also just want to have a quiet day, and think about Jerry.
Belinda and I went to Tuttle Eye Clinic for our medical eye exams today. It’s routine for me because of the diabetes (and everything looked great, hooray!) but this was Belinda’s first (medical eye exam – she’s had regular vision exams). Her pediatrician wanted her to have it done for the Ehlers-Danlos. Everything also went well for Belinda and she tolerated the pressure test and had her eyes dilated, something she hasn’t been able to handle before. Baby girl is growing up.
I’m happy we got that done and the cardiologist appointment done that her pediatrician told us to get done back in APRIL. But at least it’s finished now!! One more thing checked off.
She still has not had to regurgitate anything since DC. Thanksgiving is in eight days. I don’t know how long it has been since she’s had a Thanksgiving where she was actually able to eat somewhat normally. She doesn’t like turkey or ham but I think she’ll enjoy the day anyway.
Today is a book. Should be perfect for me. I thought about writing about all of my books – or at least manuscripts – that I have written. I could also do the Bible, which I am obviously grateful for.
I’m going to do “I’m Gonna Bury You” by Gene Neill. It’s a self-published book that I first read in junior high. My church Sunday School teacher lent it to me. It’s about a man who lived a wild life, went to prison, found Jesus, got out, and became a preacher. Every time I read this book, I am filled with faith, and hope, and excitement at the power of God!
When I was having a terrible depressive episode about eight years ago, what finally pulled me out of it was Gene’s book. I reread it, and it gave me a lift, but not like it used to do. But for the first time, I noticed he mentioned a book he read, Power of Praise, by Merlin Carouthers. And that book! That book was all about thanking God in all circumstances, whether we perceive them as good or bad. God is in control of all and it’s all working out for His glory. Like the whole, “All things work together for the good of those who love God.” ALL THINGS. Not just the pleasant things. And if we fully trust God and His plan, we should be praising and thanking him for everything!
And there it is. My heart was troubled before I started writing this, worried about finances and what’s going to happen to our family. But now that I remember to praise God in everything and thank Him, I remember that everything is going to be okay. Even if it looks bad here. Even if we lose our house, or the cars, or even our very lives, God is in control and He wins! And we can be with Him for all eternity, right there with His glory.
I feel complete and at peace again.
I am so thankful for those books!
This isn’t easy to do today. The question keeps reminding me of my stepdad, Jerry, who hospice said today is actively passing. My stepsister Dianna has been taking care of him for the last several years, while I’ve had Mom. Mom repeats herself a lot and asks questions again and again, and that’s hard, but nothing compared to what Dianna has had to do. Although his mind has been sharp the entire time, his body has been having trouble for about four years now, starting with a tick bite.
So I think about that, and the fact that many of take our bodies, and our mobility, for granted. But it can all go.
My body hurts a lot. I think it’s the connectivity tissue disorder the geneticist says Belinda and I have, probably Ehlers-Danlos. But I’m not as bad off as a lot the people in the groups on reddit and facebook that I follow. My rheumatologist thinks it is psoriatic arthritis, but that never seemed quite right to me. I don’t really have psoriasis. I do have a super dry scalp and very rarely a little red spot up in my hairline, but that doesn’t seem the same to me. But I think he came to that conclusion because that’s what I walked in his office asking about, since Marissa had that. And now I wonder if she had it too. Maybe her pain was all undiagnosed Ehlers-Danlos. Her skin was really soft and makes me think of the velvety skin they said some EDS people have.
I’m not going to pick one thing. I’m thankful for my entire body. The good parts and the bad parts. I don’t treat it well; I don’t eat great and I don’t exercise enough and I’m on too many medications right now. But I’m trying. Hopefully as my weight comes down I can get off the medications and feel better. And do better.
I am thankful for the painful parts. I know that God has me experiencing this for a reason. Maybe it’s so Belinda could get a diagnosis and not have to go through whave over the years. Maybe it’s for all my kids and future issues. Maybe it’s something else. Doesn’t matter.
This is such a solemn day. 🙁
So I forgot to do this yesterday, and I’m backdating it. It was a busy day, with church, and then we went to see Jerry and Dianna and have lunch there. Jerry has been on hospice and now they say his passing is imminent. He is on some heavy medications and snoozed for most of our visit. Mom held his hand most of the time, and he did look at her and he knew she was there. I know we need to visit more. I just feel like I am at my limit for what I am able to do and still retain my sanity. I feel guilty right now that we didn’t visit him enough, and I am sure I will feel even more guilty when he passes.
So, I am going to just do the sound I am grateful for quickly. It is the sounds of a little song and video that is a nice thing to see and hear when you are feeling down. It has been on the Internet for a long time, but I only found it a few years ago.
Today we left the house at *gasp* 6 am and drove to Alva so Belinda could do Ranger Preview, which is a thing for high school seniors to find out more about NWOSU. It was a great time and she got to talk to professors from the psychology and English departments, which is what she plans to major and minor in. She also visited with some people from clubs and took a dorm tour. I really enjoyed seeing the updates on campus and I got to see one of my favorite professors at the history booth! He told Belinda that she sure had two crazy people for parents. It is neat to go to a small school and get to be remembered like that. History wasn’t either of our majors, and I only think I had two classes with this professor, but he remembered us. It was so good to see him!
We ate lunch in the school cafeteria and then got Taco Village to take back for the fam. Belinda did not have a problem swallowing all day! She still has not had to regurgitate food since the dilation procedure. She said that yesterday, she did start to choke on rice (it’s so sticky) but she got up and started to walk and it went down. I hope and pray everything keeps going well!
And we we got home, Bennett was feeling better after Mia took care of him and everything else around here all day. That made me feel very happy.
The editor at the local newspaper wants to write a story about Belinda, and I need to get the questions answered that he emailed me. One of his questions was if we had a gofundme or how people could help. I’d never done that before, but I asked our pastor if people could give to the church for Belinda, and then the church would give it to us. We did that before for a young man in our church who needed special surgery. But then tonight, I went ahead and made the gofundme. I wasn’t sure what to put down, but I thought about how much we have spent so far, and how much that may be in the future. After she turns 18, she won’t be eligible for the same assistance from the National Organization of Rare Diseases. Her benefits are on the pediatric level. And there’s not much help for Achalasia because it’s super rare. And with health insurance kind of in flux right now, it seems smart to try to get on top of that. Also, we need to determine how we are going to meet her needs in her dorm room. We might do a wedge under the mattress to elevate her head, but many of the other parents on the facebook group have gotten adjustable beds for their kids. I feel like that might be a better option for the dorm room, so she doesn’t slide down. It would be more comfortable for studying and reading too, since she’s not supposed to fully lie down anymore.
Anyway, the gofundme is kind of experimental at this point. We’ll see what we think and make adjustments as we go.
I’m sort of hard to make laugh. I only do it for what I consider to be Very Good Things. Ben can make me laugh. Lots of times my kids make me laugh. They all say that I made them funny but not laughing at things they did that I didn’t find amusing, so they had to keep trying harder and harder to get me. And they are all very funny, so I guess that worked.
Another thing that makes me laugh is Ylvis, as posted about earlier. One thing that liking the humor of Ylvis did for me is that it got to to watch Season 1 of Kongen Befaler, which means The King Commands and is Taskmaster in Norway. I watch it with subtitles and it really does make me laugh. And that led me to Taskmaster. And boy do I love Taskmaster too. I’ve watched all the British seasons and some of the other versions. I think there is a new season out now and I’ve been waiting to watch it. That will be a very nice thing to do in November, I think.
I am smiling right now thinking about watching Taskmaster with my dear friends Greg Davies and Little Alex Horne.
These shows are so SMART, you know? So you get to laugh and you get to think, and you get to solve things. It’s such a good combination.
It’s funny because Marissa used to love her Britcoms on PBS and tried to get me to watch them and I was like, yuck, no, I can’t even understand those people. When Ben and I watched Shaun of the Dead, I had to put on subtitles. But then Ben and I watched Downtown Abbey and Great British Bake Off and then Taskmaster, and I don’t have a problem with the accents at all. I really don’t understand how I ever did.
And I’m so glad I can watch it so easily now because the funny things I have found matches up with my sense of humor to a T!
I filled out my Secret Sister form for church today. I hope I do a good job and help her to feel loved. Sometimes I let time get away from me. I’m going to start praying for whoever mine is tonight! I don’t know who she is yet, but God does.
Okay, today is Something You Didn’t Have Last Year. And I am pleased to actually be writing this on the correct day and not having to backdate.
I’m going to have to make it short and sweet because there’s just too much happening right now and I want to let my mind rest a minute. But I am thankful for my son-in-law and future daughter-in-law, neither of which I had last year.
It was wild having my children start dating their eventual life partner within days of each other. Suddenly instead of six chairs at the dining room table, we needed eight. And we couldn’t all fit in one car anymore. It’s been difficult getting used to new people being at our house all the time. I am usually guarded around people who aren’t my close family, and having others here made me feel on edge. It’s better now.
But even with that difficulty, I am so thankful that Ben R. and Mia are in Lenora’s and Bennett’s lives, and that they are very happy with their partners and in love. It is hard to let go but it is good to add more love to our family.
I have been praying for my children’s future spouses ever since they were babies. It has been very nice to finally meet two of the people I’ve been praying for.