Midsummer

We are deep into summer. It’s over a hundred degrees outside most days. Ben bought a new window air conditioner. It’s nice. Mom dislikes it because she says it’s too cold. She keeps her door shut. But the two days we had no air conditioning she decided she preferred to have it. Of course, she doesn’t remember that now.

Belinda has finished summer school. She ended up with an A in her psych class, which she loved, and a B in her personal finance class, which she detested. She is trying to do extra credit to bring the B up. I’m glad she doesn’t get too worked up about that kind of thing anymore. She is at her job at the Tuttle Library right now. She has really enjoyed working there this summer. They are having a dinosaur tea party today as part of the summer reading program and she made the cutest cupcakes to take along. She hid them in her room last night so no one would find them and eat them!

Sarah will be at band camp from 8 to 4 every day next week. It’s going to be a long, hot week. I know she’ll enjoy it though. She likes band now and is proud of the part that she plays in it. She will also be in the musical Tarzan next weekend and the one after. She has really been getting into that as well. It’s good.

Ben had an interview for a job that’s actually in COBOL this week, and they requested a second interview. I don’t think it would pay much more than what he is making now, but at least it would be something that he really enjoys doing, and that he’s trained for and confident in. I’m happy for him. Plus the hours would be a little more regular.

Mom has gotten a bit worse. We had a pretty good system where she was okay watching TV most of the day and I’d do the things I needed to do. After this latest slip down, she gets confused by the shows and wants me to come in her room again and again to reassure her that it is correct. She doesn’t believe me. Like she watches the Lone Ranger and if he’s not on the screen for a minute or two, she gets upset because it’s the wrong show. She also feels like she should be doing something. She keeps coming to me and asking what she needs to be doing. I can barely keep myself together right now, so I can’t imagine giving her little chores or hobbies to keep her occupied. So I usually get her a snack and put her in front of the TV again, so I can keep working on whatever I’m trying to do.

The last person in this house is me. I am not doing well. I am doing very bad, matter of fact. I cannot keep existing like this. I can’t even describe what the problem is. It’s a million tiny paper cuts bleeding me dry. Mom’s needs. Sarah needing rides and direction. Belinda’s medical issues and support needs. I don’t even want to say any more because this is personal stuff for people I love but the gist of it is, I’ve spent my whole life helping others and serving others and I was very, very good at it. I was super busy but I was good at it. And now I am overwhelmed. I’ve read quite a bit about autistic overwhelm and burnout and I’m sure that’s what I’m in and I have been for a while. So I try to pull back and then start again but each time I restart, my window for being able to work properly seems to be getting smaller and smaller. One thing I read was that many high-functioning adhd/autistic women who are undiagnosed only discover their neurodivergence when they are in perimenopause. This happens because they have been able to handle everything and then suddenly they cannot anymore. I’ve wondered if the brain fog is from a medication, or long covid, and it may be, but I do think that it is also coupled with perimenopause and it is just beyond what I feel I can bear. Like I know God is with me through this but I am drawning. Absolutely drowning. And even when I tell my loved ones, I feel like they are sorry but they have their own problems and can’t help me.

I am looking for a second caregiver to come in. We all like the lady Mom has now but I need more than that. I also need Sarah to get her drivers license because taking her places is also just too much. And that sounds ridiculous. How could that be too much? But when it is added on to everything else it just is. I keep trying to find escape hatches or solves, and I haven’t found anything. I know I am an intelligent person, but the solution to this trap I’ve built for myself eludes me.

I am not at peace. I am a very, very long way from being at peace. Yes, there are moments of joy, but my entire system feels like it is full of static and disease. I love my family and I want to do things for them. It’s how I show my love to them. But it’s also how I feel love and the well feels so dry, right when I need more. A lot more.

I can fake it. I keep trying to fake it. I keep praying and deciding that I am thankful for all of this, and I get up and work and clean and serve and do but I’m still not writing. And that’s what my heart yearns for. But it seems like no one around me really cares that I cannot seem to do it in this state.

It was easier when Ben couldn’t find work. At least then I could get medical care. Finances are also bad. I’m getting to the point where I’m going to have to decide which medications are the most important for me, and which ones I can just cross my fingers on. I write my newspaper stories to help a little. But newspaper stories don’t pay for $1200 electric bills (hopefully the new a/c unit will help with that one next month). I also can’t get my brain to comply enough to do the other at-home job I’ve been working on. It takes real focus, and I just don’t have it.

I don’t want to be the person who plans things anymore. I don’t want to be the person who runs things anymore. I don’t want to be the person who thinks about things anymore. You know what I want?

I would like to have a nice quiet place where the temperature was nice and no one needed anything from me and I could work on my novel and read, and have my little garden (my porch garden has been a bright spot this summer), and write letters and cards to friends and loved ones, and just decompress and breathe and get back to where I can feel balance and peace and the beautiful presence of God in my every moment.

I’m not going to hurt myself, I need to make that very clear. But I do feel like when it is my time to pass away, it will be a great relief to be away from all of this.

I probably shouldn’t post this but I am going to anyway. Call it a cry for help. Maybe I’ll go back and make it private later.

Ice Cream Festival

Wow, the Arts Council of Tuttle hosted the Tuttle Ice Cream Festival on July 4. This is an event that was held in Tuttle from 1992 until 2018 and then it stopped. The chamber started it and the city took over at some point and then ended it after the 2018 year. Then the downtown businesses had an Downtown Ice Cream Social in 2023.

So Bennett asked the council if we would try to host it because he loved it as a kid and he wanted today’s kids to experience that too. We said sure, we can look at that for 2027, and then he reminded us that this was the 250th anniversary of the nation and so we just went ahead and did it. We did it in two months.

It was smaller than before, but we had the event, like 25 vendors, food trucks, Braum’s ice cream, games, entertainment, ice cream eating contests, parade, and the Ice Cream Princess pageant. It was a great way to restart things. We’re planning to do it again next year!

Anyway, that’s been taking up a lot of my time, and I’d guess I will need some recovery time too.

Oh, and I don’t think I mentioned earlier that Rena left the Deborah Harris Agency and went to another agency and only kept some of her clients and I was not one of them!

Bye Dr. Miller

This week Belinda had a dentist appointment (no cavities, HOORAY) and then on Wednesday we both had appointments with the internist up in Tulsa. Belinda and I went by ourselves since Ben had work. We had not done this before. I was a little skeeved about taking the turnpike but then we got started late and that was the only option and you know what? It wasn’t that bad. It was actually a pretty nice drive. I wouldn’t let Belinda drive though.

Our internist is a wonderful person and a great doctor who really listens and cares. Her name is Dr. Miller and I found out about her in an Ehlers-Danlos group on facebook. We’ve been to her maybe 3-4 times. Belinda has been there more than me. We went every six months (we did virtual once though). And this was our last visit with her!

She’s such an amazing, awesome doctor that the Mayo clinic wanted her to lead their entire Ehlers-Danlos department in Jacksonville, Florida, and of course she had to take it. She will be able to work with EDS patients every day and will learn so much to help others with connectivity tissue disorders! I’m truly happy for her. But we’re going to miss her terribly.

And then what for us? I know there’s another doctor in Tulsa who works with EDS patients but I have read that his staff is hard for some people to work with. As a neurodivergent person, just considering that makes me extremely nervous. Then she remembered we live by OKC and asked if Dallas was too far to go. I said probably not, I mean, it’s two hours to Tulsa or three to Dallas, and she said that that’s where we need to go and she gave me some names to research.

I’ll also need to find out if my and Belinda’s insurance will be okay with us going out of state. There’s always a catch!

Anyway. I wish her the best of luck and I’m so glad we found her when we did so we could learn from her as we were starting out on this Ehlers-Danlos/POTS/MCAS roller coaster! Her influence will be lasting on us for many years to come.

Dance and dorms

Sarah’s dance recital was on Saturday and she did such a good job! We were all really proud of her. She was right on the beat the whole time, and she didn’t look off stage at the teacher. Girl has got a great sense of rhythm.

The next day we all piled in the car at like 6 am (not Mom, we got help) to get Belinda moved out of the dorms. That look a long time and it was raining some of the time. One thing we had to do was move the medical bed out of the dorm and that was a project. Luckily I remembered her grandparents still had a storage unit in Alva, and they said they did have enough room to store her twin bed for the summer. I am so glad we didn’t have to bring that home! We would have had to take the truck too, and then it would have gotten rained on. Or we would have had to borrow a trailer. After that, we had to pack all her stuff up because she hadn’t packed very much. I got boxes and tape and paper from Walmart and we boxed it all up and got her moved out just at the deadline!

We stopped at Chili’s in Enid on the way back and I got treated to dinner for Mother’s Day. That was very nice and I keep smiling about it.

It’s been good having her home. Her stuff is everywhere and it’s about to drive me crazy.

Today Sarah’s going to go for her food aversion therapy session. I’m very interested to see what that is going to be like.

Busy, fun days

This week was Bennett’s birthday. I was worried I would not see Bennett on his birthday because he and Mia had plans with friends, but they made it happen. I was very glad! I will be sad some day when I don’t get to be with my babies on their birthday, and you know it will happen at some point.

The next day was Sarah’s art show at the school and she had some great pieces in the show. I posted them on facebook and they got a lot of compliments.

Then yesterday we went to Ben’s work’s Family Fun Day at Orr Farms. Belinda didn’t come home from college and Sarah didn’t want to go. Sad. But Ben and I went, and Lenora and Ben R, and Bennett and Mia, and Ben R’s family too, and that was fun. We took a ton of photos and we had lunch there and Ben won a soft sided cooler.

Orr Farms is set up mostly for small people, but even though we were big people we had a good time. I got a strawberry lemonade and I could taste it a little!

Still going

I continued to write every day in Alva and that felt great! I wrote at the public library, at the college library, in Belinda’s dorm room, and just sitting in the van.

I’m a little nervous about continuing when I get back home, where all the things that pull me away await.

I WROTE!

I WROTE!

I wrote, I wrote, I wrote, I wrote, I WROTE!

And not just writing, I wrote in THE NOVEL!

I wrote the scene that has been PLAGUING me in the novel!

I finished the chapter!

I was only 746 words but HEY SEVEN HUNDRED AND FORTY-SIX NEW WORDS! And I love them!

I have been with Belinda in Alva the past five days. I went straight from the writing conference in Tulsa to being in Alva helping Belinda through some emotional difficulties. I kept thinking about how I needed to take advantage of this opportunity, so I read all the former pages, thought about what I was trying to do with this scene and why it was so hard, worked on some backstory and then I JUST WROTE IT!

Wow, I feel like I could conquer the world!

General thoughts

I have been having a more difficult time as of late. It is interesting to see that, after so much time feeling very collected and peaceful, I have finally hit a snag.

Mom is getting worse. The dementia has reached a level that is very hard for me to handle. I am not sure how to make this work and keep my peace and my own sanity. The stress of it is making me less patient with others as well. Today Mom was asking me questions and Sarah was also upset with me about something and it was just so much that I started wrenching the lid on the jar of peanuts I was holding. I felt like I needed to hit myself to stop the energy dashing all over inside of me and regain control. But I did not, and I’m proud of myself. I am so thankful for Ben, who saw my distress and handled it for me. I fled to the porch and then to the yard, to a chair I have put in a corner where I can hopefully just be alone and rest. I did feel God’s peace and love after a bit, and I was quietly singing It is Well with My Soul, but I still felt that energy zapping inside of me. It is really a struggle to deal with that.

I finally came back inside but I am still by myself. I read some of the book I’m trying to get through, Worlds in Collision by Immanuel Velikowsky. It’s interesting but it is DENSE. I can still feel that energy. it’s not a good energy. It’s a wild energy and it makes me feel dreadful. I probably sound crazy talking about it, but it really is difficult to describe. This is the best I can do right now.

Tomorrow I am going as a chaperone for the school band trip to Dallas. I felt like Sarah would need more support since she doesn’t really have friends in the band. I am not sure what all will be involved but I know it’s not just party time for me; I really have to watch and help, and that will not be easy. When I dropped her off at school today I told her I was looking forward to tomorrow and also dreading it. She said, “Me too,” and that helps some. We are two birds of a feather in a lot of ways.

I opened some windows today because the house felt stuffy and smelly. I’m in a room with an open window now and there is just the loudest frog outside! I went to the window and tried to see it, and then it was very quiet because it’s so close. I stood still and it trilled again and it was so noisy! I am glad it’s so happy out there. I love frogs. Or toads. Whatever they are here. They are wonderful.

I hope Ben remembers to take care of everybody here while I’m gone.

I am also planning to go to the SCBWI Oklahoma-Arkansas spring conference in Tulsa next weekend! I almost didn’t. But I finally realized that I really did want to. So I am.

I am thankful, still. I need to remember that. And I need to pray more!

Stuck food

Last week Belinda got food stuck in her esophagus. It happens sometimes, but this was a particularly bad one. She’d gotten a hot dog from Sonic (as an 18 year old does sometimes), even though bread can be difficult. So it got stuck. She got some of it out but not the stuck part. And it hurt. It hurt her chest and gave her the feeling like her “ribs are being opened up.” She couldn’t drink water or anything – it all came back up. She called me and we talked through some stuff but nothing worked. She couldn’t study; she couldn’t sleep. She didn’t want to go to the emergency room. I wasn’t sure if she should, anyway, because I don’t think just anyone should be poking around in her esophagus, you know?

She finally got a little rest and the next day it was still stuck. She felt even worse. She ended up missing some classes and I think she did the ones virtually that allowed it. She hates to miss class! I reached out to Children’s National and they wanted her to not go to the emergency room if she could stand it. Later that day she started feeling dizzy and she said she blacked out except for a tiny spot in the center of her vision. Of course, she did not tell me that until the next day, after she had finally gotten it down and gotten to eat again, and things were better.

This morning in church we prayed for her. The pastor prayed for absolute healing, and that she wouldn’t ever have to deal with this again, for the rest of her life. That would be very wonderful.

We are going to schedule a virtual follow up with Children’s National. We are going to do it during Spring Break so she and I can be together for the zoom call.

We also had appointments tomorrow with the Ehlers-Danlos doctor in Tulsa, but we rescheduled those for June, again so it will be during a break. We need to get those on a June-December schedule (they’re six month visits).

I don’t know how to help from here, which is hard. I told her to please try to always eat something that will go down before eating something dicey, like a hot dog. I told her to keep some yogurt or something on hand just in case. The dizzy and blacking out part is so very not okay!

I really want to think of some things I can send with her after spring break that will help. I’m not sure what yet. Hopefully it will come to me.

A small update

It is surprising that it has been a month and a day since I wrote anything on here last. I have been very busy with medical and other things. Right now I am with Sarah at a dentist appointment, but I wanted to write something because I recently got the Finch app to try to be more productive, and I put “write something” on it and so I must write something. I did write a poem a few days ago, when I was in OKC for my yearly lady appointment.

Upon leaving an appt in the city

It’s fun to pretend to be a real person.
I think this thought as I travel the sidewalk
Like everyone else.
You are a real person, I remind myself.
But it’s okay; I know what I meant.

So anyway, I had the urge and so I wrote that. Because the thought was interesting to me.

I got a 2500 grant for ACT I this month and that’s the first one I’ve done. It felt really good to help in that way.