Category Archives: Travel

December procedure

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Belinda is scheduled for another procedure in DC at the end of the year. Today I’ve been productive, emailing both the organizations that has helped us with lodging, ground transportation, and flights in the past. I’m hoping that next year we might be able to manage these things on our own, but for now, we’re still digging ourselves out from the unemployed season. I sure appreciate these organizations that help with these things. I don’t know what we would have done otherwise. Probably be a lot farther in debt, I guess.

We need to get the procedure over so her swallowing is as good as it can be before the new year, because Belinda has won the Brad Henry Scholarship from NWOSU and will be spending the spring semester studying abroad at Swansea University in Wales. Her passport just came in last night. This is all so very exciting and also a little more concerning when your person has medical issues! I read online that the school will be letting us know what we need to do to obtain health insurance while she is overseas (you have to be there for six months to qualify for free medical in the UK, and she isn’t supposed to be there that long), but with only a few months to go I would really like to get that unknown checked off! I also want to know what happens if for some reason she has to come home early, and what I need to do to get her phone service while she is overseas. It’s a lot!

On the writing front, I have made it a quarter through The Night The Stars Fell and I am in love with this story. But there’s so much research! I greatly admire anyone who has written historical fiction because it is tough! I’m learning a lot though, and that part is great. I’ve been getting more writing done while Mom has her caregivers here at the house. It usually gives me about three hours to get things done. Today I needed to do a newspaper interview in that time, and then I needed to do follow up for the Belinda things and also for the FASFA, but now I have about an hour. I did want to put something on here though, since I have been putting it off for so long! After I’m done with this, I’ll have about an hour and then I need to take Sarah to the orthodontist. And then I need to go to the pharmacy. And then maybe that’s it!

My only other thing of interest is that I’m writing An Introduction to Logic by Irving Copi, and it’s a textbook and it’s definitely not an easy read. The book I have is hard to read in dim light so I also found an old version at archive.org and downloaded it to the Kindle Fire I won in the library summer reading program this year. It’s the first thing I have downloaded to it. So the lighting is better, even if there’s not that smug satisfaction of reading a book that is obviously 70-ish years old. The editions are slightly different, which is interesting. And I can always read the actual paper book when the lighting is good. But sometimes our lamps just aren’t cutting it!

Anniversary

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Today my facebook notifications let me know that this is the three year anniversary of when Belinda was first admitted to the hospital at Children’s in OKC for what would eventually be diagnosed as achalasia. This was a rough reminder today, because she has been having more trouble swallowing lately.

Her car isn’t working, and the repair will cost maybe around 2800, which we don’t have, obviously, so I drove this morning to Alva to bring her back home. She was excited because her friend was going to spend the night to celebrate the friend’s birthday tomorrow. I asked her to drive partway back, and we decided to stop at Chick-fil-a in Enid, have lunch there, and then have her drive (because my behind was killing me!) We ordered on the app, very smart, because it was super crowded when we got there. She got nuggets and macaroni, her fave, and I got a salad with the cut up nuggets in it – delicious! But she’d only started to eat when she sat up straight and seemed to retreat into herself. This is the sign that food is getting caught, and she needs to focus on it. After a minute, she excused herself to the bathroom.

Long story short, she didn’t get it all out. One spot still had food stuck in it. She could sort of drink water around it, but she couldn’t eat anything else. So we packed up our food and went back to the van. Before we got in she asked if I had any of her vomit bags and I did, so I got it out of the pocket behind my seat in the van and she got in and used it. And she kept using it. Everything was coming back up, food and water both. We stopped in Kingfisher because I’d promised Sarah I’d pick something up and I also decided to get things for a roast beef dinner so Belinda could take some back to Alva with her. She got the hiccups, which happens when she gets food stuck, and she stayed in the car with the a/c on while I hurried in and out. The hiccups hurt, and she’d drink water to try to get rid of them and then have to use the vomit bag again.

She almost had the bag completely full when we got home, and I said they were little, but they’re really not that small. It was a lot. I took it from her and dumped it out by the fence. She said she hoped that some little creature would find and be happy with the water and food in it. At least that was something positive.

We should have gone to DC during the summer break. She didn’t want to, because of her internships. But now she won’t want to go until Christmas break. I sure don’t want to do this. I don’t want to email the GI department and get the ball rolling. I don’t want to contact NORD and see if we have anything left in her grant for hotel and ground transportation. I don’t want to call Mercy Medical Angels and see if we qualify for plane tickets again. I don’t want to fly. I don’t want to have to be the grown-up and take the lead at the hospital. I don’t want to have to figure out how to pay for meals when we’re there or how to get from place to place. I’m tired. I’m so tired.

And yet I know I will. I am not going to forget the lovely blessings that have happened lately! Ben’s new job is going great, and I did win that Kindle Fire from the library adult summer reading program, an awesome bonus. Ben mowed the lawn today!

I also wanted to mention that even though my window is broken, Ben keeps taping it up when I ask and that is greatly appreciated. But last Sunday, super early, I left the girls at home and went to Newcastle to get stuff to make the lasagna Belinda requested, and I realized the window was part way down and someone could get into my car. (Although like who would, right? Ha ha.) I tried to think of a good place to park it and then I wondered if the oil and lube department was open that early, since I have not had an oil change in forever. Maybe once since the job loss. But I had enough money on a credit card and with his new job I thought it might be a good idea to just go ahead and get it done, and then pay for it when he gets paid. The people at the auto department had to call me back after I’d checked in, to make me sign something that wouldn’t hold them liable since THERE WAS NO OIL ON THE DIPSTICK. Whoops. There was still a little in there when they drained it, though. And I took Belinda to Alva the next day. I could have completely ruined my car, and at such a terrible time with Belinda’s car also out of commission. I use my car to drive her, and drive Sarah, and also get Bennett to work when he needs rides. And I smiled and thanked God because if my window hadn’t broken, I wouldn’t have worried about someone getting in my car, and then I would have just waited on the oil change until we had money in hand. But God makes all these things happen in the background that do work together in a wonderful way. Engine wasn’t knocking or anything. I wouldn’t have known there was an issue if they hadn’t told me. I mean, the service engine soon light is on but that’s been on forever.

Anyway. That’s the update. Belinda wants to go back to Alva tomorrow and I don’t think I can bear to drive six hours again. She came home and slept in my bed this afternoon and I’m glad because I know that food in there is hurting her and there’s really nothing we can do. I can get the ball rolling on scheduling her next procedure though. So that’s on the schedule for next week.

P.S. I don’t know why Belinda keeps having trouble. There are parents in the online achalasia group whose kids got the POEM procedure and have gone back for follow-up endoscopies but haven’t needed any more dilations or had any other issues. I sure wish it would be a little easier on her like that. She was really sad about it today, and I know she was thinking about how she has to deal with this her entire life. I don’t like to think about that either. It’s so discouraging. I wonder if the Ehlers-Danlos tissue connectivity disorder is why she keeps having trouble.

Dance and dorms

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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.

I WROTE!

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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!

A poem I wrote at the children’s hospital

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I wrote this while we were in the waiting room at Children’s National Hospital earlier this month. I don’t know if the quality is that great, since I wrote it and didn’t really edit it at all, but I felt like I had to try to capture the space, and the mood, and the feel. It was one of the most poetic places I have been in a while. The poem doesn’t seem to follow many writing rules, but it was what was happening around me. I wrote this in the notes app since I didn’t have any paper.

Children’s hospital

Forgotten crayon on the floor
Yellow, alone on polished cold tile
Mickey and Minnie frolic on tv
Above a woman with her head in her hands
Children’s cries. Cranky. Tired.
Kids’ waiting room at the surgical center.

Bright painted walls. Blue, green, purple
Elmo, Moana, colored carefully or scribbled
Equally displayed, Scotch taped to doors
Edges flap as blue paper cap wearers
Rush through. Hurry, hurry
Kids’ waiting room at the surgical center.

Quarts of hand sanitizer
Join tinsel and gnomes by the silvery tree
No eating
No drinking
Kids hunger and thirst, parents must too
“Take it out,” warns reception. Offenders comply.
Kids’ waiting room at the surgical center.

Filling out forms, swiping through phones
Texting ‘no news yet’ to loved ones at home
An empty car seat at the feet of Grandma
Waiting for good news
And a small one back in her arms
Mom with tan backpack called out with her teen
Kids’ waiting room at the surgical center.

Dad grips white bag of somebody’s clothes
Twists the band strapped to his wrist,
Bar code printed by somebody’s name
Mama brings in a very small wheelchair
Warm jacket and marble game tucked
In the seat
Speaks on her phone in an unknown language
Smiles and laughs, then her voice goes soft
Kids’ waiting room at the surgical center.

My child hungers. She closes her book
And now scrolls cat memes, sharing a curated handful with me
“I think that’s A.I.” I say, and
She doesn’t mind. Her leg bounces lightly
Betraying her calm cool classy demeanor
Our pager lies silent, useless, as we shift in hard seats
Kids’ waiting room at the surgical center.

A beautiful moment in nature from the year

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Well, well, well, “December Journaling if you feel like you haven’t achieved anything this year,” we have made it to Day 29: A beautiful moment in nature from the year. And today is Dec. 30, so I’m practically caught up. I think I’ll save the last two for tomorrow though. I’m enjoying writing at the library but I intended to work on my novel. I always tell myself that blogging is my time to warm up, but it’s really a delay tactic. Real writing is HARD, ya’ll.

So my first thought was Spring Break, when we went to Roman Nose State Park and took a super long hiking trip. I should have put that, and Krislyn and my walks in Oklahoma City on my accomplishments in an earlier post but no turning back!

Anyway, Roman Nose. It was Ben and me, Krislyn, Lenora, Belinda, and Sarah. Krislyn and Belinda were super in shape and ready to hike the 10 miles or whatever we did. Sarah was the worst off. The rest of us lay somewhere in the middle. We were just getting a geocache. But wow, what a long, not well marked trail it was – especially since the normal trail was closed for construction, with nary a sign with that information until you were upon the closed area!

We also had a beautiful moment in nature at Gatlinburg, when we were outside the public library. It was just so very pretty.

This last one was from one of Krislyn and my walks (or maybe there was just one walk, that’s a little blurry now). Anyway, there was a lot of not pretty stuff on that walk, but there were a few pretty moments. Krislyn probably took this picture.

A memorable journey from the year

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“December Journaling if You Think You Haven’t Achieved Much This Year” Day 28: A memorable journey from the year.

One thing that was memorable was Belinda’s final dance nationals competition. I got credit cards to pay for it, which I know wasn’t the smartest thing to do, but I was unable to even consider not letting her do it. Getting to see her dance like that one last time was so wonderful. It was also really special to have that week where it was just Ben, Belinda, and me. We didn’t go too crazy with spending but we ate out a few times and I bought passes to go to Ripley’s Believe It Or Not, the Ripley’s Aquarium, and some Ripley’s mini golf thing. I really just did it for the aquarium, but the other things were interesting too. And Belinda loves mini golf. We got to go with her duet tap partner and her family. It was fun hanging out with them. We also went to the library, rode the free trolley a LOT, explored, went through the national forest, saw a lot of cool things. And I got to spend time with just Belinda. I am so glad we had that time before she went to college in August. I can treasure that forever. One thing I did not do is post any pictures onto facebook about it, because I was waiting for the dance media to go along with the post, but now I can’t even remember what I’ve done with that now. I’m sure it’s all saved on the hard drive, but I would like to do a post about it, so it will be in my memories each year. I’m thinking I will do it on the one year anniversary. Along with Bennett and Mia’s wedding. One year anniversary isn’t even a month away for that, so I need to gather my photos now!

Another memorable journey was Karlene and my journey to support Sarah’s first year in marching band. We went to almost all the football games (Northwestern Parents Day got in the way one time, and the haunted house at the theater was the other) and not only did we get to see her perform, we also got to watch the Tigers have an undefeated season and win state! Sarah had never been to a Tuttle football game before this. What a way to start! Not only that, we got to see the band perform their routine at competitions and I really enjoyed that. Sarah was always so happy to see me there. Made my heart joyful! And Karlene and I traveled to out of town games, had dinner together at interesting places, and stayed the night in a very odd motel. We spent the night because the next day we all buried Sarah’s stepmom’s ashes, and that was quite a journey in itself. And it’s not quite over, since she doesn’t have a headstone yet. That can be a 2026 project.

And it’s not really traveling, but this journey through being “poverty people” (a Righteous Gemstones reference that I adopted) was extremely memorable. Food pantries, medical issues, financial assistance, cutoff notices, watching our bank account dip below zero once again, pushing pride to the side to accept help from other people, and still knowing that God has held all of us through all of it has been so good for our family. I would have rather learned these lessons without being so strapped, but I know that if this is the path God chose it was the right one for us! I am so thankful for everything that has happened this year.

Last Day in DC

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It’s eleven days after we left DC, but I still wanted to post that last day on here.

We woke up and packed up all our stuff. Then we went downtstairs and the front desk checked it so we didn’t have to haul it around all day. From there we ubered to the Rayburn building at the Capitol. We had an appointment to meet Tom Cole at 12:30. We got there early and that gave us more time to figure out where things were. We had a nice sit down meeting with him. We mostly talked about Belinda and about things in Oklahoma – just a social visit, really. It was nice meeting him. He seemed impressed with Belinda, and said if she was interested in being an intern in the future, she could apply with his staff.

He gave us each one of his coins, which is like coins people in the armed services carry. For some sort of bar thing. This was Belinda’s second coin like this; she has another from when she was very little and Jim Inhofe gave her one. She did not realize this because when she got old enough to try to play with it I hid it from her.

After that we walked around a bit. Belinda got a headache so we walked to a CVS. Then we got an uber again and went back to the hotel to get our stuff, then went to the airport. We volunteered to check our bags because the flight was so full, which we hadn’t done before. It was kind of a drag getting them afterward, but it was also nice not hauling them around right after the flight.

Belinda was on her laptop the whole time, writing. I don’t remember what I did. Mostly concentrated on keeping my elbow away from my neighbor’s elbow.

Lenora and Ben R. came and picked us up and the airport and that was very nice. They were hungry and so were we so we went to KFC, then home!

Belinda said the dilation didn’t help very much this time. Bummer.

Library of Congress

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We got to a slow start this morning because Belinda wasn’t feeling well. But around 11:30 am, she started feeling more up to going out and seeing some things. We talked about uber or metro, and then ended up walking the 2.2 miles from our hotel to the Library of Congress. Belinda wanted to see the books!

We went to the Jefferson building, and you have to sign up to get inside. So I got online, signed us up, and inside we went! There were several displays and galleries inside, and the artwork on the ceilings was beautiful.There was also a big beautiful Christmas tree. But Belinda said, “Where are the books?” At one point, we went to an area where you could look out over the area where the books were. There were librarians and a few patrons in there. Hmm. Then we saw a sign that said that you had to apply for a library card to use the reading rooms, and it had to be done in advance. So we scanned the QR code, filled out the quick forms, and found someone who could tell us what to do next! Nice that Belinda is 18 now so we didn’t need to print out anything for me to sign for her to have her own card. The lady made sure that we had already signed up (we didn’t mention it was five minutes before) and then sent us to check our coats and bags, then down three long hallways to an elevator. We rode that that, then asked the man there what to do, and he sent us to another room where we showed our drivers’ licenses and they took our photos and gave us our new library cards! They expire in 2027, which is a good thing since after our walk my hair looked like I’d stuck a fork in a toaster. But how cool is that!

We went in to the reading room at the Jefferson building. You can’t take any books off the shelves yourself – you have to look up what you want and tell a librarian and they get it for you and you read it there. They have a lot of genealogy things there and I have wanted to see Library of Congress materials before but never knew how to do it. Now I know!

Belinda wanted to see the law library collection most of all, so we left the Jefferson building and went across the street to the Madison building. This building was much more quiet and there were no tourists (except us, ha ha). We figured out the layout, checked our coats and bags, and went and found the law library. Everybody was so nice there! The librarian helped Belinda find the section on Space Law that she asked about, and the bookshelves were all pushed up together but they came apart with a crank on the side (it was seriously the coolest thing ever) and then she left us to that section – you can take books off the shelves yourself in the law library. Belinda got a Space Law book and I selected one on Maritime Law – the law of the sea (for all you Arrested Development fans out there). We found a cozy place to read and it was nice and quiet, with other patrons browsing, researching, and readings.

After looking at entries on shipwrecks and piracy, I became weary of maritime law and picked up the Library of Congress magazine on the table in front of us, and that was really interesting. I discovered that there used to be a tunnel between the Jefferson Building and Congress, so the Congressmen could have quick access to the library holdings, but it was closed when the Capitol Visitor Center was built. And that got me thinking about National Treasure and 39 Clues type of things, and how much I would like to read a book that included some sort of exciting secret with that tunnel. I guess I should write it!

We never ate lunch, so we went to a place called Good Stuff Eatery and had chicken strips and fries. We sat up on the second floor and the place was empty except for us and we looked out the windows and all the people coming and going. I have been guiltily getting chocolate milkshakes lately from McDonalds (I had no idea they had gotten so good!) and so I really wanted a chocolate milkshake, but they also had a toasted marshmallow flavor and so I got that. It was okay, but I think the chocolate shakes from McDonalds are better! I guess I like all those fake ingredients, I don’t know.

At home, the family was having a funeral for Nutmeg. Belinda and I were sorry that we couldn’t be there, but glad because we did love on her while she was with us. Sweet kitty.

Anyway, we took an uber back because it was getting dark and we were tired. The man who drove us was from Ethiopia. We haven’t been making small talk with any of our drivers but this man took the lead and so we chatted with him. It was interesting learning about his life and we told him a little about Oklahoma. He was surprised to learn that no one really honks their horn much in Oklahoma, and that we felt personally victimized when people honk their horn around us. He said there’s so much honking in DC that it’s like music to him, ha ha! We had to pretend to hear him sometimes over the noise but we did okay.

Now we are back in the room and hanging out. It’s nice to just be with Belinda.

Washington DC

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Yesterday Belinda and I flew into Washington DC and today we went to Children’s National for her procedure. It was an endoscopy with possible dilation (they did that). We are here because she still goes to the pediatric surgeons that performed the POEM procedure for her achalasia.

So yesterday we got to the room and didn’t want to do anything. After a while we bundled up and walked to Domino’s and got pizza. Belinda did not wear gloves and her hands were so cold! I considered giving her mine and then I did not.

Beautiful view from our hotel room

This morning we called an uber and got to the hospital early. We went to see the chapel and the Healing Garden, which were underwhelming. But I’m glad I saw them because I had wanted to see them for a long time. There is allegedly something on the roof as well, but I wasn’t brave enough to try to find that.

We were in the waiting room for a really long time. I wrote a poem that didn’t rhyme, after an abandoned yellow crayon under a chair piqued my interest.

Waiting

Anyway, I made a bunch of notes of the day, mostly so I can keep the facts straight and remember which doctors and nurses worked on her (which came in very handy today with the phlebotomist).

Belinda told Dr. Kane that she had no symptoms and every thing was good and I told her to really tell him, and then she talked about how things were getting stuck sometimes and how she was having spasms. He told her that stress can make achalasia worse. So when she was unable to swallow in the cafeteria at school, that made her have to regurgitate, which made her even more anxious the next time. I am very thankful the school released her from the meal plan. I cook and freeze meals for her, and she makes herself an egg for breakfast every day.

Anyway. The nurse came and talked and talked. She was very nice but it was a long chat! We were both getting tired. Then the anesthesiologist came in, and he checked out Belinda’s veins and then she said not my hands, please, and he said what about your foot and she said sure and I DIED but he got it onthe first try and Belinda wasn’t even bothered. I felt nauseated but made it.

Shot in the foot time

Dr. Petrosyan came by to say hi. He and Dr. Kane are both her surgeons, and they performed the POEM together. Her last scope and dilation was also with them. Today Dr. Petrosyan was the surgeon who was doing all the emergency surgeries. We talked about languages a little with him. He knows Armenian, Russian, and English. He’s very smart!

So it took a bit longer because the consent form didn’t include the dilation, and so the nurse couldn’t let her go to the OR until that was fixed. So Dr. Kane fixed it, Belinda signed it. She was glad to get to sign it twice because she got her digital signature to look better the second time.

Dr. Kane said everything looked great and the dilation they did was very small, but they of course did it while they were in there. It looks like it went from 9.4 mm at the narrowest point to 12.0 mm. So that will be nice for her.

We got an uber back to the room and I had thought we might go to the Botanical Gardens this evening but she just wanted to order food and rest. So we got fettuccine and had it delivered. I’ve never done that before and the cost was horrible. Too cold to walk tonight though, and getting an uber would have been more expensive.

Tomorrow we are supposed to meet a senator in the morning. Then the art museum or library of congress or natural history. I’m letting her lead.