Thirty Days of Gratefulness – Something in Nature

Truth time, it’s actually Nov. 14 and I completely forgot about this project until yesterday, and then I promptly forgot again until today. I’m backdating it so it will flow properly but whatever, considering everything I am doing GREAT!

Something in Nature is the topic for Day 6.

I choose bodies of water. Isn’t it wonderful when you have a view of water? When I was growing up, my mother always wished that we had a pond on our property. My sister liked to sneak across the neighbor’s field and go to the creek near our house, and I went with her a couple of times. It was super nice to wade in the water and splash our feet into it.

And lakes are so wonderful too. To go out on a paddleboat, or fish, or even in a floatie, I have always enjoyed my time at lakes.

The ocean is magnificent, and somehow so strange how it goes all the way to the horizon. I like the ocean, but I am also a little frightened of it – of the magnitude, and the depth, and the things that lurk in the water that we can’t see.

When I was little, my parents would alwyas point out when we went over a lake or big river during car trips. I still do this for my children, even though they are grown. There’s something so lovely about serene about bodies of water.

So that’s what I’m grateful for.

Thirty days of gratefulness – A place that makes you happy

Day 5 – A Place That Makes You Happy

Well, I don’t need to write much about this one tonight. I am in the place that makes me the happiest in the world…HOME.

I am so thankful that Belinda and I made it safe to Washington DC and back home. I am thankful that the surgery went well and that she can eat easier again. And I am so, so grateful to be back home.

I know a lot of places make me happy. But this one makes me the happiest of all.

Waiting

Belinda is back in the operating room now. They said I should get to see her again in about an hour.

We took an Uber here and the guy was very nice, but quiet. That was fine with me because I like to be quiet too. Belinda and I pointed out things we saw on the way. When we got here, I didn’t understand how the elevators worked and an employee helped us but he seemed a little annoyed with me, sadly.

***My pager went off while I was writing this and the procedure went well and it’s already over!! She’s in recovery now and my pager will buzz one more time when I get to go to her.

Well, I wanted to recap what happened this morning so I’ll pick it up there.

I made a wrong turn upstairs and led Belinda through the cafeteria before we found the right direction, which was a shame since she couldn’t have anything to eat.

**My pager went off again and now I’m back with her in Recovery Bay 35. Maybe I’m not meant to recap the whole day. I’ll try to make things quicker.

So the lady was real nice when we got checked in. We got the pager then. It went off when it was time for us to go to registration. We got our bracelets from a coolo guy and then he said that the computer showed there was a $500 facility fee. I said that we were told we had met our deductible and out-of-pocket max and he said he didn’t know why it was on there so not to worry about it. We will see what that leads to.

They had a hard time putting in the IV again. The lady that everyone said was the absolute best tried and failed twice, and it took a long time and there was a lot of blood. So then they decided they needed an ultrasound to get it.

Dr. Kane and Dr. Petrosyan came by to visit about the procedure. It was great seeing them in person again. I am so thankful for their work. Belinda talked about her college plans and Dr. Petrosyan told her she could accomplish anything. He came from Armenia in 1991 when he was 16 years old and didn’t know a word of English. And now he’s a surgeon.

After they left, a lady I have talked with through the facebook group came over with her daughter, who also has achalasia and is having an endoscopy today. They are from California. It was great getting to visit with them and Belinda and the other girl exchanged phone numbers. It is good for both of them to know someone who truly understands. While they were there, the ultrasound team came in and worked on Belinda and finally got the IV in.

The other family got called back to prep for surgery, and it was time for Belinda’s procedure. That team was nice and asked Belinda what music she wanted playing. She jokingly said Ariana Grande and that’s what they played as she was being wheeled out.

They have a screen on the wall in the waiting room so parents can follow for updates. Belinda was number 15603. I opened my phone and saw that Belinda’s ACT test results were ready, so I pulled out the laptop to check that and to update people on facebook and by text.

Here’s the results that Dr. Kane showed me after.

**Well, now she’s gotten herself discharged! She’s changing while I’m desperately trying to finish this. Quick once it started!

When I got back here she was awake and talking to the nurse. She had a small bottle of water, a cup of apple juice, and an orange popsicle. We hung out and talked and she looked at her phone and I typed. Now she’s sitting up and she said she’s lightheaded. She said she shook her head to get the hair out of her eyes and almost fell over.

No food restrictions now. We have found a Cheesecake Factory close to the hotel, and that’s what she wants. She says she needs a piece of s’mores cheesecake immediately. So I guess that’s our next plan. Get back to the hotel and either dump stuff off or rest and then do it. I’d rather go to the hotel restaurant but she’s apparently too good for that.

Anyway, she just opened the curtain cause she’s ready to get out of here. But the nurse caught her because she’s supposed to leave in a wheelchair. So we’ll wait for that and then I guess I’ll call the uber and we will roll out!

Whirlwind

Just got a call from Jill at the hospital…they had a cancellation and Belinda needs to be the hospital at 10 am! That’s one hour and seventeen minutes from now. I need to get an uber ordered and she just got up and started getting ready. She can’t have anything to drink this morning now, but she will be done earlier so she won’t have to have clear liquid all day today! Jill said once she shows she can drink okay after the procedure, she can go back to a regular diet. I’m not sure what time the procedure will be, guessing noon here since we get there at 10. That’s 11 back in the OKC. Here we go!

Thirty days of gratefulness – Your favorite season

Your favorite season.

I’m glad this was the prompt for today. I’m pretty worn out already from the update about today, even though I just realized I forgot to put the pictures with it. I’ll have to go back and add those in a minute.

Of course my favorite season is autumn. I’m learning Norwegian, and the word for autumn is høst. That’s not really the point, but I learned that recently so I’m pleased to know it.

Fall always takes me back to the days of being new at Northwestern, meeting Ben, and starting our lives together. There’s so many wonderful feelings that go with the fall, like hayrides and bonfires and pumpkins and leaves falling. I was very happy when we were descending into DC to see the fall colors in the trees.

I’m not going to write much more tonight because I am awfully tired and I want to read a little. But I sure do like the fall.

Back in DC

Belinda and I are at the hotel in DC for the night. We are staying at Washington Plaza Hotel, just six blocks from the White House. The cost of the room was paid for the National Organization of Rare Diseases, which is a great blessing!

Ben took to us to the airport this morning and we got through TSA, then Belinda asked for Starbucks. I warned her it would be expensive at the airport, but then I went ahead and let her. She got the smallest sized chai latte, so it wasn’t that bad.

We were sitting at the gate when there was an annoucement that someoone had left their bag somewhere and it was with security. Belinda and I exchanged a look at that poor person’s plight. Then we noticed she didn’t have her bag! Turns out I thought she had taken it with her to Starbucks, and I came and followed her after a few minutes and left it there. But everything was in it safe and and sound and the security people smiled and thanked us for getting it. I’m glad we didn’t lose it!

Southwest gave us priority boarding again because of Belinda’s medical condition. I wasn’t sure we should do that since she’s not in a wheelchair or anything, but it was the best way to ensure we would be seated together, and I need to be there instead of a stranger in case she has choking issues. There was also a service dog on the plane that was a very good dog.

The flight was direct this time, and we didn’t have anyone in our row with us. That was very nice. I wrote my articles for the Tuttle Times and read. She looked out the window, read, and napped. It was a good flight. The pilot apologized for the turbulence early in the flight, when we were getting around the storms, but I really didn’t notice anything out of the ordinary. The flight attendants were super nice too. Just a good experience all around.

Belinda had apple juice and pretzels on the plane and she ate slowly and didn’t choke. She also had a few strawberries that I’d brought from home.

We got an uber to the hotel and the driver was very nice too. He was listening to hip hop and a Will Smith song came on while we were getting to the hotel and I took that as a good sign, since he is one of my all-time artist faves. Belinda didn’t recognize the song and said she only recognizes music by Ariana Grande.

Hotel is swanky and a doorman brought our luggage in and opened the door for us. Concierge is super sweet and helpful. She is going to print our White House passes for me, since I didn’t realize they needed to be printed until today. I finished up my stories and sent them while Belinda ate more strawberries. She did choke once, but went to the bathroom and it was okay.

Belinda wanted fettucine for dinner, and we found a little place about eight blocks away and walked there while the sun was setting. The place was pretty empty but the people were great and the food was too. It reminded us of the Chinese restaurant in Tuttle somehow. Belinda ate slow and didn’t choke. We also got cannoli to take back to the room which I’m looking forward to. We saw interesting architecture as we walked back and a church next door to the hotel had a group of people singing outside. We also saw a dog that looked like Bond from SpyXFamily.

(The church is the National City Christian Church. Wikipedia says it was built in 1930 and is the national church and cathedral of the Christian Church (Disciples of Christ).

We passed the Metropolitan African Methodist Episcopal Church on our walk, and I told Belinda how the Obamas had attended some services there. We also walked by the Saint Germain Foundation, and I informed Belinda I understood that was a cult. She’s getting so much learning here.

It’s only 7 pm but it feels later. I’m not sure what we’re going to do tomorrow. I didn’t expect the procedure to be at 5 pm so I didn’t plan anything for the morning. She said she might like to see the Library of Congress. She can only have clear liquids after midnight. I bought a box of the kind of broth she likes. There’s a fridge in here but not a microwave, so I don’t know what to do about that. Maybe ask downstairs? I do have a thermos.

Now she’s on her computer, looking to see if she has anything else due for her college classes. She’s got the inflatable wedge blown up so she can sleep (she can’t safely lie down flat anymore after her original surgery). This is the first time attempting to sleep on the inflatable wedge. I’m not optimistic but we couldn’t really bring anything better without a lot of hassle.

There were two complimentary bottles of water in the room when we got here, and she already finished hers and now she’s taken mine. Oh well, I still have water from the airport in Oklahoma City so I’m doing okay.

We’re looking forward to tomorrow. This procedure is basically a balloon dilation to open up the lower esophagus due to too much scar tissue forming after the POEM procedure surgery. This one is outpatient, so that’s great! I hope this helps for a long, long time.

Thirty days of gratefulness – A Song

Today I forgot that I was going to do this. Then I happened to look at my fb memories and saw the post I made on being thankful in 2017. So that’s very good!

I’m thankful for a lot of songs! But I’m going to write about a very good one. The Fox. It’s hard to believe I have enjoyed that song for 11 years now. I remember the first time I saw it. I thought the guy in it was pretty funny. Another song by him popped up on my youtube page and I clicked that too. Stonehenge. I thought that was very funny. And I noticed that the guy in The Fox was actually two guys, since I’d only focused on Bård the first time I saw it, and Vegard was obviously a different guy in Stonehenge. That’s what really sent me on the deep dive.

I watched their music videos, then some of their live shows, then all the transcribed episodes I could find of I Kveld Med Ylvis, their late night talk show. Since then, I’ve stayed a fan, watching them in everything I could find. I’ve even spent a long time slowly learning Norwegian, so I can hopefully understand the stuff that’s only in Norsk…eventually.

My interest has also led me to other Norwegian artists, and a fascination with their culture. I’m hoping that one day I will get to visit Norway and see Ylvis in concert myself!

Enjoying Ylvis has really been fun for me. Their sense of humor strikes my funny bone and consists of some of the funniest things I’ve ever seen. It’s gotten me through some hard times. And I also love sharing it with others, even though no one else seems quite as passionate about them. My family does enjoy watching Ylvis with me, though.

Hooray for The Fox!

The Fox!

Thirty days of gratefulness – A Person

Day 2 – A Person

I thought on this one a lot. I’m thankful for a lot of people. Ben. My children. My mom. My sister. Her children. My late sister’s daughter. My son-in-law and future daughter-in-law. Ben’s parents’ Ben’s brother and sister, and his brother-in-law. And then there’s aunts and uncles and cousins and friends…

I thought I’d just pick Ben, and I am incredibly grateful for him. I’m not sure that’s the one I want to write about today though.

I then thought about Jesus, who is a person as well, but although I am also so very grateful for Him, that’s not quite what I wanted to write either. I mean…obviously I am grateful to Jesus. And also to Ben. But who to pick then? If I go with a close friend or relative, then I would feel like I was dissing the others.

And then I decided that I wanted to express my gratefulness to Michelle. I’m not going to put her last name because I haven’t asked her permission, but Michelle is in charge of our homeschool group. Michelle was running things when we first started homeschooling. We went as a group and found fossils in southern Oklahoma. Her daughter was much older than little Lenora, but she took her under her wing that day and was so sweet to her. I’ll never forget that. Lenora was so, so impressed with her daughter and instead of acting like the little person was an annoyance, she acted like she enjoyed every minute.

Michelle has been the glue that has held our group together. I wondered what would happen as her children all graduated from school – who could take her place? But then, she just continued. Through illness and other difficulties, she came back and ran our co-op once again after her youngest was finished. And now, her oldest grandchild is homeschooling, and is there at the co-op on Tuesdays. I don’t know if Michelle will ever stop. She is such a gift to our local homeschool community.

Michelle is smart, she’s sarcastic, she’s efficient, she’s organized. She’s great at leading others. She sees your skills and gets you plugged in where you can help and feel like you’re contributing. She somehow remembers everyone’s name. I can’t remember the names of people I’ve homeschooled with for years. I don’t know which kid goes with which parent, and I never remember anyone’s difficulties, trials, or victories. Michelle does. She is the very best kind of leader.

Without Michelle, I do not believe our organization would have even survived, much less thrived. I owe my children’s homeschooling journey in part to her. I honestly do not know if we would have made it without her. I’m not good at explaining it, I guess, but she’s so important, you guys. I don’t even know if she knows it. But she is.

When Marissa died, Michelle gave me a wall hanging that says “We do not remember days, we remember moments.” I still have it on my bedroom wall, above my mirror. It’s so true. I don’t remember every day, but I do remember special moments through our homeschooling years, and there are a lot of memories with Michelle. She has made such a difference in my life and in my children’s lives. She is truly a blessing for God in our lives.

I cannot ever thank her enough. But I am grateful. So very grateful.

Thank you, Michelle.

Thirty days of gratefulness – Something in the Room

Today on my facebook memories I saw that I did Thirty Days of Gratefulness posts in November 2017. I think that is a fantastic idea and I’m going to attempt it again. Here’s the image I am using this year, from Hella Mama Things:

Today is Something in the Room.

I am thankful for our TV. I know that sounds a little odd and materialistic, but hear me out. When Ben and I graduated college and got real jobs, we bought a brand new giant TV. It was a big box TV, 36 glorious inches, and it weighed a TON. We bought a big fancy wooden cabinet for it, with plenty of room to hold our VCR and all our VHS cassettes, plus room for a equalizer, our CD player, and cassette player. We had a few more spaces for electronics, so we picked up a record player and a super cool laserdisc player and added those to the cabinet. Oh, and we got the TV at Best Buy or something like that and made payments on it. This was an extremely expensive TV. Probably the most expensive one they had. I know it was the biggest. I remember that they also had 35 inch TVs, but we went for the 36. Just cause.

So, after a few years, plasma TVs became a thing. We did not buy one. Ben said as the technology improved, they would get much cheaper. Then the other TVs came out…was it LED? We didn’t get that either. We didn’t get a smart TV. We just kept waiting. Lenora, Bennett, and Belinda came along and we didn’t get a new TV. We just kept using the big old TV. When over-the-air TV went digital, we had to get converter boxes for the big TV, and also for the one in our bedroom, which I had bought at a garage sale when I was in high school.

The massive TV wasn’t always convenient, and it was also scary when I would catch a child climbing on the cabinet to get something off the top. They would be severely reprimanded and informed that they could DIE if that TV fell on something. I couldn’t even lift it. The sucker was that big.

But flat screens TVs seemed too expensive and too extravagant.

But then the old TV died.

So we bought the flat screen TV that Krislyn had, and didn’t want. And then a remote got thrown and then that TV broke. Like after a week. The flat screen turned out to be not as hardy as the big box tv, which could take flying remotes and also crayon drawings on the screen. So when I saw a listing on craigslist for another massive box TV, for basically nothing, we got that.

I don’t remember the year we finally upgraded, but I do know that we had a box tv for a very long time. A very, very long time. So long that when people would come to our house for the first time, they would comment on it. Like…wow, you still have a box tv? And…I haven’t seen one of those in a while. Stuff like that. But one Christmas we all received Visa gift cards. And we were thinking about what to buy and the suggestion came up to pool all the money and get a flat screen tv. I thought I suggested it but Bennett said recently that it was him, and I’m sure that he’s right. Anyway, we went to Walmart with all our shiny gift cards and had enough to get a fancy smart TV and an adjustable bracket to put it on the wall. And what a TV it was! Biggest screen we’d had yet, and so clear and easy to use. Quick access to Netflix and whatever other apps we had at that time. The kids could finally play their video games for four people instead of trying and failing to play together on a square screen. And no more letterboxed screens. Everything we watched was either letterboxed or cut off on the sides until the new TV. Not a huge deal, but pretty nice to have them gone. We all enjoyed the new TV, and we did that together.

That’s why I’m thankful for it. It has allowed my family to gather together and laugh together, and to cry together. We’ve watched old home movies, old cartoons, and crazy animes. While we watch, we laugh, and talk, and pause the show to look something up, and enjoy each other’s comapny. We don’t always spend a lot of time together, but the TV has been a way that we can connect as a family. I suppose that’s not something to be proud of, is it? Time spent in front of a screen? But we’re not sitting like zombies staring at it. We’re connecting, and sharing snacks and laughter, and just filling the same space…for a little while. With children already grown or almost there, I am thankful for any time we spend together as a family. This TV gives me more of those times. And I am thankful for it.

Final instructions

I got a call this evening from Children’s National. Her procedure is scheduled for 5 pm on Tuesday, and we have to be at the surgery department of the hospital, on the second floor, at 3 pm. She can eat and drink normally the day before, but will on a clear liquid diet after midnight, and nothing red or reddish. So she can have water, broth, gatorade (no reds), gelatin and popsicles (also no reds) and that’s about it. Belinda wasn’t thrilled to hear that. I wish the procedure was scheduled earlier in the day, so she wouldn’t have to wait all day to eat. But, it will gives us time to sightsee on Wednesday morning if we like, and I think she’ll enjoy that. I’ll have to make sure to pack a thermos for carrying around the broth that day. Our time is one hour earlier, so she will be having her procedure at 4 pm in central time.

She has a shirt that says Achalasia on it and it has a rating of one star. Under that it says something like “Very bad, do not recommend.” She says she’s going to wear it all day Tuesday, so she can roll into the hospital with it on.

There’s another family from the facebook group for parents of kids with achalasia that will be at the hospital that day as well. We’re going to attempt a meetup. It’s all loose right now, which is good. I’d like to meet them and let Belinda meet another person with achalasia but I also want to make sure I can focus on her.

Today we received the itemized statement from OU Children’s that shows everything we paid to them for this whole thing. The total they charged for Belinda’s care was $74K. Insurance handled most of that, but we paid our share too. And all of that was for just figuring out the diagnosis. I sent the first page of the statement to NORD. They said they might be able to reimburse us for part of what we paid. We’ll see what happens.

We need to pack. Instead I cleaned house the last two days. Things look a lot nicer here now, making me feel better about leaving it for a few days.