My agent just let me know that she has the submission list ready, and we’re going on sub with The Last Letterboxes on Monday. I’m not sure how I feel. Hopeful, sure, but maybe also afraid to hope too much, for fear of the crash of disappointment that may come?

I want to finish the middle grade novel the month. Preferably this week. That’s pretty fast but I know I’m capable. There’s just a lot of other things happening right now, but when is that not the case?

Homecoming is today. If I get enough writing done to feel satisfied today, I might go watch the parade. We shall see.

I’ve never written that book that starts with the scene in the small-town parade that’s been in my mind for years. I wonder if I ever will.

So I downloaded an app last week, Habitica, and it’s going okay with keeping me more on track and organized. I’m not sure how well it will work long term, but for now, I’m doing okay.

I’ve gotten a lot more caught up on the things I need to do as children’s director at my church. I also have gotten the house a little cleaner and less cluttered. A lot to go on both things, but still. Also doing better with personal hygiene and maintenance, which is admittedly lacking. So for the past six days or so I’ve been flossing daily, remembering to take my medications, and getting more into my writing. I’ve done a creative thing each day and working on my manuscript each day (I did give myself weekends off for that, to avoid burnout). Writing on my lj or here counts as a creative thing, so woohoo.

Anyway, I got the mg manuscript completely plotted out, EXCEPT I don’t know what’s going to happen in one area and it’s annoying and blank. I mean, I know what the kids is going to accomplish but I can’t quite visualize how he’s going to get there. I did stream of consciousness writing about it, I did a walk and talk out loud in my driveway, and I’ve talked to the older three members of my family. Their suggestions were unsatisfying, unfortunately. I did finally think of something that is involved in it, and that’s exciting, but I still don’t have the details and I’d like to get those ironed out before I start. I think that might be what is stopping me from writing. Each of my works in progress have a blank spot and I’m not sure what to do with it, so I stop writing. I don’t know how I did this in the past. Maybe there weren’t any blank spots?

The only other big change is I’m not sleeping as well lately. It’s completely coinciding with this “being productive” thing so I obviously am okay with it but I wonder why. My brain wants to think about things again. And I don’t want to think about things. I want to go with the flow. But I also want to write. It’s a curious thing.

I’m trying something new. It’s the Habitica app. Allegedly it will help me be more productive, actually get things done, and be the person I’ve always wanted to be. So far today I have cleaned for 10 minutes, taken care of my emails, and ate a healthy meal. I’ve also showered, shaved my legs and painted my nails, which is kind of amazing, but I don’t get points for that. I would if I had set those things up as tasks but currently I’m still wanting to figure out the app, and I don’t want to get in too deep and then give up on the whole thing.

I’m also supposed to do 10 minutes of cardio, which is obviously going to be walking but I’ll try to be brisk about it, and practice a new creative technique. I don’t even understand what that means. It sounds like if I was an artist I would try a different brush or way of drawing or something. But I am a writer. I thought about it a while and decided that for me, I’m going to attempt to write a limerick, especially since it’s St. Patrick’s Day. Now, I’ve written limericks before, but not that often, so it is sort of a new technique for me. Also, my monthly goal list includes writing a poem, and this will take care of two birds with one stone.

And then I’m going to go in the kitchen and eat a tuna sandwich, which I think isn’t really eating healthy but also isn’t junk food, so I don’t have to take a positive or negative hit for the app. I’m such a perfectionist that I hope I’m doing this right but I think the idea is it’s supposed to work in a way that works for me, so I guess whatever I say is right is right. As long as I’m honest with it.

So, the limerick. I decided I’d just try to write it here, as part of the blog post. The tricky part is to make it funny without it being too awfully vulgar. Maybe I can write a funny one without any vulgarity. We’ll see.

There once was a lady so hairy,
That some called her legs wrong and scary.
She gave up on shaving
Instead started braiding
And hog tied her worst adversary.

Okay, I’m very happy with this!

Happy New Year!

It’s a few days in, but it’s not to late to say that, I don’t think. Lenora’s birthday is tomorrow, so we’re really not quite through the 12 Days of Christmas, and our holidays officially end in our house after Lenora’s birthday, which conveniently falls on Twelfth Night.

Anyway, not much to say, but I am back at the keyboard and I’m writing. I feel very positive about this year. I think this is the year that I make great strides in my writing again. I’m ready.

This week I was a reporter again for a bit and put together this story about a great kid in my children’s church group who is in need of life-changing specialized surgery. It ran in the Tuttle Times newspaper on Sept. 17, 2020. This is the article in its entirety as submitted to the newspaper.

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Jonas, we’ve got your back!

Local boy needing specialized surgery finds support in the Tuttle community

By Regina Garvie

A Tuttle boy is in need of life-changing surgery – and his friends and family are stepping up to help make that surgery a reality.

Jonas Lee turned twelve last week, but he was only five months old when he was diagnosed with Progressive Infantile Scoliosis Disorder. And over the years, the condition hasn’t gotten better with treatment. It’s worsened.

In 74-94 percent of scoliosis cases diagnosed in infancy, the disorder resolves itself as the child grows. However, cases that don’t resolve on their own quickly become debilitating, pushing on vital organs and causing complications like asthma, irritable bowel syndrome, and other issues.

“It also changes the way the ribs and chest cavity are formed because of the immense stress caused by the spine,” said Jonas’ mother, Hollie Lee. “Infantile scoliosis accounts for less than one percent of all idiopathic scoliosis cases. It is even more rare for it to be progressive.”

Jonas’ scoliosis also deviates from the norm because most cases curve to the left, but not his. It curves to the right.

Jonas began his proper treatment journey with tethered spinal cord surgery by a neurosurgeon at OU Children’s Medical Center when he was 20 months old. Before that, his parents had taken him to multiple orthopedic specialists and pediatricians who all told them to “wait and see,” which they later learned was the worst thing to do with a progressive scoliosis case.

After Jonas recovered from that first spinal cord surgery, he was put into a trunk cast that was changed every six to eight weeks in the operating room.

“Once that orthopedic doctor decided he was ready to put Jonas in a brace instead of a cast, we knew we needed to find a more experienced doctor,” Lee said. “Time is of the essence and his back was not going to fix itself. We were determined to seek the best non-surgical treatment available for him.”

That decision led the family to Shriners Hospitals for Children in Salt Lake City, Utah. From then on, the family traveled to the Salt Lake area multiple times each year for new casts and eventually bracing. In 2017, Jonas’ doctor retired, and he began seeing an orthopedic specialist in Philadelphia, Penn. at Shriners Hospitals for Children, and the Lee family began looking at different options.

“We began preparing our hearts and minds for a new procedure called Vertebral Body Tethering, or VBT,” Lee said. “VBT is a fusionless surgery that preserves the patient’s mobility. At our normal checkup this July – which was delayed two months per Covid – Jonas’ back had progressed while using his brace 23 hours a day. It had gone from around 60 degrees last summer to 76 degrees.”

Because of the dramatic increase in curvature, Jonas is no longer within the parameters for the Shriners Hospital to perform VBT. But instead of giving up hope, his family refocused on another surgery, Anterior Scoliosis Correction (ASC). ASC is very similar to the VBT surgery, with one main difference. With ASC, the doctors will be able to correct all of the rotation in Jonas’ spine while in the operating room.

“The rotation is really what causes scoliosis to progress,” said Lee. “It is very much a 3-D condition, which is mind-boggling when you think about a curvy and twisted spine. There are only a handful of doctors in the entire world trained in ASC.”

Because Jonas’ curve is so large and rotated, there are even fewer doctors that will perform the surgery on him. But a group of doctors in New Jersey have a private practice where they specialize in ASC and train other doctors in their technique. They also regularly publish medical journals on ASC.

According to the doctors’ website, spineandscoliosis.com, in the ASC surgery titanium pedicle screws are placed on the outside of the vertebrae that are causing the scoliosis and a rod-cord is attached to each of the bone screws in the vertebral bodies of the spine. When the implants are tightened, it corrects and straightens the spine. The affected curve(s) show an immediate improvement right after surgery, and continued improvement over time as the spine remodels.

And time is of the essence. “It is very important that Jonas has his surgery sooner than later. With each day, his back continues to curve more and more,” Lee said. “He is very tall and thin so it is hard to see his deformity through his shirt and his brace. When he is not in his brace he is in a great amount of pain. Partly bone pain, but mostly muscle pain. His muscles have never really had to hold his trunk up; that has always been the brace’s job.”

Lee said that they have good medical insurance that will cover the hospital stay and the anesthesiologist, but because the doctors are considered out-of-network and in a private practice, there is no “write off” of fees once the insurance decides how much they will cover.

“A deposit of $35,000 is required up front for the surgeon fees,” she said. “We also had to sign a promissory note stating that no matter what the insurance ends up covering, we will be responsible for whatever amount is remaining and will pay it within four months of the surgery date.”

Despite the huge expense, the Lees have moved forward, and Jonas now has a surgery date of Oct. 14. Due to Covid, they are required to drive there instead of fly, which will be about a 22 hour drive. They will also have to quarantine for two weeks prior to surgery.

Although he has been in treatment for his spine since he was a toddler, Jonas has always been as active as possible. His mother describes him as “an old soul” who loves fishing, music, playing the drums, playing his violin/fiddle, kayaking, water sports, hunting, and camping.

“He’s very adventurous,” she said. “Even when he was a baby he would scream if I brought him inside from being out on the back porch.”

Jonas has been homeschooled since the middle of first grade and started Epic Charter Schools last August.

“Epic has been a perfect fit, because he is still able to go on camping adventures and do his schoolwork,” Lee said.

Jonas is also the pitcher and team captain on his baseball team, wearing his back brace while he plays baseball but hiding it under his jersey. His team won first place in the Canadian Valley Baseball Association in 2017.

Lee also describes her oldest son as very humble. “He would never tell you that he could play “TNT” by ACDC on the drumset at two years old,” she said. “He has always been able to keep perfect time with music.” The Lees are both drummers, so they recognized Jonas’ talent early on. He is now involved with the Oklahoma Homeschool Bands in Oklahoma City, where he plays percussion in band and violin in orchestra.

The Lees have lived in Tuttle for 10 years, after moving here when Jonas was a baby so he could grow up in a small town with a close-knit community like his parents did. “We wanted a home where we could let our kids ride their bikes around the block and grow a big garden,” Lee said. Jonas attended Tuttle Schools for several years before switching to homeschool. He also was involved with Cub Scouts for a time before deciding to focus on baseball. The family attends church at True Oak Fellowship.

Jonas’ dad, Jason Lee says their faith in God has helped them through many trials over the years.

“God has a way of revealing Himself to you in challenging life experiences if you lean on Him and trust Him,” Jason Lee said. “I am confident that in and through Christ is the only way we’ve all gotten through this. We only need to look back and see what God has done for us to know and have confidence in what He will continue to do in Jonas’ life, and the further back you look the farther ahead you can see. Don’t get me wrong, it wasn’t always super difficult. In fact, we have adjusted to a level of normalcy with the brace. But I can remember our church family laying hands on our baby and miraculous surgeries. We could really write a book full of testimonies.”

In addition to walking by faith, the family, including the couple’s other son, eight-year-old Jude, have found solace in the outdoors. “Jason has always fished and hunted and Jonas really enjoys it, so we spend a lot of time camping and just enjoying God’s creation,” Hollie Lee said.

Jude has a different, unrelated rare bone disease, Legg Calve’ Perthes Disease, but both he and Jonas continue to stay active even with their physical issues. However, what they can do is limited. Hollie Lee is looking forward to how the ASC surgery will improve Jonas’ life.

“Jonas has never been allowed to play on skateboards, trampolines, pogo sticks, or anything that causes compression to his spine. Since he has to wear his brace 23 hours a day, he can’t just go jump in the water when it is hot outside,” she said. “The brace straps in the back so he has to have help getting it off and on properly. With him being 12 now, he’s pretty tired of his mom or dad having to help him with it every morning or night.” Jonas wears a different, more aggressive brace while he sleeps. The night brace isn’t designed to wear while standing because of its rigidity. “Jonas is incredibly excited about the idea of not wearing a brace,” Lee said. “The few times he had been allowed by his doctor to sleep without it, he has gotten much better rest.”

Currently the Lees’ fundraising goal is the $35,000 deposit amount for the surgeons. So far, the family has raised around $15,000 through donations on their GoFundMe page, personal checks in the mail, and other means.

The Lees’ church family is also determined to help the Lees make their hopes for Jonas’ health come true. They will be hosting an Indian Taco and Silent Auction Fundraiser this Sunday, Sept. 20 from 11 a.m. until 2 p.m.

Church volunteer Patti Lamle said that there will be multiple ways on Sunday that the community can show their support for the Lee family.

“We will be selling Indian Tacos for $10 each,” Lamle said. “People can drive through to pick up or dine in.” There will also be raffle prizes, silent auction items, and t-shirts for sale, and all proceeds will go towards Jonas’ surgery.

Lamle said that the church hopes God will bless their efforts and provide enough funds to help the family.

“The Lee family is a treasure,” she said. “They serve the Lord with their whole heart. They are a true asset to our community, church, and their friends and family.”

Hollie Lee said that she was grateful for the love being shown by the church and community.

“We are consistently blown away by the support we have from our church family at True Oak Fellowship,” she said. “Our motto is ‘Love God, Love People, Be a Servant’ and our church family has had Jonas’ back since the beginning of this journey. Love, support, and the Holy Spirit is oozing out of the walls at True Oak. I know that probably sounds cheesy, but that is the best way to describe it! Jonas is a bit embarrassed by all of the attention, but he knows it is out of love. He is extremely thankful.”

To help with Jonas’ life-changing surgery, True Oak will be open for the fundraiser this Sunday, Sept. 20 at 20 Worley Creek Drive, 11 a.m. to 2 p.m. Those who cannot attend or would like to give directly can send donations to the family’s GoFundMe page at https://www.gofundme.com/f/jonas-we039ve-got-your-back or by sending Paypal donations directly to the Lees at holliemlee@gmail.com.

BREAKOUT BOX:

We’ve Got Your Back, Jonas! Fundraiser for Jonas Lee

$10 Indian Tacos, Silent Auction, Raffle, T-Shirts

Sunday, Sept. 20, 11 a.m. – 2 p.m.

Drive-through or Dine-in

True Oak Fellowship, 20 Worley Creek Drive, Tuttle

Or donate directly

GoFundMe: at https://www.gofundme.com/f/jonas-we039ve-got-your-back

Paypal: holliemlee@gmail.com

PHOTO CUTLINE: The family of twelve-year-old Jonas Lee (right) is raising $35,000 so he can have the life changing surgery he needs. His parents, Jason and Hollie Lee, and younger brother, Jude, along with Jonas, will all be at True Oak Fellowship in Tuttle this Sunday for an Indian Taco and Silent Auction Fundraiser to help them reach their goal. Jonas was diagnosed with an extremely rare form of scoliosis as a baby and now needs specialized surgery to help him live life to the fullest.

PHOTO CUTLINE: Jonas Lee’s spine now has a 76 degree curve. Without life-changing surgery the curve will continue to worsen as time passes. Jonas’ type and degree of scoliosis is extremely rare. A curve of 10 degrees is present in about three percent of the nation’s population. A curve of 30 degrees is present in about 0.3 percent.

Six months ago, I was volunteering outside of the local community theatre, helping them get ready for their annual haunted house, and I stupidly slipped in mud and hurt myself. It was ironic because there was a wet spot on the concrete, and someone else had commented that it could be a hazard during the haunted house, and I privately mocked them because like that was going to happen, ha ha, and then I stepped on the mud by the wet spot and my flip flop went one direction and my body went the other direction and I basically did a slow slide into the splits and abraded the skin off the front of my shin and on the top of my foot.

I couldn’t get up immediately because it was so confusing and terrible. My niece Krislyn (she’s an adult) turned around and was looking down at me trying to figure out why I was joking around and doing what I was doing, basically breakdancing instead of helping. I pulled my legs around so I was lying on my back with my legs going over this curbing on the edge of the sidewalk, and then she saw the horror that was my leg. She wanted me to get up right then but I needed to lie there for a minute, get my bearings, and reevaluate all of my previous life choices. But after a minute of reflection I realized a fly or something was going to land on all the fresh meat that was my leg, and the idea of a fly coming in for a wee smackerel encouraged me to get to my feet. Krislyn helped me hobble into the theater bathroom. Then she rushed off and got me some bandages while I washed the mud and grit and other random stuff off my leg.

Okay, so this was the only picture I took that day. This was in the bathroom; I’m sitting in a chair and I’d washed the leg and was waiting for bandage delivery. This was October 4, 2019.

Oh, this was also hilarious because it was warm that day, so I had just gotten back from going home and changing when the injury occurred. So I’m wearing those flip flops and a pair of hot pink athletic shorts instead of the sturdy jeans and tennis shoes I started my day in. I sometimes wonder how things would have been different in real shoes and jeans. Then again, I still have the jeans and they would probably not have survived the slow slide, so there’s that. Yeah.

Friends and family said I should go to the doctor, but I didn’t really see the point in giving away my sweet copay over the leg injury. It wasn’t like the doctor was going to sew it closed or anything, right? It actually looked like it could have used a skin graft but I had a feeling my injury would not qualify for such things. So I just used Dermoplast spray and Neosporin ointment and wrapped it up with nonstick gauze pads and a stretchy wrap each day for a couple of days.

It did not occur to me to take another picture of my leg until October 10. My husband Ben had advised letting it dry out to heal, so that’s what I did prior to this pic. It hurt though, and was itchy and looked scary. The hole in my foot was the most troubling.

Here’s the leg on October 12. Internet said I was being stupid and that moist wounds heal best. So I went back to wrapping it. The issue was, it was a ridiculously large injury. It was hard to wrap both my leg and my foot in a way that didn’t allow the bandages to constantly slide off. I tried a lot of different things. I started adding A&D ointment to my routine, since my kids’ doctor used to recommend it for the vitamins. So I’d spray it with the Dermoplast, then do a slurry of Neosporin and A&D, then redo the wraps each day.

I tried gigantic bandaids – cutting off the sticky parts on the center areas of the wound and attaching them to each other using the sides of the bandages.

On October 13, results were unsatisfactory. And I was starting to get itchy and sore. I decided maybe I was allergic to the bandaids.

October 14.

I went back to stretchy wrap and nonstick guaze pads, but since the wrap seemed to make my skin irritated, I found a pair of black tights in my dresser and cut off the toe and thigh, making myself a little sleeve to hold the wrappings on. It worked well because it took care of both the leg and the foot injury at once, and held things on while I slept. I was very proud of this innovation. This was still October 14. I was getting better about taking pictures of the leg. Basically my entire life revolved around the leg at this point.

The leg was still itchy. Was it the nonstick pads? I bought basic gauze instead. I liked that I could wear pants with the sleeve. I used medical tape on the top and bottom of the sleeve to help it not slip around, and it was a lot nicer. I could even put my tennis shoes on that foot again, if I left the laces all the way undone. I could also wear flip flops with the sleeve. I preferred tennis shoes so I could hide the whole thing. People tend to ask questions when you’re wearing part of a pair of black tights on your leg and foot, and I didn’t want to discuss that when I was just trying to pick up some shredded colby jack at the local grocery for taco night.

This is October 15. It was so red and itchy! I figured it was all the healing making it itch but dang I wanted to scratch the wound open. IT WAS SO BAD, Y’ALL. I would put the wrappings on and kind of gently scratch against them.

The sleeve got loose so I cut the other tights leg and made another. And then it got loose and so I cut up some long socks and used those as a sleeve over the tights. Also that red spot on my knee is when I fell down at Hurricane Harbor in St. Louis summer 2019, har de har har.

October 16.

Around this time, I put on the A&D ointment and the Neosporin and I realized that it was not itching, it was BURNING and I needed to get it off IMMEDIATELY and so I ran to the bathroom and washed my leg while tears ran down my face and that’s when I concluded that all the wraps had been innocent the entire time, and I was apparently allergic to either A&D ointment or Neosporin and although I knew I could drop one or the other and determine which it was I didn’t care to find out at that point and I stopped using them both. Internet searches showed it could be either one, so forget that business.

October 17.

From there I moved to a combination of this silver gel solution I bought on sale a while back, plus frankincense oil and lavender oil. I still wanted it to be moist and disinfected but A&D and Neosporin could get wrecked. So I went crunchy, yes I did. And it didn’t burn and itch, hallelujah! And the angry redness started to recede. And I sort of wondered how I could have been so stupid to have not noticed I was having an allergic reaction earlier.

October 20.

October 21.

I started working at the local dance studio, in the office, and I elevated my leg cause it still hurt to have it down for a long time. Like a throbbing pain. I was also volunteering at the haunted house, but I was able to sit most of the time, even though when I had to walk it was obvious I was injured. I kept it hidden under jeans at the haunted house and no one said anything. At home I stayed on the couch most of the time cause that felt better to it. This was taken October 21 and I had stopped covering it at this point, but still kept the oils and silver solution on it regularly. I still put a bandage on the foot when I needed to wear my tennis shoes cause the shoe hurt the sore if I didn’t.

October 22.

October 23.

In my daughter Belinda’s bedroom during a renovation. A lot of the hard scabby things are gone but the foot one was still there and a couple others. I still was limping and keeping my leg up.

October 25.

October 27. So much redness gone!

October 28.

October 29. Top scab started coming off.

I made a HUGE mistake and picked at that top scab and it bled a little. I had good results with some light picking before this point, but drawing blood made me get away from the injury quickly. It was nice having that scab off, but I didn’t want a new one.

October 30. All that was left was the big foot scab. I took this picture next to a centerpiece I made last year, for beauty reasons.

I really like how in this picture you can see how much time has elapsed since the injury because my toenail polish was fresh when I fell down and you can just barely see how the nail has grown since then.

November 2. With Salty.

The foot scab started coming loose. I didn’t want to make it bleed but I also didn’t want to rip it off. I hated this scab the most because it made walking painful. I was ready for it to go. So I gently messed with it.

And then it came off.

And then I put it back on my foot so I could take a picture of it next to the healing wound. For science.

And then took some pictures of my new, non scabby leg and foot. So nice and healed, right? But I was EXCITED!

I started using Mederma for scars that night.

November 4. One month anniversary of the foot injury. I think it looks great. Others who see it are horrified, lol.

November 11. This one is kind of cool because you can see how the knee injury from around June looks so much different than the injuries from October. I was putting Mederma on everything each night.

November 17. My niece Sarah’s birthday. Leg is looking NICE. We went out of town for Thanksgiving a little after this and I don’t think I was limping any more at that point. By this time Belinda had broken her foot and there wasn’t time for two people to have walking difficulties in the family, lol.

December 4. Thanksgiving has passed and we’re getting ready for Christmas. I was disappointed that the leg didn’t look that much better than the last picture a few weeks ago. I started doing Mederma a lot more sporadic here because it was boring.

Foot injury was much less dented, which is great.

February 6.

April 4. I meant to do these every month. But I forgot. And it was a drag getting the pictures off my phone and onto the computer. But I did it. And now here is my leg today. It is SO MUCH BETTER! It is my six month injury-a-versary, and I am so happy that it is so good. When it was at the worst, during the original injury and the allergy, I wondered if it would ever be healed again! When I had to walk on it and try to look normal so people wouldn’t ask, I felt like it would never be better. But hooray it is!

And if we weren’t in quarantine, I might have continued to not make this leg post that I intended to make for the last three months. But now I’ve done it and all is well. So, silver lining.
From this…to this. <3