RV Road Trip!

For James' 12th birthday, we pulled out all the stops. It helps that his wishes aligned very, very well with the wishes of others in our family. In other words, he chose wisely. One of his requests was that we spend Fall Break on an RV trip to visit the largest car museum in the United States: The Gilmore Car Musem. That may sound familiar because we drove out to visit it in February of this year. Alex, Matthew and I were on board with it. Bobby's energy level has been unpredictable, so he stayed home, and Robert stayed home because that is honestly where he loves to be more than anywhere else: at home with no siblings.

The RV part of the trip was great! We rented one through Outdoorsy, which is sort of like AirBnB or VRBO for motor homes. The owners showed us how to use it and we were on our way! That was hands-down the best camping I've ever experienced. Glamping. There was a real kitchen and fridge, real beds, a furnace, a clean and private bathroom, and a hard shell around us to protect us from the elements. There was a lot of rain our first night. The wind rocked the RV back and forth. Thankfully, the two younger boys slept through it all. Unfortunately, the dramatic shift in air pressure triggered a migraine for Alex. Not a fun night for either of us.

One AMAZING thing about the RV trip was having a kitchen and bathroom with us at all times. My kids don't have adventurous pallets. We really do best with familiar foods in familiar forms at consistent times. And with Matthew being vegetarian, the only thing he eats at restaurants these days is cheese pizza, mac and cheese, or grilled cheese. He's pretty bored of all that. So, having a kitchen was perfect. There was a moment at Niagara Falls when one kid really had to use the bathroom and the other kid was starving. We were pretty much ready to leave anyway. We hopped back into the RV and I whipped up a batch of bean nachos before we left the parking lot. 

There are a few things about this trip that I hope never to repeat:

• No more working vacations: all three kids were missing school to come on this trip. Yeah, I didn't plan that properly. Initially, I thought all schools were on Fall Break that week, but it turns out Alex's online college courses and the boys' school did NOT take a Fall Break that week. So, everyone had work to do. If this had been last year with both little boys in elementary school at Yankee Ridge, we would have had 3 worksheets and a couple of coloring pages for each of them. Easy peasy! No such luck this time. James had a genealogy poster project (in French!), Matthew had chapters to read and questions to answer, James had prime factorization and LCM and GCF, Matthew had equivalent fractions and long division and so much 2 digit multiplication. Through Google Classroom, James was able to do almost all of the classwork the same day his classmates did it, then the homework on top of that. We spent hours and hours on school work that the boys just didn't want to do and just didn't have the attention span for. Schoolwork at school and homework at home from now on. No more working vacations. Ugh.
• No more solo driving the RV. I was alone in the front seat while the kids slept, snacked, listened to stories, read, and snuggled in blankets. Alex spent 90% of the vacation in the back bedroom. If we had been in the van, Alex would have sat up front with me and helped with the boys' needs. 
• I'd rather not drive the RV through town. It wasn't too unwieldy, but a smaller car would have been nice for the outings. 
• The longest we stayed in one campsite was 2 nights. That's a lot of packing and unpacking, hooking and unhooking. I'll stay longer at campsites next time.
• I won't give up the master bedroom to any of the kids next time, either. I hoped Alex would be a happier, more helpful co-pilot if he had a place to call his own. It turns out I also need a place to call my own! And if I'm going to do all the driving, meal prep, planning, navigating, and paying, I'm going to be sleeping in a bigger, softer bed with a bedroom door. 

Now for a few photos:

The RV! Each kid is pointing roughly to where they slept in the van.

Horseshoe Falls, Niagara City, Ontario, Canada

Matthew demonstrating how loud the falls were. We were in the tunnels behind the falls and this was one of the openings.

Gilmore Car Museum. James is too cool to smile. Matthew's all about the laughs.

Here, we're waiting at a food truck for the best poutine in town (according to the reviews). Poutine is a dish most popular in Quebec, but found all over Canada. It's a plate of hot French fries with cheese curds sprinkled on top and melting together, then topped with a generous scoop of mushroom or beef gravy. Alex and I thought it was spectacular. The little boys opted for plain hand cut fries, which were also sensational.

More waiting. Good food takes time, man.

Alex chilling in the RV's master bedroom.

This is the view of the RV interior from the Master Bedroom. Matthew is up in the loft playing video games after his homework was done. James is at the kitchen table still working. You can't see much of him because he's hiding from the camera.

Here, he cooperated with a photo. The loft curtains are drawn so Matthew's video games are less of a distraction. 

Prime factorization.

James' family tree in French.

Matthew meets The Fonz at the Gilmore Car Museum. He and James have a friend named Alfonso who goes by "Fonzy."

Three of us in a ferris wheel ride at the Air Zoo Museum near Kalamazoo, MI. Matthew was initially terrified at the notion, but we gently coaxed him on. He had a great time! I love Prozac. It makes the world so much more accessible to Matthew. 

Alex and I tried out the Paratrooper Ride at the Air Zoo. The bench bounces up and down, giving you that crazy stomach feeling. Matthew took the picture. James didn't feel up to the rides today. Traveling can make him nauseous sometimes.

James Fun

Last week, James turned to me after school and said, "I'm actually catching up. I kinda like school now!" 

*huge sigh of relief* I gave him a big, big hug. 

With his 12th birthday, James asked for a chance to get together with some friends from 5th grade. Since James NEVER asks to hang out with friends, I said, "Heck yeah, let's make this happen!"

We invited all of his friends from newspaper club last year. Most of them attend Urbana Middle School except the two kids Matthew's age who were relocated to a different elementary school when our neighborhood school was converted to a dual-language-only facility. Matthew would have gone there, too.

The kids compared schools and classes to each other. The middle school stories were sobering, and not very surprising. We heard about fights in the halls ending up with kids and/or teachers needing medical attention. We heard about math classes so disrupted by disrespectful kids that they had to reorganize the classes all over again. They told us about boys' bathrooms with no doors on the stalls, garbage on the floor, and broken sinks.

James didn't feel so bad about his middle school complaints after that. NGS gives a lot of homework, yeah, but he's also in an environment that supports learning at that pace. 

James found some fossils in the rock bed by the playground today. He used to spend most of his recess time doing that in elementary school.

James was out sick from school three days this week. We were able to do most of his classwork at home, though, thanks to his teachers doing a lot of assignments online. Everything is online now. But even with all the work at home done earlier, James still needed 5 hours to completely finish the homework he had missed over 3 days. He was cheerful about it, though, and got more confident the further along we went. It gave me hope for next week.

Next week, inspired by another one of James' requests that don't often come, we'll be renting an RV and traveling to Niagara Falls. We'll stop along the way at several car and aerospace museums, and take a day to explore a bit of Ontario, Canada, on our way back. By "we", I mean me, Alex, James, and Matthew. The two Roberts will stay home to keep working and enjoy the blissful silence. RVs are all new to us. Can't wait!

One Heck of a Week (Medically Speaking)

As of this writing, 3 of our kids are on 3 different antibiotics for 3 different conditions.

At the end of last week, I took James to Convenient Care for two very swollen, painful, and oozy big toenails. He was prescribed antibiotics to knock back the infection and given a referral to Podiatry for ingrown toenails. 

Then, this Monday, I took Matthew to Convenient Care for lingering breathing issues, fever, and ear pain: pneumonia, aggravated by asthma. He was prescribed antibiotics for the pneumonia, as well as oral corticosteroids and nebulized albuterol for the asthma. 

A few hours after that, I took Robert to Convenient Care for a different set of symptoms that had been growing steadily worse for 3 days. We're waiting on a lab culture, but in the meantime, the doc prescribed some pretty hefty antibiotics to cover all the bases. 

I can't even begin to add up what this might have cost without health insurance. 

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James and I met with the podiatrist today. The doctor confirmed the diagnosis of two very deep-set ingrown toenails. James started asking questions about the treatment and discovered it involved numbing the skin, injecting an anesthetic, and trimming the side of the nail almost to the bottom. He was having NONE of that. No way. It didn't matter to him that his pain would stop almost instantly after the procedure. He was not swayed by promises of not being able to feel the injection or the trimming. Even when reminded of the immense pain and suffering he experiences every time someone bonks either of his toes, he would not be convinced.

I was very, very angry at James, but there was little I could do to force the issue. 

He's too old/big for us to hold him down the whole time.

He's too terrified of needles to be rational.

It would have taken only 20 minutes to fix this problem forever. Forever! James would rather endure weeks and weeks of continuous pain to avoid that 20 minutes. He's convinced that he can grow back his toenails just fine without surgical help. The doctor advised against that, indicating the antibiotics are working now to control the infection, but if we don't remove the offending nail bits before James finishes this antibiotics regimen, the infection will almost certainly come back. Toe infections can turn nasty pretty quickly, he said. James still would not consent. He wouldn't even let me touch him. 

I used my calmest, firmest voice to tell James that putting off the procedure was not the right thing to do. He buried his face in his hands and started to cry. But he did not yield.

So, we left the doctor's office. Neither one of us had anything more to say. James walked to the car quickly with his head down. I was following several steps behind trying not to cry. 

When James's toenails get nasty again, we'll need to schedule the procedure. I'm hopeful he'll submit to the in-office version with a local anesthetic. If not, we'll have no choice but to schedule an official surgery with an IV drip and an anesthesiologist who can put him to sleep safely. 

Unbelievable. 

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In other medical news, Bobby's intermittent chest pain and regular fatigue continue undiagnosed. His doctor prescribed nitroglycerin tablets as needed to dilate blood vessels. Bobby says they help alleviate the chest pain but they also make him feel weird. 

My new medicine arrived today. It comes in an auto-injector like those epi pens for allergic reactions. Just press and hold until you hear the click. I psyched myself up, "It'll be fine. It's just like any other shot." Then I pressed the button. The needle was exactly what I expected. The medicine itself, however, felt like flaming hot lava swords oozing and expanding slowly into my thigh. It was a much larger volume than I had prepared for, and took far longer to inject than I thought I had in me. Not cool, man. Totally not cool, but I'll take that over a blistering rash any day. And I will. Every 2 weeks.

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And here's the best medical news of all:

Anti-anxiety meds have completely transformed Matthew. Instead of a shrinking, panicky kid with occassional moments of peaceful happiness, we now have a generally happy kid with occasional moments of manageable stress.

Every single day this week, I've heard the other kids do or say something that would normally trigger a panic attack in Matthew. Do you know what happened instead? Matthew laughed at the joke or asked them to stop or kept working on his homework. I just stood there stunned with my mouth wide open. What?! 

Matthew has said things this week that I never thought I'd ever hear from him:

"I'm not done yet, but I can just work on it tomorrow."

"Mom, leave the car door open and back out of the garage slowly so I can run down the sidewalk and take a flying leap into my seat!"

And there are things he hasn't said even once that are just as miraculous:

"Am I going to be late?"

"Will there be rain tonight?"

"I'm really scared and I don't know why."

"I'm really sad and I don't know why."

We've had no paralyzing meltdowns. No profuse apologies or self-shaming following every minor offense he's given. 

He comes up with his OWN plans to overcome obstacles. And he does it intuitively and nonchalantly, without coaching from any of us. 

Like I told Bobby, we've never really had a chance to separate Matthew's anxiety from Matthew's personality. But now, with the anxiety toned down, I finally see this funny, friendly, confident, resilient, resourceful, self-directed and kinda sneaky kid. He's a lot more like James than I originally thought 😉 

I'm declaring it a miracle. I want to thank those who have been praying for us and putting our family on prayer rolls/lists. It's been a crazy couple of months with all sorts of medical and mental issues, but I feel carried. Your prayers have made us more buoyant and capable. Our family is closer to each other, too. We can laugh together again. There's room to breathe. And while we're still in the thick of many things, there is an underlying tone of patience and longsuffering around here. I credit your faith and prayers for these tender mercies. 

Growing Pains

Hi there! It's been a pretty good week. Our family's most recent stressors and struggles have shifted, and several have improved. I'm calling them growing pains. I'll share them in the random order they occur to me:

My rash:

Sooooooo, the biopsy and blood test results came back. It's very unlikely the rash was caused by an allergic reaction to any medication. They found antibodies in my blood that indicate I have a rare autoimmune blistering disorder. My immune system attacks some of the proteins that connect the top layer of skin to the one right below it. It's a condition that usually shows up in folks older than 60. How crazy is that?! Way out of left field. Yes, it's a chronic condition that will need to be managed for the rest of my life. Yes, I'll be susceptible to flare ups and side effects from medications (typically steroids and immunosuppressants). No, it's not life-threatening. No, I'm not terribly concerned about it. Any more. The initial news was a shocker. But now, after some time to get used to the idea, and seeing this rash subside with treatment, I'm feeling okay about it. Just gonna add it to the pot simmering on the back burner. In the meantime, I feel 99% normal. I'm back to exercising, praying and reading scriptures, connecting with friends, laughing with my kids, and feeling more resilient. The 1% that's not quite "back to normal" is the low grade tingling-itchiness that comes and goes, especially in my hands. The feeling itself isn't as bothersome as the reminder that things have changed for me. 

Here's what the rash looked like in all its glory. Imagine this from scalp to fingertips to knees, but not on my face for some reason. It felt like a burning fever, itched like crazy, and peeled like a horrible sunburn. 

One month later, I've got this: skin that flakes and shady splotches where the rash was.

This peeling on my hands reminds me of when I was a child and my hands would peel a couple times a year. Usually spring and fall. 

Matthew's Anxiety:

He's a new kid with this new school. He suddenly has a sense of humor. He excitedly talks about what they did in class that day. He's loved his afterschool science class WITHOUT James. And now he's talking about joining the archery team, even as James shows no interest in it. Seriously, folks, you have no idea how revolutionary this is. Matthew still has anxiety episodes (hoo boy), and bedtime is still hard (better, but still a rough transition for him), and we are still very careful every day about our tone, our word choice, our scheduling pace, and our routines just to keep Matthew on an even emotional keel. That said, he's more delightful and more delighted about life than ever before. That's significant. We met with a provider about the possibility of anti-anxiety meds. She was concerned that his anxiety isn't a constant, underlying fear (nausea, stomachaches, anxious behaviors that draw attention from peers and teachers, trouble staying asleep) that would obviously be improved with medication. His anxiety is strong and over the top, but it's situational. It comes and goes. It's only triggered by specific things. She also noted that his physical/verbal tics and his mild-moderate compulsion to balance sensory inputs are more typical of OCD than anxiety. None of this was new to us, but I feel better having another perspective. She consulted with other psych folks and decided that it would be okay to try a very low dose, entry-level SSRI to see how that affects things. I'm okay with that. 

Bobby's fatigue:

I don't think I've mentioned this on the blog yet. Bobby has recently had some intermittent symptoms that we haven't yet been able to diagnose. He gets episodes of chest tightness, fatigue, and GI upset. One day he'll be fine and going to work, and the next day he'll be too exhausted and crummy-feeling to do much more than the bare minimum. He's had CT scans, blood tests, and a heart stress test. Everything so far has checked out with gold stars and two thumbs up. He gets a temporary heart monitor this week.

James fitting in:

He's done a little better the last couple of weeks. He's had fewer anxious/depressive episodes. His toes are really painful, though. He tends to clip his nails very, very short and apparently gave himself two ingrown toenails. His instinct was to cut the nails even shorter to relieve the pain. It worked the first few times. Poor guy. The only thing to do now is watch for infection and wait for it to grow back out. Not fun. As for school, we're all getting used to doing homework regularly and learning where to look for assignments on Google Classroom. It's a lot more work than his last school, but the more he does it, the more confident he gets that he can do it. He's done several very difficult things this week: talking to a teacher about a late project, studying for a French quiz (the first studying he's EVER done), and buckling down on Saturday to finish his weekend homework. There's so much more to learn in middle school than what you find in textbooks! I'm so proud of him growing in these other ways.

Other bits:

--The garage freezer wasn't keeping the temp low enough and everything was half-thawed by the time I found it. I shifted things around and managed to save it all. 

--Our washing machine was finally getting unreliable enough that we needed to replace it. Getting a new one was easy. Getting it successfully installed was an exercise in patience. The new washer wasn't the same width as the old one (why aren't these things standardized??), so we had to rearrange some things, and replace a couple cabinets. I was able to install the first one on my own, but the 2nd one has me intimidated. How can I possibly line it up straight with the first one??

--Alex got deep into a woodworking project. He was creating a wooden model of a car (sort of) for his German Language teacher. He learned how to use an electric sander, power drill, dremel, and wood putty. 

-- Here is Alex's quilt top:

-- I found a new home for my road bike! I purchased a new one a couple months ago but didn't allow myself to use it until I had re-homed the first. It's hard to resell bikes. There are SO many variables, even after you've picked which type of bike and which size you're looking for. I got supremely lucky that 1) a young woman in the ward was looking to start road cycling, 2) she was my size, and 3) her dad was experienced enough in road cycling to appreciate this bike's potential for his daughter. I was thrilled to give it to them and they were thrilled to get it. Yay!

This Worked...

...for now.

Matthew's paralyzing meltdowns seem to have lessened significantly over the last couple of weeks. He's a totally new kid: confident, funny, kinda snarky in playful ways, and about 50% more resilient to external stressors. That last one is especially important at home. When triggered by a distressing event/topic, Matthew has had smaller, less distressing anxiety episodes that we can talk through before they explode out of control.

One part of this change is clearly school. He finally feels safe! 

Another part of the change stems from something he discovered about himself. Towards the end of one meltdown last week, he recognized that routines were very, very important to his feeling secure and happy. He suggested we adopt a more structured bedtime routine to help him calm down for sleep. 

I raised an eyebrow.

"That sounds like a great idea. Let's try that," I replied. Then asked, "What happens if you're scared or sad during the routine and don't want to finish it?"

*deep breath* "Then remind me of this conversation and I'll finish the routine without complaining."

Well, heck! Sign me up. I immediately set to work on a very specific bedtime routine that addressed the most common problems we had been experiencing. One major trigger for Matthew is feeling rushed. Another big hangup is feeling like he's disappointed you or done something wrong. Even saying the words, "You haven't done anything wrong," suddenly puts the possibility of error into his head and can paralyze him for a short period of time. 

So, we always start on time, but the rest of the times are flexible. The order of the steps is the important part. One thing at a time. And it's very important not to skip any steps if we're a little later than usual or if the adults are feeling done. That's rushing. And that's him feeling like he's let you down. 

I can tell you that it's been in place 1 week and Matthew has managed to fall asleep on his own every night. Before this week, he had me or Bobby in there pretty much every night because he was too scared to fall asleep on his own. 

Even tonight, when a random fit of unnamed anxiety crippled him at 7:30pm (where do these come from?!), he gathered himself together after the worst had passed and we just moved on to the next step on the list. He needed one reminder a little later to give the next-to-last step the full 20 minutes, but fell asleep soon after. 

This has been a miracle. I just wanted to record it here as proof that something has made a difference. For now. Who knows how long it will last, but I'll gladly take it any time. 

The routine: