Stuck at the Pity Party

I usually try not to go more than a week or so without a post, but it's been tough to come here and write lately.  Everything feels challenging and overwhelming, and my anxiety has been on high alert the whole time.  Most of the time I feel like I should just spare anyone else the frustration.

The week started off quiet enough, I guess.  The boys and I had off on Monday.  We got a bunch of snow overnight, probably about six inches.  But after shoveling all of that, I was pretty tired and laid low most of the day.  My lower back in particular was really sore.  My back has been bothering me more lately, and even though the snow wasn't heavy, it made my back really tired and sore.  Jacob had off on Tuesday due to the extra cold weather.  I finally had my chiropractor appointment I had to postpone the previous Friday, and whatever she did really did help.  Wednesday both boys got off due to the sub-zero wind chills.  I had to work because I had a big team meeting and a fun event after.  Craig worked part of the day but took Jacob for his X-ray in the afternoon.  It was a bit of a debacle--first they went to the wrong place and then there was no order on file once they got to the right one.  I was trying to fix it from my work event at a golf simulator place, and they finally got in for the X-ray just in time.  I missed half the fun, but it was important to get that done.  We got the results within a couple hours, but it was tough to decode what it said.  I could at least figure out that there was no kidney stone.  So we officially don't know what happened there--did he pass it?  Was it something weird about the X-ray?  Was there some sort of calcification in the poop in his system?  We may never know.  He did have some pretty severe kidney pain twice on Sunday but nothing came of it that we could tell.  After discussing the results with the GI the following day, she suggested Jacob do a cleanout this weekend--14 capfuls of Miralax in 64 oz. of water.  Yippee.

In the meantime, I was having similar issues myself.  I wasn't sure if taking ibuprofen for the back soreness backed me up, but it sure seemed like it because I was barely going and when I did it wasn't much.  I was having little gas pains too.  Miralax twice a day for a couple days did nothing, so late in the week I took a different type of laxative that started working at 5am Friday morning.  I do think it helped because I realized that bathroom trip #3 or 4 midday had stuff from my previous day's lunch, so things were definitely taking longer to make it through than I'd expect.  I'm still not entirely back to normal on that front, but I think it helped.

I'm honestly still dealing with a lot of anxiety about my own health.  Any of the things I've had going on wouldn't be an issue by themselves, but together...my brain goes to weird places.  Back pain, possible GI issues, possible weight loss that I haven't been trying to do...it's not ideal.  The weight loss could be because I'm not craving any of the snacks in our house (or is that loss of appetite?) and I keep falling asleep in the evenings before I snack.  But maybe when I lost a couple pounds during Walktober, it wasn't actually the walking?  I'm down about 4-5 pounds since early October, and I should really be going the other way as I head toward menopause.  I know I've had a ton of stress and I'm back to not sleeping great, in part because of the anxiety and in part because of my back and trying to sleep in different positions, so my appetite's been up and down more than it used to be.  But who knows.  The aches and pains could be early menopause stuff, too, I guess.  There's a lot of explanations but the circumstantial evidence is...troubling.  It's enough that I finally filled out my colonoscopy paperwork that I've been ignoring for longer than I should.

And on top of Jacob's stuff and knowing that he needs to start weaning off his reflux meds so he can get his endoscopy, which could find God knows what, it's all been a lot.  I'm definitely struggling to see the light at the end of the tunnel right now.  

His cleanout has been interesting.  The amount of fluid was too much for him so he didn't quite get it all down, but it took hours for anything to happen.  That tells me there was likely a lot to loosen up and get moving.  Once it did he went pretty steadily throughout the rest of the day, but it's hard to tell if that was everything.  I'm really hoping it all helps his various other issues--the reflux, the stomach pains, the back pains.  He said he was having a lot of back pain throughout the cleanout, so I'm hoping it's all related (and honestly might explain mine too), but every little thing makes me crazy.  He's also having a minor eye issue we probably need to check on too.  It's just endless at this point.

Oh, and then on Friday he went to practice and took some shots after.  He came out to the car upset and convinced he gave himself a stress fracture.  He had one shot that felt a little funky, but he assumed he just overdid it.  He should be relatively safe at this point, but there was one spot where the bone felt really sore.  He was driving me nuts freaking out about it and mentally beating himself up, and finally Craig told him to come in to the arena during Knighthawks practice.  He could have someone look at it and use the cold tub, just to put his mind at ease for the night.  Thankfully he got some reassurance from his trainer via phone and felt quite a bit better Saturday, but his panic on Friday was real.  He was terrified he set himself up for another 6-8 week delay, and that's his worst nightmare right now.  It's so hard to deal with those anxiety spikes.

And now I'm sitting here with the weekend almost over, my back is still funky, and the Bills got screwed yet again in their playoff game against Kansas City.  Even among so many bigger things to worry about, it's still gutting.

So, as you can see, all I'm doing here is complaining and giving in to the anxiety, and that's why I didn't want to write.  But I always try to document this stuff, both for my own record keeping and because I try to make this an honest account of what's happening.  There's just no getting around the struggle right now, though.  The usual January drought of interesting things going on (heck, I've hardly taken any pictures at all, of anything, let alone doing anything interesting) hit at just the wrong time to coincide with this rough patch, so things are extra bleak right now.  Sorry.  I really hope I have happier content soon. 

One Day, One Task, One Appointment at Time

Oh, this week.  Heading into it, it already felt like a lot.  And it was.  Between three medical appointments for Jacob, two of his team's basketball games, and as many rehab/treatment appointments as he could cram in, it's been a lot.  Craig is also left Friday morning for another work road trip, I've been fighting off some sort of virus, and Jacob was barely able to get up and get to school this week for a combination of reasons.  

I had a rather productive last weekend myself, at least.  I took down a few smaller things plus the small Christmas tree on Thursday night, which gave me a good head start heading into the weekend.  It also allowed me to move around my dining room a bit before I got into the massive de-Christmasing effort.  There always seems to be some sort of reorganization project this time of year, and while there wasn't a toy or bedroom one this time around, we did need some help in our dining room.  Multiple attempts at giving Jacob a snack section in a cabinet there hadn't been working--the cabinet overflowed to an open shelf and later the floor, and then he stopped bothering with the cabinet altogether, leaving a massive waste of food behind since he never wanted to bother opening it to see the older/open foods inside.  When I needed the shelf during Christmas for decorations, the floor situation got worse and evolved to a paper garbage bag perpetually holding Jacob's most recent snacks.  I constantly had to walk around it and his drinks and it looked terrible.  None of it was working for anyone, so even though it's not particularly pretty, I brought up our old microwave cart from the depths of the crawl space.  I put his bottled water and Gatorade in the cabinet (since that stuff lasts longer and can't be found elsewhere, so there's nothing to forget), loaded up the middle shelf with a bunch of the boxed snacks, and put a bin on top with a lot of bagged snacks, plus his Liquid IV drink mixes, giant box of fruit snacks, and other smaller items.  It's not exactly aesthetic, but it is SO much better than the mess it was and I no longer need to walk around anything!  And if it works better, maybe I can get something prettier in that spot later.  It takes my anxiety down a notch or two just having that cleaned up.

We went to Jacob's school game on Friday night because he had sort of taken over "game presentation" with big plans for the warm-up music and introductions.  He wanted to bring down the lights for intros, play some different music, and even use a spotlight (or at least a bright light the principal uses for hunting).  We wanted to see how it all played out because he'd been talking about it and planning all week, and while it wasn't up to his standards in the end, it was fun and different.  It gave him something to keep him focused and engaged, which feels really important right now.  That said, he's a bit frustrated with his team, not just because they're still not playing well, but also because they just don't seem dedicated and one kid was hell-bent on coming to practice even though he was really sick.  Jacob is so anxious about catching anything that might set him back in his recovery and rehab, so that made him crazy.  He's just so over the attitudes and the disrespect that he pretty much doesn't even want to be involved anymore.  But he's hanging in there...for now.

Even though we didn't get home until later on Friday, I pressed forward on getting the big Christmas tree down.  Putting away hundreds of ornaments, setting aside next year's theme ornaments, and reorganizing/rewrapping the ones I didn't use is always a task, so it took me a while, but I finished right around midnight.  I had to leave the tree standing overnight, though.  Saturday morning I still had to mess around with the lights a bit because some of them seem to be going a bit wonky and I was trying to see if replacing the bulbs would fix the worst of the issues.  I'm still not sure, but it seems like if I avoid the brightest light setting, most of the issues aren't that noticeable regardless.  It's annoying, but if I keep that part of the tree in the back, it's still workable for now.  But for a tree I paid a lot for not that long ago, it still stinks.  

Once the tree was stored away, I spent the rest of Saturday working through the decorations and getting them packed up.  It's always a bit of a process, but things weren't fitting right this year and I was getting frustrated.  However, I had to stop in time for the Knighthawks game that night, since I hadn't been to one all year.  Carter and I decided to go, and Jacob opted to stay home.  It ended up being a pretty exciting, very high scoring game, but unfortunately the Knighthawks lost in one of the most heartbreaking ways possible.  They came back from four goals down to tie it with only a minute or so left, but ended up losing with less than a TENTH of a second left.  The ball just crossed the goal line before time expired and even on replay it was hard to know for sure.  It was pretty heartbreaking to have no way to come back again after such a valiant effort.  

Between Saturday night and the rest of Sunday, I did a lot of vacuuming (mostly of fake pine needles), finished my winter decorating, did one more round of furniture moving, and finally some other final clean-up and organizing to get the house back in shape.  It felt so good to get done, and yes, the house is a bit more sparse, but it also feels nice.  I motivated myself by getting a cute new decoration for $10 at Aldi.  It's a little white tree, maybe 14 inches tall, that has white lights and came with nine heart ornaments.  I agonized over the three different styles--red and pink conversation hearts, pastel conversation hearts, and red and silver glitter hearts.  The conversation versions were cute but I decided the glitter was a bit more classic, and I decided during my undecorating that I could use the tiny gold ornaments I hang on our fake ficus with the silver hearts for now (and have the adjacent fireplace mantel use a gold, silver, and white theme too), and replace the gold with the red when the Valentine's stuff comes out.  It worked perfectly and makes me happy during this dreary time of year.  The house definitely feels a bit more peaceful and streamlined, or maybe that's just because I'm no longer walking around Jacob's food and we have one more chair back in our living room.

Oh, and did I mention how much heavier it made last week to watch the horrific wildfires tearing through Los Angeles?  They started on Tuesday, which was my dad's birthday, and almost immediately started decimating large residential areas.  More popped up, more areas burned, a friend of mine was evacuated, and my social media feeds were just inundated with horrifying footage of the firestorms and subsequent endless rows of charred neighborhoods.  Over 12,000 structures have burned since then.  It's unthinkable, and all classes of people have been affected, from dozens of celebrities to thousands of normal people.  Of course, a lot of those normal people with very normal houses are atypical in that their places were million-dollar homes because of how real estate runs out there.  It's even sadder that so many of them had their fire insurance canceled recently because insurers don't want to cover those fire-prone areas anymore.  That made them either underinsured or unable to afford to live in their house when it's properly insured.  It's absolutely tragic and will be completely life-changing for so many people in the absolute worst way.  Entire communities were destroyed, street after street, store after store, school after school.  It will likely take years to rebuild, if they even can since so many people won't be able to afford to build or live there after this.  It's absolutely mind-blowing and has been a constant reminder that our cold weather and our problems are actually pretty minimal in comparison.

Anyway, while Craig and I had reasons to be tired on Monday, it wasn't really a busy weekend for the boys and yet Monday was a tough re-entry.  Everyone was tired.  Craig was supposed to go to Buffalo after work to see his mom take the oath as town supervisor, but unfortunately the lake effect was hitting the area really bad so he opted to stay home and watch it online.  She's been town clerk for over 20 years and the supervisor resigned, so she got nominated.  Craig's brother, who was her deputy, got elevated to her town clerk position.  They'll both have to run in the fall if they want to get re-elected, though.  It was nice to watch it all online and I'm super proud of her for being one of the good politicians who everyone across all parties respects.  It's pretty amazing and is a testament to her character, especially in this political climate.

Just before that I had to take Jacob to his much-anticipated sports psychologist appointment.  He really appreciates those and we spent a lot of time talking through what he should focus on.  We boiled it down to struggling with anxiety in general - both of the medical kind, related to anything that could sidetrack his recovery, and of the school kind.  As I mentioned, he's worried about catching all of the viruses floating around his school and team, and he's just generally annoyed by his classes, his teachers, and the general academic vibe at his school.  We're also really struggling with the limitations he'd have to switch schools, and that's causing even more anxiety because we as a family are very divided on what is feasible and what isn't.  He did seem to feel better about a lot after that, but of course within a couple days we were back to a lot of really disruptive anxiety to the point he's been more than a half hour late to school a few days this week.  It's been a LOT.  He's tired from still not sleeping enough--mostly his fault at this point by staying up too late, but all of the anxiety and lack of sleep over the last month has not helped. 

Tuesday was Jacob's renal ultrasound for the suspected kidney stone.  I had to pull him out of school midday for it.  Thankfully it wasn't too bad--although he did have to pee really bad in the middle of it because they make you drink water before.  I guess that was payback for my extra full bladder during ultrasounds when I was pregnant with him...haha.  The results actually came back pretty quick, by early evening, and oddly there was no kidney stone to be found.  Normally that would be great news, but the sucky part of anxiety is that even good test results start a new round of worries.  A good result usually means you still don't have an answer for the reason you were doing the testing in the first place, so it gets you wondering what the next step is.  In this case, if there is no kidney stone, what was the pediatrician seeing in the original x-ray that made them think there was one?  Should we be concerned about that?  Or are they just incompetent?  It took a couple days to get an answer from his doctor, who recommended yet another x-ray to see if the stone moved or is still visible somewhere further along in the bowels.  I guess the good news is that we could also have them looking for progress on the constipation front.

Speaking of which, Friday morning was his GI follow-up.  I suppose that has been long anticipated for a lot of reasons, and while some of his symptoms have improved, they do seem to resurface sometimes and there's still a question of why the reflux came out of nowhere and what we do now that medicine hasn't really made it go away.  We also know that constipation may be playing a role in some of what's been happening, but we don't exactly know why or how much he's been able to ease that.  In the end they decided they'd be eager to see what the x-ray showed as well.  If the constipation seems to be tied to some of his symptoms, that's good to know.  But it's hard to tell since the reflux is hanging in there, despite the medicine.  She gave Jacob the choice of whether to move forward with an endoscopy to look for a few other things, or wait and see, and he choice to get the endoscopy.  We don't know yet when that is, but I guess it's pretty indicative of him just wanting to get this all figured out.

Part of the struggle is that Jacob himself tends to cycle on how bad everything is.  Some days he's miserable and insists on a full-body MRI while accusing me of doing nothing to help him.  Other days he seems relatively fine and he gets mad at me for talking about the now seven months of random stuff we've been dealing with because it makes him more nervous and think he's dying.  In the middle of it I'm admittedly struggling with my own anxiety over it all (and inevitably stuff of my own on top of it), and while I don't want him to feel like a burden (though he does), it's hard to hide my struggle entirely.  Then he accuses me of playing the victim, but there's no denying this can be disruptive.  He won't go to school, I'm burned out and struggling to focus, he gets upset about how he's feeling, and I'm driving myself nuts trying to figure out how to fix it all.  You're only as happy as your saddest kid, and dealing with spikes in anxiety every few days has been really hard on both of us.  It's what you sign up for when you have kids, but it feels relentless right now.  But you also have to explain to them that no matter how hard the burden is, it's worth it to have them around and (eventually) happy.  Unfortunately, when it comes to these doctor appointments, it seems like we go through a cycle of going to an appointment, him downplaying things, and then a couple days later something else happens and we're freaking out about it, which is frustrating when we could have covered it right then and there during the appointment.

After the appointment he seemed pretty down, and over the course of the day rattled off a bunch of other concerning things he hadn't even mentioned before.  I think a lot of them can be explained by tiredness or stress, but they'll still be things to keep an eye on.  He was just putting a lot of pieces together in his brain, worrying about new ailments, and feeling like if it wasn't one thing, it's another.  I feel him on that, for sure.  Ironically, I canceled my own chiropractor appointment on Friday for a training session I didn't know he had, an appointment I made because my own body has been misbehaving lately with aches around my sternum, lower back pain, and knots in my back.  I feel like most of it probably stems from sleeping in weird positions, so I've been trying hard to sleep on my side with only a single pillow (which seems to help sometimes).  However, I wanted to give that a shot before I let myself go too off the rails with anxiety.  The chiropractor has had a major impact on other "uncomfortable in my own skin" situations before, so I thought it was worth a try.  And I guess now I'll try on Tuesday.

In between all of that were two more of Jacob's games, one of which led to an unfortunate situation that's his current fixation.  One of his teammates was losing it on the bench, and Jacob got fed up with how he was talking (especially to the coach) so he asked him to leave.  Of course, now he's the one getting singled out (in part because he couldn't run with the team in practice) and has to write an explanation/apology.  We understand where he was coming from, but admit he probably could have handled it better.  But it does seem a little ironic that the person who was trying to maintain some decorum and respect seems to be the one getting singled out.  It sort of seems to represent some of the things we don't like about his school, so that's definitely going on our list of issues.  Maybe he was out of line, but he was no more out of line than other kids have been all year long.

So, another weekend is upon us, thankfully a long one.  We're keeping it pretty low-key.  Craig is in Halifax, and they got a win--and a satisfying late win, no less, to offset last week's loss.  He'll be back later tomorrow.  Most of the minimal snow we had melted over the last couple days, and there was even rain earlier, but now it's snowing again and there's probably a lovely layer of black ice under there.  By Tuesday the high is pretty much in the single digits.  The presidential inauguration (argh) is Monday and was already moved indoors, and there's another storm headed south of us.  I swear most areas south of us have had way more snow (and definitely bigger storms) so far this year.  It's been a weird winter--even though January has been frigid enough, we've still only had minimal snow.  While it's been white out there quite a bit because it's stayed cold, it still doesn't feel much more like a real winter than the weirdly warm last couple have since we haven't had real storms or really anything of note.  Once we get past Christmas, make my snow either pretty or enough to have fun in...but we've pretty had neither.  I liked the warm better--at least I could walk in it.  I only had one walk last January but six in December and seven in February.  This year I had three in December and that's it so far, with no real break in the forecast in sight.  I miss it, for sure.  So, we're mostly staying close to home.  I'd like to think of something to do, but it's just that time of year, I think.  So we'll embrace the quiet after a tough week, I guess, enjoy our long weekend, and hope for a better week ahead.

The Plot Thickens...Again

So after the poop revelation from late last week, Jacob spent the rest of the weekend working on clearing out.  Well, sort of.  He was hesitant to do a near-colonoscopy-level clean-out, so he was a bit more conservative with his use of aids.  He did seem to be going more, and most of his symptoms seemed to subside, but by later Sunday he said he was having a bit more discomfort again.  Seriously?  I thought maybe he just wasn't cleaned out enough--that maybe some had moved along to give him temporary relief, but that it wasn't enough to take care of the backlog plus whatever new he was making.  But with school it was harder to up his dosing since we didn't want him having any "emergencies" there, so we just had to keep a steady course and see what we could do.  I figured if nothing else we could tackle it again this coming weekend and go a little harder this time.  Before I get into our plot twist, I will mention he said he had quite a bit of discomfort during the day on Tuesday and had to "go" at school, which seemed to help.  So, presumably we still have some work to do on that front.

But on Monday I got a call from the pediatrician's office.  The nurse was checking in to see how he was doing, and casually said, "Did they tell you when they called with the X-ray results that he might have a kidney stone?"  Say what, now?  Seriously?  "No, no they did not tell us that."  I suspect that the nurse practitioner was so engrossed in the amount of poop in his system that when she saw that on the X-ray and it confirmed her suspicions, she just sort of stopped looking right then and there and called us immediately.  And I also suspect that someone else looked at the results later, whether it was his doctor or another practitioner, and realized it looked like there was a kidney stone there as well.  That would also explain a lot of the things he's had going on.  

Now, I sort of liked it better when the assumption was that a cleanout would help his symptoms, because while this would also be a reason for those things and that's good to know and be able to manage, kidney stones SUCK.  I've watched my dad deal with them for years, and our sister-in-law has had a lot of complications with them as well.  I'm well aware of the pain they can cause and the havoc they can wreak at really inconvenient times.  I don't want to think he'll be sentenced to a life of having to manage them, because he has enough other things to deal with.  To be fair, we're not sure what might have caused it.  He did take some calcium supplements a couple years ago after his broken leg bone (around our midwest travels) and when it seemed like he might be on the verge of stress fractures in his shin, but he also eats a lot of yogurt right now, has a milk-based smoothie every morning (and sometimes one at night), and eats a reasonable amount of cheese, so there's a lot of calcium there.  I'd hate for him to have to adjust his diet for this, so I'm hoping it just came from the calcium supplements and not doing those will be enough to minimize the risk moving forward.  But I guess we won't know for a while.

And, truthfully, we don't know for sure that's what's actually happening.  They couldn't really give us any assurance or confidence level that what they saw on the X-ray was definitely a stone.  I really only asked for reassurance because I didn't want to spend the next week before his ultrasound dealing with random anxiety about whether it could be something else, but they just said that if they thought it was something more urgent they would have requested more urgent actions, and this is essentially the protocol for whatever was seen.  So I'm hoping that it was pretty straightforward, but I guess we don't really know.  Luckily we haven't really had any anxiety spikes all week, so hopefully that holds through Tuesday and we get results quickly.

I still think the backup is the bigger culprit since don't think he's noticed any blood in his urine (I'm pretty sure he'd tell us right away at this point, since he shares all of his other random ailments immediately now), and he hasn't had any severe pain.  If all comes back as expected and it is just a stone, I guess we just wait and monitor as needed.  Sometimes stones don't move on their own, but obviously you also don't want them getting too big.  Then you have to consider getting them blasted or God forbid do stents or surgical intervention, so hopefully there's a reasonable monitoring plan moving forward if we're just left to wait.  

So, again, while all of this is still pretty low-level stuff and hopefully remains in the "nothing serious" camp, I couldn't help but shake my head a little and have a little teary pity party moment on Monday night, just sort of letting myself feel all the feels for this seemingly endless run of random ailments.  Despite having a kid with a lifelong autoimmune disease, I mostly haven't considered myself a chronic illness parent.  We've dealt with a lot, but nothing has felt more than, say, inconvenient.  And I know that what we're dealing with pales in comparison to so many other families who deal with severe illnesses--cancer, birth defects, autism, disabilities, genetic issues, and so many other challenging, life-altering issues--but just getting this sampling of seven months of ongoing, random, mystery symptoms has been a game-changer nonetheless.  The anxiety, the instant PTSD when something else crops up, the feeling like it's never going to go away, the fear (and even belief) that there's no "easy" answer and it has to be something bad--I've always had bits and pieces of those feelings scattered throughout my life because I think I've always teetered on the edge of anxious, but the way it is just so instant, so ingrained now is definitely different.  For some reason I keep chickening out on getting in for some therapy through work, but I know I need to.  I've passed the point of "it will go away on its own like it always does."

But for now, the weekend awaits...

New Year's Eve Fun and Proof My Kid is Full of It

Even though it was sort of nice staying close to home for the second part of the Christmas break, especially after Jacob's surgery, it became apparent as the week went on that we needed a change of scenery.  Even though Jacob had gotten a thumbs up from the surgeon's office and we had a possible aid for his chronic sleep issues (via a prescription for Hydroxyzine), it was still clear that he'd probably had too much couch time and too much time to overthink, because he seemed to be struggling mentally.  We decided that getting out of the house and getting a distraction would probably be good for all of us, but especially him.  We had previously discussed going to a St. Bonaventure basketball game because Craig's color commentator for home Knighthawks games works those games as well.  There was a game on New Year's Eve afternoon and we decided that would be a good way to spend the day.  

Originally we had talked about routing back through Buffalo on the way home and maybe spending New Year's Eve night with my parents, but it was actually only a half hour shorter drive and I suppose after the nightmare that was Christmas Eve, it just felt safer (mentally and physically) to come back home.  But two hours there and back felt like a bit of a hike, yet I felt like the mental break was worth it.  

Well, we didn't have the best start.  Jacob wanted to get some treatment with his trainer that morning.  That was at 10am, meaning that they wouldn't be back until at least 11:15, and we were ideally needing to leave by no later than 11:30.  Well, of course that didn't happen because of needing to eat lunch, so we didn't get going until two hours before the game (which is how long it takes to get there) and Craig still needed to get gas.  Then we had a couple disagreements/misunderstandings with the GPS that took even more time, so in the end we didn't get there until closer to 2:20, and they were well into the first half by the time we got to our seats.  It wasn't a terrible drive but it felt like it took forever.  I don't know how my old boss does most of that drive multiple times a week to go to Alfred, which is truly in the middle of nowhere.  Olean isn't much better.  But at least we got there. 

Interestingly, I had been in that gym nearly 30 years ago.  When I was in high school there was a foreign language fair held there, and while I participated two years (and got ribbons for both!), I remember going there in person at least one year.  It felt so cool to be on a college campus and eat from their Taco Bell Express cart (ha!) out in what I assume was a student union type space in another part of the building.  Part of the fair was in the gym and I remember being in the "pit" on the floor, or so it likely appeared with the lower seats pushed in.  I remember seeing all the banners, so I knew that's actually where they played.  However, my biggest takeaway from that experience was how out-in-the-middle-of-nowhere the school was, which was only made worse by a school bus with horrible shocks.

The game experience was interesting.  It was clearly much better basketball than we're used to watching.  One of Bona's best players is a Rochester charter school kid, and there's another kid who didn't really play but went to Bishop Kearney around when Jacob was in middle school there.  It was cool seeing a couple teams that could make it to the March Madness tournament.  I like going to U of R games, but this was definitely a notch up both in quality of play and importance.  The crowd support was great--we suspect a lot of locals and a good number of alumni, especially this time of year when students are on break and they still managed a reasonably full building.  They did a handful of promotions and the game experience was pretty fun overall.
   

I laughed when I looked back and saw this picture of the mascot during a timeout.  It reminded me of the jokes out there as people hold a couple melons in a "suggestive" manner!

It was really nice to be there doing something fun as a family, as it felt like we hadn't done anything quite like that in a long time.  

This level of basketball is definitely different.  The level of play was really impressive.  I'm also so fascinated by how they create a special time-out huddle circle on the court instead of just gathering closer to the bench.  I remember that from when we went to see games in Buffalo three years ago, but it always strikes me as odd to go to that extra effort to create an entirely different huddle area after watching lots of high school games where they simply gather near the bench.

It turned out to be an amazing game.  It was close throughout and the lead went back and forth the entire game.  As the end neared, Bona got possession of the ball at a critical time after a review, and Melvin Council Jr., the Rochester guy, took the ball in, did a great move, and scored to give Bona a late lead.  I took video of the last three seconds after that:

It was such a great win, and after watching a bunch of losses at the start of Jacob's season, it was refreshing to be on the winning end.

Celebrations and handshakes

Bonaventure exiting the court

We headed down closer to the court so Craig could say hi to his friend.  

Then we got called down all the way to the floor.  It was neat to be down there and look up to see all the banners.  The court is named after Bob Lanier, a Buffalo-born player who went to Bonaventure, went on to play in the NBA, and got voted into the Basketball Hall of Fame.  

We also found out after the game that a certain local private high school would love to have Jacob there.  Of course, that came on the heels of finding out that him switching schools could be almost impossible, but we're hoping we might be able to find a couple loopholes based on our concerns with the education and the negative impacts of having to skip another basketball season (due to the transfer rules, since we can't afford to move to a new district).  Missing a season (especially after missing most of this one) would be super detrimental both for his mental health and his recruiting prospects for college, which could directly impact his ability to afford college at all.  We feel like the school might know some ways to work around those challenges, so we might just need to have a chat there sometime soon.  It's a big mess that is definitely weighing on him, but good to know someone might really want him.  I can tell he's getting to that point of no return, where once he's ready to close a door, there is absolutely no way to stop him.  He's over the school and really doesn't even want to be involved with the basketball team at this point, so he's disassociating rapidly...yet he has nowhere else to go, so that's posing a fundamental problem.  Hopefully we can figure that out soon.

The entire Bonaventure experience definitely got his wheels turning and actually gave him hope he could play for a lower D-I school once he gets himself healthy, back in shape, and working on his strength and agility the way he was before all of his health challenges.  It was nice to see him feeling positive for a change.

We wrapped things up and headed out with the Happy New Year greeting on the scoreboard sending us off.

It was still light outside when we left, but between the drizzle, Jacob's leg, parking traffic, and the impending darkness on our drive home, we couldn't really explore.  It's an interesting campus with a lot of stucco-tiled roofs and a couple newer buildings, so it would have been cool to walk around a bit.  Maybe next time. 

We made our way back, narrowly avoiding deer a couple times and being on dark, hilly backroads seemingly forever.  We decided to stop at Livingston County Pizza for dinner since it was right on our route, about an hour and a half in.  We ate there and headed home.  

When we got home, I managed to finish the puzzle I had started on Sunday (so basically parts of three days).  It's an old family favorite that I inherited a year or two ago.  It's tough but fun.  It started SO slow that I almost put it away, but slowly it started to come together once I grouped all the similar pieces.  

Our New Year's Eve didn't go quite to plan as the boys were too busy fighting over their NHL game on Xbox, so we just missed the countdown and the start of the new year.  That was annoying.  They sipped their sparkling grape juice, and off to bed we all went.

New Year's Day was fine--pretty low-key overall.  The problem came at night.  Craig and I were settling in for some alone time before his roadtrip this weekend, after dispatching the kids to bed.  Jacob had gone to bed earlier but was still struggling to fall asleep, as usual.  We heard him in the bathroom twice after he went to bed (and he went at least once, maybe twice before that), and he finally called to us that not only couldn't he fall asleep, but he thought (again) he might have a UTI.  He was having burning again, along with some back and stomach pain.  He felt like he was peeing a lot, but thankfully he didn't have the testicular pain from August.  I was dubious that he would have a UTI because it's harder for guys to get them, but there weren't a lot of other (non-scary) explanations for it.  He basically wanted to go to the ER right then and there, but I assured him that wasn't needed and we'd call the doctor in the morning.  He didn't have a fever so I wasn't too worried at that point.  But of course night is always worse for anxiety and the more I thought about it, the more I was convinced this was yet another sign that something is really wrong.  (And yes, I really, really need to get my anxiety addressed--it's becoming a major issue for me and its impacts are more obvious to me each and every day.)  I suggested Jacob take melatonin in addition to his Hydroxyzine and try again to fall asleep, but of course I was awake for a long time myself.  I finally had a thought of something else to Google, and that gave me a little peace of mind, enough to apparently fall asleep.  But that probably only lasted a couple hours and I spent the next three hours having weird dreams and tossing and turning.  I woke up by probably 6:30 and gave up after that.  And of course today was my one work day this week, so that was fun.

We went to the doctor mid-afternoon.  We had a really great nurse practitioner who seemed to examine him really thoughtfully and seemed really understanding when I explained all that we'd been through over the past six months, how we sort of feel like we're at the point of "when do we become the crazy parents and start asking for deeper investigation into what's going on with him?"  She basically said that's not crazy, which was reassuring.  She did some examinations--just what he wanted, more invasive stuff--and did a UTI test, which appeared negative.  She decided we should go to the urgent care next door for a belly x-ray, and she called pretty much before we pulled out of the parking lot to stay that he had "tons of poop up there...TONS," which was her original suspicion.  And that was actually mine as well, following my late night Googling.  I had looked to see if constipation could cause burning, and sure enough it can because the poop can squeeze the bladder and irritate the nerves in the whole system.  When he had an x-ray in October, they noted some poop in his system then (seemingly not a ton, but a notable amount) and had recommended he try Miralax then.  But we were on the verge of the SIBO breath test and you couldn't take any laxatives before that.  So it went on the backburner, and then after that we sort of forgot about it.  A few weeks ago when I messaged the GI nurse practitioner about his issues with the continued reflux and food aversions he's been having, she mentioned trying Miralax too, because if he was constipated that could put pressure on that area and make the reflux worse.  But he insisted he'd been pooping reasonably well at the time.  And even though there were a couple days lately where he'd mentioned it being a bit less easy than usual, especially post-surgery, it never seemed like what I would expect for gas or constipation pain.  It seemed more like discomfort, but I know I've had times where I was doubled over in pain from stuff like that and he didn't seem to have that.  Even when I mentioned it a couple days ago that we should try the Miralax, he kept brushing me off.  So now he pretty much has no choice but to give it a shot.  And wouldn't that be crazy if it started to solve some of his issues?  I maybe have as much hope as I've had in a long time, but I'm also trying not to get too hung up on it because the reflux seems a bit more resilient than that--or at least, I don't think he's been that constipated for that long based on what they saw in October, so I'm not convinced this is the sole source of it.  But who knows, it has gone up and down a bit so maybe it has fluctuated based on that, more than we ever realized?  We have our follow-up at the GI in a couple weeks and I would love to be a bit less spastic about everything by then.    

So, Happy New Year to us.  We had one fun afternoon to close out the year, and now to start the new one we have official confirmation our kid is literally full of sh**.  Ha.

The In-Between

The week between Christmas and New Years is such a weird place to be.  

On one hand it's meant to be a low-key, relaxing time to recover from the holiday.  The kids are out of school, hopefully the adults can snag some time off, and activities are mostly at a minimum, as long as you got your celebrations out of the way around the actual holiday.  It is a prime time to relax as much as possible with Christmas cookies at the ready and the TV on your streaming service of choice.  I appreciate the abundance of time because it makes it easier to choose to do things I normally feel I don't have time for or usually need to rush through, like working out, or doing that extra bit of cleaning I typically ignore, or finally fixing that thing I keep neglecting.  

On the other hand, it can also feel like a mad scramble to do all the things.  For us it starts with unpacking and cleaning up the Christmas mess--whatever we left behind of our gift opening and breakfast in our rush to travel, unloading whatever we brought home with us, and finally packing away the leftover gift bags, boxes, and tissue.  I typically feel much better once that's done.  But having this amount of time away from work is rare, so inevitably there are at least half a dozen projects that I'm eyeing up--everything from typical household stuff to leisure activities I never have time for, like gratuitous TV watching or something crafty.  There's always bill paying and calendar refreshing and house cleaning.  There's usually some sort of gift follow-up to do, like getting Carter's phone set up or assembling the Legos or doing all the new laundry. I have a bunch of stuff in my basement to give away on Facebook and this should be the time I do it, but I doubt it will happen.  The other night I finally seasoned a lightweight cast iron pan I bought more than a year ago and then panicked about using.  I was hoping Carter and I would start making the crystals I mentioned in my last post, and I've also been meaning to make churros the kids have been asking for for weeks, but suddenly time has filled up and now I'm not so sure.  This always happens--I am really productive in a lot of ways (even if one of them is actively making time to relax), but between the holiday days and any work days I plug in there, I always seem to run out of time before I run out of to-dos.

Even still, this time is so helpful for feeling capable of doing things and not ending up with complete paralysis trying to decide what's most important (at least until the last couple days).  But I also know if I don't do something now, I will struggle to find time to do it later.  That is equally motivating and terrifying.  Ultimately I just try to do what I can while also prioritizing relaxation and not pushing myself like crazy.  There's never really enough time, but it is a really helpful break regardless.

I know for some people this time looks like the perfect time to put away all the Christmas stuff.  Social media is full of people taking down Christmas as early as Christmas night (what?!) or on the 26th.  To some degree I do understand the urge to clean up and minimize and get a fresh start, but that is just not something I can get on board with.  I work too hard during all of Christmas season to give up this prime time to just sit and enjoy it.  The rest of Christmas is full of to-do lists and stress, so this is my opportunity to sit back and appreciate it without all of that getting in the way.  Ever since I was a kid, this week has been about chilling out in the shadow of the tree, grabbing a gift from beneath it to play with, and basking in the afterglow.  It would feel so sudden and empty to just be thrust back into a non-Christmas house.  I still listen to Christmas music in my car this week, too, just because I always feel like I need to ease back out of the season a little more slowly.  I have a great transitional album that has a couple songs that are perfect for this time of year, including Auld Lang Syne, Boxing Day, and one that has a lyric that says, "It's always winter, but never Christmas," which likens the cold to feeling apart from God, but ends with a reminder that He is with us and we should not lose hope.  It just feels like the perfect wind-down.

Like I said, I understand the mental need to put away all the things and I try not to judge, but at the same time, it always feels to me like for those people, Christmas was just a thing they tolerated and are rushing out the door the moment it's socially acceptable.  It's like the clock hit midnight and Cinderella's coach turns back into a pumpkin.  The magic is over and we're just left with our gifts and memories and an empty spot in the corner of the living room.  As a Christian I have an even harder time getting on board with that.  Christmas isn't just about the decor and gifts, it's about celebrating the birth of our savior.  And I don't just want to rush past that, especially now that I have some downtime to appreciate it.  I want to reflect upon it while still looking at my nativities and tree.  I love the glow of the lights and all the memories my decor evokes.  Why would I want to cut that all short?  Sure, I have moments where I think it would be nice to get it done or put certain things away, but I suspect I'd miss it too much.  Personally, I like the concept of the Epiphany.  To me that's a nice spot to shoot for--enjoy the decor until then, and then decide beyond that when I'm ready to move on to our next stage (and have the time and energy to tackle the massive putting away).  To be fair, I don't mind our winter decor--it's like Christmas lite, with some of my white glass trees, some silver and pine garland, lots of sliver and clear glass, and some tasteful blues.  By the time I do it, it does feel fresher and lighter and cleaner.  But usually it only sticks around for about three weeks before it gives way to Valentine's Day.  And I have to say, having Carter's birthday in that time does make that challenging phase of winter a bit easier, both as a milestone/deadline and a highlight.  By the time we get there we're more than halfway to spring.  But at this point in the year, I'm usually pretty content to just sit in this dark time of year for a bit, with the glow of the lights and a little mental break before we get back to real life.

This past week we had a couple days of 50-60 degree weather, which was even more notable because it made all the White Christmas snow melt almost instantly, further pulling us away from the holiday.  I took a walk and it felt like a bit of a fresh renewal, though it probably would have felt more appropriate in January.  The downside, of course, was that a lot of people used the weather to take down their lights, probably a bit earlier than they would have normally.  Mine are easy enough to leave up because they only take five minutes to take down, but with people with tons of lights and inflatables, I guess I can't blame them.  It's a little bit of a bummer, though.  I did use the nice weather to catch up on a few things I never got to do before the weather turned--like cutting down my dead coneflowers and autumn joy sedums and dealing with our fall pumpkins.  I noticed some wetness on the porch when I got home from work on Friday.  I figured maybe something melted funny and drained onto the porch, but on Saturday I realized that our giant pumpkin unfroze, turned to mush, and oozed all over the porch.  So I hauled that back to the woods and then cracked open our little pumpkins and gourds to steal their seeds before sending them back there too.  It felt good to get that done.

I guess I didn't do too bad with the activities I wanted to cram in--I finished watching some Christmas movies I missed, did an old favorite puzzle by myself in three days, built my little Lego-ish gift, got an Amazon order placed for a few things, and did quite a bit of laundry.  We also had an activity for New Year's Eve day, which I'll get into in another post.

I'm planning to work from home tomorrow, but I might just take Friday off again because the kids are home and nothing is pressing.  It's super hard to focus when things aren't urgent and I'm constantly interrupted.  I can dig myself out tomorrow and start fresh on Monday with three days to think through projects I can work on before our books close and I spend a couple weeks straight doing reports.  I think that's a fair compromise.  But that means today is my last day of the streak before my time off turns into a simple long weekend.  And then it's back to the full school and work grind on Monday.  Sigh.

But I'm grateful for this in-between time to relax and recover.  It's been much needed and much appreciated, especially with all we went through with Jacob's surgery and recovery.  I'm sad to see this break end but I know it's time.  And now it's officially the new year.  I have absolutely zero expectations because anxiety is rough like that, and I'm having trouble processing that the pandemic was a full five years ago, but here we are.  Time for a few deep breaths and giving it a go...