Monday, September 29, 2014

A Welcome Distraction

While it would have been easy to stay in Buffalo right through the weekend, it was good to get back to Rochester for a couple days to take care of some things.  Craig was alone with the boys, obviously, and with his recovering from shingles, I know that wasn't easy for him.  Work was waiting for me, as well, though they were great about it, but I had to start digging back into that mountain of work.  Also, Friday night Jacob had a mandatory meeting for the upcoming lacrosse season, and since Craig had to be at the rehearsal for his good friend's wedding that he was standing up in, that was all me.

Saturday morning Craig had to get back to wedding festivities at 11:30, so we dropped him off and headed to Wegmans for the shopping trip I was planning on doing Wednesday evening, before the surgery craziness started.  We made it back home for lunch, Carter's nap, and Jacob's homework before I had to get ready and head out to the wedding myself.  Lori arrived to watch the boys, and I was off.  Things went relatively well, aside from Carter having more stomach issues (a number of icky diapers lately) and a low-grade fever (hoping it's just a virus working its way through), and him accidentally causing Jacob to fall off a chair, leaving a pretty nasty looking brushburn on Jacob's forehead.  But alas...overall things were fine and we got to enjoy some time away.  Of course, seeing as how Craig was IN the wedding party it wasn't exactly exclusive "us" time, but we enjoyed it nonetheless.

The groom is an old friend of ours who we both worked with at the Amerks for years.  He now works for the Rhinos (soccer), but we still see him periodically.  He was in our wedding, and now Craig returned the favor.  Dave had a rather "interesting" experience with his first marriage and I wasn't sure he'd ever do it again.  But it seems he's found his perfect match, so we couldn't be happier for him.  The ceremony was pretty traditional, aside from the rings being carried in on a rugby ball, as that's what brought them together.  The reception, however, took place AT the soccer stadium, which was pretty cool.  Thank goodness the weather was nice and warm all day, because with all of the forecasts of the polar vortex coming to visit us in September, all I could picture was that it was going to snow.  But no, mid-70s it was!  Of course, by the evening it did cool down a lot, but we had a great time.  And I got a little bonus "me" time in between the ceremony and the reception!  Here are some highlights of the day...just because the pictures are fun.  I like my new camera!

As they were being pronounced husband and wife...happened to catch Dave's comical look on his face!

These paper flowers decorated the church and reception...each more than 6 in. in diameter, I'd guess!
My pit stop in between events was at the Art Walk outside the Memorial Art Gallery.  I've still never been in the gallery, nor had I ever been outside, but I'd heard about the outside works and really wanted to go.  It wasn't that far off the path, so off I went!
Everything was so pretty in the sun and with fall colors coming out.  I liked that this one captured the classic houses in the background with the funky chrome art.

I saw this guy hanging out around the tree and my zoom let me get him this close.  He was so cute peeking out from the tree, though the next shot I took was actually a little indecent.  He's a boy, by the way.

There were a dozen of these tiny little statues around the one section.  The bronze ones are only maybe a foot tall, if that.  They were in lots of different poses, but I liked the tiny ones in the foreground and the big ones in the back.  You can't really see it here, but there's a tiny bronze one chiseling away near the feet of the big guy in the back.

 I just loved the colors in this one!
There were more, but those were the highlights.  Back to the reception...
Yep, that's a double bobblehead on top.  And the cake was part cheesecake!

The sunset over the stadium wasn't spectacular, but it was pretty!

Selfie on the field!

The view of the reception from the field.  They were showing a slide show of pictures from birth to the present on the scoreboard, so everyone was out watching.  And the groom's nieces and nephews were playing!

Inside the tent was pretty--strings of lights, blue paper lanterns, lots of cobalt blue accents!

One of the centerpieces...cobalt blue is one of my favorites (as evidenced by the entire shelf in my dining room full of it)

The groom and Craig
Dana and Dave
Sunday morning we had to get up and out so we could get to Buffalo to see my dad.  We also wanted to get there in time to see my brother before he headed back to Portland.  We met him in the hospital lobby so he could see the kids, while Craig took a turn visiting my dad.  I ran up for a few minutes after John left, and then Craig took off with the kids to his parents' for a bit.  I stuck around until the discharge papers came in....which means, he got to go home!  Hard to believe he could go home just three full days after quadruple bypass surgery, but everything went so smoothly that I suppose they figured there was no sense keeping him there.  So, he's home and recovering there.  The kids even got to see him once he was home.  He's got a lot of limitations, but he's going to get through them, I have no doubt.  I think I've got one more post in me to wrap up that whole experience, so I won't get into it here...but it's been one heck of a week.  But at least it all ended on a high note!

Friday, September 26, 2014

The Actual Rest of the Story

As I mentioned briefly yesterday, things went well.  But make no mistake, my dad is a living, breathing miracle.  I mean, I guess anyone that makes it through bypass surgery is pretty darn amazing because the mere fact that doctors know how to crack open someone's chest, reconstruct major arteries, then put everything back together and have them be functional within any reasonable period of time is pretty crazy.  But we were basically told that given the fact he had no chest pain or other identifiable symptoms aside from the erratic heart rate that started this whole mess, he probably would have just dropped over dead one day.  He had at least one major artery that was 100% blocked, and at least one more that was very close.  Though he might not feel this way for the next few months, he's a very lucky man.  And we are very lucky to still have him.

Yesterday started early--5am to be exact--as my mom and I got up early to make it to the hospital by 6am.  He was supposed to go in a short time after that, though in the end we probably had a good 45 minutes to spend with him before it was time to head down to the OR.  No traumatic blood draw this time, thankfully.  He'd had a good night's sleep for a change and was still in good spirits considering the circumstances.  

We headed back down to the waiting room and slowly but surely the rest of the family trickled in.  We had a tiny scare as there was a phone call for my mom around 8:45, but they were just letting us know they'd started the actual surgery a little late.  My brother John arrived from Portland around 10am, and our entourage mostly just killed time on electronic devices, reading the paper, and talking to other people in the waiting room.  I'll admit, hospitals are pretty interesting places when it comes to people-watching and random conversations.

At one point my mom headed off to the restroom, and shortly thereafter the surgeon came out looking for her.  We all panicked (again) momentarily, because it seemed too soon for him to be there, but he reassured everyone that everything was okay, and when I saw my mom I waved her over.  The surgeon shared the good news with all of us, that everything had gone very smoothly--hence the reason he was there so soon!  He told us about the significant blockages, explained what they could have led to, and told us a funny story about a significant political figure he had operated on back in his days practicing in Washington, D.C.  We were all very relieved, of course, and joyously headed across the way to the cafeteria for a very jovial lunch together.  

After lunch we returned to the waiting room until they called us down to see him, even though he was still completely out of it.  We just stopped down for a couple minutes, took in the sight of the worst of it--a million tubes and lines, though honestly, we all thought it wasn't as bad as people kept preparing us for--and then headed back up.  My dad's siblings all headed down to do the same, then they headed out.  In the meantime, my mom, John, and I went on a geocaching walk around Cazenovia Park, across from the hospital.  We found two and were stumped on a third, but it was a beautiful day for a walk, regardless.  

After that we headed back to the CCU waiting room to wait for visiting hours to start.  A half hour later when we got to go in, he was just starting to wake up.  He was very groggy, but almost immediately started trying to write letters in the air with his fingers to talk to us.  We couldn't really figure out what he was writing, though, so there was some hand squeezing and motioning until they shooed us back out rather quickly so they could take some bloodwork and possibly remove the breathing tube.

We had to wait a lot longer than we thought, and they didn't call us back in until after the visiting hour was technically over.  Still, by then he was much more awake and his breathing tube was out, so he was OK to talk.  And talk he did!  His speech was still a little on the slurry side, but his brain seemed to be quite clear!  He complained about the breathing tube, asked for ice chips, made a few jokes, and generally seemed like a more tired version of himself.  It was a great thing to see before I left town.  We headed out for dinner at a bar down the road, then I took off.  I was excited to see my boys and got back in time for bedtime. 

They wasted no time getting him moving.  He walked and sat up for a long time today.  He's starting hugging the firm stuffed bear they provided that helps stabilize things as he coughs or breathes.  He's got a long road ahead of him, but so far so good!

Here are some photos from the time I was there... 

Buffalo skyline from one end of the hospital

I think this was from his room. 

Buffalo skyline again, this time at around 6:30am! 

I've noticed this year that many trees have very defined parts of them changing color.  This is a bit of an example of that...such pretty colors!  This was in the park during our geocaching.

Mom and John during geocaching

Cazenovia Creek

Upstream on the creek...very pretty!

The clock tower outside St. Thomas Aquinas near sunset.  Craig went to school here for a year.  Really pretty structure.
Anyway, we're all so thankful that he came through the surgery so well, and it really is a miracle that they caught this before their trip, otherwise he could have died in the middle of the desert.  It's been a totally unexpected week and I think it's still going to take time for it all to sink in.  Reality will really start hitting both of my parents over the next few days, so please keep them in your prayers. 

Thursday, September 25, 2014

The Rest of the Story...

...will be coming soon.  I am tired but very happy because all went well today!  Still a long story to come, but it's a good one!  Thanks for the prayers!

Wednesday, September 24, 2014

Hurry Up and Wait

What a day this turned out to be.  The morning started like any other...aside from the immediate dread of knowing my dad needed heart surgery and the rest of my week being a complete question mark.  I got up, got dressed, packed Jacob's lunch, and started to pack mine.  And then the phone rang.  It never rings that early, so I panicked a bit as I picked it up and saw that it was my mom's cell phone.  Turned out that they'd managed to schedule my dad's surgery for noon TODAY.  So, in a flash, my entire day changed.  I put my lunch back in the fridge, called work, got Carter ready, changed my clothes, and headed out to drop Carter off just as Craig got back from the bus stop.  I ran back home, gathered up a few things, and took off by around 9:30.

I got to the hospital in time to see my dad for a few minutes before they had to do some pre-op stuff.  There was some very painful bloodwork involved, and it made him very faint.  His blood pressure dropped crazy low and he had a hard time staying conscious.  Still, he recovered a bit once that part was over and he got into the gurney to travel down to the OR.  We said some quick goodbyes in the elevator and headed off to the waiting room.  By this time my dad's two sisters and my uncle were there, too, and we sat for a bit in the waiting room.  My dad's youngest brother came in shortly thereafter, and just as we were all pondering lunch options, a doctor-ish looking woman came in asking for my mom.  Internally we all panicked a bit, but the woman's demeanor was a little too chipper to be announcing a sudden death or something, so I figured there might have been something going on with his low blood pressure.  Turns out that an emergency case came in and they had to postpone it!

Annoying though the postponement was, particularly considering my dad gets crazy nervous and didn't need more time to think about things, the good news here is that he's not a serious enough case that they couldn't bump him, or that his case is not serious enough to need to bump anyone else.  He's lucky in that he doesn't really have any heart damage like so many people who need this surgery.  He just has clogged arteries (four of 'em) that need bypassing.  The heart itself appears healthy, as there haven't been any heart attacks to damage it.  The better news is that this issue popped up before they were on a week-long trip to the Grand Canyon, so even though they're missing their trip, hopefully this is just a stepping stone to a long life of many more trips.  As I alluded to the other day, my dad is getting the chance my uncle never got--the chance to start over and life a healthier life.  My uncle was one heart attack and done, and I think the way that went down was traumatizing for everyone--which I think is part of the reason most of my dad's siblings are near-constant companions in situations like this. 

Anyway, the rest of day was spent hanging out.  My mom and I grabbed some lunch, stopped back in the room, and took a walk in the area around the hospital.  Once we got back and the rest of the family had left, we screwed around on our electronic devices and chatted.  My dad rested a bit (yay for drugs!) and eventually had some dinner before my mom and I took off for the evening.  We took a nice walk (the weather is perfect right now!) to a little dive bar not far from the hospital.  It's right down the street from some of Craig's family and he used to play softball for the bar, so we spent many a summer evening enjoying their amazing wings after a game.  Every time I go through South Buffalo I always say how we need to go back, so my mom and I went, sat on the patio, split a single order of wings, and walked back to our cars.  All things considered, aside from the general stress of the day, it was a pleasant day.  Family time, lots of conversation, some quiet time to do some things on my computer that I never have the uninterrupted time to do...not too shabby.

But, of course, tomorrow awaits.  We'll be up bright and early, and my brother will be coming in mid-morning from Portland.  Nerves are still running high, but it did my heart good to see my dad in decent spirits today, particularly considering the extra wait.  All we can do is pray that everything goes well and he's mentally and physically ready to jump head-first into a long recovery.  Please continue to pray...

Proud first-time grandpa!
A kid at heart showing Jacob the joys of the slide!

Making snowballs for Jacob next to the snowmen he built for him!
I have more recent ones, too, of course, but these were some old classics.  I'm not ready for this collection to be done anytime soon, either!  Just sayin'.

Tuesday, September 23, 2014

Sleep is for the Weak

I guess it was bound to happen, but for the first time since infancy, Carter had an absolutely craptastic night of sleep.  My star sleeper was up for TWO hours in the middle of the night, for no apparent reason.  And of course, I was flying solo...which meant I was up for over two hours in the middle of the night, too.

He went down fine at the normal time, but woke up around 3:15.  I went to bed later than I should have as it was, so I had barely more than three hours of sleep when my wake-up call came.  Him waking up wasn't completely surprising as he's still working on his last two teeth and I'm expecting them to pop through any day.  Usually he's at his worst right before that happens, so lately he's woken up a bit, but it's usually short-lived.  I wandered down to his room and rubbed his back.  He was laying there with his eyes wide open, and if I stopped rubbing his back, he'd either cry or sit right up, and once he knew I was there, he'd smile.  GREAT.  Wide awake.  I tried the back rubbing thing for a bit, but when that didn't work, I decided to bring him into bed with me (I know, bad precedent...but I had half an empty bed and he's not really a snuggler anyway, so I figured there was less chance of him getting used to it).  We tried that for a while, but while I tried to go back to sleep, he sat up and stared at me.  It was a little creepy, actually.

At one point Jacob woke up after having a bad dream so I had to haul Carter down to Jacob's room to check on him.  Jacob asked me to lay with him for a couple minutes, so I put Carter back in his room and laid next to Jacob for about five minutes, until he was back to sleep.  Carter was quiet at that point so I walked back to my room, only to have him start crying again.

I lost track of how many times I wandered back down there and what I did each time.  At one point I gave him Tylenol in case his teeth were bothering him, but eventually I figured out that he didn't seem to be in pain.  He just seemed to want company.  But that is a "no" at 4am, so after trying a little of everything, I was so tired and so annoyed by him being fine but wide awake while I was there that I just had to let him cry it out.  Sounds awful, but it was my only option at that point.  He cried every few minutes, and at some point I dozed to the point that the crying showed up in my dreams!

After letting the crying go on for quite a while, I tried one more round of time in my bed, but he just wanted to play and I was too tired to keep an eye on him.  I once again took him back to his crib to give him the hint that if he wants to be with me, he needs to lay down and go night-night when I tell him to.  He started crying again, and when I felt like he had to be getting close to tiring himself out (by this time it was 5am), I went in and tried rocking him as a last resort.  He's never really been much of a rocker unless he was already way overtired, but by that point I had to try it.  It took a while--a few minutes of standing, a few minutes of sitting--but eventually he was sleepy enough to leave alone.

I set my alarm for 15 minutes later, which was risky considering I had two kids to get ready in the morning, and snuck in one last hour of sleep.  When my alarm went off, it was absolutely horrifying.  I was SO tired and felt like I'd barely rested.  But I had to get Jacob on the bus and ready for picture day at school, so I had no choice.  I let Carter sleep as long as humanly possible, and other than the picture his teacher sent me of him trying to lift up the entire kitchen set that he knocked over, I guess he was generally OK today.

As a side note, he's been very prone to hitting lately, and he did bite a kid the other day, though I blame the biting on teething.  The hitting has been relentless at times.  And he's gotten pretty brazen about throwing his sippy cup and food at dinner.  We're very firm when reprimanding him for these things, but he just sort of laughs it off most of the time and doesn't seem to get it yet.  Part of me hopes he'll figure it out as his language skills get better, but I know how that worked out with Jacob so I'm officially nervous that my sweet, easy-going baby is turning into a little monster.  Last night didn't help.  God forbid.

I felt crappy most of the day because I overdid the caffeine a bit this morning.  Then I got home and got word that my dad's test results were in and they weren't good.  Turns out that he needs to have open heart surgery.  So...this is turning out to be quite a different week than we thought.  Keep us in your prayers.

Monday, September 22, 2014

Some Answers...

Well...we got a couple answers today.  Craig went to the doctor first thing this morning, and sure enough, he has shingles!  Turns out the urgent care folks pretty much suck, because he had a textbook case--from the rash to the numbness to the pain--and yet they didn't see it.  So, he's got a couple medications and hopefully it won't get much worse from here.  It would have been better had urgent care caught it, but I think it's still pretty early so he's probably getting off easier than most old people who end up with it.  All things considered, it's probably not the worst news he could have gotten.

As for my dad, their big trip is officially off and he's still in the hospital.  He had a nuclear stress test today and they saw some damage at the bottom of his heart.  It's still not clear what's causing it, but it could be that he'll get a stent.  It's a weird spot--it's good that he's not so clearly sick, because obviously that would be scarier...but because he's not so clearly sick, it's also harder for them to treat him properly and ensure that he'll be healthy from here on out.  All of this seems like a drop in the bucket compared to all we've been through with Craig's dad's heart issues, but now that it's my family, obviously it's scary.

I'm not going to get into all the touchy-feely fear stuff right now, in part because I know my dad reads this and he doesn't need that hanging over him at the moment.  Chances are he will be fine and back up and running very soon.  But it's still something I haven't truly had to face, so it's food for thought for sure.  All I'll say at the moment is that I'm grateful our relationship has been so much better over these past many years, and I've so enjoyed watching him enjoy his grandkids.  I know what it's like to have never really known a grandparent, and I pray my kids don't experience that same loss.  It may be harder when grandparents you're close with actually pass, but at least you're left with memories and the joy of having had that person in your life.  I had so many years with three of my four grandparents, and I want my kids to get as much quality time as possible with all four of theirs, enough to have legitimate memories to carry with them forever. 

My dad has often remarked that his older brother, who died in his early 50s of a sudden heart attack, never had to find out what it was like to get old.  Sometimes he sounds a tiny bit jealous, that my Uncle Bink is hanging out in heaven living the good (after)life, not having to deal with aches and pains and the sad moments of life.  However, the one thing I hope he remembers is how much Uncle Bink missed out on in the 17 years he hasn't been here.  To be fair, he left us before he had to go through a number of heartbreaking losses his family endured, but I'm sure if he knew he'd feel terrible he couldn't be there for them in those moments.  But for all the bad he avoided, he also missed out on the births of his two granddaughters and watching them grow.  He missed three joyous weddings for his daughters, and lots of quality family time over these many years he's been gone.  None of it's better than heaven, of course, but the point is that there's so much life to live here and we only get one shot.  There's no guarantee that it will be easy or that it will always be good, but there is so much good to enjoy here if we can just get through the tough stuff.

I know sometimes I feel like life is all the tough stuff, despite the fact I know how blessed we are.  For all of the hard moments we've dealt with in this past year, there have been a lot of good moments, too.  Laughs, smiles, little victories...all made more precious by the rough stuff we've had to endure.  As much as I'd like to ditch the rough stuff, I know it's a package deal.  Life knows how to throw curve balls, for sure, and the past couple days have been one of them, but at the moment I can just be thankful things aren't worse and keep praying.  It's all a part of the ride, and I just hope there's a lot more good stuff left despite this speed bump.

Sunday, September 21, 2014

Life

It's been a weird weekend.  The two most important grown men in my life are both going through medical mysteries, and the two most important little men in my life are driving me a little nuts.

I started coming down with a cold on Friday.  We had to go out that night to buy a gift for a birthday party that Jacob had on Saturday, which led to a later night than we'd generally like.  I was feeling pretty crappy by the morning, and spent most of the day in my pajamas...and so did Carter.  Craig had been dealing with a weird rash for most of the week, and it got considerably worse by Saturday morning.  It started in the crease at the top of his leg, near his hip.  It got more intense, the skin near it started to go numb, and he started having some pretty intense pain.  He figured he could make it through the party, and then he'd go to urgent care.  He was scheduled to go to Canada for work on Sunday, so he figured he should get looked at before he could get to his doctor.  While they were gone, I snuck in a nap.  My mom called later in the afternoon to tell me my dad had been admitted to the hospital.  He'd had some heart racing issues, and decided he needed to go in--which if you know my dad, that is a big thing.  Particularly because they were supposed to leave today for a trip out west to the canyons.  The preliminary blood work showed some elevated cardiac enzymes, which indicates heart damage.  Still, there wasn't a clear cause for them, so they kept him in to monitor him. 

In the meantime, Craig went to urgent care and got the unclear diagnosis you'd expect.  They gave him some antibiotic cream but couldn't really explain anything.  The rash looked a little worse this morning and the pain was worse around his kidney.  So...he'll be calling his doctor first thing tomorrow.  It's a little concerning, as it could be an infection, or maybe a kidney stone, or who knows what else.  My friend's son's leukemia diagnosis started from a rash, and that's the first thing that popped into my head.  Of course.  We'll just have to wait and see.

My dad is still in the hospital and will hopefully get some answers tomorrow.  They can still make the main part of their vacation if he gets released tomorrow, but obviously some answers would be good regardless.  Obviously the timing stinks, though.  Seems like a trend, with all the issues Craig's parents had surrounding our trip to Florida.  Let's hope this is the end of it, no?

On top of all that, the kids were pretty challenging.  Jacob had a pretty hardcore meltdown Saturday morning for the first time in a while.  That was hard to deal with.  He still has some trouble listening and changing direction, which led to some general frustration this weekend.  Carter is definitely getting a mind of his own, too.  He can be so sweet at times, but then he decides that he needs to do something and all bets are off.  He must get into everything.  He must throw everything (including his sippy cup (every meal), his food, and anything he's not supposed to be holding or decides he's done with).  He's now getting in these hitting streaks and is trying to bite, too, which I blame on those last two stupid teeth that have been thisclose to popping through for days.  He generally thinks he's being cute when he's not.  It's all vaguely familiar, which is scary.  It's made for a very trying weekend, particularly since I wasn't overflowing with patience thanks to my cold and stress from the medical mysteries.

I wish I could have some happy ending to the weekend, but the challenges continued right up through the evening...when an hour nap by Jacob while Carter and I were running an errand led to an extra two hours awake tonight.  So tomorrow will be rough, no doubt.  And with some of the medical mysteries poised to be solved, I'll admit I'm nervous.  Life really has a way of messing with you sometimes.  Just when things are manageable, BOOM...they're not.  Ugh.

At least this kid CAN be this cute...let's hope this returns to the norm once those nasty teeth stop bugging him....

Thursday, September 18, 2014

One Year Later

A year ago yesterday we took our dysfunctional existence on an airplane and headed to Florida.  Part of me was excited.  After all, Disney is the happiest place on earth...so if you're going to be miserable, it might as well be there.  I was hopeful that Jacob would snap out of his disastrous behavior for a few days and soak up all of the amazingness that Disney had to offer, though I knew it was unlikely.  The change of scenery sounded like a good idea, at the very least, but I knew that came with a downside, as well.  Traveling with kids is always a challenge--overtired, out of their routine--and given that normal life was already a major challenge, I wasn't sure we'd actually make it out of this trip alive...or at the very least, sane.  We were taking Jacob out of school, too, which was a major concern.  I misspoke in a previous post when I said he'd only had a few days of school before we left.  He'd actually been there for eight days--two days, a full week, and one more day--but still, it wasn't much...and the more I think about it, the more I'm convinced that time away gave him a very rocky start.  We had a boatload of homework to complete while we were gone, and it made a lot of our downtime miserable because we were constantly pushing him to do the work while we had the time.

I talked a few posts back about my memories of that trip, that I'm thankful we had the opportunity to go and grateful that the good moments have floated to the top, via all of the pictures I took.  Disney is a magical place, and despite all of the stress on that trip, there were many little moments where I could take a step back and soak in the good.  I changed the wallpaper on my work computer yesterday morning to the view from our Disney bus stop--palm trees, the lighthouse near the pool, and distant glimpses of the main building and the bridge we walked across every morning to grab breakfast.  I keep reminding myself that it was 90 degrees and humid, so I don't really want to be back there right now, but that view was almost surreal to me at the time because it was just so pretty and so unlike my daily life at home.  Even if he didn't appreciate it, I enjoyed showing Jacob how many cool things there are to see in the world, and I loved watching Carter charm everyone, no matter where we went.  It's hard to believe he was so much littler then.  It's hard to believe that was a year ago at all...even though I feel like I've aged about five years since then.

One year ago today is the day we first found out Jacob could have Celiac disease.  That's probably a more significant anniversary than the trip itself, but we didn't start the full-on diet until a month later after the intestinal biopsy confirmed it.  Still, it's been a year since it became a part of our consciousness.  Some days I feel like we've settled in pretty well.  I've been good about reading labels and I have a decent supply of foods that work for us.  I've gotten pretty good at having backups for parties.  Other days I still feel lost and frustrated.  I feel like our dinner options are so limited.  I get annoyed that quick options, particularly outside the house, are hard to come by.  I miss eating out wherever we want.  I cringe every time I grab that $4.79 loaf of bread or the granola bars that work out to about $1 each.  I feel sad that Jacob won't ever get to participate in "normal" things without some sort of workaround.  I wonder how he'll survive when he's out in the world on his own.  My alma mater, Geneseo, has done great things with gluten-free offerings, but I wonder how other schools might do.  And how will he make it through the midnight pizza runs without being tempted?!

I just don't know what his future holds, and as a parent, that is scary.  Still, we've made it through a year, and it's just one step, one day at a time.  I'll find more recipes, finally buy all of the different flours to bake properly, and hope that the restaurant world and the medical community come up with better options before he has to be off on his own. 

A year after these major events we're definitely in better shape than we were then.  Our existence around the time of the trip was not sustainable.  We were all miserable.  Jacob had meltdown after meltdown, Craig and I were so tired of the constant discipline, and we were all just exhausted because everything was a struggle.  These days things still aren't easy, but I will say that we're in a pretty livable patch right now.  Jacob is doing well at school so far, and while he still isn't a very good listener and has trouble with transitions, eventually we get there.  We threaten to take things away, he gets angry, but eventually he comes around.  We've learned to table certain things in the moment and come back to them later when cooler heads prevail.  We've learned to be a little less flexible in some cases, so he knows there's only one way to go.  However, we do pick our battles very carefully and know a little better when something needs to be let go.  It's a process, but we've gotten much better at it.  Do I want to live this way forever?  No, but this sure as heck beats the way things were a year ago.  I feel a tiny bit more in control, a bit more empowered.  I'm hoping that age and maturity will help Jacob identify when he's having an issue and find his own ways to deal, that he'll understand when something isn't worth battling us on, that certain things are as they are and it's not our fault (i.e., homework).  But for now, we're better.  Not perfect, but better.

Now to lighten up this post and reward those who got through it, here are some unposted photos of Florida.  I guess the posts were long enough last year that I felt bad adding more, so here are some unseen highlights...
This was taken from the bridge on our walk from our villa to the main building.  Across the lake is a golf green for the course that's alongside the resort.

This is the outside of our villa.  Our door was on the 1st floor around the corner from the stairs.

This was at the entrance to Hollywood Studios, all set up for Monsters University :)

On the street where we ran into a bunch of characters, Jacob was so cute about getting his picture with Chip...

And Dale!

This was taken outside Toy Story Mania, the ride we waited the longest for.  Gotta love the army guys and the giant Scrabble board.  I think this was right around the time we got the Celiac news...

This was in Magic Kingdom.  Jacob wanted to throw a penny into the fountain, and Craig called it right away that he was going to aim for the cup that the guy under Gaston is holding...sure enough, he did :)

I was surprised I didn't add this one, because Jacob really liked the Haunted Mansion.  Here he's playing the organ (yes, it played) that was keeping us occupied in line.

I did include a selfie of Jacob and me on this ride at Animal Kingdom, but he was such a good sport for this picture in the dinosaur car on the Dumbo-esque ride that I wanted to include it here.

I took this while we were headed to the bus on the way from Animal Kingdom to EPCOT.  It was just in a wooded area near the stop, not really an official flower bed, but it was so perfectly gorgeous.


This was in a tank at The Seas in EPCOT.  Pretty sure those are some sort of eel, just snaking in and out of the rocks.  Ewwww...but cool.

This is how we ended the trip, pretty much.  The rain forced us inside one of the Innoventions pavilions at EPCOT, and the boys did some father-son video gaming while I fed Carter.  Notice Jacob's pirate bandanna that he got from the resort pool.  What you can't see is that we were all so wet from the miserable rain, and the ponchos couldn't even save us!
Always nice to look back, but I guess I should be thankful that I'm happy to leave that particular vacation in the past!  What a year...

Monday, September 15, 2014

The Leaning Tower of Artwork

In the corner of our basement office lived my dirty little secret.  There was a giant pile of Jacob's artwork, dating back to when he was six months old.  Mixed in were cards from birthdays and other various keepsakes that I didn't have a spot for yet.  Once Carter was born, some of his keepsakes ended up there, as well, and then his artwork started rolling in, too!  Before I knew it, it was out of control.

More than three years ago I started trying to sort through it.  When Craig went to the Czech Republic for 10 days, I had evenings to play with and I gave it a shot.  My plan was to take pictures of everything, ditch the easy stuff, and keep anything (for now) that I thought was cool.  Well...I only got through 32 pictures or so (probably averaging about four pieces each) before I ran out of time, and there everything sat for three more years, with the pile getting bigger and toppling over from time to time.  And it drove me nuts.

But I needed time to work on it, and it never happened when I wanted it to a couple times earlier this year.  But yesterday when I was home alone I got going.  It took me most of the day, and some time tonight, but I have finally conquered the giant pile.  All of Carter's stuff is set aside in a bin for him.  I do still need to sort through it and start photographing his stuff, but there's less of that so I know I can manage it.  Jacob's stuff was intimidating, but I got through it, one piece at a time.  It was fun to relive the journey through daycare and his first year of school through his artwork.  I wish I would have been better about documenting what was from when, but I can sort of guess based on stuff that was grouped together or what he was drawing at the time, or even by the handwriting from his teachers.  His skill level picked up considerably when he was four, so that cleared some things up, too.

All in all it took 95 pictures to capture all of the artwork.  Two garbage bags' worth of that has been dispatched.  I kept a small pile of his work, as well as another pile of abstract art that I want for our easy-change picture frames in the living room.  The pieces I kept of Jacob's ranged from early finger paints to random projects that turned out cute, and on to some typical drawings of sports fields that became the norm in the past couple years.  I also kept a lot of his Kindergarten writing--little books and his classroom journals.  Someday maybe those will go, but I can't go through them just yet.

Here's a sampling...





It's nice to have it documented, and even nicer to have it sorted and most of it on its way out of the house.  It's wonderful to think of how Jacob has progressed over the years and see all of the things he's learned about and illustrated in his crafts, but I know there's much more to come.  And we'll get to go through it all again with Carter, too.  Let's just hope I can keep up with it better this time around!

Sunday, September 14, 2014

Forever Friends

I've been lucky enough the past two weekends to spend time with two of the best friends I have ever had.  In fact, two weekends in a row I got to spend time with my friend Heather, who I've known since Kindergarten.  We went to the art gallery together on my birthday, and then last weekend she came to stay here for about 24 hours from Friday to Saturday.  We spent a lot of time chatting and reminiscing about our lives now and the 30+ years of friendship under our belts.  I didn't get a chance to post this earlier, but here's a picture from when Heather took Jacob on the carousel at the mall...
In case it's hard to see, Heather is peeking between Jacob and the horse's head.  And yes, Jacob is wearing the hat he got for this birthday...
This weekend I got to see my college roommate Mary.  We've now officially known each other for half our lives, which is crazy, since for so long, we were such good friends despite only having known each other for a short period of time.  Now it's been 18 years, four of which included a lot of togetherness in a 10'x12' (-ish, or less) dorm room.  Being together at such a pivotal time in our lives definitely accelerated the friendship, and in each other we found our other half...or, as we chose to call it, our shared "third brain".  Because, after all, we were each too smart to share a single one!  We had so much in common, found a mutual love of nail polish, and ventured together into the world of Intervarsity Christian Fellowship, which changed our college experience completely.  Over the course of college, we became rather inseparable, to the point that people were surprised when they'd see one and not the other.  I always felt like, from high school on, that the people I considered my best friends never really considered me their best friend back.  Other people always seemed to have someone else who was their go-to person.  Even early on in college Mary had two very good friends at home, and it took a while before it was clear that we were really each other's best friend...but finally reaching that point was so enjoyable.  We were so fortunate to have been placed together by Residence Life (or, rather, GOD), and it's clear to both of us how unique this relationship truly is, all these years later.  We know that no matter how long we're apart, even when communication is minimal, when we get back together, we're right back in the groove.  Being with Heather is much the same, and I feel blessed to have two friendships like that...and to have two weekends in a row to enjoy that. 

Anyway...back to the recap.  I worked a half day on Friday and had a short detour for a (routine) doctor's appointment.  Once I was done there I made a quick stop at the mall on the east side of town and then headed toward Syracuse.  I got there around 4pm, and after settling in a bit at Mary's apartment, we headed out for dinner--yummy 2-for-1 chicken parm that we'd both been looking forward to all week!  I'll admit I was pretty excited to eat whatever I wanted without worrying about gluten.  I appreciate that opportunity to eat almost anywhere without worrying about what they have or how they prepare their food.  We manage pretty well most of the time, but I won't lie--it's tiring sometimes and getting a break from that was really nice.

After dinner we headed downtown to the concert that prompted the visit. 

The theater is a classic old theater full of gilding.  Gold everywhere!  It reminds me of pictures I've seen of a couple long-gone theaters in Rochester.  One of them was a Loews theater, just like this one appeared to be, based on some lettering over one entrance.  I was excited to see it and hoped that my new camera could do it justice.  The front lobby didn't go particularly well, but I wanted to include this here to try to show the grandness of it...

The part of the lobby leading to the seats was a little brighter, so I think this worked a little better...

It was breathtaking, even though it's apparent that it's not what it used to be.  We found out the place is in some pretty serious debt, so hopefully they'll be able to turn it around because it's too cool to lose.

The concert was fantastic.  We were mostly there to see a band called Switchfoot.  They're a Christian rock band that has seen some decent mainstream success.  You've probably heard their music as bumper music during televised sporting events, or maybe even on the radio.  I actually saw them way back in college as an opening act when they were only a couple albums into their career, and I loved them back then.  Still, I could never decide on which CD to buy first, and it wasn't until a handful of years ago that I got one of their later CDs as a gift and fell back in love with them.  I've wanted to see them in concert ever since, and they finally came close enough!  On a weekend!  In Mary's hometown!  Yay! 

The opening act was another interesting band called Gungor.  They're a very unique Christian group that doesn't sound like most Christian musicians.  They've got a little electronica, awesome voices, and a unique presentation.  I had a couple of their songs for free through a site I frequent, and while the songs didn't wow me initially, I did enjoy their concert and look forward to listening to them again. 

When the main act came on, it was awesome to hear their songs in person.  They're such a fantastic rock band and I knew they'd be great live.  The lead singer has such a unique voice and I wasn't sure about how it would sound live, but it was identical.  Perfection.  They even played my favorite song! 

Out in the crowd!


On our way out of the theater, I took a couple more shots of the classic features...
Stained glass exit sign

Amazing light fixture!
We finished the night at Starbucks with a couple of Mary's friends (and who knew, they have packaged gluten-free treats there, including their awesome flourless chocolate cookies!  Good to know!), and stayed up late watching reality TV and chatting. 

Saturday I slept in a bit (no kids, after all!) and then we just hung out all morning until we could decide on somewhere to go for lunch.  We have always been terrible decision-makers, and some things never change!  She wanted me to be able to pick the ideal gluten-filled foods of my choice, and I was just so excited to eat at different places that I had a hard time figuring out the best of the best.  We settled on Tully's, a local chain that has expanded to Rochester and Buffalo.  Their food is awesome, though, and we ended up sitting there for more than two hours, just watching the end of the Syracuse University football game and chatting. 

Eventually we headed back and I did some research for my stop at the outlets on my way home.  It was hard to leave, but I was looking forward to doing a little shopping on my way (unsuccessful) and getting back to a quiet house (more on that in a bit).  Along the way I decided to do a random, quick stop at somewhere I've always wanted to go.  There's a spot here in Rochester, Cobb's Hill, that offers a great view of the city.  I'd never been up there.  The sky was cool on my way back, lots of clouds with fiery orange peeking out behind them, and I decided to try to capture the remains of the cool sky with the city lights.  I wasn't sure what the lookout point would be like and I wanted to be safe since it was dark, so I drove up to the reservoir and eventually drove past a break in the trees.  I'm not even sure that's the normal spot that people take pictures from, but I stopped the car, rolled down the window, and took a few shots using some of the different settings on my camera.  Here are the results...


Farther view with the sky in the background

Closer view...my building is the white one in the middle.  Xerox is to the left (black), Bausch & Lomb to the left of that (pointy top).  To the right of my building is the rebuild of Midtown Plaza and the HSBC Building.

I came back home to a 65 degree, empty house.  It's been cool for the last couple days and the house is cold!  I'm waiting to turn on the heat until there are more people here than just me.  Where are they?  Well, Craig took the boys to Buffalo today for his brother's birthday, and they'll be back sometime on Sunday.  I'm missing them a lot, especially all the little things Carter does that perk up my day.  I miss them all, obviously, but so much of what Carter does is so cute and so uplifting, and it's weird not having that to cheer me up at any given moment.  I don't miss all the yelling and constant cleaning up and infinite mom checklist in my head, but life is definitely not the same without them.  I don't like missing things, especially on weekends when I usually make up for not seeing them all week, but I know this is a unique situation so I'm just trying to appreciate it while it lasts.  It's not often that I get time like this, so I'll make the most of it and hopefully be a more chilled out mom by the time they get back.  It was definitely strange being gone, though, and strange coming home to a quiet house.  As I typed this, a couple times the TV got loud and I momentarily felt compelled to turn it down so the kids didn't wake up.  But of course, they're not here.  Weird.

Anyway, it was a great couple days and now I need to be productive until the boys get back!  I feel so lucky to have had so much friend time lately.  It makes up for not having friends like that here in town, but definitely makes me wish for more!