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...

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