Tuesday, August 21, 2018

29 hours


We had a whirlwind of a trip to Boston to see the Red Sox!  29 hours, 500 miles, one hotel, much walking and taking in the hubbub of Boston, lots of fun and friends, and tons of memories made.  Oh and one Red Sox game lost :(



It's always on our list to go to a Red Sox game every summer, and we always try to head down to see the Reillys once a year.  Last game we went to was 2 springs ago when we headed down to hang with the Reillys and attend a game in a section that Connor's school purchased.  And, maybe that was the last time we saw the Reillys?  I know we didn't go down last summer because things were crazy for them, especially with Tim heading out for college.  Anyway....it's always on the list to do these things but they don't always happen.

This year Cure SMA had a section of seats for an August game for SMA Awareness.  I really wanted to go.  Karen said they weren't able to go for a variety of reasons so I didn't pursue it any further.  Then, out of the blue, the Thursday before the Monday game, Hannah from Cure SMA asked me if we were still interested in going.  A company called Health4Brands had donated 10 tickets to Cure SMA in their corporate box!  That was very intriguing to me :)  We figured we'd get a hotel near Fenway, park and walk to the game and make it a special experience for Casey (and us). Asked the Reillys if there was any way to swing it and when Karen heard that there was a private bathroom--she was in, lol.

Lots of figuring out.  Finding hotel.  Worrying about parking our oversized and over tall van.

Found a hotel near Fenway.  The Inn at Longwood Medical. Nurse Julie agreed to go with us.  Aunt Chris was able to come, too, and attend her first Red Sox game!  She's been a fan for years.

Casey was pretty excited.  We picked out a bunch of Red Sox tee shirts and long sleeved shirts, picked his favorite hat.  Gene even got the oil changed in the van :)

The trip down was pretty uneventful.  Casey was somewhat cooperative.  It got a little hairy driving when we were in the heart of Boston but I had Julie sit up with Gene and navigate.  He can't yell at her, ha ha.  Navigated our way to Aunt Chris's hotel.  By the time she had made her reservation, our hotel was full!  Found our way to our hotel.  Gene dropped us off with the luggage and he went to find the lot we had reserved for the van.  SpotHero app was suggested to us and it was great!  Found a reasonably priced lot where we could park overnight.

Julie and I made our way to the room.  SMALL but clean and we were able to arrange things to make it work for Casey and his equipment.  We changed and got ready.  We wanted to head over to Fenway ASAP to take in the atmosphere and explore a bit.  Well, Gene's spot for the van was a little farther away.  So we decided to head out ourselves and meet him at Fenway.  We SHOULD have thought to give him his ticket but we didn't think of it.  So we had a fun walk to Fenway.  It was only about a 15 minute walk.  The sidewalks in this part of Boston aren't the smoothest but part of the adventure was navigating the streets and the bumps and ruts and people watching as we went.

We made it there and waited and waited.  Aunt Chris was picked up at her hotel by our friend, Peg Bailey.  She knows Boston,  and especially Fenway, like the back of her hand.  So Chris was treated to seeing some of the cool parts of the park.




Finally Gene made it!  We met up with Chris and Peg.  Peg brought us to meet Luis Tiant.  He's a famous pitcher who spent many years with the Red Sox.  He hangs out and does meet and greets with fans during home games.  We waited on line to meet him.  He actually had to get up and come over to us since the area where he was was not accessible. He came and took pics with us and Casey actually didn't shut his eyes!!



Then Peg ushered us towards the elevators.  Before we could even get on the elevators, Nurse Nancy had and her daughter and grand kids found us!  We knew they were going to be at the game, too, but didn't really think we'd get to connect.  So fun!

Went up to the third floor where all the suites are.  We were ushered in and found our room.  Wow!  It was a shotgun style room with TVs on the walls, pictures of all sorts of Red Sox moments, and couches.  There was an area with a sink and a fridge.  The fridge was filled with sodas and beer and wine!  Down one wall there was a huge array of food:  Fenway franks, sausages, sliders, chicken strips, hot pretzels with cheese, popcorn, pita chips and hummus, and pizza!  All sort of condiments available!  Gene's dream, lol. AND, the bathroom!  Large accessible bathroom with a TV so you didn't miss a moment of the game!  Out front there was a section of seats to view the game, of course!  We were able to fit Casey's chair on the top of the section to one side.






We met some awesome people!  Our hosts were very friendly and accommodating and interested and interesting.  I am still not sure who everyone was.  It was pretty noisy, even inside the suite, since Red Sox fans are very enthusiastic!  So we talked with everyone, but it was still hard to hear everything said.  I know these folks are committed to Cure SMA the families, and to ultimately find a cure.  The company that donated was Health4Brands, but the parent companies, I believe, are ARNOLD and HAVAS and they somehow have a connection to AVEXIS.  If anyone out there knows all the connections, I'd love to know!!


So we spent time watching the game, eating, and chatting, and FINALLY, the Reillys arrived!  Oh, wait, first Bill's brother and niece arrived..THEN Conner, Bill and Karen.  Conner got situated inside the box, but he could kind of see out since it was open to air, but there were stools and a built in table in front of him.

More chatting and eating and just enjoying being in the moment.  The Red Sox didn't do so well.  Casey was very sad for Rick Porcello and kept saying so on his T.  He didn't pitch his best.  We had some hits but nothing that got us very far.  The darn Indians ended up winning 5-4.  We thought we'd make one of our infamous comebacks but, alas, it didn't happen.

Then, the ice cream cart came!  My dream!  There was a choice of vanilla or chocolate ice cream and all sorts of toppings.  I ended up with vanilla ice cream, caramel, oreo cookies and crushed m&ms.  Delicious!  Oh, and ice cream was served in a Red Sox helmet, of course!


Next surprise was the 2013 World Series trophy, for real!  I didn't realize how special it was for us to touch it and hold it until I saw that they only let the parents get that close to it.  Poor Peg, the biggest fan, wasn't able to even touch it with her pinky!!!  I mean, I knew it was special and I could tell that the handlers were nervous...We ended up leaning the trophy on Casey chair arm and then I held it.  The trophy is 28 (or 23) pounds and they were worried about droppage, I'm sure.  Casey didn't cooperate, but I didn't even care!  Everyone was watching and talking and exclaiming and snapping pics so I knew there was no way Casey would open his eyes.  So exciting!










Conner, Karen, Bill and the trophy!!

We didn't close our eyes!



All of us girls trooped in for a picture!




Peg and I snapped a selfie for Debbie Cuevas :)




One of the things I always (well, it's my third time) look forward to at Fenway is the 8th inning singing of Sweet Caroline. Colin loved Sweet Caroline and would sing away the best he could when he heard it.

Oh, and I had my first alcohol of the year.  I haven't been a drinker in a long time.  It just doesn't interest me.  But, being at Fenway I had the hankering for a beer :) so I had a Bud Light.  Not very exciting but Gene knows I'm a lightweight and don't care much for specialty beers (they had Sam Adams and some others) so I had the Light.  I think I drank a whole 2/3ds!!  Lol.

So, all in all we had a grand time!

After the game we hung out a bit, said good-bye to our hosts, Peg and the Reillys and walked home.  Peg walked Chris back to her hotel as ours was booked by the time she called for a room.  The walk home was kinda fun.  The whole area around Fenway is like a Disney street but all about the Red Sox instead of Disney characters.  It was so nice to be able to walk to our hotel instead of trying to navigate the streets of Boston after a Red Sox game!

We did a quick saline neb on Casey, got him ready for bed and we all eventually sacked out.  Phew!

The beds were pretty squishy but Casey slept okay.  We were all up pretty early on Tuesday.  Gene went and got the van while Julie and I packed up.  Julie got us McDonald's breakfast while I sat with Casey.  He came and picked us up and then we headed over to Chris's hotel and got her.  Then we had the drive back, poo.

Some random pics:





















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