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Fundraiser for Ben, Plus Ben Visits Princess Fairytale Hall

     
It has been two weeks since my last update, and I do appreciate everyone's patience in waiting to hear the latest news. To catch up since my last blog post:  Ben wound up spending three additional days at Arnold Palmer hospital before finally being released on Monday, September 9th. He was not released because he was all better, he was released because he was eating and drinking enough to no longer require IV fluids, and his pain levels had been reduced to a level that could hopefully be managed at home with his mom.  The simple truth is that, depending on your definition, "all better" either won't happen until probably January or else never at all. He still has a very large stone blocking his pancreatic duct, although the small stent has allowed his pancreatic fluids to drain. He will require at least two more endoscopic procedures in order to get that particular stone out, and then he has multiple other stones more deeply embedded in his pancreas which cannot even be reached until the big one is out. Ultimately, it is very likely that he will need to have major abdominal surgery to have his pancreas removed, we just don't know how far into the future that eventuality will occur.

Benjamin's mother exhausted all of her paid leave in the first week of September. She is currently on unpaid leave, by way of the Family Medical Leave Act. That means that she eventually has a job to return to, but she has no income until that happens. Ben was out from school the entire week of September 9th - 13th, requiring his mom to continue to provide full-time care. He attempted to return to school this past Monday, and only lasted three hours before the school called saying he needed to go home. There was some thought of trying another day of school later in the week, but he never had a decent night's sleep or appeared to be pain-free enough to allow it. Functionally speaking, his mother simply cannot return to work until Ben is reliably capable of returning to school full-time. The best-case scenario is for her to lose a full month's pay. It is entirely possible that she will wind up needing to stay home and care for him through the end of the year, until all of the pancreatic stones are removed. That would be four months' pay gone, for the single mother of a disabled child. To put it bluntly, this is a financial apocalypse in even the best case.

If you would like to help, the simplest way to do so is to go to https://fundrazr.com/campaigns/2bMD5 and make a donation to "Help Ben Fight Atypical Cystic Fibrosis". All donations go directly into Ben's Special Needs Trust, and I am more than happy to provide trust information to anyone who wants to verify its validity. Donations can also be made directly at any branch of Trustco Bank, just send me an email at ron@jamesaxler.com and I will be happy to provide you with the account number and trust information. If you would like to purchase autographed copies of my book, those funds also go into the trust right away. Purchasing print or digital copies of the book through Amazon or other online retailers also sends the proceeds to the trust, although those payments tend to take 90 days before they make it into the trust account. Any and all donations are very gratefully accepted. 

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In other news, Ben surprised me by asking to go to the Magic Kingdom this morning. Despite a long and difficult week with his mom, he seemed to be perking up for the weekend. I was skeptical, and I was fully prepared for him to only last about twenty minutes at Walt Disney World, but he seemed to be in good spirits and generally pain-free at the time, so we gave it a shot.

He was laughing and chattering up a storm as I parked the car, and carried on with his good mood all the way through the tram ride and then on to the monorail. He specifically asked to go visit the Fantasia store first, so we took the resort monorail and got off at the Contemporary. He bounced right out of the monorail and down the escalator, and then spent a solid twenty minutes at the Fantasia store taking pictures of the magic broomsticks that line the top shelves throughout the shop. When he was done there he took me down to the hotel lobby, and then as usual he stopped for a break on the comfy couches there by the television that plays cartoons on a loop. Then with a giggle he took my hand and led me to the walkway that goes to the Magic Kingdom.

On the walk over I watched him intently for any signs of pain or lethargy, but he continued with his normal chatter and a huge smile on his face. I warned him that when we got to Fantasyland the construction walls would be gone, but that his ride was not there anymore.  I honestly don't know if he understood me. In any case, we made it into the Magic Kingdom with very little trouble and he began is normal meander up Main Street.

It actually took about two hours before we ever made it into Fantasyland, because he wanted to stop at several places along the way up Main Street and then we got some lunch at Cosmic Ray's. With his belly full, he went directly to his current favorite spot over by the Teacups for a while before finally venturing towards what used to be Snow White's Scary Adventure. He was excited as we came around the curve from the Pooh area and he saw the construction walls were gone. For my part, I was sincerely worried at how he would react. Interestingly, he did not get upset at all. He stopped in front of the new Princess Fairytale Hall show building and contemplated the new facade, and then took my hand and let me to the entrance.

I have to say he was very, very patient waiting in that line. The posted wait time said 30-35 minutes, but it wound up being well over an hour. There are two sides to the hall, each with a separate line. One always has Rapunzel while the other always has Cinderella, and then each always has a visiting princess. I picked the Rapunzel line specifically because the Cast Member out front told me she thought Snow White was there right now. The entire time we were in the line, Ben was looking around at all of the decorations and laughing up a storm. One person waiting in line behind us commented that Ben seemed like the only person there happy to be waiting. As the line crawled I seriously contemplated wavering on my choice not to use the Guest Assistance Card to go in through the Fastpass entrance, but honestly it was me that was bothered by the wait and not Ben. What kind of example would that set, if I used the card for my convenience while the person it was supposed to be helping was completely happy waiting?

Sadly, by the time we finally made it in to meet the princesses, Snow White was nowhere to be seen. Ben met Rapunzel, whom he did not recognize and had in whom he had no particular interest. That being said, he was at least polite about being introduced to her. The other princess was Jasmine, and although Ben recognized her she was certainly not anyone he was jazzed about meeting. What did catch his eye, though, was a Snow White storybook set out on a pedestal at the side of the room in honor of the ride that used to occupy that space.  He went and looked at it for a little while before we finally left the hall.

After exiting the building, Ben surprised me by taking my hand and asking to go back again. He was still in a good mood, still holding up with no obvious pain or lethargy, so we went back to the other line to meet Cinderella and Aurora. He was much happier about spending time with those two (particularly Aurora, he's been on a Sleeping Beauty kick lately).

By the time we finished visiting all four princesses, plus some additional time spent going to a few other favored locations in the park, he finally told me he was all done and ready to leave. I figured he must be getting tired by then, and was probably feeling some abdominal pain from all of that activity, and so we exited the Magic Kingdom and returned to the car.

All total we spent nearly five hours at Walt Disney World, which was about 4 1/2 more than I ever expected. Surprisingly, since we have been back home he has retained his cheerful mood and has not taken any naps. I don't know whether today has been just a short-term burst of energy, or a sign that maybe he has finally turned a corner, but I am hopeful. I will be very keen to see how he sleeps to night, and how he looks and feels tomorrow. Perhaps on Monday he can attempt school again, at least for a partial day. Here's hoping.

1 Comments:
melissa buck
Good morning -
its been awhile since your last update and I just wanted to say that im hoping all is well with ben and your loved ones.
Missy

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Benjamin's Lullaby

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About Shmoolok

The word "shmoolok" is a mashup of the longtime computer handles for my wife and myself ("Shmooby" and "Lokheed", respectively).

I originally created this website to be a place for my family to connect, but it has since grown into something a little different.

As for me -- I am a father, a husband, a son, a software developer, and a writer. On any given day I am not sure how good I am at any of those particular things, but I do try my best.

Thank you for visiting my website.

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