Ruth

I had a visit from Ruth Huffman two weeks ago. I have met Ruth before on a couple of occasions socially, but that was really quite a long time ago, before the girls were born and when Amanda and I were still living in the old house and prone to going out to the occasional party.

Ruth is a very talented writer. She writes for the Advocate, which is a local monthly paper. Every month, Ruth goes around the local area and sits down with someone of interest and has a rather protracted conversation that she then turns into a piece for the paper. I think through my sister-in-law Renata, Ruth decided to come and pay me a visit about 10 days ago to chat.

Ruth dips tobacco. For anyone outside the US, just think of an old western where someone is spitting into a spittoon; that's what Ruth does, although she would spit into an old glass jar. At first, it can be unsettling, because there aren't too many women who dip tobacco, but I think it suits Ruth right down to the ground.

We had a great conversation. She was here for about two hours, and we really just tried to delve as deep as we could into my situation: my situation before ALS, my life when I was diagnosed, and my life since the diagnosis and how I've tried to live since then. It's obviously been a hectic year. More hectic than you realize until you look back on it and reflect on all the things we have done. We also spoke about the emotional side of things, the things that prey on my mind, things I worry about, and things I don't worry about. I'd love to tell you it was a nice, simple conversation, but there were at least a half dozen times when I got pretty emotional, pretty upset. To her eternal credit, Ruth put down the digital recorder and even came over and gave me a hug at one point, which I think helped me through.

In all, I think it was a really good experience. It's bizarre... it's never easy to talk about it... the hardest thing to talk about is the girls. Talking about the girls will get me quite emotional and upset, but at the same time it's like getting a bit of a weight off your shoulders. Even if it's just for a minute, or an hour, or a day... it's beneficial. In the long run, I don't think that ever means I will be okay with it, or be okay about thinking about the girls. It seems to release the pressure, if only for a moment.

So, for those who live locally, you should look out an interview in the January edition of the Advocate. For those who live overseas, I'll see if I can get a copy of the article transcribed, and we'll throw it up on the blog here before too long.

Birthday boy

Jake turned three on December 6th. Happy birthday Jake.

We just received some pictures of Jake is a puppy, and I thought I would share them.

My Bride

We spent most of Friday and Saturday celebrating Amanda's birthday.

With the help of Amanda's good friend, Lauren, I was able to find coverage for Amanda's afternoon classes. The high school principal, Mr. Jeffries, helped to set up the surprise by insisting that Amanda joined him for meeting during her lunch break.

Amanda appeared in the principal's office, and we surprised her with the news that she had the rest of the day off and that we -- David, Phyllis, and I -- were taking her out for a birthday lunch.

Amanda was able to squeeze in a rare weekday nap before the girls came home from school with David and Phyllis. We had a fairly quick turnaround to go back into town, grab a bite to eat, and make it to the movies in time for The Hobbit.

Just as Mr. Jeffries was keen to help, so was Josh, the manager of the movie theater. I went in the previous day to purchase advanced tickets, and inquired if it was possible to reserve specific seats. Josh said he would dig out a velvet rope and hold some seats for us.

We were greeted at the door, and ushered to our seats. They weren't exactly hard to spot: our seats had been cordoned off with a twisted vine of flowers, and dried petals were sprinkled on the floor.

Earlier, as we drove into town, Amanda had congratulated me on making her feel special. Since she had no idea about our reserved seats -- neither did I, as it turns out -- I simply smiled, and said that I was glad she felt special.

I am fairly certain that her flower-covered seat took that special feeling to a new level.

We enjoyed it cozy day at home on Saturday, before heading over to Amanda's mom's house for dinner. Lauren and Josh joined us for a wonderful meal with Claudia and Renata, and we had a great evening.

I'm so happy I was able to make Amanda feel special, because that's exactly what she is to me.

Jonsi

Spirit

Mickey

This story began a year ago when my friend Richie asked me to help him move some things in the VMI men's soccer locker room. I was pleasantly surprised to see some of the guys milling around the locker room, and a few parents were there as well. Given that it was the end of the semester, I thought that everyone was gearing up to head home for the holidays.

To my surprise, the entire team was in the locker room. Mr. Rochow, Mr. Mallon, and Mrs. Seinfeld -- all parents of boys on the team -- were also there. Before I knew it I was the center of attention, as Mrs. Seinfeld presented me with a check that the VMI soccer family and raised for my family. Mrs. Seinfeld, gracious as ever, said that everyone hoped the money would allow me to take Amanda and the girls to Disney World.

At that moment I was so blown away by such support and generosity that I was stuck for words. I think the best I could do was to say, "We'll do everything we can to create some special memories with this money, and I can't thank you enough for making it possible."

We loaded up the minivan and headed to the airport to begin our trip to Disney on November 9th.

The girls and I were joined by Jake and my sister-in-law, Renata. We made the executive decision, early in the planning process, that we would need backup to help pull the trip off!

Our journey down to Orlando, while long, was fairly uneventful. Jake snoozed on the flight, and Cora watched a movie. Louise, squirming and slightly discontent, was testing Amanda's patience fairly well. Still, considering that it was the first time that Jake, Cora, and Louise had ever been on a plane, we did pretty well.

We arrived in Orlando later that evening, and were soon at our hotel. Amanda had arranged for us to stay at the Animal Kingdom Lodge. I don't know what I expected of the hotel ahead of the trip, but it was hard not to like it the moment you walked in the door.

Given the late hour and the amount of time we had spent traveling, we ordered room service, bathed the girls, and all crashed for the night...

The following morning, we explored the hotel before grabbing some breakfast, and heading out for the day. Our destination was Downtown Disney. Cora had an appointment at the Bibbidi Bobbidi Boutique! For the uninitiated, the boutique transforms girls into their favorite Disney princess. Cora chose to be princess Belle. After changing into her princess dress, Cora sat down to have her hair styled in the regal fashion of her choosing. Jake and I kept Cora company, and got to witness a flurry of activity with Cora's hair. A dab of makeup completed the makeover, and princess Cora was ready for the day.

We made our way to the Magic Kingdom, where we were met by Sarah. Not only did Sarah provided invaluable guidance as we prepared for the trip, she helped us with access to various parks and events, and had a surprise in store for Cora.

Just inside the entrance to the Magic Kingdom is the Town Square Theater. Sarah led us into the theater where we were greeted by two cast members, and taken backstage.

To our utter surprise, Cinderella, Jasmine, and Rapunzel were posing for photographs and signing autographs. Princess Cora spoke with each of the other princesses. A brief moment of sheer amazement at meeting the princesses was soon replaced by quiet determination, as Cora was overflowing with questions and comments for the princesses.

Having posed for pictures, collected autographs, and held court, we all followed Cora toward the exit. But before we could leave we were asked to step through the door marked, "Cast Members Only". My head was still spinning from meeting the princesses, so I really didn't pause to wonder why we were waiting in the hallway...

There was a firm knock on a door a few yards away, and several people invited Cora to investigate. As Cora reached the door, it swung open, and she was greeted by Mickey Mouse.

Cora and Mickey hugged, before Mickey held Cora's hand and led us all to his rehearsal room.

The next 10 minutes were simply wonderful. Cora and Mickey posed for pictures, exchanged several hugs, rubbed noses, and hugged some more. I think the sweetest moment came when Mickey told Cora that he loved her. Cora responded with a smile that seemed to indicate her heart might melt. After a pause, Cora said, "But Mickey, what about Minnie?"

That particular moment could be my highlight of the Disney trip.

We spent some time meandering through the Magic Kingdom, before making our way to Cinderella's Castle for dinner. We enjoyed a wonderful dinner in the great room at Cinderella's Castle, and met several other princesses.

We decided we would head back to the hotel after dinner. We timed our departure, rather fortuitously, perfectly to see the Christmas lights being turned on. I think a hardened criminal could go to Disney and be blown away by the nighttime spectacle!

The next day, I took the morning to recharge my batteries after two long days of travel and fun. The girls all visited Hollywood Studios. I'm told there was an awesome performance of Jake and the Neverland Pirates. So good, in fact, that Cora was scrambling for gold doubloons!

In the afternoon, we all went to Epcot. We read in several places that the week before Thanksgiving is the second most quiet week at Disney. If that's true, then I'd hate to see it on busy day; Epcot was packed. Admittedly, Epcot was hosting the popular Food and Wine Festival. We made our way through the crowd, and walked around the lake with the smell of some delicious food wafting in the air.

It was just as well we made it to the French-themed restaurant, Les Chefs de France, when we did; I was getting ready to eat my own face!

My self-mastication crisis averted, we enjoyed some fantastic food, fabulous wine, and a relaxing time.

We had planned on going to the Magic Kingdom that night to take in the fireworks display, but we spent so long eating dinner that we decided to stay at Epcot. It turned out to be great decision. Not only do we have enough time to sit and enjoy a pint at the pub in the UK section, but Epcot held their own fireworks display a short while later.

My parents arrived that night; reinforcements!

The following morning we enjoyed a relaxing time at the pool. Louise splashed in the shallows, and Cora made the most of the water slide (so did my dad!). Meanwhile, Renata bid farewell and made her way to the airport. Renata accepted a last-minute invitation to help us with the trip, and we simply couldn't have made it through those first three days without her. Thank you Renata!

That afternoon, we ventured to the Animal Kingdom Park. Aside from the fact that they must surely have animals, I really didn't know what to expect. We had a wonderful time...

The focus of the park appeared to be a town square built to replicate a small African town. We paused to enjoy the music of a band playing in the square, before heading off for a safari.

The safari ride was long and bumpy, but totally worth it. We must've seen close to 50 different species, all while our driver educated us on conservation.

We were all still talking about how good the safari was, when we made our way to the Lion King Show.The show was amazing, with acrobatics, live singing, appearances by major characters from the movie, and a priceless moment of audience participation...when offered, Cora literally jumped at the chance to get up and dance on stage.

In an attempt to learn the lesson of the past three days, we decided to go back to the hotel and conserve some energy. Not before jumping on one last ride - the Kali River Rapids! My Mum stayed with Louise while Cora, Amanda, my dad and I proceeded to get soaked on the rapids.

We ate dinner at an Indian restaurant in a neighboring hotel that night. We weren't surprised when Louise fell asleep in the middle of the meal. If it weren't for the delicious food, I think we all could have followed suit.

Tuesday was our last day at Disney, and what a day it turned out to be. While the girls hung out at the hotel, my dad and I made our way to the Disney race track. For a reasonable fee, Mickie would let guests drive any of a number of supercars. My dad drove a Lamborghini Gallardo LP560, while I got to enjoy a Ferrari 458 Italia. My dad and I both agreed that it was an exhilarating, addictive experience.

After the burning some rubber, dad and I rendezvoused with the girls at Magic Kingdom. After inhaling hotdogs for lunch, we rolled up our sleeves and prepared to make the most of our time...

Amanda and I jumped on the Space Mountain ride. I guess they call it "Space Mountain" because "Whiplash in the Dark" didn't attract many takers. All joking aside, it was great fun.

We met my parents and the girls at a new section of the park called Fantasyland. By the time we got there, my Mum and Cora were taking a seat on a Dumbo-themed carousel. There were many Kodak moments to follow; of both Mum and Cora, and the spectators.

Cora and I enjoyed a quick spin on the Goofy's Barn-burner roller-coaster. It was a lot of fun, and perfect for Cora -- just inside her comfort zone.

The whole family then took a ride on the Disney express train. In all, it probably took 25 minutes to do an entire loop around the Magic Kingdom. The ride was a lot of fun, but it also allowed us to do an activity without being active!

When we got back to Fantasyland we took the opportunity to meet Goofy and Donald. Jake wasn't sure what to make of a dog that only used two legs! Still, in keeping with the entire trip, Jake was exceptionally well behaved.

As we made our way through the Magic Kingdom, my parents seized the opportunity to take Cora and Louise on a carousel ride. Between my parents and the girls it's hard to say who wanted to stay on the carousel the most...that explains why they spent 20 minutes laughing and cavorting!

The recurring theme of activities that did not require us to be active continued with a ride on It's a Small World. The boat ride takes you through one cavernous room after another, all filled with automated puppets and scenery. Even Jake enjoyed the ride.

Hungry, yet conscious of our dinner reservations, we stopped for a snack at Liberty Square before taking in this show at the Hall of Presidents (inactive activities!).

Just before we made our way to the Crystal Palace restaurant, Amanda joined me and rode Splash Mountain.

The folks at Crystal Palace were very accommodating, and found us a table fairly quickly. The buffet-style service was exactly what we needed. We were spoiled for choice and the quality was exceptional. To make things even better, Winnie the Pooh, Tigger, and Eeyore all came by and paid us a visit at our table.

Our timing was perfect: we finished our meal and made it outside at just the right moment to pick a great spot to watch the fireworks.

I could go through a laundry list of superlatives to describe the fireworks show. As clichéd as this may sound, it was simply magical.

Needless to say, we didn't have any trouble falling asleep that night!

The following morning my parents and I took the girls to the pool while Amanda did her best packing our bags.

We bid farewell to Disney and my parents at lunchtime, and headed off to the Orlando airport. As with Renata, we are extremely thankful for my parents presence; I think it allowed us all to enjoy the trip just a little bit more. Thanks Mum and Dad!

We simply cannot thank the VMI soccer community enough for making this trip possible, and their pivotal role in helping us create so many wonderful memories.

Better Than