MAGIC KINGDOM (Friday, 2/20/09)

By the end of the day today I realized that there are two elements of our days on this trip - the actual day and the events that occur, and then there is the emotional part of the day, the part that overwhelms me and makes me tear up and makes my heart swell with gratitude. I'll just start by saying that Jonah got sick again at breakfast today, but I'm only sharing this because, after seeing his transformation throughout the day, it points out how amazing kids can be and how truly magical Disney World can be in the eyes of a child.

We all went to breakfast at Tony's inside the Magic Kingdom (opened early especially for BBA), where Donald Duck, Daisy Duck, Goofy, Minnie Mouse and Mickey Mouse all came to visit the kids. It was awesome seeing their reactions and excitement! Right after this is when Jonah got sick, but as a testament to how kind everyone is being to us, our waiter immediately went out and bought Jonah a new outfit to wear. I gave Jonah the option of going back to the hotel for the day or at least a little while, but he wanted to stay at the park. His mind was SET on wearing his Buzz Lightyear outfit on the Buzz Lightyear Space Ranger Spin ride.

After breakfast, we had a group photo taken in the rose garden in front of Cinderella's castle. It was here that I realized something really special about this trip - how close each family seems. Or rather, how close all of the couples seem. There are about five of us single moms, but when I look at the parents that are married, I see a bond and a closeness and a mutual kindness between them that has really impressed me. I can really appreciate the strength in a couple that it takes to raise a child with special needs, and I am so glad to be witnessing these examples of loving and respectful couples who are facing such tough challenges, yet still remain so solid. I see this in the way they talk to each other and interact with each other and just sneak off to a corner for a quick hug and solitary moment together.

Once the picture was taken, Jonah put on his Buzz costume - stripped down to underwear right there in the rose garden and got that outfit on, yes, inflatable wings too - and we headed over to the Buzz Lightyear Space Ranger Spin. That kid was on a mission. I was cracking up the whole way. Thousands of kids walking through the park, and then there's Jonah, in his full costume. And then when we got to the ride, holy crap! He flipped out! He ran through the line, and right before you get on the ride, there is a life-size Buzz talking to you, and Jonah seriously almost passed out! Honestly, was this the same kid who was throwing up 30 minutes earlier??

I think the ride was definitely everything he thought it would be and more. And for me too - because seeing his reaction to Buzz and Zurg, well, he really does think they are REAL! And he got to shoot lasers at Zurg and help defeat him, and the whole thing is REAL in his mind, and as he grows up, this memory will stay with him in some way forever. And I LOVE that!

Each family had a staff person with us for the day, and Amy Moosbrugger was with us. Jonah loved her, and by the end of the day he was only holding Amy's hand (not mine) and sitting next to Amy on all the rides (not me). And this is another reason this trip is crazy unreal - Jonah would say, "Oh, look at that toy," and next thing I knew, Amy had bought it for him. By the end of the day, Jonah had a Buzz laser shooter and Pizza Planet claw being sent back to the hotel (both too big for us to carry around the park all day), he got t-shirts, a pirate Mickey Mouse and a million other toys. Our stroller was filled with so much stuff, Jonah could barely fit in it!

Okay, but here is my ABSOLUTE FAVORITE part of the day and probably going to be for the whole trip, and Jonah's too... After an hour or two, Jonah decided he wanted to ride the Buzz Lightyear ride again. As we were walking there, we saw Buzz Lightyear himself standing on a platform signing autographs. Eyes popping out of his head, we ran over and got in line. I'm not sure who was more excited, me or Jonah! When Jonah walked up to Buzz with his little Disney autograph book, it was the moment of a lifetime. Buzz was hysterical, walking around Jonah, pointing at him and then himself, as if to be saying something about Jonah being an imposter. But then, he looked down at Jonah and saluted him, and as if on cue, Jonah saluted him back - and that's when I almost cried! The smile on Jonah's face was ear to ear, the biggest and proudest moment of his life, I think. I know for me, that mental picture will last forever. Plus, I took about a hundred photos as well!

By the end of the day Jonah was totally exhausted. I had a complete "mom moment" when he fell asleep on the bus ride back to the hotel, head leaning against my arm, as he held tightly to his brand new Pirate Mickey. It reminded me of riding the monorail back to our hotel when I came to Disney World as a kid with my family. I guess this little power nap rejuvenated Jonah, because we met everyone for bedtime stories and dessert back at the hotel...but when you give dessert to that many kids after spending a day in Disney, sitting still for stories is NOT gonna happen. They just ran all around the room, screaming and chasing each other. I can't believe Jonah was throwing up this morning at breakfast and then running around like a maniac 12 hours later. I really think "being" Buzz Lightyear today completely transformed him.

I loved today. I love that Jonah forgot all about being sick the second he put on his costume. I love that he totally got into character. I LOVE LOVE LOVE that he got to meet the "real" Buzz Lightyear, and that I got such great photos that capture his joy and excitement. I love that I got to spend such an amazing and unforgettable day with my sweet little boy at the Magic Kingdom. I am beyond grateful that we were picked to go on this trip because this is so much more than I ever could have done for Jonah on my own. Today meant the world to me. I would so much rather be here watching Jonah than be here as a child - it is priceless!

MAGIC KINGDOM (Friday, 2/20/09)

I don't even know where to start. Today started like a red carpet event (literally) and ended like a fairytale. When we were told that this trip was going to be beyond anything we could imagine, they were right!

It all began last night. Kim, Ken, Drew, Ryan and Craig came over for dinner, and why I thought it would be a good idea to give the kids cheesecake for dessert, I have no idea, but the 3 boys went wild, running all around, and Jonah kept yelling "the limo's here!" which it wasn't. At 7pm, a town car arrived to take me and Jonah to the hotel. We rode to the hotel, after being offered drinks (soda, not margaritas!), and the drive seemed to take forever, and I just kept thinking that if this drive seemed long, imagine how long the plane ride would be - waiting to get to the Magic Kingdom.

When we arrived at the hotel, I was immediately mad at myself for not having the car pick us up earlier (we were given the option of arriving at the hotel at whatever time we wanted) because it was beautiful and there was an indoor pool that Jonah would have loved. Jonah went right to sleep, but he refused to sleep in the bed. Instead he made a "bed" of pillows and blankets on the overstuffed chair and slept there. It's like he just didn't want to go to sleep for fear he would miss something and if he slept in the chair then he thought he wouldn't really be asleep (but he was snoring within 15 minutes).

This morning we went to the ballroom for what I thought was going to be breakfast and a live radio broadcast. But it was, oh, so much more!

We walked into the ballroom through a roped off entrance and a red carpet. The back of the room had the radio set up, the middle of the room was filled with a huge beautiful breakfast buffet and round tables with gold-colored tablecloths and black and gold balloon centerpieces, and the front of the room had tons of activities for the kids - a "jumpy" slide, face-painting, a photo booth, a man from the children's museum conducting fun experiments, and a dress-up chest filled with princess dresses, tiaras and boas for the girls and swords, masks and chest plates for the boys. Disney characters were walking around too - Minnie Mouse, Cinderella, Tinkerbell, Captain Hook and...BUZZ LIGHTYEAR! Jonah was getting his face painted like Spiderman (I mean, completely covered in paint - not an inch of natural colored flesh to be seen) when he saw Buzz, and I seriously thought he was going to fall out of his chair!

In addition to all of this for the kids, the moms were treated too. We all got our hair and makeup professionally done. All of this, and we haven't even left Atlanta yet! Actually, all of this and it's not even 7am!

Before leaving for the airport, Amy Moosbrugger gave each of the moms an adorable tote, monogrammed with our family name. The totes were filled with all sorts of wonderful items we'll need at Disney over the next few days, as well as some spending cash and a brand new DIGITAL CAMERA! And each child received a BBA backpack with more great items.

When we got to the airport, we were dropped off in front of a small ASA hangar. Each family was greeted by an ASA employee who knew us all by name. Jonah and I were greeted by a super sweet girl named Sarah. She had a goodie bag for each me and Jonah. Jonah's was filled with Star Wars figures, crayons, coloring books and a congratulations card. Even though I didn't open mine until later, it was filled with bath salts, foot spa treatments, chapstick, sunscreen, etc. Since we didn't have to go through long security lines (something Jonah is too young to appreciate, but something I was very aware of and grateful for), we walked on out towards the plane.

This is when I realized for the first time how unbelievable this weekend is going to be. There were two lines of ASA employees lined up leading to the plane, and we walked in between them. They were all cheering for Jonah, yelling, "Congratulations, Jonah!" and "Have fun, Jonah!" (yes, they knew his name). And they did this for each child. When we got to the end of the "tunnel," we were introduced to the captain, who shook our hands and took a picture with us. Every person we met was genuinely excited for us and SO HAPPY for us. You could just tell from the expressions on their faces and the way they spoke to us that they were thrilled just to be a part of all of this, and that meant the word to me.

At this point Sarah handed us two more backpacks. Mine was filled with small useful items like more sunscreen and hand sanitizer, and Jonah's had more of the same, but his also had a portable DVD player!! Can you believe it? A portable DVD player!

Then we walked up the ramp to board the plane, and it was truly like being a movie star. Royal treatment all the way!

Other than a rocky landing due to inclement weather and Donald Duck and Goofy calling the plane and "talking" to the kids over the intercom, the plane ride was pretty uneventful. When we got to the Walt Disney Yacht Club (where we'll be staying in Orlando), I was completely overwhelmed by our room. First of all, it's huge, Second of all, it's sooo nice. Third, it has a big balcony with 2 chairs overlooking the grounds, and when Jonah and I walked out there, I said, "Jonah, do you know how lucky we are?" and he just threw his arms wide open and his hands out and said emphatically, "VERY!"

We all went to a restaurant for a delicious bar-b-que dinner, and while we were eating, Donald Duck and Goofy showed up. Jonah got their autographs and his picture taken with them. All the kids were very excited by this, especially the younger kids like Jonah. He was pretty proud of his first two Disney character autographs. We sat with some other families as well as some BBA staff, and it's nice getting to know everyone. Everyone's situation is different, and yet we are all bonded together through this experience. We have never met before, and yet it's like we already know each other in many ways.

The plan tonight was to go to Fantasmic. But as things so often do go awry, Jonah - after being unusually not-hungry and uncharacteristically quiet - got incredibly sick on the bus ride to the show. So after dropping off everyone at the show, the bus driver took us back to the hotel, where Jonah got clean and changed clothes. Within seconds of walking into our hotel room, the front desk called and directed me where to take the dirty clothes to be dry cleaned. To say that everyone here is over-accomodating would be a major understatement. I felt so badly for Jonah - he was so quiet, and I just wanted to hug him and make everything better. He seemed so small, and it's times like these that I remember that he really is just my baby.

We took the bus back to the show, but minutes after it started, Jonah got sick again, and we spent the better half of the show in the bathroom. At one point, he looked up at me and said in his tiny little raspy voice, "Mommy, why did I do this again?" It was all I could do to keep from crying, as I tried to explain that this was just his body saying he doesn't feel well and everything is going to be okay. Wearing my fleece as a shirt, he sat in my lap for the rest of the show, totally quiet and pretty much totally mesmerized.

Fantasmic is amazing. It's shown on a lake in front of a small mountain. A sheet of water shoots up from the lake, making a "movie screen" of sorts, and the movie is played there. A medley of Disney music classics are played, flames are somehow all over the lake at one point, and there is an awesome fireworks finale. I watched Jonah's face for much of the time, and he was mesmerized, eyes open completely wide! He said he liked it, but he also was exhausted.

I chalked the sickness up to over-stimulation, exhaustion and the actual arrival of the event he's been waiting for for the past 2 months finally being here. But really, I am just hoping and praying that he is not truly sick. After everything he has been through and everything he will have to go through, to be awarded this trip and then to get sick...? Well, I can't even deal with that. That would be so unfair, even though I know that word is pointless. Back at the hotel, I put him in bed, and I sat next to him singing "Twinkle Twinkle," but he was asleep before I even finished the second verse.

It's finally here...

I woke up this morning to the Bert Show and Bert actually reading my blog entry from Monday ON-AIR!! I was so excited! What a great way to wake up on the MORNING of our trip!

We get picked up at 7pm tonight. We'll spend the night at the Sheraton Gateway, and then there is a live radio broadcast from the hotel in the morning, and then we leave for Disney. Jonah is so excited he can't stand it. He has always been a good sleeper - you know, one of those kids who goes to bed early and sleeps late and never ever wakes me up if he gets up before me. He'll go back to bed or play in his room until I get up. BUT...this morning, when I heard his footsteps in the hall, he didn't go back to his room. The footsteps stopped in front of my door. And then a knock, knock, knock. And then another knock, knock, knock. And then another. You get the point. When I opened the door and looked down into those huge brown eyes, I almost melted. This kid is EXCITED!

I'm pretty sure Jonah will be a total chatterbox at school today and completely unable to sit still. Yeah, staying on "green" today (the traffic light process that charts the kids' behavior) is definitely not going to happen.

I haven't started packing yet. Other than Jonah's Buzz Lightyear costume, nothing is in a suitcase, and I can't find the battery charger for my camera. I can't find Mabel's dog tags, and I'm supposed to take her to the kennel at 3:30pm. Scott Powers at Barking Hound Village gave the Bert's Big Adventure families free dog boarding while we are in Disney. Anyone who has a pet knows that it is actually very stressful trying to find a place for your pet when you're out of town, so THANK YOU Barking Hound & Scott!!

I have to get some work done today, as well as keep my mind occupied because right now all I can think about is our trip. More blogging tonight while I sit in the hotel bed...next to a sleeping Jonah, who will no doubt be dreaming of the magical next few days...

I'm too excited to work!

It's true. I'm sitting here on my laptop, but all I can think about is our trip to Disney World in a few short (or rather, loooong, days)! When Heather nominated us for Bert's Big Adventure, I never thought in a million years we would win. As a matter of fact, after I, along with Jonah's wonderful doctor (Jeff Lewis at GI Care for Kids), filled out the paperwork, I just kind of put it out of my head. I know Jonah is "sick," but that's not how I think of him. He's just this amazing, bright, inquisitive, IMAGINATIVE, energetic-bordering-on-hyper kid who goes with the flow and enjoys pretty much everything under the sun. He can have as much fun riding somewhere in the car as he can at Kangazoom.

I have known since Jonah was 4 months old that a liver transplant was inevitable. But that reality didn't truly hit me until a few weeks ago when we made the decision to go ahead and place Jonah on the transplant list. And then it hit me like a ton of bricks. Now when I go into Jonah's room at night to kiss him goodnight and I watch him sleeping, I find myself tearing up. Each kiss is a little longer and each hug is a little tighter, and I wonder why sometimes it takes such a scary truth to make me remember how special this sweet child is and how amazing he makes my life - despite the crazy behavior he's had that day!

So when people say that this trip we are about to go on is just a trip to Disney World, well, no it is not. It is a chance for Jonah to see that he is not the only child enduring daily medicines and physical restrictions. He is about to get the chance to live out his dream - riding on the Buzz Lightyear Space Ranger Spin ride. I have been hearing about this ride since about 3 minutes after I told Jonah about the trip. I have no idea how he knew about this ride, but he actually packed his Buzz Lightyear costume - inflatable wings and jetpack and all! - about 2 weeks ago, and he insists that he is going to wear it on the ride. I laugh just thinking about it.

I'm sure I will enjoy the Magic Kingdom as well, but mostly I am eagerly anticipating watching Jonah. Seeing his face light up at the characters. Watching his amazement as he will no doubt believe that Alvin and the Chipmucks are REAL. And that Buzz Lightyear is REAL. And that Mickey Mouse is REAL I think my cheeks are going to hurt each night from smiling so broadly all day as I watch Jonah's face all lit up.

I am so happy for him. In life we don't always get what we deserve - I know that. But in this case, I am ecstatic that my little boy is getting exactly what he deserves...a trip of a lifetime that I know we will both remember forever. And when he has that transplant, he will have these happy memories to think about and to relish in to help get him through. Because this trip will always tell him how much people can and do care about other people and how special he is to have been chosen.

A little bit about us...

In May 2003, Jonah was born with a rare and chronic liver disease called Biliary Atresia. A blockage in Jonah's main bile duct prevented bile from flowing from his liver, thus causing severe damage to this vital organ. Jaundice, cirrhosis, dangerously low blood counts and frequency of illness have made Jonah quite the fighter! A liver transplant is the only known "cure" for this disease. Two weeks ago, Jonah's dad and I decided to go ahead and place Jonah on the liver transplant list. I know he will be okay and that we are so lucky to live in Atlanta where Children's Healthcare performs these transplants with amazing success; but, as a mother, I feel terrified and scared to watch my sweet little boy have to go through something that nobody - certainly no innocent child - should ever have to endure. We feel extremely blessed to have been chosen for Bert's Big Adventure!! The support and kindness from so many people and businesses in Atlanta makes my heart melt and reinforces my belief in the goodness of people. We are truly grateful, so if you have had any part in our journey - from nominating us (Heather Peihl!) to praying for us to donating to the Adventure - let me just say a great big THANK YOU!!