[We spent four days at Disney World and I figured I'd document the trip as best I can]

Day Four: Hollywood Studios

By this point, we had a system going. I woke up first, would run down to the cafeteria and wake the kids up with mugs of hot chocolate. We were ready to hit Disney’s Hollywood Studios and have some fun. Jordan kept that birthday pin on – but we also decided our final day would be reason to celebrate her brother for being a great brother. The grownups wore pins that said “I’m Celebrating” and we wrote in “Cameron” at the bottom. Jordan wasn’t too excited about that – but I explained to her that her birthday pin would get her enough birthday wishes that she’ll be okay. The first thing we did once we got to the park was ride the Toy Story Mania ride and pick up an extra Fast Pass for the ride. It’s really popular and known to run out of Fast Passes really early in the day. Just waiting in line for the ride is a toy explosion.
Then we hit a snag. Once again, Jordan was too short to ride the Rockin’ Roller Coaster… and her brother LOVED it. He ended up riding it four times. Jordan was crushed. Luckily we could all ride the Tower of Terror… and even though we pretended to be super scared, Jordan loved it. We ended up riding it a second time at the end of our day.
One of the coolest things we did was eat lunch at the Sci-Fi Movie Drive-in Theater. It’s a huge studio that makes you feel like it’s at night in a drive-in movie theater. You actually eat inside a convertible car while watching sci-fi b-movies. The kids were bummed we didn’t get to watch good movies. I loved it. I’m surprised Jordan didn’t fall asleep since it was dark and she was sitting close to me in our car. This was our view:
We went between action movie activities and things Jordan would like. She was really not interested in watching things blow up. Her brother loved it. We had a chance to see fast cars and the Indiana Jones show. Jordan got to see a Little Mermaid show with her dad while the rest of us rode the roller coaster again. (It’s fast and fun and it’s hard to not laugh while you ride it.)
We ended the day with a HUGE dinner at the 50′s Diner where you eat in a 50′s-style kitchen. We had a lot of fun with our waiter and we ate HUGE milkshakes and all kinds of food Mom would make. We all got New Year’s Eve hats – but Jordan’s head was a little too small for it.
We’ll never forget how our waiter got the entire restaurant to sing for Jordan’s final birthday cupcake. She just loved the birthday attention – even though she took the pin off a few times. Maybe she liked the anonymity from time to time.
The final show we attended was Fantastic. If you ask the kids to explain the show, they have a hard time. But basically it’s a mix of water and fire and fireworks and movie clips and characters all mixed together for a fabulous show. I caught one magical moment when Mickey had control of the fireworks.
We left the park a little before midnight to avoid the rush… Not to mention the kids were exhausted. They both fell asleep in the bus on our way to the hotel. We tried to get Jordan to walk back to the room, but she kept falling asleep on her feet.
She woke up in time to watch the ball drop in New York City and we all got to watch fireworks from our hotel. We had so much fun and we have all kinds of stories to share with friends and family. I feel incredibly lucky to be able to take the kids to the parks every other year. Four days seemed just right… Maybe three. We were so tired. But it was great to be able to play in each park and not worry about bouncing back and forth between parks when its just a busy time of the year. Snagging Fast Passes early in the day and just collecting them as we went was awesome. We realized that the time on a Fast Pass is not the time when you MUST ride the ride. It’s the time when you can get another Fast Pass. So we used our Fast Passes on our own terms and it was great. I look forward to our next trip and who knows what I can dream up for that one!
Happy 2011! Who knows what kind of adventures we have ahead for us this year!

[We spent four days at Disney World and I figured I'd document the trip as best I can... Even though it was a week or so ago!]

Day One: Epcot
Jordan caught a cold right before we went to Disney. She was a bit drippy and having a tough time sleeping at night. She never really complained about being sick. (Which I think is funny because when I feel icky, I am very open to complain.) But the night before we started our four days of fun at Disney, she barely slept. I was nervous about how it would go. We got to the park early – that’s something we did every day. It seems like you get to do a lot more and have more fun if you start the day when there aren’t a lot of people. It’s key when you visit at the peak of the holiday season. The first thing we did was find Mickey. Epcot is known to have fewer little kids who want to meet and greet the characters, so the wait time can be shorter than in other parks.

I gave the kids autograph books for the first time. I thought they’d enjoy the experience and it would be a fun thing to look back on. What I didn’t realize was the challenge of juggling the pen and the pages and the quick time capturing photos all at the same time. I was a pro by the end of the trip, but our Mickey and friends visit felt very complicated. We decided to do Disney without a stroller. Since Jordan was a day away from five years old, it just seemed worth the try. We were ready to rent one if needed. But Jordan is a tough kid and never asked or needed one at any point in our trip. But I’m pretty sure the lack of sleep the night before and the lack of a stroller led to Jordan’s exhaustion at our dinner that night. The moment we sat down to our table, she fell asleep. Not a little, but a lot. Since we were there to celebrate her birthday, there was a polka band that actually played a birthday song for her… and she slept through it. All of it!
She woke up in time to enjoy the big fireworks at Epcot from her dad’s shoulders. It was a fabulous show. And we were exhausted and ready to go back to the hotel and sleep! We had a big birthday to look forward on our second day in the parks.
(I’ll write more about that soon!)

Every time we show Jordan video of a person doing something cool with a limb difference, Jordan just does not react much. I’ve said this before, but I’ll say it again. We’ve given Jordan access to so many awesome and able limb different people, she doesn’t expect anything less than awesome. So when Randy found this video on ESPN, she watched with interest, but didn’t seem too shocked:

Another ESPN film that I think is pretty awesome is “A Fighting Chance.” It’s a movie produced about Kyle Maynard who is a quadruple congenital amputee. It’s a super strong wrestler and an incredibly positive person. (He wrote a book called “No Excuses.”) For more than I year, I’ve worked with the producer who was trying to collect videos and photos of limb different kids to show people who watch the film that Kyle isn’t the only kids who is inspirational. ESPN ended up cutting the montage out of its version that aired on TV, but it’s going to be a DVD extra when it goes on sale. (Hopefully soon)

If you’re interested in seeing the film, it has one more chance for viewing ESPN Classic at 5pm ET on December 25, 2010. You can see a little on the film’s website. I look forward to the DVD!

Another project I have quietly followed is nearing completion. It’s called “The Sweetest Gift” and is about arthrogryposis multiplex congenita (AMC). It’s a film focused on telling the story of this condition and how children and adults are living life. This is a condition I hadn’t heard of until a friend of mine had a sweet little baby and doctors think he might have AMC. I don’t know when the full piece will be complete, but here’s this film’s trailer:

As we get closer and closer to the holidays, I wanted to share our holiday card from our family to yours. I’m stunned by the growing community I see around this blog and the Sammy’s Friends group online. I’m honored to have so many wonderful friends online and in person across the country and in so many different parts of the world.

I hope everyone is having a wonderful season and thanks again for the love and support near and far.

Enjoy visiting our holiday website by clicking here.

Jordan and our family had a really busy night last night! First, she got to dress up in a holiday dress and perform with her class before we had a family dinner with everyone in her class. They sang two very cute songs while wearing handmade hand print reindeer hats. Here’s the performance for anyone who would like to enjoy adorable kids singing:



We also made a special visit to Santa after our big dinner. I’m waiting for the picture to be downloadable online and then I’ll share our fun from that later today or tomorrow!

In my quest to keep up with the limb difference world, I realize I’ve missed the opportunity to write about two limb different women who recently were in the news for their beauty and limb difference.
Kelly Knox won Britain’s Missing Top Model earlier in 2008. It’s a BBC show that gave disabled models a chance in the modeling world. For some reason, Knox is getting a lot of coverage in the international media recently. I’ve read a number of articles on her and I think it’s cool to see so much coverage in a positive light about limb differences. Another media campaign focuses on a 35-year-old woman from Belgium who is mimicking a Wonderbra ad, but raising disability awareness. The caption: “Look at me in the eyes… I said the eyes.”

Tanja Kiewitz said she had no qualms doing the photo shoot. It think it’s awesome she was brave enough to pose with a bra on… let alone putting her limb difference in the limelight.

The increasing revolt against the full-body scanners or pat-downs are getting a bit of news coverage. With that, there’s a growing outcry from people who use leg prosthetics. Apparently the TSA is sitting down with the Amputee Coalition of America. But for now, it’s not a simple process to go through security. Here’s a story from Fox News and one from the Chicago Sun-Times.

Two other really cool stories I found online:

I talk about offering support to other moms and dads of kids with limb differences. I use this blog as one way. Helping moderate the Sammy’s Friends listserv is another big way. I expanded this site onto Facebook and have had a chance to interact with so many other people. Jordan and I sometimes speak to classes – college level and preschool level. But I’m always looking for new ways. I try to keep up with a community in BabyCenter but I’m terrible at that.

So… I’m going to try a little harder to dig into the web world and keep track of news articles and developments for limb different kids. There are a lot of resources out there. I don’t use them all… Even though a piece of me wishes I took the time to reach out to more people. Wouldn’t it be amazing if we all worked together to support each other? Wouldn’t it be incredible if we all leaned on each other to help teach the many people in the world who can’t get over what they think a person is supposed to look like? Limb differences aren’t the end of the world. Our kids are going to be JUST fine.

I keep a list of sites I think offer perspectives and information to families on the right side of this site. Those are the links to “Sites I Watch.” Feel free to check them out and offer sites any time! I asked folks on the Born Just Right Facebook page for ideas. If you ever come up with one, feel free to post it there too!

Beyond sites… Here are a few other interesting articles/web pages I found:
The Amputee Coalition of America wrote an article on prosthetics and children with limb differences.
A list of limb difference terms from the Amputee Coalition of America.
Reach.org listed the stages parents can go through with limb different kids.
Another Amputee Coalition publication about parenting limb different kids called Expectations.
Baseball player Jim Abbott talks to his fans on this webpage. He’s an incredible advocate for kids and parents.

Sammy’s Friends member Michelle wanted to share this community program where she talks about sweet Annabelle and an organization that has really helped her family, Variety Children’s Charity of Detroit:

In the news… I stumbled into this really cool article about a 13-year-old British boy who was able to become the youngest person with an iLimb. I’m floored that a kid that young is fortunate to use such a functional (yet heavy) helper arm. Speaking of iLimbs, have you read about Sacramento, California’s Carly Davis? She recently got an iLimb and is heading into her second pageant this year. She’s competing in honor of the Sammy’s Friends kids. She did an awesome interview on the Fox station on Sacramento station that’s worth watching! You can even keep up with her pageant on her Facebook page.

I think I’ll also share a project I’m helping with at work. It’s called The Culture that Crawls – it’s a site about an organization that is helping people who are unable to walk get mobile with the help of wheelchairs and Personal Energy Transportation (PET) devices. Two reporters and a fabulous photographer went to Guatemala to help distribute devices. I feel mobility is an incredible gift that some have more easily than others. Hopefully we can help share the stories of the people in Guatemala and make a difference.

We fell into two wonderful sports events this weekend… And Miss Jordan was pretty willing to pay attention to both… Even though I had a hard time capturing a good picture of her at the basketball game!

After a late night at the basketball game, we had a chance to go out early in the morning cold, enjoy a fun tailgate and watch senior football day. It’s the last home game of the season. We saw way more games this year than I had expected. This last game was too cold for Jordan’s liking. But that wasn’t before we danced and yelled for our team.

After Jordan and I left the game (it was too cold for her), she and I cuddled and watched a movie together. It was awesome. Any time I get cuddles from Jordan or her brother, I relish it. I know these won’t continue forever. And this weekend’s cuddles were a wonderful way to end a lot of sporty, non-cuddly fun.

I can’t believe we wrapped up equestrian therapy a week ago for the year. The sessions have been incredibly awesome for Jordan this Fall and I hate to see it go. In the final session for the year, Jordan had a chance to earn a medal. And of course, she was very proud.

I think this last session was her best ever. She got to work with her favorite horse Thunder and use her helper arm to its fullest. By the end, she was getting really good at using her arm with the reigns. I captured her best reigns picture a few weeks ago:

The funniest part about our final session was how Jordan decided to flirt with one of her side walkers… It was super funny to watch. I actually had to interrupt the flirting to remind her that she was there to learn how to ride with Thunder, not how to improve her flirting skills.

It took the offer of seven jewels, but I got Jordan to help me present her story and her use of prosthetics to occupational therapy students this afternoon.
Jordan and I visit the class once a year. I think it’s pretty awesome we’ve visited the class since 2006. It’s funny when we pulled up to the building. Jordan declared how she remembered the place and was excited to play. And that’s really what she did most of the time. During each class, she said very little. She pretended to be shy, except for when she was playing with the professor of the class. But at the end of the two hours, I was able to bargain a few extra jewels with Jordan to get her to put on her elbow arm and show the students how she uses it. She even showed off a little with her ability to hold onto things. She helped pick up a marker and put it back into a container. (By the way. Before Jordan and I got to the class, I told her she’d earn two jewels for being good in the classes. During the first class, I upped it to three if she’d put on any of her helper arms. (She chose her princess bike arm.) But in the second class I wanted to try to get her to put on her elbow arm. SO I told her I’d up it to four. She actually bargained it to SEVEN. Wow.)

I’m proud of Jordan for being willing to let me take her to classrooms and participate a little bit. I honestly believe we are very lucky to have a chance to help educate all kinds of people. The occupational therapy students are just one group where Jordan and I can share our experiences and those future therapists will be able to take our lessons to other families so they don’t have to feel alone!