A Very Special Gift

Last Friday was a very special day for Jayla.  A team of volunteers from local Westlake's Ace Hardware Stores arrived at our house shortly after Jayla left for school.  They spent the whole day putting together a massive play structure in our backyard.  They completed it just as Jayla was ready to come home, so we were ready for her big surprise.  Friends and family convened in the backyard, and Jason brought Jayla back blindfolded.  She was completely overwhelmed when we pulled the blindfold off!

She was so excited to be given such an amazing gift, and we spent the next 3 days out in the backyard.  The play structure includes two forts connected by a tunnel, a rock wall, a "cafe", two swings and a hanging bar!

While to some it might seem like nothing more than a really nice play structure, it is so much more than that to our family.  Jason and I would never have been able to provide something like this for Jayla.  It is something very special that is just for her.  We discovered quickly that it is an opportunity for Jayla to just be a kid - to run and play.  She is able to go out and play in the fresh air and be physically active - even if she only has a few minutes between treatments.  As a CF mom, I love that I get control germ exposure while encouraging Jayla to be outside and active.

This gift was intended entirely for Jayla, but it has been a gift for our entire family.  I am so incredibly grateful for the huge smile on Jayla's face, for her laughter and for the opportunity for us to have this wonderful time together as a family.  Westlakes is truly remarkable for all they did for us.  In addition to providing and installing the play structure, they also helped us take down an enormous tree in our backyard and extend our fencing to create a wonderful backyard to play in!

This serves largely as the finale to Jayla's year as the Champion child although her reign technically continues until April.  It has been such an amazing opportunity for us, and we are so incredibly grateful for the kindness of so many!

It's Over, Really???

Today's post is a little anti-climatic which is exactly how we felt at the time!  It was really hard to get up to go home Saturday morning knowing that our wonderful Champion adventure was coming to a close.  We pulled everything together, Jason ran downstairs to make a last minute Christmas purchase, and we headed to the bus depot to go to the airport.  We were lugging all our luggage with us and were reminded of how wonderful it was when we arrived and our luggage just showed up in our room!  That being said, Disney very nicely allows you to check your luggage all the way through to home at the hotel.  We got in that line and waited to check the luggage.  The line was slow moving and the guy there tried to get us to get out of line to get on the bus and to check our luggage at the airport.  NO way!  We stayed put as the line to get on the bus was at least as long and were able to quickly check our luggage.  Unfortunately, the gentleman there was unable to print Dylan's boarding pass, so we knew we'd have to do that when we got to the airport.

We boarded the bus and snuggled in for a zombie-like, open-eyed slumber to the airport.  Once there, we stopped at a ticket counter to find out about Dylan's seat.  Coming out, he'd had his own seat but we knew that might not be the case upon our return.  The woman at the ticket counter quickly took my ticket and reprinted it to indicate that I would be holding a child.  I kept trying to explain to her that while that was fine, I felt certain Dylan had his own seat.  She insisted that children under two did not have their own seat unless I had chosen to buy one.  I tried to explain the whole Champion program and how I hadn't purchased any of the seats.  She was not impressed.  Yes, the special treatment seemed to have come to an end.  Low and behold, she found his ticket and had to reprint both our tickets as a result.

From there, we made our way to the gate and were invited to board almost immediately.  We settled in, excited to see so many of our fellow Champion families on board.  The pilot very kindly introduced all the kids during the flight, and it was otherwise an uneventful flight.  Upon arrival to Atlanta, I was in a tizzy as we had 40 minutes to catch our next flight and the Atlanta airport is a big place!  Apparently, the special treatment wasn't quite over for us.  When we stepped off the plane, there was once again a crowd of Delta employees to cheer for us.  They also had a complete list of connecting flights and a very nice concierge who personally escorted us to the next plane.  By the time we got there, the plane was already boarding and he escorted all the way to the plane.  Now that's the way to travel!  Once again, we settled in and enjoyed an uneventful flight.

It was great to arrive back in St. Louis, but it was also a bit of a letdown.  We were home with our adventure behind us.  There was no welcoming committee, just the regular old hustle and bustle.  We reclaimed all our luggage and hiked out in search of the hotel shuttle.  We ended up doing a fair amount of hiking as the sign said to go to "Entry 6".  Where we actually needed to be was "Exit 6".  To some, that may be the same thing, but I'm going to argue that it is in fact the EXACT opposite!  We caught the shuttle and were back to our car in no time.  Once on our way, we all agreed that we were hungry.  Big surprise, Jayla wanted McDonalds so we drove through to get her something and then headed to Joe's Crab Shack for the rest of us!  It was a wonderful end to an amazing week.

It was late by the time we got home, and we were all exhausted.  We did therapy and quickly climbed into bed.  The next day was a lazy one as we got caught up on our sleep and put everything away.  Family came by to hear all about the trip, and we prepared for our return to work and school.

Since our return, we've gotten back into the swing of our ordinary lives.  We continue to remember fondly our wonderful adventure and all our new friends.  Jayla caught up with her friend, Emma, on Skype.  They discovered that they own several of the same books and spent their time reading to each other.  Jayla excitedly took souvenirs of her trip to school and told the kids all about it.  I'm so proud of how quickly she was able to catch up and get back into the swing of things.  We've done several CMNH events since our return which I'll blog about soon.  Jayla is currently struggling with what I call the "chest gunk" and will be visiting the doctor tomorrow.  Hopefully, they will be able to treat it outpatient, but we know this is always a difficult time of year.  And so, life continues but with the memories of a very special week in which Jayla was allowed to shine as the special little girl she is.  For that, I am eternally grateful to CMNH.

A Grand Finale

It was hard to believe that our week was coming to an end so quickly, but CMNH had lots of fun planned for our final day!  We started our day with a breakfast with the rest of the Champion families and then lined up for a procession and the pin exchange.  It was a little chaotic for us because Jayla developed some digestive challenges just as we were ready to proceed.  We worked our way down the conference center hall making bathroom breaks as we went, but we made it!

We entered the huge conference/event room to thundering applause.  All the representatives from the national sponsors surrounded the room and cheered for the kids as they entered.  We then took our assigned seats for the pin exchange.  They had Delta water bottles, lanyards and this really cool Champions box with Jayla's picture on it waiting for us as well as a self-inking stamp of Jayla's signature.  For the next two hours, sponsors stopped by to meet Jayla and get her signature in their Celebration book.  She had so much fun and felt like such a celebrity!  Each of the sponsors gave her a lapel pin in exchange for her autograph, so she had quite the box full by the end.  She has had so much fun going through all the pins since our return home!  I know two hours seems like a long time, but it went so fast.  I think Jayla would've stayed longer as it really was a lot of fun!

Don't worry... she's not mad.
That's her celebrity pose!

Jayla loved the pin exchange!

Alas, it came to an end and we were off for our next adventure!  We had a couple of free hours before the evening events, so we decided to head back to the parks.  After an exhausting day the day before, we decided to go at a slower pace.  We had intended to go to Animal Kingdom but scrapped that park for Hollywood Studios.  It ended up being a great call!  We rushed to make it for the Beauty and the Beast show which was very good and Jayla really enjoyed.  From there, we hopped over to the Little Mermaid show.  Jayla was singled out on the way in to introduce the show.  In exchange for her introduction, she was given an autograph from Ariel and Prince Eric - score!  We wandered around for a little bit and then caught a quick pic and autograph with Handy Manny before heading back to the hotel... we needed just a little down time (and to pack!).

The Beauty & the Beast show was great!

Jayla humored me and got a Handy Manny autograph even though she's "too big" for that!

Shopping was a recurring theme, and Jayla was so excited to use her Disney gift card from Accurate Rx to buy a Cinderella carriage.

The family at Universal Studios

Grams & Jayla

We all came together for the last time on Friday evening to have a nice dinner.  It was so tasty!  Jayla decided that she loves Mahi Mahi (but has no idea what it is!).  As we were finishing up dinner, we were introduced to Nick Cannon who served as our MC for the night.  Then, they brought in some super-special guests: Mickey, Minnie, Donald and Goofy!  The kids each got to get their picture taken with each character (wish we'd known that before our long wait at Epcot!).  We even got a couple of family pictures!  The arrival of our special guests put everyone in a great mood and ready for the final ceremony.

Jayla was in a great mood and excited to see Pluto! 

Jayla also got her picture taken with Miss America

We once again all lined up and processed into the huge auditorium.  There was music and cheering and lots of bright lights.  It was a little overwhelming but also very exciting!  There were cameras everywhere and they projected images of the kids entering on jumbo-trons.  The kids went back stage and we took our seats for the program.  Several very nice awards were presented and their was a musical performance.  After that, it was time for the medal ceremony.  This had a more profound impact on me than I would've expected.  It was so wonderful to see all our new friends come on stage, smiling and happy, and receive their medals.  When Jayla came on stage, my heart absolutely swelled with pride.  She was all smiles!

After receiving her medal, Jayla joined us in our seats and watched the rest of the program with us including a very fun 3-D show.  As the program ended, Jordin Sparks took the stage to sing "Celebrate".  She invited all the kids to come back on stage and dance with her.  Any shyness Jayla had earlier completely evaporated as she ran onto stage and danced with her friends.  It made me so happy to see her so carefree!

Jayla entering the medal ceremony

Jayla getting a high five from the Delta rep

On stage with her Champion medal

Dancing up a storm on stage with Jordin Sparks and the champion kids

 

At the final night celebration with her new friend, Emma, from Florida

Jayla & Emma

After lots of photographs and hugs, we headed back to our room and settled in for the night.  Tomorrow would be an early and long day as we traveled home.

Hangin' with the Princesses

After arriving in Orlando late on Wednesday, we had the entire day at Disney World on Thursday.  I had big plans to fit lots in which proved to be a bit overly ambitious.  It was surprisingly hot and humid in Orlando... I was expecting it to have already cooled off for the fall!

We started the morning off with a full breakfast at the hotel.  We'd been running around so much that we really hadn't been eating very well, so this was a good time to get some Mickey-shaped waffles, bacon, sausage and all the breakfast fixins!

After breakfast, we decided to start our day at Epcot and arrived as the park was opening.  My plan was to hit a few key locations and be out of the park and on to the next within an hour or two.  Jayla had other plans!  Of course, Disney World was all new to her and she was very excited.  We bumped into Daisy Duck and Stitch on the way in, and that set our course for the rest of the day.  Jayla was so excited to get her picture taken with the characters and to get their autographs, so that's what we ended up spending much of the day doing.  We were on the hunt!  She has lots of pictures and autographs to show for it!

We began our adventure at Epcot

Jayla spotted Daisy on the way into the park 

Stitch was there too!

While at Epcot, we visited "the giant golf ball" as Jayla put it and played a few games there.  After that, the girls all went on Soarin' which was a very cool.  Jason wisely chose to skip that ride as it was a "hand gliding over America" experience!  We also checked out the Nemo under the sea ride and then got in a very long line to meet lots of the Disney characters.  It was a long wait, but Jayla got to hang with Mickey Mouse and his friends!

Chip 'N Dale were alot of fun

It was a long wait to meet Mickey

 

We stopped in a shop at Epcot to pick out some ears!

 

Jayla and I at Magic Kingdom

After a morning at Epcot, we made a quick trip back to the hotel (I'd forgotten bottle nipples for Dylan!!)  We stocked up on water and headed back out to Magic Kingdom.  Jayla had a VIP pass for the parade there, so we started by waiting for the parade.  While we waiting, Snow White happened by so Jayla ran over to meet her real quick.  She was the last child for the day that got to meet her as Snow White is apparently quite busy during the day!  We went back to waiting for the parade which was very slow to come.  While we were waiting, we realized that the wait time to see all the princesses was only 20 minutes since everyone was outside for the parade.  Jayla wanted to go see the princesses instead of waiting for the parade.  I hate that we missed the parade because I know it's amazing, but she was so excited to see Cinderella, Belle and Rapunzel!

Jayla liked Rapunzel most of all... but said she talks REALLY fast :-)

Cinderella was full-on princess

Jayla was so excited to meet Belle

We spent the rest of the day at Magic Kingdom and had a great time.  We tried hard to do it all!  We spent most of our time in Fantasyland, revisiting my favorite ride - It's a Small World.  We rode Prince Charming's carousel, attempted to remove the sword and the stone (unsuccessfully!) and climbed the Swiss Family Robinson tree house.  We ate funnel cake while watching the show in front of the castle and then stood in a ridiculous line to meet Aladdin and Jasmine.  That one pretty much did us in so we called it a day and hit the pool!
 

Jason tried to help but alas the sword remains in the stone!

Jayla was very patient waiting for Aladdin and Jasmine!

In the midst of all our adventures, our amazing friends at Accurate Rx were hard at work here in Columbia finding us a nebulizer.  By the time we got back to the hotel, it was waiting for us at the front desk so the kids could do their treatments.  It was a very full, very fun day and there was still lots more fun in store for us!

A Tale of Two Cities

Wednesday was an extremely big day for us!  We had a group breakfast and then a little down time in the morning after we checked out of our room and got our luggage situated.  We took a short walk and let Jayla run and play with her friends at Freedom Plaza.

Famous presidential portrait of JFK, the only one done after a president's death

White House Dining Room

After lunch, we all reconvened for our White House tour.  The group walked over and went through initial security.  I figured we'd be going through the traditional tour, but boy was I wrong!  We were classified as guests of the President and as such got much more open access.  Instead of the regular tour route, we were given open access to wander through the private dining room and the Red, Green and Blue rooms.  We were allowed to take pictures, touch things and even sit on the furniture.  I about had a heart attack the first time Jayla sat down!

Jayla taking a break in the Blue Room

Once we'd checked everything out, we all went into the East Room.  This is the room where the President makes his public statements to the country... you know, he walks down the long hallway and comes to the podium.  It was pretty amazing to be standing right there.  They placed all the kids in chairs and family on risers behind them.  A secret service agent talked to us for awhile and answered the kids' questions.  After that, we received our first visitor, Bo the 1st Dog.  Bo is pretty impressive.  He trotted around the room so all the kids could pat him and then placed himself for an official picture.  After he left, it was just a short wait for President Obama to come.  It was really neat to watch him stroll down that long red carpet lined hallway and enter the room.  Regardless of your political inclinations, there's no denying that he is a man with a great deal of charisma.  He was charming and flashed us all the biggest toothy smiles.  He spoke briefly and made a point of shaking each child's hand and many of the parents as well.  He then posed for official pictures and accepted a plaque from the people at CMN.  In no time at all it was over and he was sauntering down the same hallway to get back to work.... He indicated that he'd like to go with us to Disney World but he had a few things he needed to take care of :-)  I asked Jayla what surprised her the most about the President.  She said excitedly that he had a pimple right on his cheek and that she didn't know presidents could get pimples.  I told her I thought it was a mole, but that yes, even presidents can get pimples!

A secret service agent answered questions in the East Room

After our presidential visit (by the way, the White House hasn't provided the pictures yet and we weren't allowed to take pictures), we headed back to the hotel where we had a quick snack and then boarded buses for the airport.  It was a bit of a drive, and I think we all got a short nap which was good because there was lots more fun in store for us!

Snapped a quick pic of Jason and Jayla as we were leaving!

 Our flight from Washington DC to Orlando was like nothing I've ever experienced.  While I still have no desire to be famous, it did make me wish I was really rich and could travel like this all the time!  We had a chartered flight, so we never went into the actual airport.  We didn't have to lug our luggage around or go through security.  Our bus pulled up right next to the tarmak where a crowd of Delta employees were waiting to greet us.  We completed a very basic security screening and were welcomed onboard.  Jayla was excited because the plane was really big and had tvs in the back of the seats.  As we departed Washington DC, the fire department at the airport gave us a water canon salute.  Apparently these are quite rare and generally only done when a senior pilot is retiring.  Basically, they bring out fire trucks and shoot huge arches of water over the plane as it takes off.  We were even given a salute upon landing in Orlando!

Water canon salute

We had a wonderful flight, and the people at Delta worked so hard to make it special.  We were served a delicious dinner on the flight which was great as we were all getting hungry!  They also gave the kids coloring sheets, aviation wings and candy.

Delta greeted us at the airport when we arrived in Orlando

Jayla was a little overwhelmed by the crowd when
we arrived at the Coronado Springs

It was getting late, but we were all so excited to arrive in Orlando.  When we departed the plane, we were once again greeted by a crowd of Delta employees who cheered and waved signs for us.  They made us feel very special!  We boarded buses and headed for the Coronado Springs.  Jayla was so excited by all the Disney-themed billboards she saw along the way.  When the bus pulled up in front of the hotel, we were greeted by a huge, cheering crowd.  Everyone from CMN's Celebration were there with signs!  Once we entered the hotel, they had gift bags and Disney pins for all the kids.  They'd also set up all kinds of games for the kids to play and fun things to do as well as snacks.  Jayla had so much fun!  She was also really excited to see her picture displayed on the big video screen.

There were LOTS of people!

Jayla had fun at the welcome party and got
a balloon sword and chef's hat!

It didn't turn out great, but here's Jayla with her screen.
It rotated through all the kids.

Finally, it was time to settle into our room.  It was a bit of a hike, but we finally found it!  We settled in to do therapy and go to bed.  And then panic struck.  As we got set up for therapy, we discovered that the nebulizer we'd brought had been damaged at some point and no longer worked.  Without it, neither child could do therapy.  While it was already nearly 11:00, I called our good friends at Accurate Rx who are truly amazing.  Kirsten set to work trying to find a place to get a replacement nebulizer.  In the meantime, we did our best with the percussive portion of therapy and headed to bed.  We would have to figure out a nebulizer solution tomorrow.  Plus, tomorrow was our free day in the park so we needed our rest!