Our Make a Wish Trip - Give Kids the World Village

During our Make a Wish trip, we had the absolute pleasure of staying at a Village designed especially for wish kids called Give Kids the World. This place is magical in every way. The vision that founder Henri Landwirth had to improve the lives of those in need is found in every inch of the village. This is the sign you see as you approach the gates of the village.

Once you arrive you are greeted by one of the employees and your child is given a very special Mouse. This is a photo of where you register and you go for your orientation. When we arrived it was pretty late at night and we were so hungry. They said that we would be taken to our villa and we would have food delivered to us. 

The theme at the village is Welcome Home. Every time you leave and come back that's the way you are greeted. They want you to feel as if you are at home. They provide EVERYTHING you will need in the villas. There is a full kitchen with plates, cups, forks, knives, spoons, a dishwasher and soap. There is a washer and dryer and they give you detergent. There are 2 bedrooms with sheets, blankets, and pillows. There are 2 bathrooms with towels, soap, shampoo, conditioner, and body wash. Hailey's room had bed rails, a wheelchair accessible shower, and a whirlpool bath! This villa was nicer then our own home! 

 Welcome Home Hailey!!!

The magic of the village appears once you know the story behind everything. You can visit Julie's Safari where they show movies, and have meet and greets with characters from the surrounding theme parks and even Santa! 

 The ice cream palace where you can ice cream for BREAKFAST if you want! If your child would like an ice cream sundae, ice cream cone or even a milk shake stop on in and get which ever your heart desires. Open from sun up to sun down and free for the family!

 A big percentage of children that visit the village are like Hailey and in wheelchairs, but there is no boundaries for these children. They have a Merry Go Round that accommodates these special children who don't usually get this opportunity elsewhere.

 You can just slide your wheelchair right into a special spot on the merry go round.

 This is Katie's Kitchen. The story behind this special place is told below. I copied this from the gallery.

In 2005, 7 year old Katie, visited Give Kids the World. In a letter to the Village her parents wrote, "We were so grateful to have a brief time to forget the nightmare we were living. The Village became a sanctuary from the needles, pills and radiation masks. For one week we were a normal family, living life to its fullest. For one week we felt free to laugh and embrace and build those last few precious memories. You can't put a price on that." Today Katie's Kitchen is managed and funded entirely by Boston Market and serves over 80,000 delicious, nutritious meals annually to the wish families. 

 Breakfast, lunch, and dinner is provided at the village for families and even guests of families. Guests have to pay $5. We had Josh's whole family with us and they were able to eat with us for that small cost. I had never had Boston Market before, but now I wish I had one near by. Every time I said how much I loved the meatloaf I'd get a funny look, but I really LOVED the meatloaf! LOL!! Inside Katie's Kitchen you see such a fun and whimsical place. Each table has little peppermint candies that were placed there by hand. Around the perimeter of the ceiling stuffed toys were donated and placed there to stay.

There are activities every day at the village and one that we participated in was Horseback Riding at Keaton's Korral. When Hailey wasn't sick she had the opportunity to ride a small pony and she really loved it. There are a ton of benefits for horseback riding for children with neurological diseases and disorders, which I will blog about another day. I knew that I wanted to give Hailey the opportunity to do this. Before we left for one of the theme parks we went horseback riding.

This is also entirely free to the children. They had helmets and also a tandem rider that would help hold Hailey up. The only time Hailey was unsure was when she couldn't see me, but once I started waving for her she perked up. 

There is a place named after the next girl I will tell you about. It's called Amberville Station, which is a fun center with video and arcade games. Below is Amber's story.

Amber Holman was a girl who visited the Village in the summer of 1990 when her older brother, Travis, was a wish kid. Less then a year later, Amber was diagnosed with the same incurable disease that had afflicted Travis. The Holman's returned to the Village in 1992, this time to fulfill Amber's wish. The family's courage moved Henri, and a relationship formed between them. In 1996, the Village unveiled plans to build a fun center and Henri named it the Amberville Train Station as a tribute to the family's faith. 

This was the pond outside of our villa. They stock it with fish and kids can go fishing here. This was another thing I wanted Hailey to do. Her great grandpa was quite the fisherman and I thought it would have been awesome to share that with her, but sadly, we ran out of time...

In sunny, hot, sticky, Florida pools are essential! They have zero degree entry pools and PVC wheelchairs so that all kids can go swimming! They also host a pool party here once a week!

The next area of the village is Matthew's Boundless play ground. The story is as follows: 

When the Hasbro employee who brought his family to the Village in 2006 on his son's wish returned and told all of his fellow Hasbro associates about their experiences, it helped to further solidify the relationship with GKTW. The wish child, Matthew McGowan, was actually the one to receive the first Give Kids the World Edition of the Candy Land game as it came off the assembly line. As the relationship with Hasbro strengthened, they "adopted" Winter Wonderland and also provide over 22,000 other gifts annually to include in the Village celebrations each week. 

After Matthew's wish trip, it was decided that the new boundless playground would be named in his honor. The dragonfly that sits atop the entrance signs to the playground represents a story that Matthew's sister read at the Grand Opening. 

At the boundless playground the wish kids are invited once a week to play the worlds largest game of Candy Land! Each child also goes home with their very own Give Kids the World Candy Land game!

There are 2 very special bunnies that live at GKTW. Mayor Clayton and his wife Ms. Merry. Mayor Clayton celebrates his birthday every week at GKTW with a huge birthday bash. Ice cream, games, and crafts along with a happy birthday song. Part of the perks of being the mayor and his wife is that they are there to help every kid enjoy the activities planned. You can even request your wish child to be tucked in by one of them at night time! Isn't that amazing!!

 We felt right at home the moment we stepped foot at GKTW. This place has a special feel to it. 

The next part I always want to tell people about, but I tried it once and broke down into tears. It was the most special part of the trip. Every wish child gets to have a star placed in their honor inside the castle of miracles by the Star Fairy. Her story is below in this picture. I'm sure you can enlarge it to read, it would be hard to retype it all. 

There are over 100,000 stars that were placed by every child who had stayed at the village since it's opening. The castle glows with all the stars and it's very bitter sweet. You are amazed at all the sick children there are in the world and amazed that GKTW has helped so many. 

There are just rows and rows.

I had heard an interview with someone where he said that he wishes they could close the doors to the village, because that would mean there were no more sick children. 

The day came when it was Hailey's turn to make a star and have it placed among the others. We went as a family and Josh's grandparents were there as well. You are given the star at orientation and you take it with you to the castle of miracles. The volunteer which happened to be our favorite Jo, was there to help us. 

I took Hailey's star and I wrote her name on it. Hailey also wanted hearts on it. I put 5 hearts for everyone that was there as her family. 

I then showed Hailey what it said and she gave it a kiss.  

I placed it in the magic wish box and we were told to think about a wish for your star. 

Well...thinking of a wish wasn't hard, I knew what everyone was wishing for on that particular star. 

We closed the box, placed our hands on top and whispered our wish to the star fairy. The box starts moving and then stops. you open the box and your star is gone. The wish fairy appears on a screen and tells you that she had heard your wish and will have your star placed with the other children of GKTW and you can come back tomorrow to find it. 

They give you a picture to take home of your star.

The next day we got a letter in the "mail" from the Star Fairy asking us to come see where she put your star. 

You scan your mail and the volunteer pulls it up on the computer. 

Hailey's star is with the second cluster of stars. 

Another wonderful day at the Village is Thursday nights. Thursday is when Santa comes for the winter wonderland activities, and you thought he only worked 1 day a year...tsk tsk. 

 Santa said that Hailey was such a brave girl that she deserved an extra present. She was able to pick from a huge display of toys. Her pick was a baby doll!

 You know how we love our dogs. Hailey also misses her pups when we have to leave to stay at the hospitals. They have lots of therapy dogs that go to the village so we saw as many as we could.

 At the pirates and princess party there were games, music, and dressing up for all the kids and family! I told you there is something planned every single day at the village. No need to go to the theme parks!

 This was after our day at Universal Studios and Hailey had to introduce Fluffy to everyone! 

Everyday is filled with something to do. Every week they have Halloween, a birthday party and Christmas. Lots of times the holidays at the village are the last ones for the kids visiting. Every Thursday I think to myself, "today is Christmas."

No magical place is complete without a wishing well. This is in the castle of miracles too. Also inside they have a beauty boutique where you can get your face painted or hair and nails done. You can also get a tattoo!!

 Hailey and her ever lasting smiling face! 

This is a picture of the hug Hailey and Jo shared as it was Jo's last night volunteering! We miss you Jo!!

There are always gifts at the village for kids. We had a whole suitcase designated just for souvenirs and toys! 

All the information I got on the village and how certain places came to be was from the Gallery of Hope. You can not go in here without a full box of tissues!! You hear testimonials and stories from families on the experience and you are so overcome with emotion I dare you to not cry!

Hailey loves tattoos. She takes after her father. Hailey wanted a pink tattoo but also told granny she was getting one as well. Not asked, told. 

 They ended up getting matching tats.

 Granny is such a great sport! 

Another place in the Village is Marc's DinoPutt golf course. I wanted Hailey to do this to, but again we ran out of time. There were not enough hours in the day. :0( 

The story is below: 

After visiting GKTW Village in March of 1999, Marc McConnell returned home to Loupe City, Nebraska and prayed that he would conquer cancer so that he could return to the Village as an adult and volunteer to bring joy into the lives of many other children. For 3 years Marc was well on his way to upholding his pledge. he spoke to many groups, asking the audience each time he spoke to commit to being an organ donor and speaking about his time at Give Kids the World. He was chosen by the National Cancer Society as "Survivor of the Year" in 1999. Give Kids the World and Universal Orlando decided to name the seven-hole golf course to honor his wish of never being forgotten.

Amazing! 

 Give Kids the World Black and White Gala will be on Saturday June 1st. All the money raised will help GKTW grant wishes for more children with life threatening illnesses. They will have food, entertainment, and silent auctions. One of the items in the silent auction is a handprint plaque that Hailey and I made. There are so many incredible items to bid on and you can even bid on them via your cell phone. Register it before June 1st to be entered in a drawing for a wonderful vacation!

The village is so awesome because of the wonderful volunteers! I know that I will be back one day to volunteer at the village. 

This post marks the end of our Make a Wish trip. It seemed so surreal to me that my child was going to be a Make a Wish child. I wouldn't have ever thought this would have been something that I would have to endure in my life. As hard and terrifying as it is to have a child with a terminal illness the support that was given to my family is more then I could ask for. I've said it before, but Thank you isn't enough for what the Make a Wish Foundation and Give Kids the World did for us. These memories are forever. Seeing the other families that were there you get a different perspective on what "hard" is. I had thought that what Hailey is going through is hard, what we have to see her go through is hard. You don't know what hard is until you see a child going through much more then your child. Hailey is cognitive and was able to enjoy this trip and we talk about it all the time with her. She loves looking at the pictures we have and I am thankful we have them. This trip was more then we could have asked for or even imagined. If there was a word that was more then Thank you I would use it, but until I think of one...THANK YOU!! From the bottom of our hearts!

I promise I will be back one day to volunteer!!

If you would like to donate to Give Kids the World you can do so HERE!!

Our Make a Wish Trip - Sea World

Our last theme park of the trip was Sea World, and we get to go with Granny and Gramps. It was another sunny HOT & STICKY day in Florida. I had only noticed the humidity at the theme parks, but there was a lot of standing around so that might have been why. Right away we see Shamu and take our first picture. On the schedule today is shows and feedings no rides. There were 2 roller coasters and they weren't suitable for Hailey.

 I don't think Hailey had any clue about where we were at and what we were doing here, but Shamu came up and snapped a picture. 

 It was pretty early, the flamingos were still sleeping. I love watching how they can balance and sleep all tucked in. I might want to come back as a flamingo at Sea World in my next life...It's pretty neat! 

 First show we go to see are the dolphins. Such smart animals!

 Watching them jump is the best part.

 Even though I am a huge chicken, I've always wanted to swim with the dolphins! Maybe one day...

 Good air time! 

 Next show is rescue animals. All the animals in the show were rescued from a near by animal shelter. They had rats, birds, dogs and the funniest thing was a SKUNK! When Hailey saw it I turned to her to tell her what it was and she was plugging her nose! Guess she already knew what it was!

 Some of our favorite people!! Gramps and Granny! 

 Next up, Shamu. I guess now a days they don't have the animal trainers in the water with the whales anymore. It was a very short show also, but Hailey loves them when they jump out of the water.

 Here is a picture of Hailey copying the trainers and doing the jump command. She's too cute! 

 A very special treat for all of us was that Hailey had arrangements to get to feed the dolphins. They give you a plate of little stinky fish and the dolphins come right up to you with their mouths wide open. The dolphins skin feels so slippery. 

 Talk about up close and personal! This was amazing!

 I called them all flipper. 

 Say CHEESE!!

 Next up, it's time to feed the Sea Lions! Hailey was NOT a fan of sea lions so we did most of the feedings. Turns out there are these birds that will swoop in on the poor sea lions fish.

 We were told that these birds were not "Sea World" birds but they have moved in and adapted to the wonderful laid back life style of free food. 

 To make sure that the birds didn't end up with the sea lions fish this guy nearly jumped the fence to get close enough to us to grab the food.

 The next show we saw was a Sea Lion Pirate show. I was amazed at how smart all these animals were. I totally under estimate the ability of my dogs. 

When the Sea Lion did this pose, Hailey thought it was so funny. She clapped and laughed and I don't know what was going through her head. We also fed sharks but it was pretty dark and we didn't get pictures of that. We also saw a CIRQUE show that was pretty cool and the best part was that it was somewhere that we could sit and cool off in the air conditioning. We did everything we wanted to and had a whole 1/2 day left over so we spent it at our favorite place. The Village!

I can't wait to blog about this amazing village! That's coming up next!!

Our Make a Wish Trip - Universal Studios and Islands of Adventure

Today we were off as a family to Universal Studios and Islands of Adventure. Granny and Gramps stayed at the village and we would see them later. Universal Studios has 2 different parks you can NOT hop back and forth like DisneyWorld. I decided we'd do Islands of Adventure first since they had Seuss Landing and Hailey is a Dr. Seuss fan. Unfortunately there are NO rides that Hailey could have gone on so we saw every character we could and saw lots of shows. 

The day started off over cast which is great! As long as the hot sun isn't beating on you along with humidity it's fine. Overcast and humidity is easier to deal with. That sun is brutal.

 The Cat in the Hat. We were in a circle of all the Dr. Seuss characters so getting Hailey's attention was difficult. 

 She didn't mind the Grinch. He was being silly the whole time.

 Here is Sam I am. These guys in the suit need props for melting away inside the costumes on such warm days. 

 Hailey was lots of smiles today. Today she didn't mind wearing her sunglasses. 

 I took a picture to remind me to look up this book. Never heard of it.

We went into stores to cool off and there were so many fun things around it was hard to get Hailey to leave. 

 My little sister and I are HUGE Harry Potter fans! My sister wanted so bad to go to The Wizarding World of Harry Potter with us. I made sure to take lots of pictures for her.

Hogwarts Express! 

 I had to try the famous Butterbeer I've been reading about for YEARS!

 It's very yummy. Tasted like ginger ale and butterscotch. Very creamy on top and $4 bucks a drink. It comes 2 ways, Cold or frozen. Funny thing about it is that it's not very cold and they don't give you straws unless you order the frozen kind? 

 Ollivanders is the famous Wand Shop in the Harry Potter books. You can't just pick your wand. Your wand picks you (if your lucky enough to be the one that gets chosen, if not then you can purchase your own wand next door.)
This is a store and a show in one. You go inside a dark wand shop and see the wands piled up from the floor to the ceiling! One child gets called upon to get to have a wand given to them. In our show a little boy was picked and the wands he'd pick would cause chaos in the store. It wasn't until his 3rd wand when he grabbed it and the light shined and the wind blew and a story behind the wand and how it was made was told. When everyone left they asked us to stay behind. Hailey was pretty freaked and crying so I held her. They did the whole show again but JUST for Hailey. We were the only ones there. Our own private wand ceremony! It was amazing!

 After she had the wand in her hands she was happy again! 

 Have you ever wanted to see Hogwarts School up close! You got to go here! 

 Loving her unicorn hair wand! 

There are a few Harry Potter rides but the one I HAD to go on was The Forbidden Journey. Here is a synopsis: 

Make your way through the hallways and corridors of Hogwarts castle.  Dumbledore welcomes you as you visit his office on the way to the Dark Arts classroom.  Harry, Ron, and Hermione meet you there and invite you to the Quidditch match instead of staying and listening to another boring lecture.  You then board special “enchanted benches” which allow you to soar above the castle grounds. Be prepared because during your journey you may encounter dragons, spiders, the Whomping Willow, and dementors!

Josh said he'd wait behind and be with Hailey while I went. That ride was indescribable! So awesome. I got off and told Josh he HAD to go on this ride and I couldn't explain why. He went and agreed how awesome it was! Favorite ride EVER!!

Time to visit the island of Jurassic Park for lunch! 

 We didn't get to go on the ride, but we went on the ride in California. 

 It seemed like people were walking around like they had been dunked under water soaking wet. They had all just got done with the ride. Not a wet spot on the boat. Everyone gets soaked! 

Walking through the park we ran across a Sponge Bob Square Pants Parade and were joined by all the characters! 

 High 5 for Sponge Bob.

 Patrick got in on a family picture!

Well the sun ended up coming out and boiling us so we took a trip to Curious George's water play land.

 We took Hailey's shoes and socks off and had her wheelchair close to a water fountain. SHE LOVED IT!! She was laughing the whole time! 

After we played in the water we walked over to Song time with Barney! What a HIT this was! 

 They sang LOTS of Hailey's favorite songs and Hailey and I sang along as loud as we could. I loved that I was able to do that with her. She LOVES music! 

 We were invited to stay after for a private meet and greet with the big purple dinosaur and Hailey would not let us put her shoes back on! For the whole rest of the day my child wanted to go bare food. She really isn't ever given the oppertunity to go bare foot. She always has to wear those hard AFO's. She's suppose to wear them 12-15 hours a day, but since we are on her wish trip if she wants her shoes off then let them be off!! People must have thought I was either crazy or poor not putting shoes on my kid. Oh well!

 Off to another show. This time is was Animal Stars of the big screen! They had animals from Dr. Dolittle, Marly and Me and this guy: 

 Frank the Pug from Men in Black! 

 We got to stay after the show for a meet and greet with Frank. He was so friendly and so soft. One of our dogs is half pug and no where near as calm as Frank. 

We also stopped to get me a chocolate covered caramel apple and we had a few people notice that Hailey was here on her make a wish trip thanks to our buttons! So many wished us a good trip and one lady even passed on a gift card she was going to use to Hailey. 

By far Universal Studios and their staff far surpassed my expectations! Even though there wasn't a single ride Hailey could go on, they invited us to lots of private meet and greets, didn't allow us to stand in the sun or in line for anything. Every character was so gracious and came to us for pictures. They offered Hailey a private wand ceremony and gave her a wand of her own. Our experience at Universal was 10x's better then the experience at the Magic Kingdom. If I could tell a wish family one thing it would be to plan for a day at Universal where you can spend all day. The day we went they closed early for a private party and we only had 7 hours to do EVERYTHING and missed a LOT! 

Our Make a Wish Trip - Day 3 Epcot Center

Day 3 we were headed to Epcot Center. I had no idea what Epcot was going to be about but decided to give it a whirl. Today was HOT and STICKY out. We were all sweating, and the heat was making Hailey and I cranky. 

I've always wanted to see this giant Geo-sphere. Time for a group picture! 

The gist about Epcot is that you can visit all the most popular continents of the world in pretty much a day. That's fine with me. I am NOT a traveler, so this will pretty much be the only way I'd get to go to Germany, China, and France...

We had lunch in China and after lunch we found Mulan. She was SO extra nice to Hailey. Talked about Mushu and thanking us for coming all the way to China to come see her. She had a big hug for Hailey also. So sweet! 

 This is one of the building we passed. I don't think there was anything inside of it, but I could be wrong. I pretty much walked passed this to get to some shade.

Epcot had a flower festival going on where they took popular scenes from Disney movies and put them in garden form. So creative!

 There were also LOTS of animals wandering around. We spotted a Mama duck with her 8 babies. The mama hopped out of the lake and called her babies to follow. 7 ducklings were able to make it out of the lake by themselves, but the "runt" was left behind. I had never seen such a crowd gather to watch and cheer as the little duck struggled to get to his mama and siblings. It took him about 20 minutes, but YES he made it out!

There weren't very many rides there that we were able to get on. Most Hailey couldn't go on so we didn't go on much. There were 2 that I had my mind set on and luckily for us we had our huge family with us so we were able to do those 2. First was Test Track. You "design" your car and when you are all done you go on a test track and it grades you on speed, eco-friendlyness, performance. There is a part where you go 0-60 and bank a turn and they snap a picture.

I'm the only one holding on for dear life...

There was also one more ride I heard that I HAD to ride at Epcot. It was called Mission to Mars. You get two choices of ride. A mild ride to Mars or an Extreme ride where you have tons of warnings you have to listen to before you finally decided if you really will take your chances. They give you 6 chances to back out. After the 4th time they freaked me out, I switched lanes to go from extreme to mild, but my family peer pressured me to go back to the extreme side. I asked the ride attendant if this extreme they keep mentioning is really extreme or are they trying to scare me? All the warnings were scary, but there were little 8 year olds ready to go on it. Here is the description of Wikipedia: 

Mission: Space is meant to simulate astronaut training for the first manned mission to Mars aboard the fictional X-2 Deep Space Shuttle in 2036, right after the seventy-fifth anniversary of Yuri Gagarin becoming the first human to enter space. (The year 2036 can be deduced from plaques in the attraction's queue celebrating 75 years of human spaceflight, including two faux milestones in the future.) Riders are "trainees" at the fictional International Space Training Center (ISTC), where they are arranged into crews of four before watching an introductory video featuring actor Gary Sinise, who starred in the space drama, Apollo 13 and Mission to Mars.

Before boarding the simulators, each rider is assigned an on-board role (navigator, pilot, commander or engineer) and given two tasks to perform during the mission (pressing a specific button when told). For example, one of the commander's buttons initiates the rocket's first-stage separation, and the other activates manual flight control. The spacecraft's on-board self-automated pilot will perform each task if the rider does not respond to his or her prompt from Mission Control or if there is no one to perform the task. Also featured are various labeled buttons and switches which the rider may play with but do nothing; they are only there to add to the realism aspect of the ride.

The mission includes liftoff from the ISTC, a slingshot around the moon for a gravity-assisted boost, a brief period of simulated hypersleep (to pass the lengthy time required to reach Mars) and a descent for landing on the Martian surface. As a training exercise, the mission contains several unexpected situations that add to the drama.

The attraction is a multiple-arm centrifuge that achieves the illusion of acceleration by spinning and tilting sealed capsules during the four-minute "mission." Fans blow air gently at riders to help avoid motion sickness, and a magnified display in front of each rider simulates a window to space with high-resolution computer-generated imagery. Mission: Space comprises four separate centrifuges, each with 10 capsules holding four riders.

The attraction exposes riders to forces up to 2.5G, more than twice the force of gravity at the Earth's surface (effectively multiplying a rider's weight by 2.5). A few months after the ride's opening, motion sickness bags were added within easy reach of riders.

So after hearing all the warning, and asking if I'd be okay I bit the bullet and went for it. Josh and his brother in one capsule, me, my sister in law and mother in law in another. The first thing I see inside is barf bags and I grab one. This ride simulates launching into space and the feeling I had would be what I would have imaged it would feel like. You feel your face pull back and I gritted my teeth and held on. They keep warning you, KEEP YOUR EYES OPEN so that you don't get disoriented. Not something I wanted to do so I kept them open. The g's you feel as you sling shot around the moon was nothing nice either. It was extreme. One of my favorite warnings was: 

There are also signs which instruct the rider to keep their head flat against the headrest, stating that if one ignores this, the centrifugal motion acting on one's head can cause undesirable effects such as dizziness and/or headaches, or possibly even more serious effects.

That sounded horrible. Why even create a ride like this? Then I discover that 2 people have died on that ride. A 4 year old and a 49 year old. I'd skip this ride if I were to give anyone a review of it. It wasn't that wonderful that I would risk all the warnings again. I was so nauseous after that ride. BLAH! 

So Epcot was done early but that was fine because Josh's brother, his wife, then Josh's parents were going to be heading to the airport. We still have 2 more parks to visit and granny and gramps will be staying to go to Sea World with us. Josh, Hailey, and I will be heading to Universal Studios and Islands of Adventure the next day. 

Thanks for reading...to be continued! 

Happy 5th Birthday Hailey!!

Dear Hailey,

I can't believe you turned 5 today! Even though you don't live the life of a typical 5 year old, your life is pretty amazing. The fact that you are here, and that you are mine is all I need. You have taught me SO much and you have open the eyes of so many. Being a special needs child or a child with disabilities doesn't define you. You are always smiling, you are always willing, and you are always fighting this huge battle that no child should have to.

Every time you get pushed down you fight to get back up. 8 months ago you couldn't bare weight on your legs without spasms taking over. You were unable to swallow safely and had surgery to place a tube in your stomach so that you could eat. You couldn't lift your arm to itch your nose, and you couldn't tell me that you loved me. In 8 months you have bared weight on your legs and with assistance were encouraged to walk. You have started to safely have foods placed in your mouth and re-learned to swallow. 99% of your food is via feeding tube but you are okay with that if that is how it has to be. You have began to lift those arms again, and I heard you tell me you loved me. I love hearing you say that!  A few days ago I heard you laughing so loudly in your room. It was about 4:45 in the morning. I peeked in on you and you had used your bed rails to pull yourself to sit up. You were so happy and you were laughing about your achievement. It was amazing to see you do that!!

I often think that if there was a way for me to take your burden, how I would do it in a tenth of a second, so you could live the life of "normal" child. I don't think I would have your willingness or strength to fight as you do. I don't know if I could be as strong as you are. You have taught me more then I could ever explain.

You are the happiest little girl I know. I remember when I was first told of your disease and how much I cried. I tried to not cry in front of you, but the tears would get their way. You would come up to me and tell me, "don't cry mom, be happy like me." I will always remember those words you said to me. I want you to always remember how much I love you and how very special you are to me and to everyone that meets you and learns your story.

We know the pattern your disease has and we know that you may get knocked down again. Your dad, family, friends, dogs, and I will always be there to help you get back up and fight again. You keep being the wonderful sweet you that you are Hailey. I love you more then I can ever express. I will try every day to be happy like you!

HUGS and Kisses
Love,
MOM!

Hailey's Make a Wish - Becoming a Princess

Part of Hailey's Make a Wish was to be a Princess. You can accomplish this at the Bibbidi Bobbidi Boutique. Now we took Hailey to do this in California, but when you are a wish kid and you go it's a whole different experience!

In the beginning I was given a 6pm appointment and I knew we wouldn't be able to get Hailey to play along so late in the day. We were also having our princess meet and  greet from 10am-3pm and she wouldn't get to be a princess WITH the princesses. I called and called and this place is JAM packed. I had no luck changing the appointment. One of Hailey's "likers" on facebook suggested I go as a walk in. The stars aligned and as I got in line a lady in front of me spoke the words, "my daughter has an appointment in 10 minutes I have to cancel." I was then able to get that spot for Hailey and we were in! 

One excited little girl! She was able to pick a dress and with how much she loves pink, I would have bet that Sleeping Beauty would be her inspiration. Nope. She wanted the blue dress, because that's daddy's favorite color. How cute is that? Cinderella, coming up!

 They really made this place look like a fancy boutique! 

 After getting dressed as Cinderella it was time to meet our Fairy Godmother in Training. Hailey wasn't able to completely hold herself up in the chair for that long, so she sat on my lap.

 We got our BBB Cape on and now we have to pick a hairstyle.

 Of course Hailey picked the hairstyle that included a CROWN! 

 Decisions Decisions. What color crown to pick?

 BLUE!

 This was Hailey's Scepter that came with her outfit! 

 This is great shot of the Boutique!

 Gel, brush, spray, rubber bands, and bobby pins!

 Look at these fairy godmother's in training having some fun. What a cool job! 

 Princess Pink Nail polish! 

 These little face jewels were a HUGE hit with Hailey. She LOVES those things. Luckily they gave us extra!!

 Thank you Fairy Godmother! You do great work!

 We were also scheduled with a photo shoot that we did. I have to re-find those pictures since they were lost when my computer crashed. 

Now it's off to meet some real Princesses!! Here we go! **Side note: I never knew that at the magic kingdom you couldn't walk through Sleeping Beauty's castle? I find that odd. 

 Hailey has her autograph book and pen ready to go! 

 Look! Twins!! Hailey loved to touch and hold hands with each princess. They each gave Hailey a little extra attention. We had one happy little girl. I bet these princesses don't realize how special they are to little girls that come see them.

 Cinderella.

This was a great part of our trip. Hailey was in such good spirits while getting her hair and make up done. A smile from ear to ear with each princess she met. 

Special thank you to Hailey's Aunt Megan (my sister in law) for taking all these great pictures for us. I wouldn't have had these since I was holding Hailey in the chair. These are very much appreciated! Thank you Aunt Megs!!