Sweet Gesture

A few weeks ago I get a message on Hailey's Facebook page from a mom who wanted to let me know her daughter wrote a letter to Santa asking him to bring Hailey some Shopkins Season 2. In Las Vegas these are extremely hard to come by and it's all Hailey has been talking about. I thought this gesture was the sweetest thing to be done by one of Hailey's peers. Here is the letter to Santa that was delivered by Santa's Elf named Wink. 

Dear Santa, 

A girl named Hailey is very sick and she loves Shopkins. I was wondering if you could get her some Season 2 Shopkins. 

Love, Kenndy

How simply adorable is that? This little girl is thinking of Hailey and writing to Santa on her behalf. My heart swelled with happiness and my eyes were filled with tears. What a giving heart sweet Kennedy has. She is going to grow up to do wonderful things. After Kennedy mailed her letter, she received a response from Santa and Wink. 

Dear Kennedy, 

Such a kind heart you have. Santa and I were thrilled by your warm request. On behalf of us in the North Pole Miss Hailey will not be forgotten. Please mail this to her in your name. Thanks for keeping the magic of Christmas alive. Love your elf Wink. 

We received the package and put it under the tree. We can NOT wait to see the joy in Hailey's smile when she sees what has been done for her. She may not fully understand the gift as a whole but we do and we are VERY touched. 

Thank you Kennedy for you sweet gesture for our daughter. You will put a smile on her face for Christmas! 

My Daughter's Heart...

My daughter Hailey has a heart of gold! She is loving and compassionate. My daughter's heart is warm, thoughtful and amazing. To look at Hailey you'd say, "She's doing SO well!" I've heard that about 10 times this week and that makes the news I am about to share harder to say.

I received a phone call from Hailey's cardiologist regarding her holter monitor results from a few weeks ago. Hailey was in therapy and the waiting room was empty and it was cold outside so I answered the phone expecting the same results we hear every 6 months, that we will continue to monitor Hailey's 2nd degree heart block.

That wasn't the news I received. The cardiologist said, Mrs. Gaston, I really think it's time to place a pace maker on Hailey's heart. She has gone from a 2nd degree heart block to a complete heart block in 6 months. Her heart stops beating several times throughout the day. This needs to be done within the next few months.

I think MY heart stopped beating for a moment. I felt this heat come over me and I felt when my heart started beating again. I felt a jolt. I didn't want to start crying just in case Hailey came out early but I kept blinking back my tears.

My daughter's heart isn't working. My daughter's heart needs help.

She's had surgeries before and they have all set her back and she has regressed with each one. The last time she had surgery it was like all her symptoms of Leukodystrophy fast forwarded. She stopped talking, walking, she couldn't even lift her arm to scratch her nose, she couldn't swallow.

There is a lot that went through my head. We'll have to set up "Home" in Salt Lake City for a bit. Hailey will miss a lot of school. Recovery may be difficult if we have to stop all her therapies. It'll be SO cold in Salt Lake, there is a risk of infection. Hailey will have her arm in a sling to restrict movement on her left side. She'll be scared, confused, and in PAIN and I don't want that for her!

I know I should take Josh's advice and don't think about what you MIGHT have to worry about. Worry about what you need to when it's time. He keeps me calm.

With Christmas coming up and more people that will see Hailey I know they will say, "Look how great she's doing!" and I will nod and agree, but I will look at her heart and know that not all is well with Hailey.

I love Hailey's heart, it's better then my heart and while I may be over emotional over a simple procedure that will hopefully provide a "less dangerous" life for Hailey, it is a lot for me to process. I always try and tell myself, "it could be so much worse!" to try and get past the "why Hailey?" Even now knowing that Hailey's heart has the complete block we've been thankful we haven't seen some of the symptoms of a heart block. But it also makes believing Hailey's heart having issues is real.

A lot has happened this year and so many things have been so WONDERFUL that I need to try to roll with the punches. I'll give Hailey what she needs, I'll be there after the surgery, I'll be there through her recovery. I'll learn how to care for her with a pace maker on her heart even though I don't think I have any more room in my brain to learn anything else. It almost feels as if my life changes as soon as I get comfortable with where Hailey is at, so I don't know why I'm so surprised.

In the mean time while we wait on more information about when this will take place questions that the cardiologist needs to ask a neurologist will need to happen and then we will have to weigh the pros and cons. I'm thinking Hailey will need an MRI soon. Ultimately I'm not in charge. Yes we can say if we want the surgery or not, but that doesn't really seem like a question. If my daughter's heart needs help and surgery can help, then we do the surgery. I know PCMC is a good hospital and her team of medical staff is great and she'll be in good hands, but it will always be difficult to hand my daughter over.

We will keep everyone up to date with new news as it comes in. In the mean time we have Christmas to get ready for! Hailey loves Christmas music and Christmas lights and we are excited to get to share those things with her.

As always I am thankful to those who read this blog and hear my thoughts and offer support. It's still odd to me that this blog started out as my diary and only I knew my thoughts. Now that it's open to the world and I'm sharing all of this with all of you I don't feel as lonely. I appreciate that even if I don't always say it.

When I get emotional and teary I think back to when we were in Salt Lake in 2012 and the Neurologist told us about Leukodystrophy and how it was terminal and how I constantly cried, Hailey would grab my hand and say, "mommy, don't cry! Be happy like ME!" She is such a smart girl with a beautiful heart!

I love my daughter's heart!

Giving Tuesday

Today is giving Tuesday. What is Giving Tuesday? We have a day for giving thanks. We have two for getting deals. Now, we have #GivingTuesday, a global day dedicated to giving back. On Tuesday, December 2, 2014, charities, families, businesses, community centers, and students around the world will come together for one common purpose: to celebrate generosity and to give.

It’s a simple idea. Just find a way for your family, your community, your company or your organization to come together to give something more. I've listed just a few organizations that are close to our hearts that are a part of our lives and that have helped our daughter, Hailey, in more ways then one. 

I've talked about all the wonderful events that Make a Wish puts on for the Wish Families. I've told you how much I felt loved and welcome with Hunter's Hope and the research and help they provide to Leukodystrophy families. You read about our stay at Give Kids the World and you see photos weekly of Hailey at horse therapy at Spirit. Who could forget the wonderful birthday cake she was given from Icing Smiles? I really loved the pictures from the Peach Party we attended! Who would have thought that Hailey could smile even bigger when she saw her Frozen shoes? 

I really wanted to go into depth with each one but since I've blogged in detail I feel as if it would be redundant. If you are planning on giving, consider 1 or all of these great organizations that help families and children forget for a moment the cards life has dealt them. They have helped us to #MakeMemories with Hailey and I can't thank them enough!! 

You can follow the links to the donation pages of each organization and you can even donate in Hailey's honor: 

• Make a Wish Southern Nevada
• Give Kids the World
• Hunter's Hope
• Spirit Therapies
• Peach's Neet Feet
• Binkeez for Comfort
• Icing Smilies

Together let's celebrate #GivingTuesday

Peach's Neet Feet & Zappos Carnival

There are so many kind, generous, and talented people that want to make a difference in someone's life. A life that may be difficult, discouraging, painful or unfair. We were able to meet a few people that put smiles on kids faces. Kids fighting a serious illness or living with a disability. Kids like Hailey. When I saw that Peach's Neet Feet would be coming to Las Vegas and joining Zappos.com for a carnival to celebrate others, I knew I wanted Hailey to be a part of it. Being kind is Hailey. I've blogged about it before, but it really does amaze me that Hailey loves others. She doesn't care what you look like, if you are in a wheelchair, or how old you are. Hailey will gladly say hello to you with a big smile.

Peach’s Neet Feet is a random acts of kindness based, non-profit organization that provides custom, hand-painted shoes to children living with disabilities and fighting serious illnesses. 

I filled out an application for Hailey and then later I had found out that Hailey will be presented with her shoes at the event. We actually had a cardiology appointment in Utah that SAME day! We headed down to Utah the night before, had our appointment, placed Hailey's Holter Monitor, and booked it back in time for the carnival.

Once we got there we met Peach and she told Hailey that she wanted her to meet someone special. That someone special was the artist that painted Hailey's shoes, Alissa.

Here is how the meeting went: 

Introductions. Hailey this is Alissa. Nice to meet you! They talked about Hailey's favorite color, Pink and what was Hailey's favorite thing, Frozen (Anna, Elsa, and Olaf)

When Alissa pulled out Pink Converse shoes that had Anna, Elsa, and Olaf painted on it there was this HUGE smile that came to Hailey's face! 

Hailey couldn't wait to get those shoes on her feet. Well...over her AFO's! LOL! 

Peach and Alissa both helped Hailey put on her new Frozen shoes! 

Hailey was so excited for this gift and I was so Thankful to Alissa, Peach, and the Mayo family (who donated the shoes to be painted)  for the smile on Hailey's face. Hailey gives hugs all the time, but she really embraced Alissa with love for sharing her talent and giving Hailey something so personal. I LOVE this photo!! 

Here is a close up of Hailey's shoes. Aren't they amazing?! So much detail on such a small space. Alissa is a truly talented artist. She even incorporated the blue Leukodystrophy awareness ribbon. To top it all off the shoes even SPARKLE!!!! I can not stop raving about these shoes! I love that Hailey gets complimented on these shoes and that we can share Peach's story with others! 

To thank Peach for the awesome job she does we gave her a Hugs for Hailey shirt that she opened at the carnival. 

Hailey said that Peach was her new friend!Since this carnival was to celebrate others anyone who wanted to go was invited. An open invitation. This wasn't your run of the mill carnival either. Every child that came was given a FREE PAIR of SHOES from Zappos.com EVERY CHILD!! Isn't that amazing?! I thought that when I invited people to come to this event they would jump on the chance and be grateful for the invitation. What I didn't expect was people to ask me what the "catch" was? There was no catch! Is it really that hard to accept that this is done out of kindness? I was discouraged when I asked others to share and spread the word about the carnival and I would get a "pass" on it. I was shocked when I asked Hailey's school to invite all the kids to come down and have fun and also get a free pair of shoes and they declined as well. I simply had a hard time knowing that something so great was available to kids who probably could really use this carnival were denied the invitation. I had to get over that though. There was nothing more I could do. If I couldn't get my own "friends" to come to this I shouldn't be surprised I couldn't get strangers to come. Those who didn't come to the carnival really missed out on some great fun! Here is a brief recap:

Zappos headquarters was turned into an amazing kid friendly space that included, carnival games, arts and crafts, a petting zoo, a bounce house, and lots of food and goodies! Hailey invited her cousin to come along and my sister and my mom went also. Hailey and her cousin played every carnival game with great enthusiasm! They cheered each other on! 

The girls are sporting capes they were given by Jill who donated a cape to each child for the event!  The capes say, "Born to be Awesome!" 

Next station that we visited was a paint/decorate your own cookie. The cookie had a picture printed on it and you took edible markers to decorate it. Hailey found this to be something so amazing and odd. I kept saying, "Yes you ARE allowed to color on these cookies." Thank you to Wicked Good Cookies for this great activity. The cookies were SO yummy! 

There were also pillow cases that the kids could color and take home! 

We met Shannon and she was so great to help Hailey with her pillowcase! Thanks Shannon! 

The petting zoo was another hit with Hailey. This kid LOVES animals and this duck was Hailey's buddy following her around. 

There was a stained glass art station. Hailey grabbed for the pink paint first...of course!

We also met the person responsible for the other half of this carnival. We got to meet Dana with Zappos and we got to thank her for being a part of this and helping with getting every kid a pair of shoes! Zappos does a whole lot for the city of Las Vegas. They are an amazing company. Dana, it was so great to meet you! We hope that we can stay in touch! THANK YOU!! 

Since Hailey can not do bounce houses for obvious reasons we always give her a choice. Bounce house or face painting. We know she can NOT resist a good face painting so it ALWAYS wins and she feels as if SHE is making the choice. She got a FROZEN theme face! She loved it! 

It was like the cotton candy was on steroids!! It was huge! I am a big fan of cotton candy. 

**Side note: I love cotton candy so much I had it at my wedding reception! 

My love for it must be genetic! 

My mom had a great time with the girls coloring MORE cookies! 

At night when we got home I told Hailey it was time for bed, and time to put on pajamas. She stuck her tongue out at me, held her legs, and told me that she was NOT taking off her Frozen shoes. She wanted to sleep with her shoes on. It took some work but I did get her ready for bed with the promise that she'd get to wear her shoes first thing in the morning. 

Along with all the activities that there were for the kids they also got prizes at every carnival game and a goodie bag FILLED with fun things to take home! 

I thought this was a pretty cute prop! All the kids got to take a photo with it! 

Another awesome gift given to Hailey was this blanket from Binkeez for Comfort. It is amazingly soft and perfect! Thank you Binkeez!

As you can see we had the most fun time with Peach's Neet Feet and Zappos.com They did an amazing job putting this all together and opening their hearts to these kids. Hailey didn't stop smiling...(until it was time for bed) If you can or want to help any of these great organizations please do so. I've linked to the companies Facebook pages if I had them. You can always get more information on the Peach's Neet Feet website as well! If you're an artist or if you would like to purchase the shoes for a child check out her site!

Thank you to ALL involved, the organizers, the volunteers, those who donated and the other families we got to meet! 

Hailey meets the Thunderbirds

Hailey was invited with a few other Wish Families to see the Thunderbirds in a private show a day before the Air Show would be open to the public. We were told to bring hearing protection because those jets are LOUD. It is no joke! I had no idea where to get something that would work for Hailey. I ended up going to a sporting goods store and buying a pair of ear protection head phones that were located in the hunting section. They fit Hailey great and she didn't get startled at any of the noise.

All the wish families met up down the road from the air show and we all piled up in a bus to be transported on base. We were even given a police escort, I thought it was great to show these kids how special they are. Not everyone gets an escort on to the base.

Once there we were taken to a VIP tent where the kids were given Thunderbird pins to wear on their shirts, stickers, coloring books, and a program to be signed by the 12 pilots flying that day.

 Hailey is an honorary Thunderbird! 

 Getting all these goodies sure did put a smile on Hailey's face! 

 It's November and it was in the 90's for temperature! It was warm. You can see Hailey's pink cheeks. We had to keep this kid hydrated. 

 She loved looking at her pin. She showed everyone standing around. 

 As the pilots drove by they waved to all the kids! 

The air show was amazing. The things they can do with these planes is amazing! Not only do they have formations that they do they also demonstrate how they can make a jet creep by so slow and low to the ground. It really was so neat to see! We really enjoyed ourselves! 

Once the pilots were done they all came to the VIP tent and took time for each child to find out a little bit about them. They asked Hailey's name, how old she was, and if she liked the show. Hailey said that her favorite part was when they made a heart in the sky. 

 There was so much she wanted to tell each pilot and they were so generous with their time. 

 The pilot you see below had an American flag that he took up with him in his jet for the show. He presented it to Hailey and she gave him a huge hug and thank you! 

 She loved getting autographs!

 The pilots each showed Hailey which one was their jet.

 There was even a pilot that had the number on his uniform embroidered upside down because he spends a lot of time in the sky inverted. Pretty Neat. 

 Hailey made sure she told everyone her name and thank you. 

 Big smiles all around! 

 Hailey loved seeing the "girl" pilot! She was the only female that flew a jet that day and Hailey asked her all kinds of questions....Like if her favorite movie was Frozen...inquiring minds!

Thank you to the Thunderbirds and thank you to Make a Wish Southern Nevada for always thinking of ways to get the wish families together to make more memories. We had a great time and everyone was so nice. I'm sure all the kids had as much fun as Hailey did!

Halloween and the Grand Canyon

We were all very excited when we got the news that our friends from Canada would be visiting us on Halloween! We were seriously thrilled for the fun that we were going to have. It started off on Halloween. We took the girls to do some trick or treating at a chocolate factory that was by invite only. First stop was to take some pictures with some GIANT m&m's.

 Then it was time to play some games. Hailey would go first and introduce herself by saying, "I'm Hailey, I brought my Lauren. Say hi to her!"

It was really cute! 

 Hailey always made sure that Lauren was included and got a turn. 

 There were a lot of games to play and win or lose you get a full size chocolate bar! 

 Hailey also cheered Lauren on at each game and clapped for her friend. 

 While there we ran into Hailey's Grandma! Lots of fun! 

 Next up was getting faces painted. You know how much Hailey LOVES to get her face painted. 

 Then it was Lauren's turn! 

 We got more chocolate in 2 hours then we could possibly eat in a year! I think it was close to 28 pounds of chocolate! I know! Crazy! 

 Once we got home and looked through all the loot we went and had dinner and planned for our upcoming ROAD TRIP!!! 

We packed up the car the next day, and headed 4 1/2 hours away to Arizona so that we could cross off an item on the girl's bucket list: The Grand Canyon. 

One really neat thing that Josh discovered is that you can get an entrance pass for free if you are a person with a permanent physical disability, a citizen of the United States, and if you have a signed letter from your physician. I had all my documents ready and turned them in so we could get Hailey her pass. It was very easy and now we can take her to any park that charges an entrance fee at NO cost! More information can be found online. 

 The view from our room was AMAZING!! It was like camping with a luxurious twist....warmth! 

 It was FREEZING!! I thought we'd be okay with just a light jacket, but I should have brought a parka! I didn't have a blanket for Hailey so I grabbed one from the hotel and used that to bundle her up. Once we got to the visitors center the canyon was a few steps away. In my opinion it was very odd to think how close we were to it the WHOLE time. It was so picturesque. It almost looked like we were on a green screen set. Hailey loved the colors! 

 She loved sharing this with Lauren. 

 I loved that one of my closest friends was there with me to experience this for the fist time. It was such an amazing place. At the Canyon they have shuttles that take you to many points around the canyon. I had made arrangements with a park ranger to allow us to take our own vehicle on the road for shuttles only. It was great to be able to pick and choose which points we got out of and which we skipped. No waiting for shuttles to have to put both girls of the handicap lifts over and over. 

 The Grand Canyon has been checked off of Hailey's list!! CHECK!! 

 Hailey was ALWAYS by Laurens side. I love how much Hailey LOVES Lauren. Hailey even says she knows what Lauren wants or needs. Every time we stopped you hear Hailey say, "Lauren, we are here!!!" and what's funny is that Hailey changes her voice. Hailey becomes very motherly and sweet.

 Hailey got to have a moment with her dad to take in the view. It was very special. 

 Isn't it amazing!? This was taken with my phone! 

 There were a couple of points where some of us would get out of the van to take a quick photo and the girls stayed inside. It just got colder and colder! 

 Another thing we arranged was for the girls to take an oath and to be sworn in as Jr. Park Rangers! It was SO adorable!  When they got done taking their oath the people who stood around us all clapped for the girls! Amazing! 

 Park Ranger Marty was more then happy to take some photos to help us mark the occasion! Thank you Marty! 

 Hailey was so proud of Lauren that she had to give Lauren a kiss of congratulations! 

 My Jr. Park Ranger. Hailey was very proud to show everyone her badge! 

This was such an awesome trip. I think we all had an amazing time. Thank you to Lauren's parents for coming along with us and I want to thank Josh for getting the info on the park pass and taking care of the hotel and the driving. These memories that we are making with our kids means so much to us. We are very grateful we have these opportunities to do so!!

The Little Mermaid - Take 2

So in August when we had taken Hailey to see the Little Mermaid in Tuachaun we got rained out and they exchanged our tickets for another show. We decided to go on Columbus day after Hailey got home from school. We weren't going to stay the night so it would be a quick trip!

The show was a lot of fun! Even more fun if you are not drenched in the middle of intermission looking for shelter in your $3.00 poncho. 

After the show Hailey was Hailey to meet and greet ALL the actors in the show and she even got them to all sign her ticket. That was her favorite part. She loves to get autographs! 

 The stars of the show Ariel and Prince Eric! We sat second row and during the bows Hailey blew Ariel and Kiss and Ariel blew on back! Hailey was giddy! Ariel even brought it up when they met.

 A hug for Hailey!! 

Prince Eric was pretty dreamy!  

Ursula the Sea Witch was one of Hailey's favorites because she's purple!  

It was a great show and we had lots of fun seeing how happy Hailey was. I love being able to do these things with her. The more memories the better!!