Thursday, November 28, 2013


I got another call from my insurance advocate the other day. Usually when she calls I try to get the conversation over with as soon as possible. No offense to her, but having to dredge on the awfulness of Hailey's disease can be tiresome. I decided to stay on the phone a little longer this time. She had noticed that I wasn't as crass as I usually am, I was almost chipper she told me. I said that at this moment things might not be GREAT but I'm where I can handle my situations without being bitter. When she asks the same question she asks every time we speak (How's Hailey) I change my answer this time. I tell her, "you know, I have this online diary that is Hailey's website and I journal everything on there. Why don't you take a look?"

I want her to KNOW Hailey and not just know us as a name on a file that she's required by her job to involve herself with. If she's going to do her job, which is to learn and help my child, she'll need to know my child. Look at a picture of her, see how hard she works in therapy, see how much fun she has at school, see us having to go to Utah every 3 months for Dr. appointments. Read about how I felt at different times in our journey. I gave her our blog name and told her that it's her choice whether she reads or not, but if she wants to know "How's Hailey" she'll read.
I often pass on Hailey's blog to complete strangers. A few weeks back we were in Target and Hailey had a melt down. Kids have melt downs. Instead of entertaining her melt down we decided to leave Target with Hailey kicking and screaming. An older couple passed by and said to one another, "looks like THAT child could use a spanking!" I had 2 choices to make at that point. I could ignore them and continue to carry Hailey's walker out of the store and tend to my child or I could have stopped and given them a Hugs for Hailey card. I wanted SO badly to stop them and tell them, "She doesn't need a spanking. She's a 5 year old that has a terminal brain disease that often causes her to not have control over her emotions." I wanted to SHAME them. I don't know if it would have done any good though.

Sometimes when we are out and about especially driving Josh will Honk the horn at someone who cut him off and yell at the person saying they should think or maybe call them a name.  He drives like a race car driver, but everyone else either drives too slow or they are bad at it in his opinion. He likes to interfere. It's just who he is. We were at Costco getting gas and there was an older man filling his car while standing on the opposite side of the pump. A car wanted to drive down the middle of the lanes but could not because this man did not want to move. Josh explained that there is a car wanting to pass and the man said it'd have to wait until he was done. He wasn't going to move. Josh decided that this man must be told that his decision to stand and block the car trying to get by was basically stupid. I got annoyed that these two grown men had to stand and yell at each other. Call each other names. They don't even KNOW each other. The man thought he was doing nothing wrong. Josh thought that telling this man what to do was going to change his way of thinking. Neither of them gave in. They both thought they were correct. I wonder every time this happens why Josh thinks he can change the way someone acts or thinks. If you honk at someone who cuts you off does that mean they will never ever do that again? Do they even care you honked? If someone litters and you call them out, but they continue to walk away and obviously don't care what you think, will they never litter again? If I would have said what I truly thought to those people who thought Hailey needed to be spanked, would it have changed their opinion the next time they see a child having a melt down? I dunno…

Is it apples and oranges? Is Josh starting to rub off on me? I don't want to be the type of person that needs to have everyone thinks my opinion is the correct one, but I have to make a choice of what I'd do as a person. They may not want to know about Hailey, but I tell them anyway.

You never know what's going on over on the other side of that fence, with all that grass that is so green, right?

I was looking at video of last years Thanksgiving. It was only about a month after Hailey had her g-tube placed and she was lying on the couch downstairs and we all took turns sitting with her while others ate. I didn't know what I was thankful for then. She was hooked up to a machine that was going to be feeding her while we were all eating turkey, stuffing and pumpkin pie.

One year later and things couldn't be more different. Hailey will get to sit with us at the table. She'll get to taste the food everyone else is. We will be together.

I may not always understand what or why something is happening,  and I may always over think every little thing, but it's nice to know I can come here and write. Express that I'm thankful for my daughter and the lessons she teaches me on more days then just one.

I'm Thankful.

Tuesday, November 19, 2013

Ronald McDonald House - An easy way to help!

Yesterday we had a Dr. appointment for Hailey in Utah. Luckily we didn't have to drive ALL the way to Salt Lake. Even though we love SLC it's a very hard trip for us to make. Over an 8 hour drive that we have to split up over 2 days. Last year when Hailey was hospitalized at Primary Children's Medical Center we were able to stay at The Ronald McDonald House for many many days. The day she was officially diagnosed we stayed there as well. I remember them telling us depending on the day that if we could pay either $10 or $15 for our room. If we couldn't afford that there would be no cost at all. Ronald McDonald House Charities (RMHC) became our home away from home.

If you want to help RMHC there are many things that you can do. One of things we have been doing that I've blogged about before is to collect the pull tabs on aluminum cans! It's an easy and much appreciated thing to do.

If your work place has a break room where you can put a collection box please do so! You can also see if your employer is part of the Donation Match program where they will match your monetary donation.

I made my own collection box and it was extremely easy to do. If have been inspired to put one either in your home or your work please let us know!

Friday, November 8, 2013

Make a Wish Day at Rally Cross

If you follow on Facebook or on Twitter you know what an exciting day we had yesterday!! We were invited by The Make-a-Wish foundation to spend the day at the rally car races and along with that we were able to have breakfast with Tanner Foust and he also took for a spin in his car around the racetrack. This day turned out to be way more then I thought it would be. Hailey loves meeting new people, making new friends and sharing her story. I love that she makes such an impact on people that she meets. 

Before breakfast was served Tanner met with the Wish kids, and upon Hailey's turn she gave him a Hugs for Hailey bracket that he put on right away! So sweet of him!

She had lots of fun posing for the cameras (and there were a lot) with big smiles and her arm around Tanner. Hailey loved having her "special necklace" that she did not take off ALL day! 

Josh and I loved seeing how much fun Hailey was having and I think Josh was secretly getting his Make a Wish getting to meet Tanner. Josh is such a car nerd! :0)

Tanner was so personable. Sat right down, talked about anything, had breakfast with the kids. The kids were honestly too excited to even eat. They were running around all over! 
 Tanner took the kids down to the track for a ride along. Hailey wouldn't go by herself so we all hopped in the car! 

After 2 laps around the track we where told to go WHEREVER we pleased. Our credentials would allow us in the pits by the drivers or in the private suites. We took a walk around to see the other guys! While walking around we met John, the owner of Smoke'n Sams Bar-B-Que. He invited Hailey, Josh, and me to have lunch. He said, "you order ANY thing you like!" Thank you John! 

 This little girl with Hailey had become Hailey's new best friend. Her name is Amanda and she had the sweetest heart. She hugged on Hailey and played with Hailey and they never left each others side. Amanda's mom and dad were also there, and I really loved talking and getting to know this family. I talked non-stop to Amanda's mom. It's so great to communicate with someone who knows exactly what you are going through. Thank you Joann!! 

 Another person who we owe a huge thank you to is Kate (pictured below). She works for Global Rally-Cross and worked with the Make a Wish foundation to put this whole thing together. She has a passion for giving back and working with charities close to her heart. She worked so hard and I want to make sure she knows that she did an AMAZING job! Thank you Kate! 

Hailey's adrenaline was pumping after that ride around the track. The jumps were her Favorite! Thumbs up!! 

Josh thought this event was pretty awesome. It was pretty easy to twist his arm and get him to stay for the whole event and watch the races from the suite. 


While we were in the suite, after lunch, I spotted Brandon and Leah Jenner and I told Joann. She was surprised at how fast I recognized them. I told Hailey that Brandon and Leah sing music, and Hailey said, "They like Hugs for Hailey?" I told her I didn't know, but we can ask. She reached in my purse and got out 2 bracelets to give to them. We went up to them and I introduced Hailey. Hailey handed over the bracelets and gave Leah a Hug. Leah asked if it was okay to post a picture of Hailey on her Twitter account to help spread the word of Hailey and her story. I of course said YES! I was so grateful that Brandon and Leah would do something we appreciated so much. I think we gained 100 likes in a matter of hours. Thank you Brandon and Leah. Hailey loved seeing you wear her bracelets! 

This post could go on forever with details of each driver and how nice they were to Hailey and welcoming her behind the scenes and letting her in the cars and taking pictures with them, but I won't bore you!

Tanner and Kate did not send us home empty handed! Each wish child received a Puma back pack filled with fun things that were autographed. There was another person we were looking for, we knew Rutledge was at SEMA but we didn't spot him at the race. 
 Everything about yesterday was perfect. 

The way people take time to do things for others is amazing. Tracy at Make a Wish, Brandon and Leah Jenner, Kate and Tanner from GRC, you put smiles on children's faces yesterday! I can't thank you enough for that.
I will always cherish these memories!
*Special thanks to Amanda's dad Greg for some of the great pictures he shared with me!

Friday, November 1, 2013

What a difference a YEAR makes.

Last year Halloween wasn't very exciting. If was difficult to take Hailey trick or treating because she was in her wheelchair. Hauling a wheelchair up and down driveways and up and over steps wasn't easy and then we had her feeding tube going 24/7. Then you had the stares, and Hailey wasn't talking and it was just overwhelming and not fun. 

This year things are completly different. With Hailey able to take steps she wanted to go up to the houses and ring the doorbell. She is talking and she said Trick or Treat and Thank you. We only hook her up to her feeding machine during specific times of the day. She was very excited for her costume and to be with her friends to go house to house. When she got tired we put her in her stroller. She was such a trooper, pushing her body to do what SHE wanted it to do which can be difficult. 

Hailey had SO much fun this Halloween! 

 We went to every Halloween Party we were invited to. You have to take advantage of these good moments! 

People forget how tall Hailey is. She was horizontal for so long! 

 Hailey loved her Super Girl costume. She wore it half a dozen times this month! 

 Lots of fun at the School Carnival! 
 Playing games all by herself!
 Loving every moment! 

Last year I didn't expect to ever be able to walk Hailey up to a House for Halloween and have her say trick or treat. I thought my chance was gone. Hailey is always teaching me a lesson.  Whether it's to be brave, to always smile, to be determined, to keep fighting when others tell you to give up, or to be happy when you think there's nothing to be happy about. My sweet little girl has so much knowledge and she helps me grow as a person. I can't thank her enough for being my Super Hero!!!