Things I wish I had known- Cruise style

For those who want to go on a cruise like our Make a Wish I thought I would give a perspective from a mom of a kiddo who is extra special! Might help make some of the accommodations and the wonderful things to do on a cruise AND on a Disney Cruise, even more MAGICAL!

First, if you can, ask for a handicapped accessible room. Even though Ty is not in a “wheelchair” we used a stroller to get him from point A to point B. We didn’t take his adaptive stroller ( aka his chair) because we had Baby ( aka Grayson) with us. So we opted for a sit to stand. With a regular state room you can’t get a stroller in and a wheelchair can NOT, I repeat, CAN NOT get into the rooms. So unless you can carry your said child, get a handicapped accessible room.

Don’t over pack. This was advice given to me by our wish granters. Lisa said that while we think we need a million shoes for every outfit, don’t. Cut down your idea of luggage in half and you will be just fine. Boy was she right. For all 4 of us, we fit everything into 2 suitcases and a carry on. You truly only wear 4 things. Capri’s/shorts, a clean shirt every day, undies and a swim suit. You can even bring something nice to  change into for dinner that is clean etc. But really pack light. If you must or need there is laundry services. Coin operated if you don’t want to pay a fee for them to do it for you.

Unless you have made travel arrangements with the cruise line ( like flight/hotel/ get on the boat) go to walmart before you board the boat. Get yourself a bag/suitcase and fill it with snacks ( licorice, crackers, and WATER) while there is water and soda available all the time it is not in a convenient location. We were on deck 6 and the water and soda was on deck 11. If you cant make a walmart run, bring a big container you can fill with water/soda.

Take advantage of family activities. Sit down and  look at the daily itinerary and plan. Big events=get there 30 minutes early. We did what we did in accordance to what Ty could handle. We did have a lot of down time on some days because it was a lot of stuff and some was overwhelming. But we did push him a few times and we loved it.

Take more pictures and even more videos and don’t forget to have them all together as a family. The boat does have people who take pictures and you can purchase them but they are VERY expensive. So we opted to not purchase and we really did avoid even having our picture taken by them but many people will take your picture for you. Take advantage.

If you are capable.... WALK don’t use the elevators. While it is so convenient to hope the elevator to go up a floor, Don’t. Unless you really can’t walk the stairs, try to avoid using the elevators. Why? Because everyone uses them and when you are trying to take a kid who can’t walk you can’t get IN to one. We had to carry the stroller down a few flights of stairs and even opt to not take it and CARRY, yes WE CARRIED Tyler up or down a few flights. At one point we waited 45 minutes to get on the elevator that was just packed with kids going up to the pool. It wasn’t that we didn’t want to walk, it was that we couldn’t. We stood and waited with many people who had wheelchairs trying to get up to an activity.

While we did opt to buy up and go to the adult only restaurant 2 nights, one of them was so out of our league ( like we didn’t understand the waiters cause they all spoke fluent french and the food was NOT what we even liked.) In fact, I left. I didn’t like it at all. It was terrible. The one night was great but one of them was not. Enjoy a night with your spouse and utilize some time to have a good time!

While we did purchase a port adventure at the Bahama’s it was not what we thought it would be. We really wanted and were expecting to see sharks and what the pictures show on google of the aquarium. We found the local aquarium to be just as awesome.  We should have just done the public beach or just some general site seeing, or heck, stay on the boat. Enjoy the pools and all the adventures they have on the boat.

We were given complimentary port adventures on Castaway Cay as part of our make a wish. We didn’t use it. We couldn’t really use the bikes and there were plenty of castaway floats, but to make the beach fun, we didn’t find we needed anything. We just enjoyed.....

Overall, enjoy. You are on the happiest place on earth-sea version. Enjoy the magic. Enjoy the fun and enjoy watching your kids smile as they see the infamous Mickey Mouse.

Our Wish Makers

So this is not to be confused with our wish GRANTERS. Our Wish makers were the ones that were financially supporting our wish. In the make a wish world there is a lot of secret to who pays and funds wishes. Unless the “funder” wants to be known it is usually left anonymous. In fact, I have only heard of a handful that actually KNOW.

Up until we got BACK from our trip I had NO idea. I wish I had known so that we could properly thank them in private. But there is no way, other than just expressing how amazing our trip was. During the nursing, vomit portion of our day I got a call from Jenny at Make a wish  and asked if we would be willing to meet our wish makers.

I said YES!! Is there really any way to properly thank someone for sending your family to a once in a lifetime experience for your kiddo who has been through WAY to much in his short years. But that for ONE WEEK we forgot that it was hard. Because it was MAGICAL instead. So of course we wanted to know.

She gave me the address of where we needed to be and at what time the next day. Tuesday ( luckily no one was sick at the moment!) came and we went to meet them. We were SHOCKED to see that it was a school. And not just a small school but a ELEMENTARY.

Why is this so shocking you ask? Well this small school raised enough money for not 1 but 3 wishes to be granted this year. They have raised over 34k in the last 3 years for the make a wish foundation. They are a HUGE blessing to the kids who get to go on a trip.

Ty was able to stand up with me while we talked about our trip. But they already knew all about Tyler ( or as much as they could know from Make a wish) and his picture was in their school. So I got to tell them about how COOL Tyler is. And how he has had to go through some pretty mean stuff in order to be as cool as he is. And that even though he acts, talks and walks different he LOVES to be a pirate, loves Mickey Mouse and especially loves the beach.

We told them thank you for sending us on the trip. Thanked them for being so generous and also for taking the time to get to know us and that we would be watching their school and if we saw something we could help or donate to we would!!

Overall the process of our wish has been amazing. In all humility, I can’t thank everyone enough. Not just those in the make a wish process but all the way down to my extended family. After I gave birth to Tyler, I had 2 of my Aunts come to my room. Neither of them have realized the impact seeing them made. That same family usually gives service for a family in need and as we got closer we realized it was us they were helping. They are always there for us. The support that we get is amazing.

I am especially thankful for our loads of docs who we love. We love them so much and they are always a call away when I am in a panic but also in need. Thank you for always being there doc!

And a huge thank you to Tyler. Thank you for always being so brave!

Make a Wish - Day 5

After our day at sea we were getting more and more excited for the day that we got to spend at the beach. Oh were we excited.

Once again I found myself up before everyone else ( I know right!) and I watched us get into port and watch as the little Disney workers were setting everything up. Something we found out a little later was that there are people who live on Disney’s island and just work to keep it nice and pretty for when the boats come in and out.

Our first glance at Castaway Cay ( pronounced Key!)




You unboard the ship with all the fun stuff you want at the ocean and they have towels there that are warm and ready for the takers and you take off down the walk way. You can catch a tram and take a ride or you can keep on walking. Because of our stroller we just kept on walking. Sometimes that made it harder to get to where you needed, but we survived and it didn’t kill us to walk. So walk we did.

As we rounded the corner we ran into a little “friend”  named Pluto. So we took the opportunity to stop and take some photos. Ty was so cute.








* Disclaimer* A few months ago my UV lens was broken. I replaced it and it was not factory sealed. Because it is nice and humid, the lens has humidity on it. Until I was able to get it off and use it without a uv filter some of the photos are HORRIBLE and blurry and the coloring just kinda sucks. But you can blame it on me. It is my camera and I didn’t want to shot with a flash.

Part of Ty’s wish was to Surf on the ocean and mouskeabunga. He had hoped that Mickey Mouse would be there but we assured him that we would see Mickey Mouse soon and that he would be able to surf and tell Mickey all about it.

His dad got him into the ocean and up on his board as soon as we got in.













Once Ty fell off and realized the water was Salty and kinda stung the eyes he was out of the water fast. But it didn’t keep him out of the water.



Our Boat from the distance!



Baby G got in on the action and was swimming with his dad .



( I was still trying to pull off my filter)

And with Filter off we have the right colors!! Hooray!





Ty ventured out on his own pretty good!








More surfing












Ty did play in the sand a little too!




And Baby Grayson got in on the surfboard action as well.







Lunch was served on the beach and there was water and soda available all day, just like on the ship. We ate and went back to the water and watched as a storm cloud moved in. Just as we decided to get out it started to sprinkle. As we got out and onto the sidewalk to get back to the boat it DOWN POURED. We were stuck in the rain. But we kept walking and getting wetter and wetter. Ty just wanted to get back to the boat and I just wanted a shower!

We got to the boat and got out our documents to get back ON the boat ( the private beach is considered to be in the Bahamas so D and I had to have our passports) and we also had to have them carry the stroller UP the boat because they didn’t have one without stairs. It was a mess. But we made it and we had a good and wonderful and a fantastic time.

We actually made it back in perfect time. We got a nice warm shower, got to do our hair and makeup and then we got to go to a Make a Wish party. It was a special event set up just for the make a wish kids on the trip. We were going to have some special guests.

It turned out it was just THE special guest. And our Special guest was ECSTATIC. We got to spend one on one time with Mickey Mouse.







I was trying so hard to fight back tears. It was so amazing. Ty was so excited and this is what was making the trip all worth it. His exhaustion, the surfing, the boat, the everything was all coming out RIGHT then. He was so in love with Mickey Mouse.



As our time got closer to being over for the other families to have a turn I wanted to pause EVERYTHING and let him have this moment forever.









That was the highlight of our night. Tyler and Grayson went to the clubs that night and Dallas and I had a private dinner at Remy ( not worth it and not my favorite) and then we had a nice night packing our stuff and getting it ready to be sent to Utah. We had a few last minute things to do and then we got a knock on the door.

Ty had a special delivery.  A Mickey Mouse that was signed Your Pal Mickey Mouse.

Our luggage was ready to go and sent off the boat. We had only what we were carrying on the plane with us. We went to bed. To wake up to go home.

A Lucky Ordinary Miracle

Tonight I am over emotional about the journey we have been on the last 5 years and the time in Holland we will have for the rest of our lives. I can't help but be thankful for so many things when it comes to Tyler and his sweet, gigantic, fighting stubborn little spirit.

A few weeks ago Dallas was doing an entry to his blog about Tyler an the story that was featured in the Salt Lake Tribune just over five years ago. We had no idea where that journey would really take us. Five years later, I still can't tell you where that journey will take us.

Five years ago we were rooming in and still not sure when we would be bringing Tyler home. We didn't know if we would be able to have him off his tube feeding and we didn't know if we were coming home by his due date.

Today, after a super awesome day and a great visit with the Neurosurgeon Tyler is doing amazing. He has beat the odds. Though he isn't without delays, those delays could be far worse. They could be far more devastating. Instead we get to watch him walk, talk and make us laugh.

Dr. Walker said that unless there is problems we are good for another year with next year being a no scan year. He of course Knocked on wood, but said that overall Tyler looks very stable. His condition, though chronic and life threatening, is doing well and doesn't seem to be making him sicker. He said generally kids who make it to age 5-6 with no seizures are usually past that concern and that Ty just looks good overall. He said he was Lucky!

LUCKY! Tyler Lucky!

Really, I think it is those who KNOW Tyler that are lucky. Not just because he is my kiddo but there truly is something about him that makes everyone he meets smile. Tense situation are lightened when he gives a kiss, says "Fank You" and most of all your heart melts when you know just how close we were to losing him so many times. ( Grandma's and mommies hearts melt when he tells you that he says "Tywer so sad and I sorwy momm-e)

Babies born as early as him generally have a lot more problems. Even some at later gestation's have issues worse than his. It really does make me thankful for him and for his Lucky deck of cards.

The last few weeks have been filled many Miracles after another. As ordinary as they seem, Miracles do Happen and we see them everyday! Oh and did I mention, Tyler's neurosurgeon is sponsoring him for a Make a wish Trip. I guess his dream of the beach JUST might come true!

We are lucky.....

When you wish upon a star

My nephew Kayden has Hypoplastic kidney disease. His Kidneys never really grew. A few years ago he was given and AWESOME gift from a family who was going through the worst time of their life. He was given a second chance of life by this family who donated their loved ones kidney.

This last year he was finally big enough to make a wish. He was big enough because he was healthy and all that fun stuff. He wanted to meet Buzz Light Year. So they went to Disney World in Florida for a week.

The wish was sponsored by some pretty remarkable people. LOTS of remarkable people. The student body at West Jordan High raised money to give to Make a Wish. This remarkable donations was able to fund 3 FULL wishes.

Kayden was the first wish to ever get to meet his wish makers. It was an awesome experience. It was very emotional and very amazing. I can't wait for us to get one of our own!

Kayden... Raising his star. When you wish upon a star. It doesn't make a difference who you are!

Listening to Kayden and Tammy tell about their trip. Kayden was HILARIOUS!

These are 2 of the girls from the High School that came to be with Kayden for his star raising. They were so sweet. I am glad they got to see it.

A wish wall. A sobering thing to see. We have 3 chronically ill children on my moms side of the Family. Between Kayden, Ty and Daphne we have seen and will be seeing a million miracles. This wall is one of those. There is a story for everything. These Hero's have a story that should be told.
This is Kayden's wish Cake. It had Buzz on it. He asked me to hold up Ty Ty and let him see it. Ty stuck his hand in it. Kayden thought it was SOOO funny and wasn't even mad.