Silent auction

Don’t forget our online auction goes live at 10:00 PM MST tonight and runs through May 6th at 8:00 PM MST. This will greatly help with the future costs associated with Batten disease.  It will allow us to renovate our home to make it wheelchair accessible, convert my van to be wheelchair accessible and the many other things that we know will come up.

We thank you all for everyone’s support.  It means so much to us.
Stacey

https://www.32auctions.com/organizations/24427/auctions/28968?reset_filter=1

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The trip of a lifetime

I apologize for it taking so long for me to get around to writing about our trip, but between getting back into the swing of things and just doing daily life, it has taken some time.  Plus I really wanted to put some thought into our trip to ensure that I was able to properly convey how amazing it really was.

Our trip really started the morning we left.  We went outside to get into the limo and were surprised to see so many wonderful faces in our driveway, cheering for Nathan!  There were signs and pom poms and lots of friendly faces, some that we haven’t seen in years.  It was literally one of the most amazing things I have ever seen.  We were genuinely so surprised.  One moment that will forever stick out in my head as we drove off, we turned around and all the kids were chasing the limo.  I remember looking at Jay with tears in my eyes and telling him how much I wish Nathan could have seen that.  He is so loved by so many.

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We started our trip off with a wish extension.  We opted for a few extra days to spend at Disney World.  I mean, if we are going to put Nathan on a plane for four hours, we were going to make sure we made the most of it.  That was the hard part of the trip.  Last year when we went, Nathan was able to ride all the rides and go for long periods of time without any problems.  This year was just so much different.  On the 3rd day there, Madison said to me “Mom, we have been here for three days and have only been able to go on 2 rides.”  It was sad to realize that Nathan just couldn’t keep up the same way he used to.  When we travel, we have him in a wheel chair as it is so much easier to get around.  But even with that, it was just so hard for him.  We would get to a park and I think it was just too over stimulating for him and the lines made it had to be patient.  We would ride a ride and then have to leave to go back to the hotel.  We even spent one day just hanging out at the hotel.  It finally dawned on us, that we have to go at Nathan’s pace. I know this sounds like such a simple concept, but when he has been so able to do these things in the past, it was hard for us to realize that he just can’t anymore.  Once we slowed it down, that part of the trip became much more enjoyable.

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Our official Make-A-Wish started on March 11, Madison’s 14th birthday.  My heart went out to her.  What 14 year old wants to spend their birthday in the Orlando airport.  She is just so amazing.  She took it all in stride.  We were able to take her to Macaroni Grill and they sang to her in Italian and made her feel special.

We woke up the next morning and headed to the port.  We were sailing on the Disney Fantasy.  We have been on many cruises, but this ship is truly amazing.  It was beautiful and the attention to detail was remarkable.  We had the most amazing room with the biggest balcony I have ever seen.  It was on the back of the ship and wrapped all the way around.  We had a lovely fruit basket waiting for us.  Throughout the cruise, we would receive little goodies everyday from Sara, our Make-A-Wish coordinator.

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The first couple of days at sea we spent just relaxing and getting to know the ship.  I am sure we never saw half of it, but what we did see was spectacular.  We were able to have down time and rest, which we all needed desperately.  They have a full size theatre on board and we went and watched The Good Dinosaur.  It is this sweet movie that is all about family and how important everyone is to each other. Very fitting that we happened to go watch that movie.  A neat thing that Disney does is something called “rotational dining”  You go to one of three dining rooms each night, but the staff follows you.  It is nice as you get to know them and they know you but you get to go to a different dining room each night.  We started in the Royal Court then to Animators Palate and finally Enchanted Garden.  The Animators Palate is themed after Finding Nemo.  It has TV screens all over the dining room where Nemo, Dory, Crush and other characters will come by your table and interact with you if you are sitting by a TV. We were near a TV but not to the point where we could interact. (Remember this part of the story, it will come into play later:)).

On March 15, we arrived in Tortola, British Virgin Islands.  It is a beautiful island that has beautiful green hills and turquoise water.  Today is the day we were able to do the Dolphin encounter.  We arrived and put our life jackets on and then had to walk down about 7 steps to get into the lagoon.  Once in, you stood on a pretty narrow steel platform that was covered in moss.  So imagine being blind, this could be pretty scary.  Nathan is very afraid of water as it is, so we were not sure how it would go.  Madison had the biggest smile on her face I think we have ever seen.  She loved it.  Nathan, not so much!  He held on to me for dear life.  He was very scared and was having a hard time calming down.  When it is your turn to touch the dolphin and shake its fin and kiss it, they want you to take two steps forward and do hand commands.  We tried to help Nathan but he was not having it.  He was able to hold his hand out and feel the Dolphin when it swam by.  And that was ok, we were not going to make him any more scared than he already was.  We all took our turn playing with the Dolphin.  I will say, it was out of my comfort zone as well, but am so glad that we did it and made a happy memory.  Later in the evening, there was a point where I was alone on one of the balconies and overheard a couple of guys talking about the Animators Palate and how they help do the Crush voice.  I told him that I did not mean to interrupt, but had to let him know how much we appreciated that type of detail having a blind son.  It was nice for him to be able to listen and interact in that way.  The gentleman was intrigued with our story and said he was going to make something happen.  He got our room number and said he would be in touch.

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On March 16 we arrived in St. Thomas, U.S. Virgin Islands.  This island is absolutely beautiful.  It also has the rolling green hills and the clearest water you can imagine.  Today, we went on the Screamin’ Eagle Jet Boat.  They take you out in the ocean and you go really fast and then they do 360 degree turns.  We should have known it was going to get wet when the Captain put on a rain jacket.  He would go really fast and then slam the brakes on and all the water would come over the top of you.  Madison and Nathan both had HUGE smiles on their faces and were screaming happy screams the whole time.  It was an absolute blast.  When we got back, Nathan met this wonderful young lady named Rhonda who of course he proposed to.  They played catch and just laughed together, she was so sweet with him. When we got back to the room we received a call asking if we would come to the Animators Palate dining room the next day when it was closed for a Magical Moment.

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The next day was spent at sea and more relaxing.  That is the best part of cruises, is that the really do force you to relax.  We headed to the Animators Palate and were greeted by several people who worked on the ship. They opened the dining room to just us and sat us in front of the biggest TV screen that they had.  All of a sudden Crush came on the screen and started talking to Nathan and Mackin’ Madison!  What they didn’t know is that I had already given the gentleman information about what Nathan likes and what he would be interested in talking about.  So Nathan and Crush had a conversation which he thought was fantastic.  That was such a special memory for all of us.

March 18, we arrived in Castaway Cay which is Disney’s private island.  This was a gorgeous island.  It is very small, only 3 miles by 2 miles.  When you get off the ship they have a tram that will drive you to whatever part of the island you want to go to. We went to the beach and got snorkeling gear and inner tubes.  Nathan not wanting to go in the water was very content to just sit in a little chair with his bottom in the sand and legs in the water feeling for seashells.  Maddie played in the inner tube in front of me and Jay went to the snorkeling area and saw lots of fish and even a stingray.  It was a very relaxing day.  We had to head back to the ship early as we were invited to meet a Mystery person.  We headed up to the 14th deck which is where the Captain’s area is. We went into this private room with one other family that was on their Make-A-Wish trip as well.  In came Captain Mickey!  It was so cute to watch Nathan feel every part of him.  He loved feeling his outfit and his nose and ears.  Mickey didn’t talk but Nathan had plenty to say.  It was interesting, I had not had a hard time the entire trip, but for some reason in that moment, I could not keep it together.  I started to cry. I think it was the first time on that trip that I realized the reason we were on it.  The gravity of that really sank in with me and I could not keep it together anymore.  Mickey even came over and gave me a hug.  It was nice to connect with another family who understands the struggles of having a special needs child and to see them happy if only for a few moments.

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We spent our last day at sea just relaxing.  We finally talked Nathan into doing the Tube slide.  Of course he loved it!  He was only able to ride it twice as there were about 50 stairs to get to the top and that is a lot of work for him.  I rode with him the first time and then him and Jay went down the second time.  Another favorite thing was the arcade.  We went there every night after dinner.  The kids loved to play air hockey and ride the motorcycle ride.

I can truly say that it was the best week of our lives.  We needed that so badly.  We have had so much heartache and pain over the last couple of years, we needed that moment in time to be frozen in our mind and it has forever been etched in my heart.  We know that so many people prayed us through this trip.  Trust us when we say we felt your prayers.  We know they carry us in the darkest of times and rejoice with us in the happy times too.  We are so thankful for each an every one of you.  It means so much to us that you follow our story and share it with people so that others may know about Nathan as well.  We appreciate all the emails, comments, calls and texts that we get from people just checking in.  It really means more than we could ever say.

From the bottom of our hearts, thank you to Make-A-Wish Colorado  for providing our family with memories that will forever be with us.  I could never put into words what your organization has meant to us and what that trip did for us.

Stacey