Hello All! Well it has been a week since our adventure on St. Patricks Day. I finally have the video from that day ready! Also, If you look at the pictures page, there are some new pictures from Amelia’s Macy’s fashion show. She had a really good time being the center of attention, even if she wont admit it. Look at the Pictures and check out this video. PS It is also the video in the sidebar!
Image via Wikipedia
Christmas at our house has always been a big deal. This year we got to experience some Christmas magic Make-A-Wish style. One of the local radio stations, KBER 101 to be exact, sponsored a ride to the “North Pole” on the Polar Express for the Make A Wish kids and their families.
Of course we had to sign up. We all met at the radio station early that morning and boarded charter buses, headed for the mountains here in Utah and the “Polar Express”. The ride is about 40 minutes from Salt Lake into the little town of Heber. Of course we watched the Polar Express movie on the ride before stopping at McDonalds for lunch.
Some back story here. Back in the day Heber City was a big stop on the train lines. Over the years as cars have taken over train travel, they still preserve some of that nostalgic train stuff. Years before, you could take a ride on the “Heber Creeper” and experience what it was like to travel in the 1800’s and early 1900’s. It is fun to see some of the things that you may have only seen in movies before. They have different class cars, the first class ones have fans and fancy paint, snack cars and the lower class cars which are still in great shape. Over the winter, they have turned the Heber Creeper into the Polar Express. You board the train and take a ride over the river and through the woods to Santa’s Workshop in the North Pole! Expensive most of the time, but fun for the kids.
After lunch we headed to the train and boarded. It was a wonderful day with plenty of sun! Riding the train was a fun time for all of the kids. They spent the time rehearsing their Santa speeches and getting their letters ready. What better way to get the stuff you want for Christmas than to give your letter to the Man himself? The train is fun on its own too, the conductor punches your tickets and they get to blow the horn at every street crossing. One of the DJ’s from the radio station came around and led us in Christmas carols.
Finally, the train stopped but we had no idea where Santa’s workshop was. It seems that he needed to move into some nicer digs and so was up the road a parcel, where the train didn’t quite reach. So we hit the buses again for a short ride. Then we were in a rather nice lodge with some great pictures of the 2002 Winter Olympics on the wall. And there was Santa as well as a bunch of people from the radio station.
Again, the people who do things for the Make A Wish foundation are so great. This whole party was brought about by KBER, its employees and the listeners. And it was fantastic. No one went without toys, hot chocolate or cookies. No one felt isolated. All of the staff and volunteers were very nice and helpful to all of the kids. It is a wonderful feeling to go to a place where people don’t see kids with ‘something wrong” they just see kids.
Amelia has some great scars but they don’t show when she is wearing clothes. Many kids have physical problems that are obvious. Some are on ventilators, or have tracheotomies; some just have various types of dystrophy that keeps their bodies from looking like something in a magazine. I will tell you, those kids are strong. They are some of the hardest fighting people in the world. They live day in and day out with people staring at them and walking the other way. They live with people giving them odd looks, or being sympathetic when these kids just want to be treated normally.
We had some of this when Amelia was on dialysis. She had a feeding tube in her nose and a catheter in her chest close to her neck. Sometimes this catheter would show. Now these are simple things and not scary and not as dramatic as some kids have. You wouldn’t believe the looks we would get for a baby with a feeding tube in her nose. People would walk the other way. People would start to talk to us and jerk away when they saw it. It was a horrific thing to see the catheter. And it was all bull. There is no reason these kids can’t be treated as normal. And that is what they got up with Santa.
We waited in line to get to Santa and we got to see him. I am convinced he was the real Santa. He held each and every kid. He talked to each and every one, no matter their infirmity or disposition. He took kids from their wheelchairs to hold and get a picture. He did whatever seemed the best idea at the time. He was fantastic.
When our turn arrived, the kids took their letters to him. With Cameron on one knee and Amelia on the other he read both letters and talked to them, not in a hurry for them to get down or wanting to rush them. It was special for them all. And they took some great pictures that are not only in our Christmas stuff now but were up on the wall at KBER as well.
The kids then got to pick out a toy from Santa’s sleigh. They each took their turn and got what they wanted. We then colored pictures for the radio station to say thanks for everything. After that, it was back on the buses and back to Salt Lake.
The kids will never forget that trip. They will never forget any of the things that Make A Wish does. **Disclaimer- this blog is mostly about Make A Wish and our trip through. I have not forgotten HopeKids; we still attend things with them as well. They will always hold a special place in our hearts and we have not forgotten them. This blog is just about this Make A Wish journey. There will be more about HopeKids here and there as well as on other blogs. They were first for us and we will always be with them.**
It is nearly overwhelming the outpouring that we get from Make A Wish. I can see how it would be so easy to get greedy and just want to take, take, take. Fortunately, our family is not like that. We have raised our kids to be humble and thankful for things. HopeKids and Make A Wish are organizations that give so much, with their main goal being to make kids happy.
We are continuously humbled and overwhelmed by the “giving” that goes on with both of these organizations. It is sometimes hard to accept the generosity and to feel that we actually “deserve” it. Part of that is because Amelia is healthy and doesn’t act like she has a transplant or a lifelong disease. She is here, she is alive and healthy. That is all we have ever asked for, and then we get more. All we can say is thank you, again and again, thank you.
Halloween time came with Amelia in the hospital again. This time it was only for a couple of days because she had a high fever. Again. The only problem that she could see was that she would not be able to attend the Make A Wish Halloween party. She was fine missing the Boo At The Zoo, but not the Make A Wish. The rest of the kids and I did trick or treat for her at the zoo so she did fine.
She still wanted to go to Make a Wish! So we called them and, can I just say again how wonderful these people are. They told Amelia that they would hold a bag of candy for her that she could come and get when she was feeling better.
A personal note, many times I cannot believe the kindness and generosity of everyone we have been associated with at Make A Wish. They go out of their way for these kids and will bend over backwards to take care of them. And I know it is not just Amelia, they do the same for all of the other kids that we have seen.
So Amelia gets out of the hospital on the Saturday before Halloween, just in time for our neighborhood Halloween Party. The next Monday, we went to Make A Wish so that she could get her bag of candy. We expected a lunch sack size bag and that is what she got. 2 of them. Stuffed to overflowing. And another bag besides! They took her around to trick or treat at the offices and really gave her a ton of candy so that she could share with the other kids.
She probably got the better deal this way, with more candy than if she had gone to the party, but we will never know. The other kids may have received that much as well.
20 oct
Image via Wikipedia
The appointment was set for October 20. The whole family was invited to the Make-A Wish tower to have Amelia formally declare her wish to the Wish Wizard. We were the only ones there besides the 2 ladies that would be working on Amelia’s wish. We entered the front door and there was a large sign welcoming Amelia to her Wish Declaration!
From there we got a tour of the facility and got to see stars that all of the wish kids get to raise when their wish gets granted. We then continued through the building where each of us received a wish token that we took out and got to toss into the fountain.
Back inside, we went to discuss what Amelia would like for her wish. They have a great game that helps the kids to decide what their wish will be or to help the volunteers make sure that the wish is for the wish child and not for the family or someone else is pushing the kid.
Amelia however, did not need to play the game. She knew what she wanted to wish for. Her wish? To be Rapunzel in the parade at Disney World. Now a little background here. During the initial call about her wish, we told the gentleman about it. He told us that it probably was not going to happen because Disney doesn’t let people do that. So, her second wish was to be Rapunzel and have a tea party with all of the princesses at Disney World.
Yes, Disney World was her idea as well. She said that she had already been to Disneyland and wanted to see the other castle. So Disney World it is. She wrote her wish down on a special paper and then had to wait for the rest of the family to fill out our own wish for Amelia. These wishes were things just for her, to have a good time, to stay healthy etc.
2 weeks before our appointment for wish night Amelia received a package in the mail. It contained a special announcement and a key that would unlock the special “Wishing Room” at the Make A Wish headquarters. After we all finished with the wishes, Amelia was led to the Wishing Room and had to use her key to enter.
This was quite the “royal” adventure for our princess. We entered the Wishing room in the tower of the foundation. There was a water wall, and fancy lights, and a very, not solemn but peaceful feeling. We all read our wishes to Amelia and she put them in a special envelope. She then had to follow a special path of lights on the floor, behind the water wall, and around the other side to the special wish portal of the Wish Wizard.
This was a large, brass cone in the floor. Her wish was rolled and placed in a special cylinder that went into the wish portal and was accepted by the Wish Wizard. She had made her declaration and she was ready to get some cookies.
We talked about some particulars and then were ready to wait for her wish to come true! They would be telling us about it in January sometime because they have to have the OK from her doctor to go. That OK is only good for 6 months and it would be June before we would go on the trip. So we went home and waited!
Little did we know back in 2007 that we would be the recipients of a Make-A-Wish. We found out Amelia was in kidney failure and was permanently in ESRD or End Stage Renal Disease, needing a transplant and extended dialysis. A few days into dialysis, and during the process to figure out what was going on with our lives, the social worker told us, almost in passing, that Amelia would be eligible for a Make-A-Wish.
Brenda and I must have looked startled because she was quick to assure us that a Make-A-Wish was not for dying kids, but any with chronic diseases. A good thing she said that because we had to explain to both Grandmothers more than once that it was not just for terminal kids. For the next two years we didn’t think much about the Make-A-Wish.
We were told that she could go any time and we had planned on waiting until she was about 8 so that she could really appreciate it. Finally, in 2011 the Make-A-Wish people changed some of the rules and now they want all of the transplant kids to have their wish within a year of their transplant. We were beyond that by now but they would still honor us with the Wish, but we had to get it taken care of.
So we began the process. We received a call and gave some information and set up an appointment for Amelia to formally declare her wish. The next post is about that process.
-Justin
