Justin

Feb 242012
 

Walt Disney World Resort - Orlando, FloridaSo, what comes into your brain when I say Disney World???  Castle, princesses, Florida, long plane rides…..all of the above?  Yes we will be doing all of those.  And more.  I am not exactly sure everything that we will be doing on the trip right now, but here is what I know.

First, we will be flying to Orlando on an airplane.  Don’t know the airline, the time or anything else yet.  That is OK, the trip will be in June.  From the airport, we will be driving via rental car, to the Give Kids The World village.

Now, Give Kids the World Village is a wonderful place.  It is set up to help grant wishes for kids, and give them a place to stay in Florida.  It is about 10 miles from Disney World.  It has basically a small city that gives us a place similar to a condo, with a kitchen and washer and dryer.  They have Ice cream for breakfast.  They have every holiday during every week.  Disney characters show up as well.  This place is simply awesome.

During our trip we are going to be spending a bunch of time in Disney World.  We plan on hitting all 5 lands during the 6 days.  Amelia will get special treatment the whole time!  She gets to do something that hasn’t been done before, she will be made up by Disney World as Rapunzel and she will lead the parade through the park!  That was her first wish that the Make-A-Wish people didn’t think could happen.  But it did.

We are also going to hit the beach.  The kids are looking forward to getting swept off of their feet by he waves again, this time in the Atlantic!  maybe we will head over to the other side and hit the gulf of Mexico as well….probably not.

Sometime during this trip we are also going to spend a day up at Universal Studios to see the Wizarding World of Harry Potter.  Leatha and Cameron are especially looking forward to this one.  They want to go to Hogwarts for real.

So, that is a thumbnail of our trip.  I am planning on taking tons of pictures, as well as video and posting them on this site.   If you are signed up on the email list (look over in the sidebar there—>) you will get the updates the very next morning right in your email.  Or, you can just check back every day.  Or more often.  I am not promising anything now, but there may even be podcasts…. But mostly video and pictures.  And updates!  Good grief I can’t forget the updates.

I am glad there is wifi at Give the Kids the World so that I can upload all of this and share with everyone who is reading this.  Check out our new picture page if you haven’t and let us know you were here in the guestbook!  We make sure Amelia reads all of the comments from you lovely people who visit.  We all appreciate your support!

So, until the next time that we have an update, We’re coming to you live from Utah, 1019 days into the new kidney and 1764 days from the beginning of this all,

-Justin

English: Disney World, Orlando, Florida

Image via Wikipedia

Give Kids The World Village

Image via Wikipedia

 

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Jan 282012
 
Cinderella Castle by day

So the New Year has come and the guessed about date of Amelia’s wish trip is coming.  Last week we got a flyer in the mail saying that there would be a party with and for all of the Princesses in Make A Wish Land.  Of course Amelia wanted to go right away.  I had the flyer on my desk and just had not gotten around to emailing about the party yet when I got an email from one of the ladies that is working on Amelia’s wish.

She wanted to make sure that we were going to be at the party so that they could announce that her wish had been granted!  Of course I emailed right back and said “Yes she will be there!”

Amelia has been counting down the days ever since.  Finally on the 18th of January 2012 the Princess Tea Party happened.  Amelia was escorted into the Make A Wish office by a princess and then was assigned her very own princess escort.  The princesses were from the Distinguished Young Women of Utah and were just great to all of the little girls at the Tea Party.  They ate treats, danced and got crowns and magic wands.  They all had a great time.

We took the whole family because we were told that there was a special announcement for Amelia.  These princesses were so fun, they took Cameron around as a prince and he danced and had a good time as well.  Eventually, it was time for the special announcement.

Amelia was called up to the stage and was told that her Wish was going to be granted!  Not only that, but Walt Disney World had come through and Amelia was going to be allowed to lead the Disney World parade as Rapunzel!  If you recall from previous posts, they usually do not do this and even the Make A Wish people were blown away.  Needless to say, our whole family is excited.

So now, we make plans and get things ready to go to Florida!  There is a lot to do but so worth it.  We just keep saying thank you to everyone at Make A Wish, they are truly making dreams come true.  More to come as we find out!

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Jan 282012
 
KBER

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.

Jan 282012
 

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.

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Jan 282012
 

20 oct

Wishes fireworks shows in the Magic Kingdom Wa...

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!

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Jan 112012
 

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

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Oct 212011
 

Hello to all who read this page!  This site is dedicated to Amelia Rose Matthews.  It exists after 16 weeks in the hospital, 2 years of dialysis and a kidney transplant, not to mention countless clinic visits, blood draws and tests.

We are now letting Amelia live her life, and be as normal a 5 year old as she can be.  As a result  of her ESRD (End Stage Renal Disease) she qualifies and is going to be granted a Wish from the Make-A-Wish Foundation!

Just to be clear, and to clarify some previously held beliefs, The Make-A Wish foundation grants wishes to children with Life-Threatening diseases.  It is not an organization that only grants wishes to dying kids.  Many of the wishes that are publicized are from kids with cancer who may be dying, but most of the kids who get their wishes continue to live happy lives!  It is a wonderful thing to grant these kids a wish, to let them be or do something that they really want to do but would not be able to do without help.  While some of these kids do pass away there are many with life-threatening diseases that make it.  The Make-A-Wish Foundation is to celebrate Life!

One nice thing about places like Make-A Wish is that you get to be a community, no a family with these other families who have a similar story or at least can empathize with you.  As a result, we all feel it when one of these kids doesn’t make it, and we are all sad for the family.

Now, back to Amelia!  If you are here without knowing about Amelia and her story I will give you a brief synopsis.  You can go to Carepages.com and read her entire story that was written in near real time with her name ameliarosematthews.  (no spaces).  Or you can wait for my book to come out with everything in it.  By the way, I am Amelia’s Dad, Justin.

So Amelia’s story.  It began at the end of April of 2007 when she was 11 months old.  She had a seizure and we rushed her to the hospital where it was finally determined that she was in renal failure.  She was put in the ICU and started on immediate dialysis to clean out her blood and balance her electrolytes.  We then spent all of June, 3 weeks of July and most of August in the hospital.  She had surgeries to remover her kidneys, place catheters and try to get her body ready for different types of dialysis.

Eventually it totaled 16 weeks in the hospital.  Home dialysis ended in September of 2007 because it was not working.  She then spent 2 years on dialysis 4 times per week.  We spent 20-24 hours per week with Amelia on dialysis.

Finally, in May of 2009 a donor kidney was found for Amelia and she received her transplant a week before her 3rd birthday.  Her new kidney came from a wonderful lady named Carol that we are still in touch with and keep her updated on Amelia.

It has now been 2 1/2 years since the transplant and Amelia is healthy and happy and a fairly normal 5 year old.  It is still odd to think that she has a terminal disease and she always will.  It is also odd to be receiving a wish for her.

For that wish, Amelia wanted nothing more than to be a Princess.  If you didn’t know her you should know she is actually a princess and dresses like one every day.  Her wish was to be Rapunzel in the parade at Disney World.  They are still working on that, she may not be able to do the parade but she will still be able to have tea with the princesses as Rapunzel. ** ** IMPORTANT UPDATE** Disney World has decided that Amelia WILL be able to be Rapunzel in the parade!!! this is something that has never been done before and we are very excited about it!

And they assure us that she will have a magical experience at Disney World.  We are getting excited for the trip.  Stay right here for all of the updates about getting ready for the trip and what Amelia is going through and what she is doing.  As well as updates on my book. 🙂

Thanks for dropping by, please use the tab at the top or THIS LINK and sign our guestbook, let us know you were here!

There are also pictures from various phases of this whole journey coming as well as some charitable opportunities over there in the left sidebar.  If you are feeling charitable, any of those fine organizations would love to have your tax deductible donation.  All of those companies have helped our family over this whole ordeal, or will be helping for Amelia’s wish.

Thank you for dropping my, we look forward to your return!

**Now, click here to go to the blog for recent updates!**

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