rwrocksme
<font color=green>I turn towards the wall and moo<
- Joined
- Dec 30, 2006
The Blue Fairy Gets Her Wish: A Wish-Trip Report
*Disclaimer: I'm 16 and totally insane. There are no plans to turn down the crazy meter. You have been warned.*
I guess you need some background information. But who knows where to start?
I guess we'll start at the beginning (it's a very fine place to start). The moment I was born, they knew something was wrong. I was blue. Then, I was purple. And then I was black. I wasn't crying. I wasn't how a baby was supposed to be. So later we figured out that my air tube wasn't connected to my lungs. They repaired that, so I could breathe. That was good.
But were we done? No.
Then it turned out that I had a heart problem. My mom really is the best one to explain it, but I mostly explain it in simple terms. Half of my heart doesn't work: no blood goes in, no blood goes out. I'm also in constant heart failure, but that'scontrolled by medications.
But were we done? Was it that "simple?" No.
My left lung does not give any oxygen to my blood. Your average person holds 99 to 100% oxygen in their blood. I'm at about 65%. On a good day.
And were we done? No.
I developed a heart arrhythmia. Sometimes, it speeds up, and sometimes it goes in an irregular pattern. When the latter happens, I have to get shocked with those big pads. Although, if it didn't involve a hospital stay, and I didn't have to go under, it might be kind of cool (at least in theory).
So. What else can go wrong?
When I got older (12 or 13), it turned out I had scoliosis. And, with a severe lack of function in rather important ORGANS, that seems like a piece of cake. The thing is, kids can't make fun of a misshapen heart, because they can't see it. They can see a hump. They can call you Quasimodo.
So, that's it. Right? Can anything more happen to me?
Yes. They can put me on the heart/double lung transplant list.
I can go on a dose of meds that makes me shaky.
I can fall to the ground in the middle of the night.
I can fall again and break open my face.
And that was last week.
But it's all okay, because I have a big (albeit strange) family that loves me. I have two AWESOME best friends who would like me even if I grew fins or something. I have more optimism than anyone else on the planet (my glass is all the way full). And, I have DISNEY WORLD!!!
I love Disney. I have tons of Disney books, lots of pins...it can go on and on. We're lucky, because we get to go to the World pretty often (we live in Florida) and we've gone on a few cruises because we've found good deals and we can go when other kids are in school. But there is NO WAY we could do this trip on our own.
It's an Adventures By Disney trip that goes out to California. My mom and I are huge Muppet fans (I collect Beaker pins and she has a Muppet collection), and so the minute I looked at the itinerary and saw the words "Jim Henson Studios," I just KNEW I had to go on this trip. Also inside the studios, they have the Creature Shop, which is where they design and build the puppets. Not just for theMuppets, but for lots of other movies and shows, too: Harry Potter, The Flinstones Movie, Saturday Night Live, etc.
I know too much about this.
So then I saw "Disney Studios" and "Disney Imagineering" and the next thing I know I'm on the phone with Brandi.
Brandi is the coordinator (or, in Disney terms, the Dreamfinder) at Dreams Come True. They're based out of Jacksonvile, FL, and they grant wishes for kids in South Georgia and North Florida, including Shands Gainesville, which is my hospital.
We first talked to her two years ago, when a "teen activities counselor" at a hospital in Jacksonville (my other hospital; I have a third in Boston too) recommended me. But I'm a Libra, so I just didn't know what I wanted to do! So, they were like, "Call us when you know." I did do a fundraiser for them with the FSU Med School (and the Dean of Neurology had to use PAM to get my finger out of my chair) but I still had no idea.
Then finally, last month, I knew, and was certain....and then I found this trip. So I changed my mind. Luckily for me (because it's done and the ball is rolling), I can't change it back because I already told Donna, my "pin pal" (aka Disney pin-themed pin pal and one of my BFFs) and I get to meet her, and Brandi is setting it up, and my dad is already talking about how "I can't go because it's a Third World country out there, and I'll die or get lost, or *gasp* FALL." (But he says that if I go to thegrocery store.)
Truly, though, the whole family is excited. It's just going to be my mom and I, because I'm an only child and my parents are divorced. But everyone is all hyped up about it, and we're going, and they're getting us a date to go, and oh my gosh this is just all so exciting and I can't wait and what am I going to do until October and why am I still here and not planning like a maniac?
That's another thing. I've never gotten to plan a DisneyLAND trip before. It's a whole new genres of madness!
I love madness.
This trip report? It's going to be madness. Oh, yeah. Total and complete planning madness!
*Disclaimer: I'm 16 and totally insane. There are no plans to turn down the crazy meter. You have been warned.*
I guess you need some background information. But who knows where to start?
I guess we'll start at the beginning (it's a very fine place to start). The moment I was born, they knew something was wrong. I was blue. Then, I was purple. And then I was black. I wasn't crying. I wasn't how a baby was supposed to be. So later we figured out that my air tube wasn't connected to my lungs. They repaired that, so I could breathe. That was good.
But were we done? No.
Then it turned out that I had a heart problem. My mom really is the best one to explain it, but I mostly explain it in simple terms. Half of my heart doesn't work: no blood goes in, no blood goes out. I'm also in constant heart failure, but that'scontrolled by medications.
But were we done? Was it that "simple?" No.
My left lung does not give any oxygen to my blood. Your average person holds 99 to 100% oxygen in their blood. I'm at about 65%. On a good day.
And were we done? No.
I developed a heart arrhythmia. Sometimes, it speeds up, and sometimes it goes in an irregular pattern. When the latter happens, I have to get shocked with those big pads. Although, if it didn't involve a hospital stay, and I didn't have to go under, it might be kind of cool (at least in theory).
So. What else can go wrong?
When I got older (12 or 13), it turned out I had scoliosis. And, with a severe lack of function in rather important ORGANS, that seems like a piece of cake. The thing is, kids can't make fun of a misshapen heart, because they can't see it. They can see a hump. They can call you Quasimodo.
So, that's it. Right? Can anything more happen to me?
Yes. They can put me on the heart/double lung transplant list.
I can go on a dose of meds that makes me shaky.
I can fall to the ground in the middle of the night.
I can fall again and break open my face.
And that was last week.
But it's all okay, because I have a big (albeit strange) family that loves me. I have two AWESOME best friends who would like me even if I grew fins or something. I have more optimism than anyone else on the planet (my glass is all the way full). And, I have DISNEY WORLD!!!
I love Disney. I have tons of Disney books, lots of pins...it can go on and on. We're lucky, because we get to go to the World pretty often (we live in Florida) and we've gone on a few cruises because we've found good deals and we can go when other kids are in school. But there is NO WAY we could do this trip on our own.
It's an Adventures By Disney trip that goes out to California. My mom and I are huge Muppet fans (I collect Beaker pins and she has a Muppet collection), and so the minute I looked at the itinerary and saw the words "Jim Henson Studios," I just KNEW I had to go on this trip. Also inside the studios, they have the Creature Shop, which is where they design and build the puppets. Not just for theMuppets, but for lots of other movies and shows, too: Harry Potter, The Flinstones Movie, Saturday Night Live, etc.
I know too much about this.
So then I saw "Disney Studios" and "Disney Imagineering" and the next thing I know I'm on the phone with Brandi.
Brandi is the coordinator (or, in Disney terms, the Dreamfinder) at Dreams Come True. They're based out of Jacksonvile, FL, and they grant wishes for kids in South Georgia and North Florida, including Shands Gainesville, which is my hospital.
We first talked to her two years ago, when a "teen activities counselor" at a hospital in Jacksonville (my other hospital; I have a third in Boston too) recommended me. But I'm a Libra, so I just didn't know what I wanted to do! So, they were like, "Call us when you know." I did do a fundraiser for them with the FSU Med School (and the Dean of Neurology had to use PAM to get my finger out of my chair) but I still had no idea.
Then finally, last month, I knew, and was certain....and then I found this trip. So I changed my mind. Luckily for me (because it's done and the ball is rolling), I can't change it back because I already told Donna, my "pin pal" (aka Disney pin-themed pin pal and one of my BFFs) and I get to meet her, and Brandi is setting it up, and my dad is already talking about how "I can't go because it's a Third World country out there, and I'll die or get lost, or *gasp* FALL." (But he says that if I go to thegrocery store.)
Truly, though, the whole family is excited. It's just going to be my mom and I, because I'm an only child and my parents are divorced. But everyone is all hyped up about it, and we're going, and they're getting us a date to go, and oh my gosh this is just all so exciting and I can't wait and what am I going to do until October and why am I still here and not planning like a maniac?
That's another thing. I've never gotten to plan a DisneyLAND trip before. It's a whole new genres of madness!
I love madness.
This trip report? It's going to be madness. Oh, yeah. Total and complete planning madness!
I am SO offended!!
I wonder if the Tag Fairy is playing games with me??? First I lose my tag and now I'm losing post!!!
This one was definitely worth it! 
