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Old 04-09-2009, 09:39 PM   #1
rwrocksme
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Talking The Blue Fairy Gets Her Wish: A Wish Trip Pre-Report

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!
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Old 04-09-2009, 11:37 PM   #2
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So happy for you, blue fairy!!! Enjoy your wish trip planning...it makes the whole thing REAL!!!!

May every child's wish come true...and their parent's too!
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Old 04-10-2009, 04:46 AM   #3
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long time lurker on the wishtrippers thread but I feel to you I have to respond...
First you are going to have an amazing time out in California for your trip...
Second if you have any questions about DL I would be glad to help as a regular goer.....
Your story is amazing and the humour you bring to it shows you have an amazing personality....
If I can help in anyway with your planning please let me know
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Old 04-10-2009, 05:24 AM   #4
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What a wonderful story! Not all the medical stuff but YOUR attitude! I can tell already that you have the BIGGEST heart and can't wait to follow along on your journey!

Disneyland is one of MY favorite places! I have only been a couple times but they were just wonderful. I can only dream about an Adventures by Disney trip and Jim Henson studios!

I cannot wait to read more!
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Old 04-10-2009, 07:18 AM   #5
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WELL!! HRMMPPH!! I am SO offended!!

J/K

I WAS your first poster last night but somehow it's not on there! I wonder if the Tag Fairy is playing games with me??? First I lose my tag and now I'm losing post!!!

Oh Well!

i had just said that I Do enjoy your writing style!!! I am really going to enjoy following along on your journey!!!

You have a GREAT positive attitude which is what will ensure you a great fullfilled life.
When my DH first had kidney failure we watched a training diallysis video of an 18 yr old boy that had been on dialysis for several years and one of the things he said has always stuck with me. it helped us see our life better and it's what we now try to instill in our kids.
He said I can let Dialysis control my life and moan and groan about my illness and not having a "normal" life Or I can step back and say "What is normal?'
"Normal is whatever you normally do in your life. Just like you HAVE to brush your teeth 3 times a day or you or going to have some major teeth problems. I have to do dialysis. It is routine. It's part of me. This is my norm. Drs, nurses, hospitals, catheters, meds, meds and more meds. But it's my lofe and I'm going to have the Best time in my life Everyday that I can. I control it and you control your life too."
My youngest DS my "WISH" child has never known anything else in his life. His condition does not "HAVE" him He Has his medical conditions!! It's just part of who he is and he is so much the better for it with his attitude.

I see this attitude in you and I think It's awesome!! And hey 2 BEST FRIENDS???? That's Great most People are blessed to have 1 friend that will stick by them in their lifetime!!

Looking forward to more!!
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Old 04-10-2009, 12:00 PM   #6
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Great start to what looks to be a VERY interesting trip report, cant wait to read more!!!

I just love your attitude! My daughter becca also has O2 issues, she has a lung condition where her O2 sats hover around 72% at the moment though through time they will get lower and lower as she grows. She doesnt let it bother her, she does her best with what she has. She finished up in hospital due to an abscess in her brain (her blood doesnt get filtered properly because of her lungs being stupid) but she is fighting her best fight to get out of hospital and back home - she really, really, really, wants to be home for her birthday at the end of this month.

Other than the Jim Henson Studio's what else are you going to be doing with your time, how long will you be in "The Land" for????

Oh, before I forget.....We all need photo's please, pretty, pretty, pretty please
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Me ...... David ...... Becca
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Old 04-10-2009, 05:30 PM   #7
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This is FANTASTIC.

I love, love, love your attitude!

I am totally subbing to this and am so excited!

I am proud of your courage and you have so much to teach those of us that think life is hard.

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Old 04-10-2009, 07:27 PM   #8
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Quote:
Originally Posted by meg137637 View Post
long time lurker on the wishtrippers thread but I feel to you I have to respond...
First you are going to have an amazing time out in California for your trip...
Second if you have any questions about DL I would be glad to help as a regular goer.....
Your story is amazing and the humour you bring to it shows you have an amazing personality....
If I can help in anyway with your planning please let me know
I had to come back and re-read this one.

I LOVE it!!!!

And I love that you came out of lurking to post. This one was definitely worth it!
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Old 04-10-2009, 08:14 PM   #9
rwrocksme
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Quote:
Originally Posted by meg137637 View Post
long time lurker on the wishtrippers thread but I feel to you I have to respond...
First you are going to have an amazing time out in California for your trip...
Second if you have any questions about DL I would be glad to help as a regular goer.....
Your story is amazing and the humour you bring to it shows you have an amazing personality....
If I can help in anyway with your planning please let me know
Thanks! I went to DL once, but I don't remember it at all, and I wasn't old enough to really get into the planning THING, you know? My first question, I guess, is what's your favorite ride at each park? We won't have a whole lot of time to ride rides there, so I want to hit the best stuff.

Quote:
Originally Posted by LeeLee2U View Post
WELL!! HRMMPPH!! I am SO offended!!

J/K

I WAS your first poster last night but somehow it's not on there! I wonder if the Tag Fairy is playing games with me??? First I lose my tag and now I'm losing post!!!

Oh Well!

i had just said that I Do enjoy your writing style!!! I am really going to enjoy following along on your journey!!!

You have a GREAT positive attitude which is what will ensure you a great fullfilled life.
When my DH first had kidney failure we watched a training diallysis video of an 18 yr old boy that had been on dialysis for several years and one of the things he said has always stuck with me. it helped us see our life better and it's what we now try to instill in our kids.
He said I can let Dialysis control my life and moan and groan about my illness and not having a "normal" life Or I can step back and say "What is normal?'
"Normal is whatever you normally do in your life. Just like you HAVE to brush your teeth 3 times a day or you or going to have some major teeth problems. I have to do dialysis. It is routine. It's part of me. This is my norm. Drs, nurses, hospitals, catheters, meds, meds and more meds. But it's my lofe and I'm going to have the Best time in my life Everyday that I can. I control it and you control your life too."
My youngest DS my "WISH" child has never known anything else in his life. His condition does not "HAVE" him He Has his medical conditions!! It's just part of who he is and he is so much the better for it with his attitude.

I see this attitude in you and I think It's awesome!! And hey 2 BEST FRIENDS???? That's Great most People are blessed to have 1 friend that will stick by them in their lifetime!!

Looking forward to more!!
That is a great story, and it's so true. I read it to my mom (she cried) and she agreed with it.

May I ask, how is your DH doing now?

Quote:
Originally Posted by llurgy View Post
Great start to what looks to be a VERY interesting trip report, cant wait to read more!!!

I just love your attitude! My daughter becca also has O2 issues, she has a lung condition where her O2 sats hover around 72% at the moment though through time they will get lower and lower as she grows. She doesnt let it bother her, she does her best with what she has. She finished up in hospital due to an abscess in her brain (her blood doesnt get filtered properly because of her lungs being stupid) but she is fighting her best fight to get out of hospital and back home - she really, really, really, wants to be home for her birthday at the end of this month.

Other than the Jim Henson Studio's what else are you going to be doing with your time, how long will you be in "The Land" for????

Oh, before I forget.....We all need photo's please, pretty, pretty, pretty please
How old is Becca? I do hope she'll be out of the hospital by her birthday. Birthdays are a very powerful motivator....that may be enough to make her better on her own!

Tell her this for me: Even if you can't blow out all of the candles, you wishes will still come true.

(OMG. They should put that in an Oprah magazine!)
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Old 04-10-2009, 08:18 PM   #10
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How long will you be at the parks? Do you have 2 days there?

I found that just being there and taking it all in was more special then any of the rides. We watched the fireworks each evening (when they went off) from our hotel balcony and I loved it!

Ride wise though I really love California Screamin! Do you do rollercoasters? Actually most of them at CA were really fun. I think because they are different then what we experience all the time at WDW.
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Old 04-10-2009, 08:37 PM   #11
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Quote:
Originally Posted by rwrocksme View Post

How old is Becca? I do hope she'll be out of the hospital by her birthday. Birthdays are a very powerful motivator....that may be enough to make her better on her own!

Tell her this for me: Even if you can't blow out all of the candles, you wishes will still come true.

(OMG. They should put that in an Oprah magazine!)
LOL....brilliant quote, by you, by yourself

Becca is 12 years old, 13 at the end of this month
She went on her Wish Trip in January and we were only back one week before she had surgery for the brain abscess.
She still looks on the bright side and says that it is a good job she had her trip before it all happened
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Old 04-10-2009, 09:01 PM   #12
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Quote:
Originally Posted by rwrocksme View Post

Tell her this for me: Even if you can't blow out all of the candles, you wishes will still come true.

(OMG. They should put that in an Oprah magazine!)
They SHOULD put that in an Oprah magazine!

What an awesome quote. I will have to tell Lauren that one...she could not get all of her 16 candles blown out this time, either. (She turned 16 on Tuesday!) But she is a "glass is completely full" kind of person, too...so I am sure it didn't bother her too much!
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Old 04-10-2009, 09:37 PM   #13
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Smile Eliza On The Street

Thank you all for your very kind replies! Also, happy late birthday to Lauren! 16 really is sweet!

My mom said I could post a picture on my report. She wouldn't let me post a picture of HER, though. But she'll post one after our trip. In the fall. In six months.

Here is me at the Center For Puppetry Arts (in Atlanta):



This is the day I got to "meet" Big Bird (there was no puppeteer, just the shell). It's on the top ten list of my best days ever. I cried.

Super Grover is my favorite, though. We're a lot alike. We're both cute, lovable, and, of course, blue. We also both fall down a lot, apparently. Really, I just need a cape, and I'd be set.
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Old 04-10-2009, 09:42 PM   #14
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I LOVE Sesame Street! Adorable picture!
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Old 04-11-2009, 07:11 AM   #15
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Hey Blue Fairy!

I'm here...looking forward to a report from the eyes of a teenager! I see you figured out how to use a title and color in your siggie!

I love my pal Grover too! He is my favorite. When I was in high school I was in a puppet troop that did shows at local special olympic events. The Muppet Show was out at that time and we all loved it. I got a Kermit from my parents that year (late 70's) and he is still around and being loved by my kids. Jim Henson was genius!
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