From wish tripper to greeter - Ali's MAW trip report 4/19 - 4/25 FINALLY FINISHED!!!

[kellyw8863]

Hey everyone! For those of you following us here from the wish trippers thread or our PTR, thanks for hanging with us! And for those of you just joining in, thanks for finding your way here.

For those who don't know us, a little introduction starting with Alison, our "wish child."

Alison is four years old and has been diagnosed with mitochondrial disease. Basically what that means is that her body is incapable of producing the energy necessary to sustain life. This occurs at the cellular level, so even though she looks great, what's going on inside her body isn't always so great. Individuals who are symptomatic and diagnosed before the age of five generally have a poor prognosis with an 80% mortality rate by the age of ten. Currently, there is no cure and no real treatment. Our best bet for the time being is a collection of vitamins, antioxidants, and cofactors.

To date, she has a number of other medical diagnoses including macrocephaly, astigmatism, dysphagia with chronic aspiration, reflux, laryngeal cleft (repaired), asthma, an atrial septal defect, tachycardia, bilateral hip dysplasia, tethered spinal cord (repaired), global hypotonia, hypermobility, multiple drug allergy syndrome, and autonomic dysfunction. I think that's it. For specialists, she is regularly followed by complex care services, neurosurgery, neurology, cardiology, opthamology, orthopedic surgery, pulmonary, gastroenterology, allergy/immunology, and metabolics. She wears bilateral AFOs, has problems with fatigue and chronic pain, and has a g-tube. According to her GI, we are definitely looking at some type of ostomy in her future, but we're trying to put it off for as long as possible. Over the course of the day, she takes nine different medications and receives 1500mls of fluid through her g-tube.

Despite everything that she has been through, she has faced it all with grace and a sense of determination that amazes me. She is funny, spirited, and oh so smart. All in all, I would say that she totally deserved to receive her "one true wish."

Maya is six years old and the big sister. In many ways, she was almost "sicker" as an infant than her sister was. She was a happy baby except for when I tried to feed her. Then, all heck would break loose. She was put on reflux meds, which helped only minimally. When she was three months old, she was found to have a rather large atrial septal defect (Are you sensing a trend here? Yes, heart defects run in my husband's family, and he has the scars to prove it), but her cardiologist did not feel that the ASD had anything to do with her eating issues. At four months, she was officially declared "failure to thrive" and had a feeding tube placed.

Now at six years old, Maya's heart defect has resolved and she is no longer on medication to help her eat, though she is still quite picky and on the small side. She is in first grade, smart as a whip, and loves the Disney princesses. Every time Ali would say her wish was to go to "the zoo and see the real tree (code for the Tree of Life)," Maya would add "at Disney." She wanted to make sure that we got there.

I'm Kelly, or better known as "Mom" around these parts. Forget age - I'm old. I teach junior and senior English at our local high school here in the middle of nowhere. My husband is Garth, or "Dad," and not as old as I am. He also teaches at our local high school, though he teaches intensive special needs in a life skills classroom. We've been happily married for almost nine years (as of this July).

The girls' grandparents, Garth's mom and dad, also accompanied us on our trip. We feel so fortunate to have had the opportunity to share our week with them.

So there you have it! Next up - Day One: From wish tripper to greeter.

Kelly

 

[xanphylus]

Wahoo! I found you!!! Welcome home!!!! Hope it was everything you ever wanted and so much more! Was it pixie dust filled and Mickey Mouse dreams?

 

[kellyw8863]

Well, after months of planning and weeks of packing, Monday morning, April 19th, ultimately arrived too quickly. The limo wasn’t due to arrive until 8:30am, and I (wrongly) assumed it would be late since our road does not typically appear on GPS units. I figured that we’d get a call at about 8:35 asking for specific directions to our home, and so I set out to begin vacuuming one last time at about 8:00. And lo and behold, at about 8:05 what do I see out the dining room window but a huge white luxury stretch limo. Preparations ended abruptly as it was officially time to go.

Now before I go on, I need to give a shout-out to Early’s Limousine. We were originally told that the Foundation would not be able to include the girls’ grandparents in the transportation to and from the airport. Once we got our travel packets from Make-A-Wish, I figured it couldn’t hurt to give Early’s a call and see if we could add them on at our own expense. They did better than that for us. They upgraded us to the luxury stretch at no charge and said it wouldn’t be a problem at all for the grandparents to travel to and from the airport with us. Other than the Big Give and the kindness of our closest friends, I guess you could say that this was the first piece of “wish magic” we received.

After much finagling, we managed to get all of our luggage, two car seats, a stroller, and the six of us packed into the limo. You would think that considering the size of it, it wouldn’t be problematic, but I guess we had a lot of stuff because we all barely fit! It was something else riding through the streets of Templeton. Being a small town, not much exciting happens around here! And lucky for the local residents, they got to see it twice, as Garth realized he forgot his wallet just as we were getting onto route 2. So, we had to go all the way home, but better at this point than at the airport! Take two, and we were officially on the road by about 8:35.

Our first glitch, other than the forgotten wallet, occurred at the airport, and really, it wasn’t even a big deal but it did affect our moods. We were originally told when we checked in at the Southwest counter that we would all be able to pre-board because we were traveling together as a Make-A-Wish family. However, when we got to the gate and spoke with the agent there, we were told that only one of us plus Ali would be able to pre-board. Not a big deal, but she was so RUDE about it. She literally said, “Are you kidding me?! Why don’t I just let everyone pre-board!” I could have done without the snarkiness, so I sulked for a little bit and then got myself an iced coffee from D&D to cheer me up.

A little word of caution for those planning to travel with medical liquids and equipment: I thought it would be easier to buy new meds, Motrin, Pedialyte, etc. and leave all the safety seals on to show that it was new and untampered with. But, I ended up having to open everything so that the TSA agent could test each one. She was really nice about it, and I apologized profusely (after all, I was trying to keep things easy), but in hindsight, I wish I had known this so I could have been better prepared. Despite the TSA’s diligence with testing each liquid, we didn’t have any problems with the electronics (pump and pulse ox), and I didn’t even need to paper documentation that I had brought with me saying it was all necessary. So, it really was quite easy!

I was a little nervous about how the girls would travel, but they did fabulously! They were antsy while waiting for the plane (as were we all), but once we got on board, they were pretty easily entertained with all the goodies they had received over the preceding weeks from the Big Givers. They settled in to doing their puzzles and coloring, and the rest of us tried to relax. Even though we had taken off late from Manchester, we ended up getting into Orlando early. The girls were hilarious as the plane landed. They raised their arms in the air as though they were on a rollercoaster and whooped and hollered until the plane finally came to a complete stop.

As we disembarked, I was ready for our moment when we would see the Give Kids the World greeter with Ali’s name on it. I looked…and looked…and looked but no greeter was to be found anywhere. I would be lying if I said I wasn’t disappointed, but we were eager to keep things moving so we headed down to baggage claim on our own. Once we were down there, I pulled out all of my Make-A-Wish and Give Kids the World paperwork and then headed back up to the concourse to see if I could meet up with the greeter. I wasn’t sure what to do otherwise, and I was a bit nervous about trying to navigate the car rental and such on our own.

Once I got back up to the security area, I finally found our greeter. And this is where the fun began. I walked up to her as she stood there holding Ali’s sign and tried to explain that I was “that” family and everyone else was already down at baggage claim. It was really loud and chaotic, and we were having a difficult time getting on the same page. Finally, she handed me the rest of the signs, asked me to hold them up until her husband arrived, and that she was going downstairs to baggage claim. Before I could protest, she was gone. So I stood there playing the part of greeter until our original greeter’s husband arrived to relieve me. I couldn’t stop giggling at the idea that I went from being disappointed at not being able to find our greeter to actually playing the role of one.

When I finally got back down to baggage claim, we all had a good laugh over it. I didn’t do a good job of explaining myself and any meaning was lost in the chaos that was occurring at the time. She helped us to get the rest of our luggage and then to navigate the Orlando airport. She took us to get our rental, gave us directions and a few last minute tips, and we were on our way to our home away from home. Our greeter (I can’t remember her name) was wonderful, and I’m bummed that Ali wouldn’t pose to have her picture taken with her. The best we could get her to do was hold her own sign so that I could snap a photo.

 

[kellyw8863]

The directions from the airport to Give Kids the World were exceptionally clear, and we easily found the Wal Mart for our obligatory stop for snacks and necessities. Just a word of caution for families planning to go – the Wal Mart is really, really close to GKTW. Before buying snacks and drinks, you might want to check out what they have put in your villa for you. We way overbought and probably would have been just fine with what was left for us. We ended up leaving a case of water and a case of soda there because we couldn’t return it and didn’t want to take it with us. We had originally planned on bringing our own drinks and snacks to the parks, but quickly found that on top of all the medical stuff, it was just too cumbersome and it was easier to purchase these things once inside and as needed. We did, however, buy a case of beer and a small box of wine there for those of you not used to being able to buy alcohol anywhere but a package store.

By the time we were ready to check into GKTW, it had started to rain, which was kind of a bummer, but didn’t seem to negatively affect the atmosphere of the village. There were still plenty of people out and about, music blared from the speakers, and the carousel was active. All six of us were told to come in for registration, and Ali was given her Mickey Mouse and Maya was given a stuffed Shamu. He quickly went over a few of the most immediately important things, and then took us to villa 249 – our home for the next six days.

I was thrilled to learn that 249 was in the newer section and was directly across the street from Matthew’s Boundless Playground. The girls were literally awestruck by the sight of it all. Unfortunately because of the rain, we were not able to get our standard picture of the family in front of our “welcome home” sign, so we gathered on our front patio instead.

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It was after five at this point and we were all starving, so I ordered dinner from Katie’s Kitchen (Boston Market) for delivery and then set to unpacking. Dinner arrived about twenty minutes later. We scarfed it down, and then set out to explore our new environs.

Before we even had a chance to get out of the door, the kids were across the street in a flash and on the playground. The nice thing is that other than the food cart and occasional golf cart, there is very little traffic in the village, so you really didn’t need to worry about cars. The playground itself is phenomenal. It is completely handicapped accessible and has a weather cover, which protected us against the sun and most of the rain. Despite the gloomy weather, there were several families on the playground and lots of laughter. Maya’s favorite was the slide and the rock wall, and Ali could have stayed on the swings forever.

Our goal for the evening was to make our way towards the House of Hearts so that I could go to the orientation for 7:45. There is a bus that circulates around the village picking up residents, but really, we thought it was a nice walk and only used it once or twice. We passed the Park of Dreams water park, which the kids thought as fantastic. And they thought it was neat that it was still going strong despite the weather.

We also passed ‘Ole Elmer the snoring tree, which Ali hated because she thought the tree was growling at her. Every time we walked by, she had to cover her ears.

And of course, there was the carousel.

I don’t think we ever walked by without the girls riding it at least once. In the words of Maya, “It doesn’t cost anything so you can’t say no.” Maya’s preference was the unicorn while Ali tended to like the animals.

The really neat thing about it is that like the playground, it is also completely handicapped accessible.

On Monday nights, they have some kind of meet and greet with animals activity. I don’t recall exactly, but I want to say that they are maybe from Sea World? At any rate, the woman there that night was so incredibly kind to the girls and worked hard to engage them despite the fact that she was trying to get them to pet an armadillo. Not the most exciting animal for four and six year old girls, but they still got a kick out of it. Well, at least Maya did. I think Ali was afraid and didn’t go near it.

After that, we still had some time to kill before the 7:45 orientation, so we grabbed the first of many ice cream cones and headed over to the Amberville Train Station to check things out.

The girls loved the various ride on car thingies that dotted the property. They’re always asking to go on them outside of shopping centers and I’m always telling them no, so it was nice to be able to say yes.

The train station was really neat, and the girls got a big kick out of making the various things in the train set go.

Other than the orientation, that pretty much concluded day one. Next up...Day Two - A disaster in the making.

 

[jessica52877]

I'm here!

 

[maroo]

Woo Hoo!! Another TR started!

Fantastic start!

Although I am bummed just reading about the rain and greeter confusion. And what is UP with the SW attendant being rude to a wish family?!? Grrr.

So....Disaster?!?!

 

[noahsketomom]

Wow, Kelly --- you are super fast! So excited and subscribing!!!

I'm glad you mentioned about overbuying at walmart -- we did that too and ended up making the rental car guys at the airport REALLY happy when we gave them probably 2 dozen sodas!

Great pictures -- can't wait for more!!!!

And most importantly.....WELCOME BACK!!!!!!!

 

[TTomlinson]

Its so exciting to read the recent reports from you families that have just been there! I'm hanging on the edge of my seat....

 

[jessica52877]

Oh no! No disasters!

I loved that you were the greeter for a bit! The kids look like they are enjoying GKTW. Bummer that it was raining a bit.

 

[xanphylus]

Great start! I love how Maya said "it's free, so you can't say no!" That's just great!! My kiddos love the ride on things too- and I always say no, well, usually.... I am a softy sometimes!
Sounds like they had a great first day and travel wasn't too bad either. I am sorry that the person at SWA acted like that. That was so uncalled for! I don't like rude people at the airport....

Can't wait to read more!!

 

[kellyw8863]

Wow! Hey, everyone! The SWA rudeness was a definite bummer - snark definitely wasn't necessary. I would have expected it in Boston, but not Manchester. And really, the greeter mix-up was absolutely hysterical. As Garth and I had our nightly nightcap that evening, we just kept cracking up. Once we got everything straightened out, she was absolutely wonderful and oh so helpful to us. I don't think we ever would have even made it out of the airport if it wasn't for her.

We absolutely love, love, loved GKTW. Seriously, our experience there changed us as a family. I hope that I'm able to capture that and do the folks there justice through this TR. At the end of our week, we spent one night at AKL and the kids kept saying, "I want to go back. I don't want to stay here," and honestly, the adults felt the same way. It just didn't have that..."thing" that GKTW has. I don't know how to explain it. I'm so excited for all of you reading who are getting ready to go. Finally, an "exclusive club" that we parents of the chronically ill can feel good about joining because it is all good in spite of what it is that brings us all there. It is seriously the happiest, liveliest place I have ever been to.

 

[erika412]

In in in in in!!!!

 

[pacrosby]

OMG...............you're back already!!!!!!

Your pictures are just wonderful!

And I see you were also in Melissa's very favorite section of the Village

Templeton???? You are in the boonies!

And yes...............I do so agree (and I believe I've said it many times myself)..................it does 'change' you doesn't it? Hard to explain. But it does.

Looking forward to more.

Here's my hint. Just don't stop or you'll still be writing this in October

 

[Momofwishkid]

Kelly what a great start and so fast! I agree with Pamela though, dont lose that mometum. Cant wait to hear about the rest and what a Disaster! No!

 

[rcq925]

I am subscribing! You TR is great so far, I feel like I am there with you! We are still waiting on our dates and can't wait to go.

I will be on the edge of my seat waiting for the next installment!

 

[cantwaittoseemickey]

Ug I'm already shedding tears lol I'm here and subbing too Great start to your tr. Glad they enjoyed the plane ride.I miss all of those little coin rides. Don't seem many of them around here anymore. Your family is beautiful!

 

[wishin' on a star]

Hey Kelly! You are back...and I'm so impressed with your TR start!!! I can't wait to hear more. We are going so soon, so it's great to have all of these TR to help us prepare!! Your pics of the village are fantastic.

 

[GaRain]

Count me in, can't wait for an update.
Hope it is not too terrible.

Lara

 

[cajunfan]

Yeah! Another Trip Report to read! Great Start! I can't wait to hear more!

Lynn

 

[jenb1023]

Welcome home and great start to the TR!

Love all of the photos of the girls - especially those smiles! I am so glad you got to enjoy some of what GKTW has to offer on your first day despite the rain!

Disaster in the next installment? I don't like the sound of that!