And Away We GO!

I was very proud of myself for having started packing WAY before departure day and was confident that I would NOT be up ALL night before we left. I even had a tiff with Tim when he proclaimed that I was NOT that far along with the packing and predicted I WOULD be up ALL night. You see where this is going don't you? I believe I actually got into bed at 3AM. It wasn't so much the packing as the bills and other random things I forgot to plan for. I got about 2 hours of sleep. Oh well.

I was optimistically hoping that our limo would be late or not be able to find our address, but NOPE, right on time at 5:30AM. We were flying out of Tucson Int'l Airport at 7:50AM but don't let that Int'l part fool you. TUS is a TINY airport and check in is always quick, not to mention security, the walk to the gate, etc. It's about a 20 min drive and I figured getting there at 6:30 would be plenty of time, so I didn't feel TOO bad making the limo wait a few minutes for us to take some pics. Then I ran back into the house to finish getting ready while Tim helped the driver figure out where all the stuff was going to go. The luggage fit in the trunk but the backpacks, and car seat went on the back seat while the wheelchair had to come apart and went up front with the driver. He was nice but wasn't overly friendly. I guess he saw the matching shirts with Disney characters all over them and he asked "So are you guys going to Disneyworld or something?". Um, yeah.



Phoebe was thrilled, which I thought was funny since I never would have thought she'd notice a difference. Maybe she was just excited to go somewhere.




Tessa was a little awe struck by the limo. I don't think she's ever seen one before.







After we got settled in the car Phoebe had a seizure. Nothing out of the ordinary, and we were in a comfortable place where Tim could hold her for a couple of minutes until it was over.

I think the funnest part of the limo for the kids was being able to move around. Phoebe loved sitting next to us.




Tessa liked watching out the windows.




So we get to the airport and Tim asks me "How much do you tip a limo driver?" to which I replied "I have no idea". Tim pulled some of the MAW cash out of his pocket to hand the driver who quickly refused to take any of it. "It's all taken care of" he said.

We quickly accepted the help of a skycap, who gladly accepted the tip Tim gave him , and he delivered us to a shorter check-in line than the very long one we saw as we first walked in. There were a couple of older ladies in line behind us who asked about the shirts and said her nephew had gone on a MAW trip years ago and how wonderful it was. They were very sweet, even if they did make fun of us for all the luggage we had. They seemed a little more understanding when I explained that we were actually going to be gone for two weeks. We had 5 suitcases (2 large 3 small) plus the carseat. None of the bags were stuffed full because I had been warned that we would need extra room on the way home for gifts from GKTW and souvenirs. With SWA's luggage policy of two free bags per ticket, we were well within the limits. Man I was glad that I asked MAW (who originally had reserved a full size car for us) to move us up to a larger vehicle! The Southwest desk person told me to talk to the gate people about preboarding, but we all had our WISH shirts on and I had also called ahead to ask for an aisle chair so I felt pretty confident we wouldn't have any problems.

Security went as planned, with Phoebe actually being allowed to sit in her wheelchair while they tested it and patted her down. The TSA screener who did it was named Phoebe too, whom I vaguely remember meeting in the past. She thought it was the neatest thing to see a little Phoebe and was super sweet to her, and all of us. Once we got to our gate we looked around for food. Tim grabbed a breakfast burrito. We had barely gotten a table and he and Phoebe eaten half of it when they started talking about boarding at our gate. He scarfed down the rest and we ran across the way to our gate.

There were several other wheelchairs pre-boarding with us (we live in a retirement area) so we sat "near" the front, but I was just glad that we had a minute to get settled before everyone else stormed the plane. It was a full flight. With the rows split into three seat each we decided to split up two and two. Tim sat with Phoebe since he ended up carrying her on board (they didn't have the aisle chair ready but we told them it was fine as long as we didn't have far to walk). I sat with Tessa who was thrilled to be on an airplane. She's flown many times in her short life but it had been a while. The flight attendant gave her a set of wings that she really didn't care much about.

Viewing the Tucson landscape as we take off.





Phoebe's eyelids fell shut with the force of the engines during take-off and Tim got to enjoy a nice nap along with her.




Tessa watched some movies and I also used the opportunity of her sitting relatively still to do her hair.



Then she played her Leapster. (thankfully Phoebe was in the seat in front of her and didn't notice the feet on the back)




She kept me awake because she kept wanting to switch movies and games and have a snack. No nap for me.

Phoebe woke up and enjoyed a snack, as did her shirt.



This is her sad face, we call it Beaker (from the Muppets), or sometimes it's a precursor to a smile if she's just not sure about something.




I don't understand what thoughts were going through someone's head when they routed the plane to fly from Tucson to CHICAGO to Orlando, since I know SWA lands in Dallas Love, but oh well. At least I got to "see" Oprah. I'm sure she was down there somewhere.



Tessa decided on this trip that she did not like the shades up while flying, sometimes to the dismay of the people flying with her. Thankfully when we start to land she's interested in looking out. I LOVE looking out at the scenery. I like wondering what people are doing and who lives in that house, how old is that church, etc.




We have a smooth landing in Chicago and deplane for a couple of hours. I was starting to figure out all the things I didn't pack in carry-on, and had to pay the outrageous airport prices for a few supplies that we needed and couldn't wait to get in Orlando.
So we get three different trips to the girls' restroom out of the way and then find some lunch. We found a really yummy deli restaurant called Potbelly Sandwich Shop and order some lunch. I shared a turkey with the girls and Tim had A Wreck (?) which had salami, roast beef, turkey, ham and Swiss. We both agreed they were delicious but Tim regretted not getting pizza once it dawned on him we were in Chicago. I wished I had packed a change of shirt for Phoebe because this one was looking pretty gross. Darn it. Another item I forgot to pack.



Phoebe falls asleep during our meal and Tessa declares she needs to go AGAIN so I send Tim off with her (he was done eating). They didn't have "family" restrooms so I don't know what he did but frankly I don't care. He's a smart guy, I'm sure he figured something out. In a year or two Tessa will be able to handle a trip to the bathroom solo but for now people can deal with us doing what we gotta do.

We make it back to the boarding area just in time to stretch our legs before they begin lining up for boarding. When we get Phoebe out of the wheelchair to walk around for a minute she gets excited which triggers another seizure. Tim holds her until it's over and then they start calling out info on the loudspeaker. Another full flight makes the waiting time stressful for Tim as he tries to keep me and the kids orderly and quiet.



We get on the plane without incident, again no aisle chair but we pre-board and sit near the front. Guess who sat with whom? I thought Phoebe would sleep some more so I ask Tim to trade with me. This flight it is Tessa who naps and Phoebe is cranky. Oh well. No nap for Mommy today.
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Make-a-Wish

Phoebe is the star of the show, the Wish Child, who had her wish granted by the Make-A-Wish Foundation. We were referred to the organization last August by Phoebe's Geneticist after we were given yet another set of negative test results. Normally, negative test results sounds like it would be a good thing, but for Phoebe it means we don't know what is the root of all her difficulties and delays. We have an arsenal of specialists who handle different aspects of her medical needs and they all seem to feel confident that Phoebe has some sort of "syndrome", probably a randomly occurring chromosomal abnormality. She is 8 years old, but is closer to a one year old cognitively, and is still trying to master quite a few of the basic infant/toddler milestones. She is visually impaired due to optic nerve atrophy, she cannot walk unassisted, she is unable to perform self-care tasks, she decided to be half-potty-trained (the messier half, thank goodness!), and she is non-verbal. Medically, Phoebe has been through a myriad of small, uncomfortable, and worrisome situations, but the biggest concerns now are her seizure activity and her growth. Because we don't know what she has, we don't know what to expect for the future and that is scary. I was a little surprised when the representative called from MAW to say she was approved. I am aware that they have expanded their scope to include children with life-threatening conditions, not restricted to terminally ill, but I was still surprised. I thanked her profusely and chose not to think any deeper than that. If this rare opportunity was being presented to Phoebe, I'd help her take it, and enjoy it, to the fullest of her abilities. There is no point in trying to make life fair, that's not what it's about, but it was somewhat comforting that Phoebe had this special trip, meant just for her, when there are so many other experiences in life that she will not have.

So in September we met Phoebe's "Fairy Godmother", or Wish Granter, Liz. She is a volunteer who works with MAW and meets with the kids and families to hear their wishes and coordinate with our main chapter office in Phoenix to try and get the wish granted. We made a list of Phoebe's loves to try and think of the best wish for her. Since she is non-verbal (no signing or pointing or anything) we needed to voice her desire for her. (I have later learned that some Wish-granting foundations will not grant wishes to children who can not communicate the wish themselves. Thank heaven for Make-a-Wish!) We thought about horses, of course, but couldn't think of a wish that would truly satisfy that desire in a way that she has not already experienced. We thought a week at a dude ranch or something like that would be too tiresome for her and riding occasionally is something that she gets to do through school in weekly hippotherapy lessons. They specify that the wish should not be for medical equipment or vehicles, etc. It must be something the child will truly enjoy as a once in a lifetime opportunity. We thought about a cruise and how it would be convenient to have a bedroom ready and waiting at any moment, endless food (she LOVES food!), and pools and music and maybe even some neat activities at shore. Liz got some info for us about the Disney cruise and it appeared that Phoebe was not old enough or capable of doing most of the excursions and the cruise she mentioned was only 3 days. I have been on cruises before and the short ones just don't feel like long enough to enjoy it. You are just starting to find your way around and suddenly it's over.

Instead we looked more into the Walt Disney World option. Liz had mentioned it as I guess it is a very common wish for kids to ask for. The trip would include 6 days at a place called Give Kids The World Village, another charitable foundation, which is like a fully accessible amusement park in itself. Then a standard gift of 3 day Disney tickets, 2 day Universal tickets and a day of Sea World tickets. This really sounded appealing knowing that the entire trip would be geared towards young kids and kids with special needs. Not being able to think of anything better (umm, cooking classes in Italy? Tour the Louvre in Paris? A day on a movie set with Johnny Depp? Oh, yeah this isn't MY wish...ahem) we decided to make visiting Walt Disney World her official wish.

In October we emailed back and forth with Liz about possible dates. It looked like our chapter was pretty busy and she suggested we give some dates in March or April. I looked at the calendar, did my best to avoid Easter and school vacations and requested April 17-23. During this time I had already started planning and had found a Disney chat room where an entire thread was dedicated to Wish Trips. I discovered that some families asked to extend their trip (on their own dime) and thought it was a great idea. Tim agreed and so I asked Liz if they would be able and willing to make our return flight one week later on April 30. In November our dates were approved and it was official. The real planning began! Dining reservations were made. Crowd calendars were consulted. Library books checked out and renewed a few times over.

On the Disney chat room I made some great new friends. Some of whom are very talented and like to sew. They call themselves the "Big Give" and make custom clothes and send assorted "pixie dust" items to Wish kids and their families for enjoyment on the Wish trips. These kind and generous "fairies" asked if we'd like to be part of a "Give" and I said "of course!". So one by one packages arrived and it started to feel like Christmas. The girls were totally spoiled with adorable clothes, toys, books, bows, autograph books, etc, etc. We also received "Mickey Mail" from other families who were taking trips before ours. Some had messages of excitement for the girls to visit and others had autographs. It brought tears to my eyes every time I thought about how kind people can be. Total strangers spending their time and money on us just to help make the trip that much more special. When we took the trip it felt like we had many friends there with us.

This will be a chronicling of our trip; the highs and lows, the expected, the unexpected and everything in between.

November

Here is just a mish mosh of random stuff from November. We didn't go anywhere or do anything exciting. Tim cut his fingertip almost off. That was exciting. We bought an elliptical machine, which Tessa immediately figured out how to use, even though her legs are too short for the stride. We had a yard sale, and pretty much all of it went to Mexico. We discovered our orange tree was being eaten by alien alligator bugs. No, they are actually Swallowtail butterfly caterpillars. Tessa and I also discovered a Javalina living in our neighborhood when we were out for a walk. Tessa was sick and therefore, held still for a few hours. Tim worked on Thanksgiving so the girls and I had Chinese take-out and chatted with a friend and her baby, whose husband was also working. Like I said, nothing too exciting.

Happy halloween

Tessa has been wanting to dress up as Dorothy and go trick-or-treating for months. I planted the idea in her head (figuring this would be the last year I could influence her costume decision) and she loved it. Phoebe wore the same costume when she was four and so did cousin Elizabeth (whom we borrowed it from). She made the cutest Dorothy ever, in my humble opinion. She even had a Toto to accompany her, which ended up being her constant companion for the next couple of weeks. She was so thrilled to finally be trick-or-treating that she was full-on running from house to house in the beginning! Phoebe was excited to get out and go walking at first, but I think she gets bored sitting and waiting at each doorstep, so she tuckered out early. Papa Bob and Tim took her home and Gramma Pat and I continued on with Tessa. We were out for a total of 2 hours, which I thought was impressive for Tessa, 3 years old. I kept asking her if she wanted to go to more houses or go home and she kept going. She didn't even ask to be carried. Daddy met us on the last block of our trip home and offered to let her rest which she took him up on. Tessa asked for several days after, when we could go again. I think maybe Phoebe can go to a few houses on our street and then pass out candy at home next year.

Gramma Pat and Papa Bob Visit

Tim's parents drove out for a visit at the end of October. We were able to do some sight seeing and touring while Phoebe was in school. We went to the Pima Air and Space Museum where Tessa got to play in some of the planes. We also went to Sabino Canyon and rode the tram that goes several miles into the canyon. Both trips were a first for all of us and we enjoyed them. And with the cooler nights we were able to roast some s'mores in the backyard.

Fall Fun

Fall in Arizona is a funny thing. It can be scorching hot one day and freezing cold the next. Sometimes it is a gradual change, down one week, back up the next. Here are some various shots throughout the month; our small-town parade, a water fight on the trampoline, Dallas keeping our puppy-friend Cooper in line (at 13+ she's really doing well!), playing in the pecan leaves, my beautiful girls in the bright afternoon sun.

Exploring our Backyard

When Phoebe's in school, Tessa and I have long days to fill and sometimes we go exploring. We have often been to Madera Canyon, just minutes away, and so beautiful. This time we went slightly north to see if we could find the ghost town Papa Jim and Daddy had found once and told us about. We took the wrong road, I guess, and never found that, but we did find an interesting trailhead through the Santa Rita mountains. If we stayed on long enough we would get to the same peak above Madera Canyon. We went less than a mile before turning to head back in time to meet Phoebe's bus. It was a very narrow, rocky trail for the most part and I was impressed that Tessa was not only able but disappointed that we couldn't keep going.