The family with Mickey.

Mom’s Wish Trip Recap

I loved reading Brian’s retelling of the events of our wish trip. I’m so glad he was able to capture those memories and share them with you.

It is very strange to come home and be right back to normal life. Life where things are too busy to spend time telling the stories of the Wish Trip that I wish I had time to tell. I’m looking forward to our star-raising party for just that opportunity. But for now, I’m gonna grab a moment and tell you what I wish I could tell you face-to-face.

I wish I could tell you how different it was to travel with everything planned out and taken care of for us. We travel a lot. But this time, someone else made sure that we had what we needed, that we knew were we were going, that we always had a chance to be fed. Give Kids the World does exactly what it’s name says. But what the name doesn’t say is that they wrap up tired, worn-down parents in their arms and do all they can to lighten their load and make them feel special, too.

And they give you the best gift in the world in giving you a chance to witness joy on the face of your child over and over again. That gift is so precious, especially to parents who have seen their children’s faces filled with pain and worry and fear many more times than is fair to any child.

Every night, after giving Patrick his melatonin and tucking him into bed, I’d lay next to him while he fell asleep. Every day, he’d relive the excitement of the day. We’d relive rides and retell the conversations had with the characters we met. One very special evening, after meeting Spiderman, Patrick and I had a good 20 minute heart-to-heart about what superpowers are and what amazing thing each superhero can do. Describing “web-slinging” to Patrick and seeing him overflowing with excitement at the idea… Yes, that is one of the precious moments I hope I never forget.

I could tell you how amazing it was to receive the same magic treatment at each theme park, too.  We didn’t go in assuming anything was owed to us. A quick jump to the front of the lines seemed like more than enough special treatment. But most places we went, they went above and beyond that. We were told not to expect to skip lines for characters, and yet when Patrick wanted nothing more than to meet Donald our first day in the Magic Kingdom, there were the Disney Castmembers showing us through the back entrance right to Patrick’s favorite character. Or the morning we decided to pop in and see if there were any cancelled reservations at the month-long-wait-list Beast’s Castle restaurant and they handed us a piece of paper and told us to go right in.. At SeaWorld we were told we’d need to buy a tray of fish for me, but when we tried to do so we were informed that we were their “guests” today and not only did we get that extra tray of fish, but a trainer who commanded the dolphin to jump right up so Patrick could touch it. And in Universal Studios they were determined to add to our experience. Not only did we get to turn around and ride the same ride again when Patrick wanted more, and were given special meet and greet opportunities after the animal show… But if someone met us and didn’t know anything more they could do for us, they’d make sure to give us a hint about some way to sneak in a little more.. like where to sit on the parade route for an uncrowded extra-long show by the cast of Dora.

And speaking of Dora the Explorer… in order to meet both Captain America and Dora and Boots, we virtually ran in our parkhopping and, if the Fitbit was right, covered a couple of miles in that hour. But it was well worth it to see the look on Patrick’s face when Boots walked out in front of him. And to see him flexing his muscles with his favorite superhero, too?  Yeah, sometimes we parents do crazy things for our kids.

Like spending every day for a week out walking miles (about 10 a day) in the crazy mix of hot humidity and afternoon thunderstorms that is Florida’s daily weather. I don’t think a Utahn can properly prepare themselves for that kind of humidity. But, why didn’t anyone warn me that we’d need ponchos? And a game plan for when lightning closed everything. I don’t see myself moving to Florida anytime soon.

We were amazed that Patrick stayed healthy. Our second day, we were afraid that wasn’t going to hold. He had a cold when we left our house and as we went to lunch at Universal Studios, he got really grumpy and started rubbing his ears. We were contemplating which nurses we could call back home and whether or not the first aid station would be able to help him. Thankfully, after his nap, his ear seemed better. He stayed healthy. I caught his cold, instead.

Brian didn’t tell you much about the last days of our trip.

We left Give Kids the World on Saturday morning. Brian drove to the airport to trade in our rental car. (Make a Wish only rented our car for the length of our wish trip, so we needed a different car for the days that we extended to visit family.) Meanwhile, Patrick and I stayed behind to pack up the room and give Patrick one last chance to play on the Candyland playground.

Leaving the village was bittersweet. We visited to see Patrick’s star on the ceiling of the castle and snuck into the Amberville station (train station/arcade) to play with the remote control boats before leaving. (When Brian first saw them, he said it’d always been a dream to play with something like them. Moms and dads can have wishes granted too, right?) Give Kids the World will always hold a special spot in my heart. I think we’ll spend our lives looking for ways to give back.

It was so nice to go spend some time with Brian’s aunt and uncle. We were exhausted after a week in amusements parks. So to go and just sit, visit, play with toys, watch Women’s Conference on TV (The Church of Jesus Christ of Latter Day Saint’s boasts the largest women’s organization and the largest conference for women in the world), and just rest for a few days …that was heaven.

Sunday, we slept in, wore our pajamas till well past breakfast, and watched Dora the Explorer. Then we took a nap, went to church, and in the evening all of Brian’s cousins from the Florida area came for dinner.

Dinner was wonderful chaos with kids everywhere and food overflowing. Brian’s cousin taught Patrick to play duck-duck-goose.  He thought this was hilarious, except that instead of running for his spot in the circle, he’d just yell “Goose!” and run away! I couldn’t help wishing that this family didn’t live so far away. He was just so at home with them.

Monday morning, we packed up once more. Patrick’s gift haul filled an entire large duffle bag by itself. We put on our matching Minion t-shirts and then went to Silver Springs for a glass-bottomed boat tour. It was a lot of fun, even if we didn’t see any gators or monkeys. Patrick, however, didn’t know what to do when that was the only ride planned for the day.

We drove back to Orlando and grabbed lunch at Giordano’s Pizza.. a favorite restaurant of mine from my days in Chicago and not found anywhere outside Illinois.. except in Orlando. Mmm. Deep dish pizza!

It was starting to rain again as we arrived at the airport. We thought we were in the clear when they let us board the plane, but then lightning started again. We waited an hour before finally being able to take off. Amazingly, Patrick handled this pretty well. Thank goodness for the tablet.

It was late when we made it home. The air had that perfect Utah fall chill in it. Thank goodness for that. It helped ease the transition back home. Because face it, as good as home is.. nothing compares to a wish trip. We were glad to be back to normal, but very, very sorry to see it go. This is the kind of experience that just changes you. You want to tell everyone about it.. but there just isn’t time to put it all in words.

Patrick talked about nothing but his trip for most of the next week. At least, until his favorite friend at school fell and had to get stitches in her head. His head’s now full of friends and school, which is also wonderful. But we talk about his trip still a little every day.

Here are some pictures taken of us by Give Kids the World and Disney.


Starting Kindergarten

The traditional first day of school photo.

The traditional first day of school photo.

Let’s start by saying how happy I am that my wonderful husband was willing to blog about Patrick’s Make-a-Wish trip. (Vacations usually require so much time that I’m helping Patrick to sleep that I don’t get a lot of in-room type that I could type.. and besides, it’s nice to hear Dad’s perspective.)

But – this is a big, busy time for Patrick so I am going to jump in and blog, too, about some of the other important things that have been happening in our lives. One of the biggest of which is… Kindergarten.

Can you believe that? Patrick is in Kindergarten! We NEVER imagined or dreamed this when we adopted him, when he was in and out of the hospital all his first year, when his heart stopped, when he started to lose central line access. Age 5 wasn’t in our plans.

For 3 years, I have driven Patrick to school and lined up next to those great big Kindergarteners who lined up without their parents and who talked and played together. I’ve watched them play on the shared playground. I’ve watched the teachers come to lead them into the school and heard them chant, “Eyes forward! Feet forward! Hands to yourself, and voices OFF!” then fold their arms and file into class.

And until the end of last fall, I didn’t imagine Patrick among them.

And then, when it started to dawn on me that that’s where he was headed, I panicked. And I went on a crazy rampage to get him help because learning to read and write was so far out of the realm of what I imagined Patrick doing that I was afraid he was going to become thoroughly discouraged and give up.

I mean – do you remember the year he had last year in preschool? From the moment the special education teacher came out to ask me what could possibly have gone wrong in Patrick’s life to make him start acting out in class when he’d always done well before, I’ve been struggling to help him rediscover his confidence in school.

And yet, the ball was rolling and Patrick was headed into Kindergarten, whether I was ready or not. Last fall, we had a “kindergarten transition meeting” where we met with the nurse, Patrick’s preschool team and the upcoming kindergarten team to tell them all that they needed to know about Patrick’s needs. And it took an hour and the resource teacher, Ms. Kerkman, seemed to grow increasingly wide eyed and worried and grumpy sounding as the meeting went on. But, in the end, they promised him placement in a typical classroom with lots of help, including a one-on-one aide.

And then, August rolled around and we hadn’t heard any more and I started to worry and sent of an e-mail reminding the principal and anyone else I could cc what we’d been promised.

And you know what? They followed through! I got a call a couple of weeks before school started inviting me to come in and meet the teacher and Patrick’s new aide and the rest of the team who’d be caring for Patrick.

It came on the heels of the trip to Omaha (which I promise gets a blog post soon) and so I made a mad scramble to pull useful information together. The first meeting was to go over needs again and I drafted a new “About Me” document. I was very proud that I kept it to 5 pages. About me is found here, if you want to read it.

That meeting was good, but also frustrating, as the hour I was given didn’t even let me scratch the surface of what I thought they should know that would help him. But I reminded myself that there was a reason I’d written it all down. And we went on.

2 days later, we came back again, this time to meet Patrick’s aide and give her specific training on what he needed. They didn’t give me a location for the meeting, and so we got a late start. Again, there was barely time to scratch the surface. I had time to teach how to take care of medical needs, but nothing about behavior or sensory processing techniques before Ms. Kerkman came in and declared it time to go home.

Patrick and his class headed into an assembly. Ms. Kim, his aide, is helping him inside.

Patrick and his class headed into an assembly. Ms. Kim, his aide, is helping him inside.

And then, feeling completely unprepared, before we knew it, it was the first day of school.

Patrick was so excited! Dad came along to drop him off. How could he possibly miss such a big day? We waited, playing on the playground. Then the teachers came and taught the kids how to line up. I greeted Patrick’s aide and asked if she had any questions. Then away they went. Patrick came out at the end of the day beaming. I picked up Jimmy John’s and took him to the park so he could unwind and we could recap the day. He was so happy.

In his backpack that night was a folder of homework. And, as I looked through it, I was amazed.. He could DO all of this! It was on his level. Sure, it took a summer of hard work in Mommy School to get him to the point where it was possible, but even the reading and writing stuff? He could DO it!

The next day, I was invited to school. The goal: teach Patrick’s classmates about him. So I pulled together some pictures on my tablet and brought along Patrick’s little mini-me doll named Tubes.

The conversation went kind of like this. I  showed the kids a picture of a group of kids and talked about how we are all different. Then, I showed the kids a picture of a kid wearing glasses and asked what they were for. (To help you see if your eyes don’t work right.) Then braces. (To help your teeth if they’re crooked.) Then a wheelchair. (To help you get around if your legs can’t walk.) We’re not sad about these things because they help us. Everyone is different and we all need different help.

Then I showed them a picture of a belly and we talked about what bellies do. They turn food into energy so you can play and grow. And if your belly didn’t work right? You wouldn’t be able to grow and play. So what can help? I showed them Tubes. I told them that Patrick needs to get his food right in his blood, since his belly doesn’t work. (Them:”Ew! Blood!!”.. Me: “Wait. Is blood gross? What is blood for?” One little boy: “It keeps us alive.” Me: “Right. Because it carries our energy from food.” Them: “Oh!”) We talked about what’s inside the backpack and how to keep the tubes safe. (Mainly, don’t play jumprope in them.) I told them to be careful they don’t get pulled because they go into his body. (At that moment, Patrick got up and walked away, stretching his tubes and the kids all gasped. So, I could explain that he knows how to not hurt his own tubes.)

Then I explained a little about food allergies and how they hide in foods that look safe. Then I told them about the brace he sometimes wear on his leg and how that doesn’t mean he’s hurt. (Which led into a 2 minute tangent about all the owies they have ever had.)

I wrapped up by telling them that Patrick has spent a lot of time in hospitals because he gets sick easy. I explained that meant he hadn’t had as much time as them to learn other things like talking and writing and rules for playing so he might seem to not know how to do those things, but that he was learning. I told them how excited he was to be as school with them and how much he wanted to make friends. This was met by a chorus of “I’ll be his friend,” and “Can he be friends with me?”

And you know what? Because kids accept difference so much better than grown-ups, they’ve kept their word. Patrick has friends. He is greeted by name and with hugs when he comes to school. He is happy and accepted there. Which is the best thing a mom could ask for.

Things were rolling along better than I could have ever dreamed. Patrick was actually making friends. We were getting a homework routine down, and would you believe it, after just a couple of weeks, Patrick’s reading sight words and tracing some numbers.

Sometimes when we're exceptionally late or exceptionally early, we stop for breakfast on the way to school. A favorite is McDonald's pancakes.

Sometimes when we’re exceptionally late or exceptionally early, we stop for breakfast on the way to school. A favorite is McDonald’s pancakes.

I’d requested a meeting with the district adaptive technology team. These are the people in charge of making “accommodations” for kids who have trouble with written or spoken language. With Patrick’s fine motor skills being very delayed, I’ve been worried that he might get frustrated with the task of writing or spelling.  There were 8 people in the meeting, which was much more than I expected. Occupational and speech therapists, teachers, and me.

But the meeting went well. In fact, the meeting went wonderfully. Patrick’s teacher gushed about how much she loved him in her class and then told us that Patrick is about on level with his peers right now. I’ve never left a meeting so happy. We decided that this team will follow him throughout school in case writing becomes an obstacle down the road. And I knew Patrick was in the best of hands with a teacher who loved him and only saw potential in him.

And then, the next week, I went to pick Patrick up from school and one of the little girls in Patrick’s class ran right up to me and said, “Ms. Gough is going to go away and we will have a new teacher!” Then she bee-bopped away while I stood there wondering if I’d heard correctly.

But yes, the note in Patrick’s backpack confirmed it. The school had fewer kindergarteners enroll than they had planned on and the district decided that they had to cut one of their afternoon classes. Patrick goes to school in the morning, but since losing the afternoon class meant his teacher would otherwise be going part-time, Patrick was losing his teacher. Her last day would be the next day and then they’d have the substitute until they could hire someone new.

Yeah, I shed a few tears. And I played out several horrible scenarios in my head over the next few days. And I considered writing letters or protesting or pulling Patrick out of school. Especially when the next week I heard that they had no applicants and no long-term substitute lined up. But then I reminded myself that I’ve learned that fighting against the system and getting emotional don’t solve problems.

Thankfully, we had somewhere else to go for the week. Patrick’s make-a-wish trip meant that he could miss some time with a substitute. And I could figure out where to spend my momma bear energy when we got back.

But, a few days into our trip I got a voicemail saying that they’d hired a teacher and inviting us to a parent/teacher conference. Patrick’s new teacher, Mrs. Hunt, started the day we returned from Orlando. We sat down with her yesterday to discuss his needs. After a few minutes of me explaining medical terms for her, she stopped me and told me that she’d recently worked in the infant unit at Primary Children’s Hospital and, therefore, I didn’t need to translate for her. Not only did that make the meeting a whole lot faster and smoother, but it gave me some peace of mind as well.

Today was Patrick’s first day back to school since our trip and he seems to have done ok despite the interruption in routine and the new teacher. We’ll see what lies ahead.

Overall, though, this start to Kindergarten has gone much better than we’d have imagined. Patrick’s classmates were so excited to see him come back today. They wanted to hear all about his trip. One favorite friend immediately held onto his backpack handle and walked with him, comparing Disney experiences.

Patrick’s aide , Ms. Kim, has done such a good job taking care of him. And that is translating to him doing better in class and with his peers. She and Ms. Gough have built a great foundation for him to start with and I hope that he’ll continue to do well with this new teacher, as well.

But I still step back a bit in awe sometimes. It’s October. Patrick’s in Kindergarten. He’s learning to read. What an amazing place to be in!


Sea World (Wish Trip Day 7)

Today was a busy day.  We had to be out of Give Kids The World (GKTW) by 11:00.  That meant that we had to pack up all the stuff we brought and all the stuff that was given to him.  I also needed to switch cars because our reservation for the Wish Trip ended today.

While I went to switch out cars Emily and Patrick finished packing up and then went an played on the amazing playground just down the street from our villa.

We got to the front desk to checkout at 10:55.   They presented us with more treasures.

We stopped in and had one last lunch at Katie’s Kitchen (Boston Market sponsored).  I kinda looked around with a heavy heart at all the love and service that goes into GKTW.  I expect that someday we’ll be back at GKTW.

We then headed to Sea World.  We arrived and checked out the schedules first.  We headed straight to feed the dolphins.  The goal was to catch the dolphin show right after that, when we entered the dolphin stadium it was nearly full, when we showed the GKTW badge and expected to be shown to special seats, the greeter looked at us like what do you want me to do?  I know we are spoiled.  We decided to catch some other rides, and get to the dolphin show a little earlier.

We went to ride some rides, they kept being worried about Patrick’s TPN backpack, which is attached to him.  We tried to ride the kids roller coaster and were told that he couldn’t ride because of his backpack.  We left the ride a little unhappy.

We went back across the park to catch the dolphin show.  We got the very last handicap seat available.  The show was good until they stopped the show because of lightning in the area.

We left Sea World a little unimpressed.

We headed up to my Aunt and Uncles house.  We’re going to spend the next few days here.

Here are some pics from today:



Driving "bumper cars"

Magic Kingdom Round 2 (Wish Trip Day 6)

Today we had one last day at Disney, we talked to Patrick about what he wanted to do.  He could have gone to Animal Kingdom, or he could go back to Magic Kingdom and do what we did on Monday.  He chose Magic Kingdom, so that is where we went.

When we finished with breakfast, Patrick was already asking for a nap.  But we headed to the park.  We went directly to “Be Our Guest” which is a new Beauty and the Beast restaurant, which has reservations booked months out.  We just asked if there had been any cancellations, the cast member said no, but then her eyes caught the magic badge, and she sent us directly back.  When we got to the gate the cast member looked at us like we were crazy, so went back to the front and said we weren’t ready for dinner at 9:45 AM, she asked when we would like to come back, I said any time after 11.  She handed us a paper with 11 o’clock written on it.

We did a few of the rides Patrick loves, we also tried the Seven Dwarves roller coaster.  Patrick loves roller coasters, the Seven Dwarves was no different.

We headed back to the restaurant and got there a few minutes early.  People were milling around saying that they were 2 minutes early so they needed to wait.  I was afraid that we would be doing the same.  But we caught the cast members eye, and she told us to go in.  This was a different restaurant, you order at kiosks and they give you a “rose” (think Beauty and the Beast).  You go find a seat, and grab your drinks.  A while later the food magically appears on carts.  The food was good.

We told Patrick he could ride a few more rides, and then he needed to rest.  He happily rode a few more favorites.  We gambled that the rain would hold off enough for us to run back to our villa and get Patrick some rest.

Patrick and Emily took a nap, I started to look at email I have been ignoring all week (not much on the work side).

We woke Patrick and asked if he wanted to go ride some more rides, which of course he did.  So we headed back to the park.

We did a few more favorites, and then headed towards Big Thunder Mountain.  And of course it started raining.  We detoured to “It’s a small world” which isn’t as magical in Disney World as it is in Disneyland.  When we got off the ride, the rain had mostly stopped.  So we kept going towards Big Thunder Mountain.  For those of you who aren’t Disney followers, Big Thunder Mountain is a big people roller coaster.  Patrick has been tall enough for a bit, but we hadn’t dared take him on it, but his love for roller coasters made us think he is ready.

We go onto Big Thunder Mountain and Patrick didn’t look super excited to be there.  We got off and he asked to do it again.  We told him not quite yet, so we headed to the Seven Dwarves ride again.  When we got off that, he asked for the “big” coaster.  So we walked all the way back to Big Thunder Mountain.  This time around he giggled the rest of the ride.

We had about an hour left, so Patrick named the rides he wanted to go on, the first of which being on the far side of the park, but that is ok.

We finished off the day doing what Patrick wanted.  Which in our opinion is how it should be.

Tonight is the last night at Give Kids The World.  I’m kinda sad to see it go.  Tomorrow we will pack everything up, and go to Sea World.  We will then go and spend a few days at my Aunt and Uncles north of Orlando.  I’ll try to get another blog or two done while we are there.

Here are some pictures:


Patrick and a Santa statue.

Epcot / Hollywood Studios (Wish Trip Day 5)

(Before I start my brain has reached mush state.  I apologize for the rambliness and or typos that will be in this blog, I mean more than normal.)

Today we had lunch reservations at an Italian restaurant in Epcot, so that kinda framed our day for us.  Patrick had yet another rough night, he doesn’t ever sleep great when away from home, but the last two nights have been short on sleep.

We got up and got ready.  My cousin was going to come and hang out with us for a while today, which meant that we needed to get out the door at the correct time.  We were running behind schedule but so was she, so it all worked out.

We got to Epcot and parked right up front and wandered into the park, it was nothing like getting into the Magic Kingdom on Monday.  We started out with the Nemo ride, when we finished we met my cousin and her two youngest kiddos.  We wandered around the aquarium a bit.  Patrick was seeking sensory input so bad that he couldn’t stand still.  So we headed for another ride.  We ended up on a ride about the five senses, and what imagination can do to them, it was a fun ride.  Patrick wasn’t so thrilled about the beginning, but once the colors got bright he liked the ride.

When we got off it was time to head to the back of Epcot and go to lunch.  We got there right on time.  We were seated.  I was amazed that all the staff I saw were Italian.  At first I wondered if their name tags just had Italian places on it because it was in the Italian portion of Epcot, but they all spoke Italian to each other.  When Emily ordered her dish, the pronounced it correctly, and that caught the waitresses attention, she asked how come she could pronounce it so well, and we admitted that we speak Italian.  She switched over to Italian, which was kinda fun.  Been a long time since I spoke about food though, I’m a bit rusty.  The food was good, I haven’t a real arancino in a long time, these were small ones, but they were good.  Patrick did ok, for the mood he was in.  The chef came out and talked to us, and made sure that Patrick’s allergies were avoided, too bad he didn’t eat any of it.

When we finished there we wandered a bit more.  Patrick was asking for rides.  We decided to give the “Test Track” ride a go.  The ride was ok, took a long time to get to the ride part.  You start out by designing a concept car, which he enjoyed.  Then you get pushed out into another line that didn’t ever seem to move.  Patrick was doing anything he could for his sensory needs, which made him very naughty.  At the end of the line were cars on a track (think Radiator Springs Racers in California Adventure), the cars go through testing, and then out onto the track which picked up speed, Patrick liked that part.

When we finished we decided that it was time to head to a different park after consulting with my cousin, we decided we would head over to Hollywood Studios.

We got there and it seemed pretty crowded.  We hopped on Midway Mania (Toy Story shootem up ride), which Patrick likes, but the lines are always long.  Our magic pass helped a bit wit that one.

When we got off it was tubes off time, so we took another break, and took off Patrick’s tubes.  My cousing pointed out that we weren’t too far from where Lightning McQueen and Mater are.  So we stopped in and met them.  Patrick enjoyed meeting them.  Next to them were Phineas and Ferb (my favorites), so we stopped in to meet them.  We used the magic pass to meet them because the line was long.  Phineas spotted us waiting, and pointed his handler at us, which made smile.  The handler came to us and told us that they were going to take a break, but we would be next, and had us stand in the shade (thanks nice handler, it was a hot day).  When they came back out they came right to us, and got hugs from all the kids, it was a great encounter.

We thought that Patrick would enjoy a stunt car show – what car obsessed kid wouldn’t like that?  So we headed in and got great seats.  The show was a little too slow, and Patrick just wasn’t having it.  We decided that it was time to be done.  So we headed out, and said goodbye to my cousin.

We came back to our villa, and all took a rest.  Emily spent some time getting Patrick’s tubes (TPN) ready to go back on.  Tonight was Christmas at GKTW so we needed to be up and have dinner on time.  We woke Patrick and headed to dinner.

Patrick is really good at not eating anything until we are finished with our food, and then he started to nibble on things.  Tonight was no exception.  We finished our food, and he kept asking for mashed potatoes.  The beauty of GKTW is they prepare food in the most allergy friendly way possible.  Usually mashed potatoes have milk and butter in them, which are no-gos for Patrick.  But here they are safe.  Patrick nibbled on potatoes for 20-30 minutes.  Which put us a little behind schedule but that is ok.

We headed over to meet Santa.  The line was long.  We did all we could to entertain Patrick, but it took some doing.  Patrick met Santa, and then picked out a present.  A transformer, i’m not sure he would have picked that out before yesterday.

When we finished with Santa the Christmas party was almost over, so Patrick met some of the characters at the party, and it was over.

He decided to ride the carousel.  GKTW has a carousel, that runs all day long, and you can ride as many times as you want.  This time around Patrick rode twice.

I was in the mood for ice cream, so we headed over to the ice cream palace (also all you can eat, open 14 hours a day).  Emily noticed that they had popsicles at a party a few nights ago, so she decided to ask for one for Patrick, lucky enough they had some.  Patrick would say “take a picture of me eating the popsicle” and stick the popsicle in his mouth.  In my mind if that will get him to eat he can have as many pictures as he would like.

Today was a pretty good day.  Thanks to my cousin Leah for driving the 90 minutes each way to hang out with us, and sorry to make you wait so much.

Tomorrow the plan is to back to the Magic Kingdom for one last Disney day.  We might end up missing the Animal Kingdom park, but Patrick wants the rides in Magic Kingdom, so tomorrow we’ll make him happy.

We are almost at the end of this wishing week, we’ll be sad to leave GKTW.

Here are a few pictures from today – we didn’t take many:


Can't you see the look of excitement on his face while meeting Boots?

Universal Studios (Wish Trip Day 4)

Today started off with Patrick having a rough night.  I’m not sure what time he woke up, but he didn’t want to go back to sleep.  When we finally let him get up, he was super tired, and quite grumpy.  We got up and got him ready.  We went to breakfast, but decided we would take a slow morning to see if we could get the day back on schedule.

Wednesday mornings Give Kids The World (GKTW) has horses for kids to ride.  Many of the kids haven’t had the chance to ride a horse.  Patrick had ridden one long ago at a fair, so it was a good experience for him.  He was more interested in the buckles and straps on the sadle than actually being on a horse.  At the end they gave him a hat, because he was now a cowboy.  He tried to give the hat back because it was too big for him.

We came back to our villa and Emily tried to get Patrick down for a nap.  That took some doing, but it worked.  We all fell asleep, I set an alarm.  I didn’t want to miss the day because we got a late start and got caught by rain.  Patrick decided again he wasn’t really sure that he wanted to get up.  We coaxed him up.  It was 11:30 when we got out the door.  We stopped in at a Katies Kitchen a rebranded Boston Market for some takeout lunch.  Emily ate while I drove to Universal Studios.

When we got to Universal we were smart and asked about seeing characters.  The Dispicable Me characters were out, so we headed that way.  Patrick wasn’t really impressed.  He wanted to ride a roller coaster, which is his way of saying that he is bored and wants to have fun.  There was a kids zone not to far so we headed that direction.  Patrick wasn’t sure he like it, but again wouldn’t tell us that.  As I got off I noticed that there was no line, so we asked to ride again, and they had no problem with it.  That time around Patrick giggled, and laughed through the ride.

We wandered around a bit, and decided that we would try to meet Captain America, but we needed to hurry because we wanted to try to see Sponge Bob as well.  So we hustled over to the other park to see Captain America.  When we got there, Captain America was no where to be found.  People were waiting around for Spider Man.  I stopped in to ask and the worker kinda brushed us off, and aid well he might be out later, but you never know.  That kinda bugged me, so I complained a bit to him, probably shouldn’t have done that.

We got back to the other park and met Sponge Bob.  And Patrick Starfish.  Kinda fun to say the phrase “Patrick meet Patrick”.  Patrick was excited to meet the characters.

Emily had researched last night a few things to do today.  One of the things she was excited to see was a stage show about animals that performed in movies.  I wasn’t sure how Patrick would do, but we were in the right place at the right time.  When we arrived, an employee took to Patrick and chatted with him until it was time to go into the theatre.  We got front row seats.  Patrick did fairly well.  The animals did great.  We were told to stay seated and we would be able to meet an animal.  We followed the instructions, it felt kinda funny to have them usher everyone out of the theatre.  But we got to meet Marley from “Marley and Me”.  A very nice gentle dog.  Patrick was happy to see the dog, but more interested to play with the head trainers radio.

We got out of the show, and it had been raining, but cleared up by the time we got out.  It was almost time to meet Dora (one of Patrick’s current favorites).  So we wandered and found Bumble Bee the Transformer that he could have his picture taken with.  Bumble Bee really wanted to interact with Patrick, but that was fairly difficult to do when you are dressed as a car.

We headed back to where Dora would be.  We sat on a curb and didn’t tell Patrick who was coming.  When the music started to play, Patrick started to smile, and then he spotted Dora and Boots.  He was super excited.  They characters danced around, and Dora had a bit of a costume malfunction in that the back of her head was coming open, and they pulled back.  I was afraid that she was done, but came back just in time for Boots to join her and start taking pictures.  Patrick was super excited to meet them, and see backpack.  He was also excited to see Diego.

We decided to head back over to Islands of Adventure to see Captain America.  We got there a little early.  So we hung out where we thought they would come out.  The super heros came out and Captain America wasn’t there.  I was worried that he decided to take the afternoon off.  But we walked to where he hangs out, and he was there!  After 4 tries, we succeeded in meeting Captain America!  Captain America chatted with Patrick and showed him his shield.  We got a great picture with him.

We had checked off all the goals for today.  So we decided that we would wander back up to Hogsmead, get some Butter Beer and take Hogwarts Express back over for the parade in Universal Studios.  We had received tips on where to be to see Dora in the parade.  To get to Hogsmead you have to go through Dr. Seuss land.

On the way through Dr. Seuss land we spotted the Cat in the Hat, and they pointed us in the direction of other Dr. Seuss characters.  The last character we met there was The Grinch.  He had a lot of fun with Patrick, including picking his nose and wiping it on Patrick, Patrick proceeded to pick his nose and wipe it on Grinch.  They played for a few minutes, we were all laughing when we walked away.

Patrick saw the One Fish, Two Fish ride and declared that he wanted to get on that ride.  Since we didn’t really have anything firm to do we said sure, and since I rode it with Patrick yesterday it was Emilys turn to go with him.  He laughed the whole. Chances are good he’ll be talking about the fishy ride for a while.

We got to Hogsmead, and grabbed some Butter Beer, and headed for Hogwarts Express.  We arrived back in Universal Studios, and went to the spot we had been told about.  It took the parade a long time to get to use, so we let Patrick run a bit.

The parade arrived with all of Patrick’s favorite characters yet again.  Dora and her crew stopped just down the street from us.  Patrick was fascinated with them, the crew came by and high fived Patrick.  One of the flowers chatted with Patrick for a long time, she let him touch her costume, Patrick loved it.

From there we hit a few more rides and decided we were done.  We headed towards the car and came back to our villa.  This was the latest we had been out all week.  The rain stayed away pretty well, so all the rides were up and running.

The GKTW activity tonight was Village Idol, one thing that Patrick wouldn’t be into, so we ordered pizza to our villa, and had an evening in.  GKTW offers a non dairy pizza, something that we haven’t seen anywhere else.  Patrick actually took a few bites of his pizza which was great.

As Patrick went to sleep he talked about meeting Captain America, the fishy ride, and Dora and Boots.  He seems to process the day as Emily helps him go to sleep, so we find out what he really liked at the end of the day.

On the schedule for Tomorrow is Epcot and another park (haven’t decided which).  Sounds like my cousin is going to come down and spend some time with us which will be fun to have a local.

Here are some pictures from today:


Meeting Spiderman.  Thanks Spiderman for taking a few extra moments with Patrick.

Islands of Adventure (Wish Trip Day 3)

Is this really only day 3?  Seems like we have been at this for a long while.

Today we did our normal morning routine (mommy ended up spending the last few hours of the night helping Patrick sleep), and set off for Universal Studios.

I yet again had trouble spotting the handicap parking instructions.  This time it was easy enough to fix.  However both parks have a blue line painted on the road to guide you to the correct place.  Why I can’t follow that I’m not really sure.  Oh well, that is a side note.

Getting into Universal Studios was fairly easy, crowds were fairly light.

We decided that we would head to the back of Islands of Adventures and start at the Harry Potter world which included Hogwarts, and Hogsmead.  There was a kids roller coaster there that Patrick really liked.  I rode the Adventures of Harry Potter ride which was fun to see, but was a bit much for so early in the morning.  We wandered around a bit.  Emily and I read the Harry Potter series of books in preparation for this visit.  Patrick didn’t really care, but it was fun to see.  We tried out the Butter Beer, which was pretty good.  We watched a wand pick its wizard, which almost held Patricks attention.

After Harry Potter, Patrick was bored, so we headed to the Dr. Seuss part of the park.  This was the kids part of the park.  It wasn’t busy.  We rode all the rides, which Patrick had fun with.

We decided we would head to lunch.  En route to that there was a guy in the middle of the walkway holding a “Meet Spiderman” sign.  Patrick is currently big into superheros, so we decided we would stop.  That was a good choice (see the pics at the bottom), Spiderman had a good chat with Patrick.  He also pointed us to where Captain America (Patricks current favorite) was.  When we got to Captain America he had to go, so we barely missed him.

We stopped in for lunch, Patrick was fairly grumpy because he was tired.  After lunch we headed back to where Captain America was supposed to be, on the way we were stopped so all the super heros could ride there motorcycles to wherever they go.  Missed Captain America yet again.

We wandered through the park looking for rides for Patrick.  It started raining.  Today we were prepared with umbrellas for Patrick and Emily.  We ended up back in Hogsmead and decided that we would take the Hogwarts Express to the other park and see what things were like there.

Hogwarts Express was a fun ride.  We had a cabin to ourselves because Patrick was in a wheelchair.  Reminded me of a newer version of an Italian train, which I think is what they were after.

We checked out the newest part of the Harry Potter world which was diagon-alley.  It was done very well.  Outside diagon-alley was the Knight Bus, which Patrick refused to go near the wheels because they were scary.  Patrick has a phobia of some wheels.

We headed down to Minion Mahem, which Patrick says he liked, but I’m pretty sure he didn’t.

We took a break and took Patricks tubes off, and decided that we were tired.  So we headed back to our car, and drove back to Give Kids The World (GKTW).  It poured rain on use as we drove back.

We all took a good nap.  When my alarm went off I didn’t want to get up, but I did.  When Emily tried to wake Patrick he wouldn’t get up, so we let him sleep a little longer.  We got his TPN ready, and got ready for a special guest that would be arriving at bed time.

We finally coaxed Patrick to get up, and headed to dinner.  Patrick isn’t eating much this week, which meant he got bored quickly.

Tonights activity was Mayor Clayton’s birthday party.  Patrick had a great time at the party.

We also too a few minutes tonight for Patrick to turn in his start to be put on the ceiling of the  Castle of Miracles.  Patrick also picked up his pillow, which was grown on the pillow tree by a magical owl (makes sense to me because I was there).

We headed back to our villa to get Patrick ready for bed and ready for our special guest.

At a little after 9:00 there was a knock at the door.  Mayor Clayton came to tuck Patrick into bed.  Patrick hoped into bed, and Mayor Clayton tucked him in and gave him a good night kiss.  Patrick thought this was great.  As Emily was putting him to sleep Patrick asked if Mayor Clayton would come in the morning and help him take a bath.

Today was a fun day.  Tomorrow the plan is to go back to Universal Studios.  Emily is currently researching what we missed today.

We took a lot more pictures today.  Here are a few.


The masked crusader - Patrick.

Magic Kingdom (Wish Trip Day 2)

For the first time in a long time, Patrick slept the whole night in his bed without mommy while traveling.  I think I can say we were all very tired after yesterday.

We started off the day introducing Patrick to a jetted tub.  He wasn’t so sure about it until dad came into the room, and then he had to show off so he splashed, and kicked water everywhere, which made the jets ok.

We got everything together, someday we will blog about what it takes to get Patrick out the door.  I’ll just say that it is a process that takes a lot of time, and preparation, and usually a few moments of “what about this” to be figured out.

Give Kids The World (GKTW) has characters come to the resort during the week.  Today Goofy, Mary Poppins, and Mickey were at the resort to meet the kiddos, and take pictures.  We were also instructed that if we brought the stuffed Mickey, we would be able to get it signed by Mickey.  We met Goofy first, and he decided that he would sign it as well, which was fine by us.  After the fact Patrick decided it was naughty, which makes us smile.  Patrick liked meeting the characters, and having a little more time to spend with them than in the parks.  We had a nice chat with Mary Poppins, if you ever get the chance to meet her in one of the Disney parks, take it.

We set out for Disney World.  I missed the turn for handicap parking, so we had to go around.  Once we got parked we headed towards the park, only to meet a long line for the ferry.  We got to wait for two ferries, and finally made it on.  After we got off the ferry, we got to wait in yet another line to go through security (that was a large crowd trying to get through).  Then yet another line to actually enter the park.  At this point, I don’t think any of us were in a very magical spirit.  We had to stop and get a sticker that identified Patrick’s stroller as a wheel chair, which was another line.  However this line was different, one of the cast members noticed Patricks GKTW button and took special care of us, which was appreciated.

After roughly 2.5 hours since leaving GKTW we were finally ready to see the park.  Not intending to complain here, just remembering how the day went.

Patrick loves autopia in Disney Land, so we headed to the “Tomorrowland Speedway” (i.e. Autopia) for the first ride.  We presented our special access pass, and hopped on the ride.  Patrick did his normal, lets not steer so we bump as hard as we can into the guide rail (thanks Emily for being willing to take the abuse of these maneuvers.)

We wandered around taking in the park riding a few rides.  Patrick wanted to meet Donald Duck, so we headed to where he spends his days.  A cast member saw his button, and said follow me, he lead us through a store, and into a back hallway.  Next thing we knew we were standing next to Goofy and Donald, he had taken us to the front of the line through the exit.  Minnie and Daisy were across the room, and they also took over to meet them.  Patrick was super excited to have met Donald (even remembered it in our prayer tonight).  We had a similar experience meeting Tigger and Pooh Bear.

We snagged some lunch.  I had mac and cheese with pot roast on top of it – don’t knock it until you have tried it.  The only problem with it was that it was hot, and the day was quite hot as well.  Patrick was starting to zone out, so we decided we would checkout the Wish Lounge.  This is a room in the first aid building set aside for wish kids to take a break, and gives them a place to take care of medical needs.  We knew that hopes of getting Patrick to nap were very low, but a rest would do him good.  I set a timer, and he laid with us on a big pillow until the timer rang.  He almost fell asleep a few times, but resisted it well.

We caught a few more rides, and then it started raining.  At first I was smiling at all the people that were hiding under any cover they could find.  It sprinkled for about 20 mins, and then the rain hit.  We were drenched, and Patrick wasn’t so happy about it (he really doesn’t like having rain or snow on his face.)

Because of the rain many of the rides were closed, so we went and met Mickey again. This Mickey was different in that he talked.  Patrick wasn’t so into Mickey coaching him to fly like Peter Pan, but he was super impressed that Mickey could talk.  Tinker Bell was in the same building, so we took the time to meet her as well.  She spent a long time talking to Patrick, he didn’t really catch what she was saying, but enjoyed meeting her anyway.

We rode It’s A Small World one more time.  That ranks as a close second for favorite rides.  (And in Patrick’s opinion the one in Disney Land is better).  It was time to go.  We caught the monorail back to parking (much faster than the ferry).

We got back to GKTW and got ready for dinner.  We called a train to come pick us up (a fun way to get around the resort).  We went out on our porch and waited.  Patrick took my camera and started taking pictures, mainly of our car (See the photo gallery, I’ll include a few).

We had dinner then it was time for Halloween.  GKTW has Halloween and Christmas every week.  Since it was raining Halloween was inside which made it a little cramped, but fun none the less.  Patrick ran around the room getting candy full of all kinds of things he is allergic to, but thats ok, he was having fun collecting candy.  We then got his face painted.  When we got done with that the party was a little too overwhelming for him, so we headed out to see what else we could find to do.

As we were walking Patrick rubbed his face, and got face paint in his eye.  We detoured to the nearest rest room, to try to get his face paint off.  When we finished he looked kinda like a zombie.

After wandering a bit more, we stopped in for ice cream.  GKTW has soy and rice ice cream, both are safe for Patrick.  We decided we would try to get him to eat rice milk ice cream.  The only problem was that Patrick will only eat while bread this week.  He wouldn’t go near the ice cream.  After we forced him to eat a bit, he said it was good, but still wouldn’t eat it.

We made it back to our room, and did the evening preparations for Patrick (almost as much as morning preparations).  Emily got Patrick to sleep while I talked to some family to make plans for the end of the week.

Today was a fun day.  As Patrick was going to sleep, he was no longer Boots (from Dora the Explorer), he was now Mickey, Emily is Pluto and Minnie, I am Goofy.  We’ll see how long his name will be Mickey, but that means today was a very big day for Patrick.  His wishes truly were granted today.

We are so thankful for all that do so much for Patrick.  The volunteers here at GKTW, and the countless people that help us so much back at home.

By the time I sleep I will have taken 25,000 steps according to my fitbit.  That is roughly 12 miles walked today, it is time for bed.

PS – Sorry for the rambling of this post, I’m trying to record memories that we can reflect on.

We have taken some pictures, but all of the pictures taken with the characters will come at the end of the trip.  Here are some pictures from our cameras taken today:



Our own personal welcome sign for the next week.

Off to Orlando (Wish Trip Day 1)

Today we set out for Patrick’s wish trip.  We woke early.  Patrick was very excited.  When we got through security at the airport (always amazes me what security comes up with as the official policy – different every time – and we aren’t allowed to tell them what the policy is, even though we know it.) Patrick excitedly waited for our airplane to arrive at the gate.  Once it did, he watched all the bags come off, and all the happening around the plane.  Then we boarded the airplane.

The flight was fairly uneventful.  Patrick played, and kicked the seat in front of him, wanted to un-latch the tray table, and play with the video screen in front of him.  And when we tried to get him to nap – he screamed, and kicked.  This is normal behavior for flights.

When we arrived in Orlando we were met by a nice man named Bill, from Give Kids The World.  He helped us find our luggage, and then we sat down with him to get a brief orientation of how to get to Give Kids The World (GKTW), and what to expect when we got there.  He then helped us to our car, and made sure we departed safely.

When we arrived at GKTW we had a very personal checkin with yet more information.  They also presented Patrick with a stuffed Mickey, he immediately hugged him.

Emily and Patrick rode in a golf cart and I followed in our van to our villa.  Larry the GKTW volunteer showed us around our villa.  I have never seen a place that has a kids sized jetted bath tub, and yet the grown-ups have a shower.

We headed off to dinner – I was hungry and no-nap Patrick was running wild.  We had dinner at the Ginger Bread House (sponsored by Perkins) that was staffed by a bunch of very helpful volunteers.

I got done with dinner before Emily, so while she was having desert, we snuck over to the Carousel (free, and ride as many times as you want).  Patrick happily rode, when we finished Emily met us at the gates.  Mayor Clayton and Ms. Mary (they were married a while back by Mother Nature) were greeting guests, Patrick was excited to see them.

We hopped on a GKTW trolley, we dropped Emily and Patrick off at the Candy Land party, and I headed to orientation.

From what I hear Patrick had a great time at the party, he gathered a bunch of candy (which he probably shouldn’t eat), and a prize.

I got officially oriented on our tickets to Disney World, Universal Studios, and Sea World.  If anyone is like me and searching to find out if GKTW gives you disability access passes, the answer is yes.  We have everything we need to make our time at the attractions magical and wonderful.

When I arrived back at the villa, Patrick was ready for bed.  He is now asleep.  Tomorrow Mickey and some of his friends come to GKTW, and then we will go visit them at the Magic Kingdom.

Been a busy day, looking forward to fun tomorrow.

Here are a few pictures from todays adventures:

Granting a wish.

Patrick has been learning about Disney World.  For a time when asked where he lived he said Disney World.  Patricks wish granters would send a package every once in a while to let him know that it was still happening.

A few months ago we got the dates for the trip.  There was a lot that needed to happen between then and the trip, so it got put off in our minds.  We had a trip to Omaha, I had a business trip, Patrick started Kindergarten, and we had an attempt at camping (gee most of those should be blog posts, I’ll see what I can do about that).  A few weeks ago we got a call from one of Patricks wish granters Beth, she told us that they were working on planning a wish granting party.  Something to tell Patrick that his wish had been granted, and he was on his way.

About a week ago we got details of his wish granting party.  And started inviting family, and close friends (sorry to those that didn’t get invited, the group was fairly large and we didn’t think it would be right to go larger, we still love and appreciate you).

We had coordinated the details with Beth.  We would send Patrick to the neighbors, the guests would come, and then we would surprise him, and then an ice cream truck would come as the cherry on top.

As with all things in our life, things change.  Emily started exploring some new therapy for Patrick yesterday.  They said great would it be possible to come tomorrow afternoon.  This caused our plans to change a bit.  The new plan was that I would come home early and meet everyone, help Beth and Natasha setup and then Emily and Patrick would arrive home from therapy to a group of friends.  With the contingency that if they got back too early they would play at the neighbors.

I got home from work early thinking I needed to help clean the house.  Cleaning the house with Patrick around is sometimes an effort in insanity.  When I arrived home Emily had the house in great shape.  I sat down and read for a while.  Then I decided to grab some chairs.

As I got outside Beth pulled up with balloons.  We tied balloons around our front yard.  Guests started arriving.  Natasha arrived with more balloons, which made things look all the more festive.

The majority of the guests arrived, and I texted Emily to let her know we were ready.

Patrick was taking in all his guests at his surprise wish granting party.

Patrick was taking in all his guests at his surprise wish granting party.

A few minutes later Emily pulled into the drive way.  Patrick looking out his window noticed we were all there, and started grinning.  Emily reports that Patrick saw everyone and yelled, “Hey! Why everyone here?” Then, grinning ear to ear and climbing out of his seat before we were even parked, “I want talk to them!”

Patrick got out of the car as fast as Emily could get his door open.  Ran to the driveway and just grinned.

He saw the present that was waiting for him on the porch and ran to it.  Beth cut him off, and presented him with a certificate stating that his wish was granted.  Then he resumed his quest for the gift.

He pulled all the things out of the gift bag, and around the corner comes music from and ice cream truck.  It stops at

"You are officially granted your wish"

“You are officially granted your wish”

our house and Beth leads him over to the truck.  Emily got there just in time with Patrick safe (soy) ice cream.  Patrick was more fascinated with the van than the ice cream, but none the less it was a hit.

The rest of the evening was spent with everyone getting ice cream, and Patrick running from person to person hugging and saying hi to them.

Then Beth let him play with her car (big points from him).  And she led him up and down the street naming all the car makes, which is one of Patricks favorite games.

I pulled Patrick aside and told him we were going on a trip on Sunday, and that we were going to go to Mickey’s



other house (he’s been to Disney Land a few times).

The night was great.  Big thanks to those who came.  Even bigger thanks to our wish granters Beth (and her husband Tim who accompanied her tonight), and Natasha.

We are super excited to go on our adventure.

The ice cream truck came just for Patrick.

The ice cream truck came just for Patrick.


The left overs of the balloons.  Each child took one home as well.

The left overs of the balloons. Each child took one home as well.