Mom’s Blog – Crooked Journey

What a year 2018 was!!!

January 3, 2019 Crooked Journey4 Comments

Wow! I can’t believe another year has flown by. All in all – it was a fabulous year for us! Our whole family was healthy this year; we had no hospital stays, and Ben seems to have somewhat caught up from the gaps in his learning from missing so much of grade one.

Here are some of our year’s highlights!

The Neck Brace – Ben wore his neck brace, but we realized (in August) that it wasn’t necessarily helping him, so we wore it only for preventative measures. Ben’s surgeon doesn’t want us wearing it, so we have agreed to not wear it til the end of June and determine then if things have gotten worse at that point.

Name Mentor – Ben’s dentist told him in July that he named his new son Benjamin because he thought Ben was such a neat kid. Ben is taking his new mentorship pretty seriously.

Wish Trip – 2018! In July/August we had our trip of a lifetime to Disneyworld and Give Kids the World Village – we are so grateful for that experience. I actually even did up a scrapbook to record our memories! Now I just have to work on the kids baby books ;).

One of a kind hats! Aunt Betty and Uncle Don sewed Benjamin two customized winter hats, so his ears won’t get cold when he is outside…Thank you!!! How awesome is that!!!

I get a contract teaching pre-k full time for a year. This is such an amazing full circle for me because I can take all of Ben’s early intervention experiences and the amazing people who worked with us and use that knowledge to pay it forward by really investing myself into my students and doing everything I can to help these fun, crazy, amazing little kiddos create early success in life). I am overwhelmed by all the interesting things I am learning this year! Teacher hint to parents: let your kids PLAY (physically) every day – so important for social, emotional, and physical development!

Ben has an amazing support team in school again this year! We are so grateful for the kindness and compassion of our teachers, administration, and EA’s. We are so luck to get all the help we get navigating our journey!!!

Loving the fall…video below – this is Ben a year and a half post surgery. After Ben had his spine surgery, I had no idea what to expect. I thought all movement would be tight and rigid. This kiddo doesn’t let anything stop him. I showed this video to Ben’s surgeon. He had a minor heart attack, but couldn’t help but laugh!

In October Ben and I went to Montreal again to see our friends and clinic team. We are told that Ben will require another surgery (which we knew) and we will wait a year or two until he gets bigger for that to happen. The straightness of his back is still awesome, but his neck that is the problem (a pain in the neck really…haha!). We cannot fix the actual problem where it is (around the C1-C2 area because the risks associated with this are not even comprehensible). Instead, we will try another osteotomy (cutting out bone) lower down the spine C6-C7ish (what’s left of it) to help Ben appear more level headed (ha ha…I’m totally going to tell him that one day), but it will never be perfect…who is though? The doctor also insisted that we stop using Ben’s brace because he wants him to just have fun and enjoy life. He says not to use it for preventative measures, and that he will fix any problems that come up. Our orthotist in Edmonton is willing to let us try that out (often when you please one doctor, you are not pleasing another…this is a tricky part to navigating our journey).

Ummmm….here’s some crazy awesomeness that happened in October – Remember when we were at Give Kids the World and I said a lady asked us to fill out a form for Ben to get his own song….well that happened!!! And he LOVES it!!! Oh my GOODNESS!!! We all LOVE IT!!! This was the most special thing in the world. I’ve been trying to update this blog post FOREVER to tell you about it, but I haven’t had a minute…I hope you enjoy this. Carl Alloco…you have some pretty big fans in this house…you too John Beltzer! We played this song for Ben’s classmates and they loved it! I have to admit I find myself humming it every once in a while!

Ben’s Song Lyrics

This is a video of us playing it to Ben for the first time! At first it is hard for him to understand the words. I had the joy of sharing this video with the song-writer Carl Alloco and John Beltzer (the founder of Songs of Love) – amazing human beings. Excuse the house – it’s a mess!!! Chaos reigns!

Audiology – Jesse, Ben and I have a surgical consult regarding Ben’s ears. There are two potential surgeries at hand there. The first one is to implant his BAHA’s (bone anchored hearing aids) into his skull. This requires putting two screws into his skull and cutting patches of skin and thinning it out (so hair won’t grow) behind the ear. (I remind Ben that he seems to really thrive with screws in his body, which he heartily agrees with…does that seem screwed up…haha…killing it!!!). This is a day surgery, so it should be simple in nature. This surgery seems like a bit of a no-brainer to me if Ben is using the hearing aids anyways, but we want to confirm a few things on our next hearing test before giving the go-ahead. There are two positives to come from it…Ben will be able to stop wearing his headband and he should get improved hearing because we will be anchored in directly to the screw on his head. The second surgery discussed was a reconstruction of his right ear and a minor reconstruction of his left ear. To do this, they will have to pull out a piece of Ben’s rib and carve an ear out of it (Ben thought they were going to take one of our ears and transplant it from our head to his – which we would totally do if we could – mine of course – Jesse’s are ridiculously large and meaty). It is generally a two part surgery with the first part taking a full day. The second part would take place over a year later and could be optional as the success rates are questionable. Ben is not big enough yet for this surgery as his chest measurement is 52 cm and he will need to be 60 cm or more in order for us to proceed. Jesse and I are not sure about this one. I like the idea or his ears being even as it will help with wearing glasses later in life (which was a huge adventure when he was wearing glasses a few years ago), so we will see how it goes. There are a few other options for this as well, but the rib one seems the best so far.

And I think that is it for us. It was a good year…we’ll see how 2019 shapes up. Ben is happy and healthy. He does get pain from time to time, but it is manageable and he is pretty tough about it (unlike his father who wants to be hospitalized – I wish – for the common cold. Thanks to everyone for their kind words and thoughts this year. We look forward to updating you in the future!

Wish Trip – Last Day GKTW

August 30, 2018 Crooked Journey4 Comments

We managed to sleep in a little bit this morning. This was a day to do all of our favourite things and connect (once again) to this wonderful resort we were lucky enough to be able to stay in. Once we were awake, we left our house to find Matthew’s Boundless Playground. This was a park that we hadn’t come across yet, so we wanted to see if we could find it. It was quite amazing and fit in well with our Candyland theme and was fully accessible for all kids – something I think every park should be!

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After we checked that out, we headed to breakfast. The kids, of course, wanted a full ice-cream breakfast again…why not? By now Ben had perfected his order: cut a banana in half, put hot fudge on the banana, 2 scoops mint chocolate chip ice cream, whip cream, cookie crumbles, and cherries. Living the dream! Hannah’s order was a bit simpler with cookies and cream ice cream, hot fudge, cookie crumbles, and cherries. I was expecting social services to come grab them from me at any time for not providing the necessities of life…like produce and protein???

After our ice cream, we headed to the Castle of Miracles to check out Ben’s star placement. They took us into a room and told us that Stellar had left directions to our star. She said that we could use her magical fairy telescope to find it. She was also leaving a Giant (Franko) there to protect our Wish Star and Keep it safe. (I forgot to take a picture of Franko). We looked where the light was shining from the magic telescope…and sure enough…there it was – hung in the tower in a section called the Galileo Galaxy. Ben’s wish star will stay in that tower forever.

After checking that out, we went to Amberville (of course), so Ben could play with his remote controlled boats again. We then went bowling and played video games. We also went on Lori’s magical ride again. We then explored the park some more and noticed a quieter pool that we hadn’t noticed before. We played basketball for a bit (our skills were unimpressive to say the least) and then we headed back towards our villa. Enough adventures…it was hot out and time for a swim. We spent the afternoon playing in the pool and in the waterpark.

Afterwards Hannah and I ran to buy some last minute souvenirs from the Gallery of Hope, the only place in the park you can spend money. We had decided to go to Medieval Times for dinner that night. It’s pretty cheesy, but Jesse thought the kids would enjoy it, which they did. It was not too far from the resort – a short cab ride. It’s basically a huge arena where Knights battle in order to impress the Queen and get her favour. The big draw for Jesse and the kids was a three course dinner with no utensils (yup…soup was a course). This etiquette is a means of embracing the Royal Court’s traditions and hedonistic pleasures. In our family it was just a fancy red neck restaurant. We had fun cheering on our knight – the Black and White Knight as he attempted many skilful (yes, this is technically spelled right unless you’re an American) contests – attempting to put his lance though a small gold hoop at breakneck speed, jousting with other knights, and performing some other weaponry type of games. Frankly our knight was not incredibly skilled, but he was awfully pretty. He didn’t win, and our support of him became rather limited when we determined he was not winning. Pretty doesn’t buy loyalty. We did however grow to love the Blue Knight who could take a whole lot of heckling fairly light heartedly….we may have had a few cocktails!!! He was secretly our favourite (although we would never tell the B&W Knight that). The kids had a medieval blast.

We headed back to the resort and had a little bit of time before things shut down for the night. We went for ice cream again (ummm…hi….Weight Watchers…yeah…it’s me again….I’ve done bad things – real bad things…ummmmm…save me a seat for the next meeting…ummm…maybe make that two seats…) then decided to split up to do our favourite things again.

Ben was in his pajamas because he wanted to go play with the remote controlled boats then go to the movies. Hannah and dad went back to change and go for a swim. We went to play remote controlled boats again for a while then we played some video games (my Ms. Pac-Man skills were improving. After, we went for a ride on Lori’s magical ride. By then it was a bit late for the movies, So we decided to check out what Hannah and dad were up to in the pool. It looked fun, but it was almost time for the pool to close. Ben had changed his mind about swimming, so I told him to take off his pajama top and jump in. It was the perfect ending to an amazing trip!

We got back to the room about 10:30ish. It was time to start packing. Ben changed into different pajamas and was asleep in no time. We noticed that he was wheezing quite a bit, so we woke him up to give him his medicine. I’m not sure why….maybe the horses? He didn’t seem to have problems the day he went horseback riding? We gave him his medicine twice, and it seemed to settle him down quite a bit. Then we packed, packed, and packed until about 12:30 a.m. We went to sleep for a few hours (literally two) because our alarm was set for 2:30 a.m. We were getting picked up at 3:05 a.m. to take us to the airport. We groggily woke up, got dressed, met quickly with GKTW staff to thank them and get our exit package. Then we went on our way. Thank you Rainbow Society, Give Kids the World, Disney, and Universal for an amazing week of spectacular memories! We hope to come back one day to “pay it forward” by volunteering to help other families!

See man … see man eat meat! (He’s never looked at me that way!)

Imagine a fireworks show that makes you believe anything is possible! (Disney Stock Photo)

Wish Trip – Day Five Universal Studios

August 29, 2018August 29, 2018 Crooked Journey4 Comments

As it turned out, Ben was up bright-eyed and bushy tailed! He seemed fine and wanted to go with us. As we were leaving the resort, I noticed a boy staring at Ben (something I notice – and he is beginning to notice). Then I heard the boy’s mother rip into him about it – THERE WILL BE NO STARING AT THIS RESORT – DO YOU UNDERSTAND ME!!! THAT IS NOT AN OPTION!!! Inside I was cheering her on – thankful that she took that instant as a teaching moment. I don’t think Ben heard her. I think it is so important to have conversations with our children about social behaviours. Even before we came to the resort, I spoke to the kids at home about the fact that we could see some really different looking people at the resort…people in wheelchairs or walkers, people who are bald, people who look different, and people who are (and look) really sick. We talked about how it is not polite to stare and that they can always ask me questions AFTER that person is gone. Kids need to be taught about and exposed to differences.

Anyways, we left the resort early for once. It took us a while to actually get into the park. We finally got in to Universal Studios and I picked up our free stroller and tickets there. We went on the Minions 3D ride right after we got in. I have to say that Disney was amazing to us. We weren’t expecting to be treated as well at Universal, but I have to say they were as much, if not more, accommodating to us. We were given a Guest Assistance Pass for Universal at GKTW. We were treated like Royalty there! When we went to go to the Minion show, they directed us to a different entrance where we avoided all lines. This was to become the norm for the day. When we got in line for most rides, the employee at the front of the line up would radio someone to come up and personally escort us to the front of the line. They were kind, funny, and charming. My favourite moment was when we went on the Jurassic Park ride. I heard the employee talking into his radio and I asked him “what did you call him?” (referring to Ben). He said “I told them we have a “golden dino” up front. Lol! I laughed. Anyways, Ben loved the Minions ride. After, we also went to the Shrek 4D show, which was funny and entertaining to all of us. Who doesn’t love a wet sneeze in a movie theatre? After, …Jesse and Hannah wanted to go on the Hollywood Rip Ride Rocket. I thought they were insane, but Ben and I had a drink and waited.

Afterwards, We were walking to another part of the park, when an amazing guy from Universal (who saw Ben’s GKTW button) stopped us and invited us to come meet Optimus Prime, which was super exciting for Ben.

We then went to the Animal Actors stage, which was phenomenal. They were so gracious and kind to us. They invited the kids to stay after the show to meet one of the animal actors in person. The show was fabulous and one of the (many) highlights of the trip for both kids. Afterwards, we got to meet the dog from the movie The Proposal and the kids took some pictures while we asked the trainer a bunch of questions.

Then it was time to head to London and see what was going on in the Wizarding World of Harry Potter! We checked out the Night Trolley and #12 Grimmauld Place, where I can’t be sure but I am pretty positive I saw Sirius’ mom peeking at us! We then headed to Diagon Alley to the world of magic. We decided to exchange some cash for Gringott’s notes – when in Rome – from a not-so-friendly goblin at Gringott’s.

We next went to Ollivanders to get interactive magic wands for the kids. We had been reading Harry Potter to the kids over the summer, and they LOVED it! We were also watching the movies. There were 29 interactive places to stand through the Wizarding World of Harry Potter. The kids could stand on the designated spots and flick their wands in a certain way (it had to be quite precise) and then something would happen…a toilet would flush (in Ben’s case) or a door would unlock (in Hannah’s case). They had a blast checking out their new magic skills. For future wizard families, I would recommend going there earlier in the day because it was very hot and crowded by the afternoon. Diagon Alley is set to mirror the close, crowded streets of London, so it felt a bit overwhelming at times. We enjoyed checking out the crazy stores and such then headed to lunch.

We went to the Leaky Cauldron for a pub-style lunch. Hannah had fish and chips, Ben had a meat pie, I had the fish pie, and Jesse had the Ploughman’s lunch. It was all very delicious. We drank frozen butterbeer, pumpkin juice (Ben’s favourite), lemon squash, and gilly water. The service was great, and we were glad we had gone. After lunch, we took the kids to Knockturn Alley, which is meant to be the “dark” place in Harry Potter world. It was also a very cool place, which meant it was nice reprieve from the heat as well. The kids played with their wands and checked out some more stores. Afterwards, Jesse and Hannah wanted to go on the Escape from Gringott’s ride, but we thought it might be a bit much for Ben (which Jesse confirmed afterwards). Ben and I wandered around a magic store while they were gone. When they returned, we all decided to go to Hogsmeade, which meant heading to a different Universal Park. Our intention was to quickly look at Hogsmeade then head back to the resort because Santa Claus was coming that night and there was going to be a big Christmas party. We went to Kings Crossing to get on the Hogwarts Express. However, we ended up getting stuck in the middle of the lineup. The train had stopped working, but because we had the stroller it would have been near impossible to sneak out of the line. We ended up waiting for over an hour for the magicians to fix the train. (locomoto-repairo) We finally got to the other end. It was extremely hot and crowded by that time. Jesse and Hannah wanted to go on Harry Potter and the Forbidden Journey, so Ben and I waited and had some more Pumpkin Juice. Here’s what I would do different next time. Even though we didn’t think Ben could go on these ride, I would ask if he could walk through the lineup. I guess there were all kinds of wonderful things to see within these rides. The same goes for the Gringott’s ride. I think it would have been more interesting for us. Anyways, we quickly left the Wizarding World of Harry Potter after Jesse and Hannah were done. We had definitely missed a lot of stuff in HP World, but we needed to move on. We realized that it was already 5:30 by then. We had to make some executive decisions. I suspected by the time we got all the way back to the entrance, walked through Universal City Walk, caught a cab and got back to the resort it would be about 7:00 p.m. and the Christmas party would be over, or close to it. We took a vote and decided to stay.

We went through Jurassic Park and went to the Raptor Encounter, which was a visit with Blu from the movie Jurasic Park. Ben was a bit timid, but managed to hold out his hand for a sniff from Blu. Jesse on the other hand did not incite such warmth from Blu (Jesse said it was his manly alpha scent). Blu in turn went after Jesse (who may or may not have screamed like a girl and jumped out of his skin). It was pretty hilarious!

We then all went on the Jurassic Park river adventure. It was here that they took probably the best and most symbolic photo of our family. Mom (who didn’t realize there was a 80 foot drop) reaching over to protect Benjamin. Ben (having a blast) and saying “I’m ok Mom!” Jesse (oblivious to all of us and enjoying his ride). Hannah – always in the background – almost invisible!

After Jesse took the kids on the Pteranodon Flyers – a gentle flying ride over Jurassic Park. We then went to Reign of Kong for another 3D type of ride. After we were done, we decided to go on Popeye & Bluto’s Bilge Rat Barge. I thought this was another ride like the Kali River Rapids ride we went on the day before, which technically it was. What I didn’t realize was how soaked we would get – different from the day before. I have had showers where I have not gotten as wet. There were waterfalls going down on us, kids shooting water at us from bridges, splashes hitting us from the sides. This ride would have been fantastic to do in the heat of the day. We laughed and paid $5 to stand in a gigantic dryer for 5 minutes. Afterwards the kids played together on Me-ship The Olive – a playground of sorts, while Jesse and I figured out our next course of action.

We decided that we were so late now, we may as well stay and have dinner. We hit the Amazing Spiderman 3D ride on our way out and headed towards Mythos – a beautiful full-service cave like restaurant where we could rest our feet and have a glass (or two) of wine.

During dinner, we had to make some decisions about the next day – the last day of our Wish Trip. Here were our options:

Go to Seaworld – we still had tickets

Go to Universal – we still had another day’s tickets

Stay at the resort

Jesse and I were both a bit surprised that the kids overwhelmingly wanted to stay at the resort again the next day. On our way out, Ben and I went on the High in the Sky Seuss Trolley Train Ride – a beautiful scenic tour of Seuss Landing. After that, we headed home and tucked two (very tired) kiddos into bed.

Wish Trip Day Three GKTW

August 27, 2018August 27, 2018 Crooked Journey2 Comments

Give Kids the World was founded in 1986 by a man (hotelier/philanthropist) Henri Landwirth. He was born Jewish in Belgium and he, his sister, and parents were sentenced to death/labour camps. He spent the years between 13-18 living in labour camps (including Auschwitz). Both his parents were killed, but he and his sister survived. I am currently reading his biography “Love & Hate” by Bill Halamandaris, which is a frank and fascinating read. This man has seen darkness that I can’t even fathom in his lifetime. The actual resort was granted stand-alone non-profit status in 1989. To date, more than 161,000 families have visited Give Kids the World Village from all 50 states and 76 countries around the world. Each week, more than 1800 volunteers donate their time and talents to the village. This resort can be seen as a beacon of hope and light for families all across the world.

It was nice to take our time getting up this morning. There was no rush, so we let the kids sleep in a bit. The important agenda item for the day (one I had been hearing about for the last month or so) was to eat ice-cream for breakfast.

Once everyone was up and organized, we sauntered down to the ice cream parlour, past Elmer the snoring tree, where we were warmly greeted by two volunteers who urged us to get whatever we want and to come as many times as we wanted. Jesse and I led the show by ordering banana splits (our kids are shockingly inexperienced in the banana split department). The kids followed with their favourites…Hannah focusing on a cookie dough creation with Ben maintaining his respect for the institution of Mint Chocolate Chip. He was then talked/coaxed into broadening his horizons with hot fudge, whip cream, cookie, crumbles, and as many cherries as his heart desired, which turned out to be about five.

We thoroughly enjoyed our indulgent breakfast and decided to play a Village scavenger hunt game that we could access through our phones. It would take us all through the resort, which was a great place to start our exploring. Our first clue took us to the House of Hearts. This was where our bus took us to when we first came in at midnight and were warmly greeted. This was also the place where my orientation took place on our first official day. This is basically the hub of the resort (think concierge). When we were there, a different volunteer was there for an organization called Songs of Love, but that might totally be wrong. Anyways, they asked me a whole bunch of questions about Ben and they said they write up songs for these kiddos and will later mail us a CD. It seems pretty awesome and special; although based on the personality questions I answered for Benjamin, I’m pretty sure that his song will involve Mint-Chocolate Chip ice cream and the gentle sounds of farting, but we’ll see. It was a very special idea, so we will be curious to hear it!

From the House of Hearts, we ventured to Amberville, a wonderful inside games and activity room. Before we even got in the doors, there were about four of those mall type rides outside…you know…bouncy cars, small helicopters…that sort. The kids checked them out…no cash required. Once we got in the doors, we were overwhelmed by the gigantic multi indoor train station. It had tonnes of little buttons that kiddos could touch and investigate. It was a massive conglomeration of trains and cars within a miniaturized city. One button would record your face and put it up on the drive-in movie theatre screen. It was all very magical and amazing. It was cause and effect to the next level. You press one button and a train (that you hadn’t noticed) starts overhead. The next button causes a train whistle. The next one causes the railway crossing lights to flash. It was way too much fun. Also in the room, there was a mail box with Letters to God written on it – a reminder that some of these have some rough times ahead of them. There was also a mini bowling alley and a video game room. And then there was ….Ben’s favourite part of the resort. The remote control boats. There were six of them in all and we each had a captain’s wheel to steer. We would race against each other (and more importantly) crash into each other. Ben LOVED this spot! We could barely pry him away the entire trip. After he had sort of had his fill (and I worked on my Ms. Pacman skills) we continued our scavenger hunt through the back door to the real life train station. Of course two volunteers were there waiting for a kiddo to come along. We went on a train ride through part of the resort. I think the kids thought they were driving. After we got off the train, we went for a ride called Lori’s magical ride…a fully adapted amusement park ride that we could ride and spin our bicycle wheels to go higher (wheelchair kiddos could also ride it and use hand controls to go higher). We had a blast. Again…no line ups and volunteers to help us. We continued on and found Mayor Clayton’s house – a small completely air conditioned house in the middle of a garden. Mayor Clayton (a 6 foot tall rabbit) is the head of things at the Village. He is married to Ms. Merry (also a rabbit). The kids enjoyed checking out the house. Our scavenger hunt then took us to the Rockin’ Spa – a place for the kids to spa out. Jesse and I went to a room in the back to sit in massage chairs while the kids did their spa stuff. Ben got an airbrush tattoo and a funky green sparkle hairdo. Hannah also got a tattoo and some sparkles in her hair!

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After we left there, we quickly went over to the Town Hall for our scavenger hunt, and after headed over to the Castle of Miracles. Every wish child receives a special gold star that will have a home at Give Kids The World Village forever! Ben was supposed to bring his star to the Cast of Miracles to get it placed. He and Hannah also had Magic Pillow Certificates that they would get there as well. Ben decorated his star and there was a big interactive/magical way of putting it in a chest. Stellar (the Star Fairy) appeared digitally on the monitors then magically pulled it out of the chest (with a lot of clunking and carrying on) and told Benjamin she would place his Wish Star somewhere in the Castle of Miracles while he was sleeping tonight. Her helpers would help him find it the next day.

We also wondered why his face only had one eye.

Ben puts his wish in the chest then Stellar the Wish Fairy shows up on these three monitors to talk to him.

A room filled with wishes!

I think there are currently over 120,000 stars in the Castle of Miracles. Words cannot even begin to describe the beauty of this place. It was a breathtaking moment – thinking about the complexity of all the little kiddos stars who had come before us – and one we didn’t take lightly. Afterwards the kids then had their pillows magically made and this was where our scavenger hunt actually ended.

After that, we went to the Town Hall to have a bite to eat. While we were eating, I had a long conversation with one of the delivery guys for the restaurant about his daughter’s hearing loss that made me really appreciate our Canadian healthcare system (which I find quite frustrating at times). From what he was telling me, his daughter needed a different type of hearing aid than she currently has, but he and his wife couldn’t afford it. Although there are ample charities in the US providing funding for these types of needs, there is such a demand for these charities that there is often a limit of only using charity funds once. I couldn’t imagine how frustrating it would be to not be able to allow your children to access something as important as hearing. Anyways, it made me grateful that Benjamin absolutely has state of the art hearing equipment for school for every aspect of his life. Not only does he have two different types of hearing aids, (Behind the ear and bone-anchored), he also has access to a streamer, an FM system, and a microphone for classroom use. Ben has pretty complex hearing loss, but all of our audiologists (at three different institutions) work together to make sure Ben has the best access to sound. We pay very little for these services. Sometimes it takes walking away to remind you what to be grateful for!

On our way out the door we discovered something we had missed earlier…a pickle bar! How fun is that!

After we got pickled, we went to the Park of Dreams swimming pool. There is a peaceful tranquility to this resort. It is an oasis from the hectic rushing that we experienced in the parks. It never feels crowded. We played and splashed the afternoon away.

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After a long afternoon splashing around the pool, Jesse and Ben went to play remote control boats again while Hannah and I ran into town to get a few things. We met up again, got dressed, and went back to Town Hall for supper. There was a magician there who taught (and inspired) the kids with all sorts of neat magic tricks. After, we grabbed our food and sat down at the table. There was a singer there interacting with all the kids and doing song requests. It was quite the party to be honest! And then all kinds of characters came in to meet and greet with the guests.

After dinner, we went fishing. This was one of the things that Ben was most looking forward to doing at the Village. We laughed because we really were fish-feeding rather than fishing, but the fish really seemed to appreciate our contributions to their dinner.

Afterwards, we went back to our room and get our pajamas on. We then went to the movie theatre to watch a movie before bed. Because we were the first (only) ones there, we chose the movie Maleficent – a favourite of ours. Of course there was a no-charge concession, and the kids were encouraged to get whatever they wanted. They had popcorn, drinks, and these tubes of self-serve test tube candies. Other families came and went during the movie, but we watched and enjoyed the whole show. This was a well needed day of discovery and rest. After the movie we went back to our villa.

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The gift fairy had been there and dropped off some stuffies of Mayor Clayton and Mrs. Merry. What an amazing day!

Wish Trip Day Two – Disney Hollywood Studios

August 26, 2018 Crooked Journey3 Comments

We woke up on day two to Jesse telling us about his fantastic turkey leg dream…sigh… He said thinking about it the next day was just as good, if not better, than the actual experience itself. The House of Hearts called us first thing to see how everything was going and asked if we needed anything at all to make our stay more comfortable. We said we were doing just awesome and didn’t need anything. They also told us that there were some Disney character’s here doing a meet and greet with the kiddos. We decided to stop by before leaving for Disney Hollywood Studios. The Disney characters were first rate. Belle was there, as were Mickey and Pluto. The kids got their pictures taken and spent a bit of time with the characters. I was totally infatuated with Belle who was amazingly authentic and charming. It was all quite lovely and special.

We ended up running out of there to catch our bus. We plopped onto the bus and waited…and waited…and waited. I think the bus driver couldn’t get his wheelchair ramp to close or something. Finally, after about an hour I went out and asked what was going on. I was wondering if maybe we should call a cab or something. “Oh”, he said – looking surprised to see me, “I don’t know…I’ll call to see if a replacement bus is coming”…anyways…to make a long story short a replacement bus was called, but I had lost faith in our transportation system at this point (I had spent a long time on hold the day before to reschedule our pickup, which was a bit frustrating). I called a LYFT…a cab service used in Florida to take us to the park. We ended up enjoying our LYFT to the Hollywood Studios so much that we permanently fired the bus after that day. It was only about $20 US to get to the parks…better than sitting on a bus and being late all the time I think.

Anyways, we got to Hollywood Studios just before noon. We still hadn’t eaten breakfast because we had chosen to go see the Disney characters instead. More importantly I hadn’t had my coffee yet. Jesse and I were a bit off that morning….he was barking orders and I was yipping back. We were both hungry, caffeine deprived, and a bit frustrated. Anyways, we walked down the main street at Hollywood Studios and suddenly all the music changed. Oh my God….a bunch of Storm Troopers were walking down the street and it was so exciting! Holy Crap! Darth Vader was with them!!!!! (side note: I find Darth Vader a totally awesome villain….I think that new young, wimpy looking Darth Kylo Ren – who killed Harrison Ford…sob… – just a spoiled villain kid with daddy issues.) Anyways, there was a big announcement in the streets basically saying ‘get to the sides you lazy, damn civilians – Vader is coming through’! We totally stepped to the side and watched. It was so military and impressive. And then….they walked directly in front of us and stopped….OMG!!! AND CAME OVER TO US…OMGGGGG! Darth (we’re on a first name basis now) walked up to the kids and said something like ‘you’d better not be sharing secrets with the resistance’. And they were like all….no way! Then he walked up to Jesse and told him the same thing….Jesse also denied the possibility of such traitorship. (I was going to point out that Jesse would definitely trade a secret with anybody if there was a smoked turkey leg involved, but I kept my mouth shut this one time, which shows that I probably wouldn’t share secrets with the resistance because I have a tremendous amount of inner strength…) Anyways, after that bit of excitement, we were all quite excited! Finally though….hunger and caffeine deprivation set in and Jesse and I started yapping at each other again. I wanted to go across the street and grab a coffee…then it was a thing…then he wanted a giant hot dog for breakfast….then I was all “I don’t want a damn giant hot dog for breakfast”…then we did something that solved neither one of our problems. We went to the Frozen Sing-along show….yeah I know…poor timing. I know what you’re thinking….”Let it Go”, but it was hard. There was a Dark Force getting on my nerves and I was putting up a great deal of resistance. At this point I should mention that I, like so many moms, am a bit of a Super Hero at time – especially on vacations. I make amazing things happen on a daily basis. However, like many superheroes, I require a necessity. Ironman has his suit, Thor has his hammer, Captain America has his shield, Hawkeye has his bow, Wonder Woman has her little bracelet things and whip….and I have my caffeine (wine after 4:00 p.m.) Nobody should be expected to superhero their way through a busy theme park on a scorching hot day after sitting on a bus for over an hour WITHOUT CAFFEINE! Right! (Jesse says this analogy is insane and I should use one about a crack addict on the streets…bah!!!) Anyways, we gritted our teeth through the Frozen Sing-a-long and left looking for caffeine/lunch. I first went to sign the kids up for Jedi training camp later in the day (don’t tell Darth). Then Jesse was super hangry, so we just went to the stupid 18” hot dog stand or whatever it was. (I should note here that I LOVE small, pretty food….Jesse on the other hand is a volume eater…and he has the palate of a goat. I put the hot dogs on the table and went to find a Starbucks. Things did get better after that. We regrouped and all went on the Star Tours 3D ride, which was super awesome – even moreso because the Disney cast member who let us in was so kind and fun. They (once again) treated us like Royalty and told us to come back as many times as we wanted. After that we walked around for a bit then went to see the Indiana Jones stunt show, which was super-duper awesome and exciting. After Indiana, we took the kiddos to the new Toyland. The kids and Jesse went on the Slinky Dog roller coaster and then we went on a fun, little Alien ride followed by Toy Story Mania.

I stopped at one point to ask someone about the fireworks shows. I knew there was a Fantasmic show and a Star Wars show, but I didn’t know if they were at the same time or same place. Anyways, the lovely lady I spoke to told me they were in two separate places and she explained what to expect. She then told me to hold on for a moment. She spoke with her supervisor and told me she would put our family on the VIP list for tonight’s Star Wars show. I got the details from her and thanked her profusely for her kindness. We then went to the Tower of Terror. This was another ride that had a back warning on it, so Ben and I went shopping for a bit. One of my friends had given him $20 to spend, so I told him he could spend that. He ended up finding a Millenium Falcon that cost a bit more that the $20, so I chipped in a little. He was beyond excited, and I felt happy treating him because he never complained once when he wasn’t allowed on rides.

After we all met up again, we had to drop the kids off for Jedi training, which was pretty spectacular. The kids all suited up in their little Jedi Costumes and were taught the basics for fighting bad guys…and then THEY HAD TO FIGHT A BAD GUY! Darth Vader showed up and ended up kicking their trainers butt, which was a bit intimidating, but he left and then Kylo Ren showed up. Each Jedi trainee had to fight him, and they had some pretty impressive moves for the under 12 crowd. It was going ok, but he was pretty strong, and to be honest despite their moves, those little Jedis were losing big time. However, they then remembered that they could use ‘the force’, so things improved tremendously for them (not for Kylo). They each had a little battle with him and did some pretty impressive moves for an under 12 crowd. It was the force/light saber group combo that got him in the end. The kids had a great time, and I was glad we did it. We ran back to the other side and Jesse and Hannah went on the Aerosmith Rock’n’Roller Coaster while Ben and I hung out and chatted with strangers.

When we all met up again, we decided to go the Brown Derby (modeled after a famous Hollywood Restaurant) for dinner. We had some good food and wine. I had the Cobb Salad, which they are famous for because I was starting to feel scurvy coming on after a fairly produce free couple of days. All was right with the world again. During dinner we all made an executive decision to stay at the resort the next day. We knew that by deciding this, we would be sacrificing something down the road (probably Seaworld), but we felt that we needed a down day to just chill out a bit and check out our resort. After a great dinner, we went to our amazing seats for the Star Wars show, which was breathtakingly Disney….amazing! It was a rough start, but turned into an amazing day. Once again the kids got to bed around midnight!

Star Wars Galactic Spectacular stock photo

Wish Trip Day One

August 25, 2018August 26, 2018 Crooked Journey3 Comments

We had a hard time waking the kids the next morning…they were (understandably) a little groggy. I had to attend an orientation meeting at 9:00, which I did. I discovered there that they had booked us on a bus to the Magic Kingdom at 10:15 a.m. I texted Jesse (while in my meeting) to have the kids ready as soon as I was done so we could head out on the bus. Because we had slept in so much, we didn’t really have time to grab breakfast, so we headed onto the bus and got on our way. When they booked the resort for us, Rainbow Society asked us whether we would prefer the bus or a rental car. We decided a bus would work fine for us – it would save us trying to familiarize ourselves with the roads and worrying about where to park. The bus was late getting out, so we didn’t get to Magic Kingdom until about noon. We had been given 3 days worth of Disney tickets, a Disney Genie pass (basically front-of-the-line for all rides), and free stroller rentals.

I had my bag with me, which Jesse rolled his eyes at because he said I had too much stuff. I told him I needed everything I had. Here’s what was in my bag: hand sanitizer, wet wipes, sun glasses, ziplock bags (two different sizes), 4 rain jackets, small umbrella, luggage handle, phone charger, bandaids, lip balm (with spf), Ben’s FM/streamer for his hearing aids, 2 bottles of water, Epi-pen, inhaler, pen, sunglasses, eye glasses, lanyards, lens wipes, and a giant Carabiner (one of my most useful items). I had bought four little rain jackets back home that fit into these tiny little pouches. I was able to hang the rain jackets and the umbrella off the stroller handle for quick, easy access when the rain hit. It also allowed me to balance the weight of the stroller a bit as the front is quite light, so our bag would tip it if it became too heavy. The only thing I didn’t really need were the bandaids (we ended up using some liquid bandaids in the morning for Jesse’s potential blister problem), the luggage handle (I was going to use it to identify the stroller, but they gave us a sign with our name on it) and the lanyards (they gave me one). I also didn’t bring the glow sticks (which I wanted to be able to hang around the handle of my stroller at night so I could find it easily, but my sister told me I was a frightening person, so I ditched them). Note on strollers: yeah….big kids use them there…Ben looks about 5, so he was well within stroller norms at Disney (he’s actually 7…almost 8… but only 44 inches tall. There were lots of older kids using strollers there. (I also had on my fanny pack and I LOVED IT!!! – don’t judge the fanny pack people…it is here to help!)

When you arrive at the Magic Kingdom, you can either enter it by ferry or by tram. We chose the ferry. I stopped on the way in for an iced coffee (caffeine) and we got the kids a drink and we all shared a doughnut. We hadn’t really eaten yet, but we thought we could find something more interesting to eat in the park. At one point in the short ferry ride, you get a beautiful view of the castle, which is just magical and breathtaking. People on the boat applauded once it came into view.

We had left the Village around 10:40 (the bus was late), but by the time we actually cleared security, took the ferry, and were in the doors at Disney, it was easily 12:15…a little later than we intended to start. We were all a bit hot in their overwhelming humidity, and the kids were a touch cranky. We got our stroller rentals (free….thank you Disney) and set off. I discovered that I had forgotten Ben’s FM system, which irritated me, but we did ok for the day without it. We first went to the Swiss Family Robinson Tree House. It was super interesting, and we like to watch the t.v. show at home, so the kids were familiar with the story. The kids were still a bit sluggish, so Jesse and I decided we needed to pick something a bit more fun to get them settled. They had no idea what magic was really in store for them today. We decided to go to the Enchanted Tiki Room, which was funny, cool and interesting…the kids loved it. After that, we snuck out to Aladdin’s Carpet Ride and Ben loved it….mostly because I acted super scared when we went high (technically I was a little scared – heights are not my thing – but I knew I could survive a malfunction). He laughed (evilly) as our carpet flew higher and higher. After, we decided to have some Dole Whip (whipped pineapple ice creamy stuff) after that (breakfast of champions…I know), and the kids loved it. Hannah had the Pineapple Upside Down Dole Whip (yummm…) and Ben had the Dole Whip Parfait (also yummm…..). We went to wash up afterwards, and decided to go on the Pirates of the Caribbean ride….awesome! The kids were now fully invested in the Disney experience. We wrapped up our Adventureland activities with the Jungle Cruise ride, which was silly and fun.

Afterwards, we moved on to Frontierland. I should tell you now that we contacted our pediatrician and our surgeon before we left regarding Benjamin and what rides would be safe for him. We decided to use our discretion, but chose to stay away from rides with a back/neck warning on them. There were three rides in Magic Kingdom with this warning that I could tell: Splash Mountain, Space Mountain, and Big Thunder Mountain. We had discussed with Benjamin beforehand that there were some things that Hannah could go on, that he couldn’t. He’s a reasonable kid, so that was just the way it was. Hannah and Jesse went on Splash Mountain while Ben and I waited. We bought Ben one of those Disney Mist sprayers, and that kept him busy the whole time they were gone. When they returned, we decided that Ben and I would go to Tom Sawyer Island while they went to Big Thunder Mountain. There was a storm brewing, so Tom Sawyer’s hut was closed. Ben and I just walked around then watched some of the parade going down the street. Jesse and Hannah were done and were on the ferry to come to Tom Sawyer island, but I said not to bother as we were heading back. I was worried about getting stuck there in a storm. Jesse’s opinion was that Splash Mountain might be ok for Ben, but Big Thunder Mountain definitely wasn’t. We put that into the back of our minds. Once we were all together it started raining. Rain here isn’t timid, sprinkly rain….it’s full-on fire hose rain. We quickly put on our rain gear and ran to the Haunted House. There was a lot of lightning happening outside, so it was a good time to get in. Sometimes I worry that Ben has a lot of metal in his body, so lightning makes me nervous! (FYI Florida has more lightning strikes/casualties than any other place in North America – I’m not being paranoid….I’m being logical. The kid’s a walking lightning rod!) The Haunted House was so fun – it was not a scary ride, but our kids don’t scare easily anyways. After we got out, we started searching for a Turkey Leg for Jesse. We had gone to Disneyland 6 years ago (the kids were too little to remember) and Jesse had seen someone eating a turkey leg. He was never able to find out where the guy got it. Anyways, he had been thinking about it (obsessed) ever since. I had an idea where to get one (research), so we looked around and found the place. I got through the line up to discover that they were sold out, but getting some more within half an hour. Jesse was a bit mopey, so we tootled around a bit and I went back to see. Lo and behold – the turkey legs had arrived! Jesse ate his turkey leg with a hunger and tenderness I have never been privy to. I believe they may have sold more turkey legs that hour than ever in history – Jesse was a walking advertisement for blissful carnivorous snacks. (Note: the turkey leg tasted strangely like ham).

We left there and wandered back to Main Street. Our Genie Pass gave us access to a small Wish Lounge. This was a quiet room with couches and a tv for families to rest up a bit. They told us we could watch whatever movie the kids wanted. We said we wouldn’t be long – we just wanted to freshen up and dry off a bit.

IMG_1564 - Copy — Ben and Hannah in the Wish Lounge

After we dried off a bit, we headed to Fantasyland, which was amazing. We went on the Peter Pan’s Flight then over to It’s a Small World (which Jesse said was creepy). After that we headed to a ride that had no back/neck warning on it, which surprised me. The Seven Dwarfs Mine Train was instantly Ben’s favourite ride of our whole trip! It was a somewhat interesting/fastish roller coaster ride which went in and out of the mine…he LOVED it! Afterwards, we went on Dumbo, where the kids rode together and Jesse and I shared an elephant behind them. We went to go to Barn Stormer, but there was a lot of lightning going on, so it shut done. We decided to move indoors to Buzz Light Year Space Ranger Spin, which was a super fun video game/ride. The kids loved it! (Side note: I won for accuracy…yep!) We then split up because Hannah wanted to go on Space Mountain. I went with Hannah while Jesse and Ben went on America’s Carousel of Progress….a ride/play about changes in technology in the 20th century. Meanwhile I was having a heart attack on Space Mountain battling my overriding trust issues with heights/roller coasters, etc. Hannah said it was awesome. I decided that this was not a ride Benjamin should go on. I hurt my hands gripping the bar too tightly. We all met up again to go to the Speedway Racing where both kids got a chance to drive a car. Jesse went with Ben and I took Hannah. I had previously thought I might get whiplash from Space Mountain, but that was nothing compared to being a passenger in Hannah’s vehicle. (note to self: hire someone to teach Hannah to drive in a car that we don’t own).

After all of this busyness, we decided to head over to our next splurge. We had bought tickets to the Dessert Party, which would then allow us to view the evenings fireworks in a less crowded, seated area. We were worried how it was going to be with Ben for the fireworks as he still has difficulty looking up. We didn’t really know what to expect. Anyways, we were so happy to sit down and rest. The treats were amazing!!! They had chocolate dipped strawberries, homemade s’mores, tonnes of little cakes and such, cheese, crackers, cookies, etc. They served non-alcoholic champagne, which the kids guzzled…it was a beautiful ending to our night.

And afterwards, the fireworks show! It was absolutely magical and made you believe in all things good. It pulled you into this world of beauty and imagination and made our spirits soar. It reminded us of all the beauty and magic we have seen in our lives over the past few years. At the end of the show Tinkerbell flew from the top of the castle right over our heads…amazing!

MK_MK_20170716_8079044734 — Imagine a fireworks show that makes you believe anything is possible! (Disney Stock Photo)

After that we left the park, caught our bus and headed home. Benjamin was asleep before the bus left the park. We arrived back at the Village around 11:00 with two exhausted kids. We noticed that the gift fairy had left us a version of Give Kids the World Candyland Edition. The whole resort is modeled after Candyland. The kids were excited, but also exhausted. They immediately went to bed and fell fast asleep.

Wish Trip Travel Day

August 24, 2018August 24, 2018 Crooked Journey8 Comments

Off we go! (and yes…we made Ben push the biggest suitcase)

First of all, I should let you know that we are actually home from our trip now, but as you will see by reading the blog, we were a bit too busy to give me time to blog when we were away. *Warning….these posts could get a little long!!!*

Last night, Jesse and I treated the family to a sleep-over at the hotel at our local airport. We did this for three reasons. Firstly, I am a chronic over-packer. If you leave me with too much time on my hands, I’ll just keep packing, and packing, and packing! Because we had such a busy week before we left, I knew I wouldn’t have too much time to pack on Friday, so forcing me to get out of the house early was one way to ensure we minimized our packing a bit.

The second reason we decided to book a hotel was simply that it was an opportunity to start vacation mode a half day early. We had been freakishly busy with doctor’s appointments and such in July, so we were ready to have some fun! This gave us an opportunity to take the kids for a nice swim the day before and enjoy a hotel right in our own city (the hotel was gorgeous by the way – with tonnes of interesting nooks and spaces to explore).

Finally, we had to be at the airport by about 5:15 a.m., and I was worried that I would be the first person on the planet to miss their Wish Trip because they slept in! So, we minimized the possibility of that with two wake up phone calls, and a quick walk next door without even having to go outside. How awesome is that!!!

We managed to get through security and customs fairly quickly on the morning of our trip. I laughed to myself as I watched Jesse have to take his sandals off and walk through security barefoot. He’s got some weird phobias about getting diseases in airports. I had encouraged him to wear sandals on the plane despite his protests about getting strange feet diseases. I totally forgot he would have to take his shoes off at the airport! Toe STD’s…here we come! He trudged through security with a look of disgust on his face.

We still had quite some time to wait at the gate. We were all feeling quite sleepy (Jesse and I hadn’t slept well), so nobody really felt up to breakfast yet. The kids and Jesse had a booster juice, and I had a coffee from Starbucks. Finally, it was time to board the plane. When we got on the flight, the Delta flight attendants were aware (based on a letter from Rainbow Society) that this was Benjamin’s Wish Trip. They were incredibly kind to us. The captain called both kids up to the cockpit (it was awesome that they called Hannah up too…she is often the ‘invisible child), and showed them around. He asked Ben if he wanted to make an announcement over the mic and Ben was definitely not interested in doing that. The kids each got pilot’s wings and scurried happily back to their seats. The captain made an announcement on the plane thanking Hannah and Ben, his pre-flight check crew, for all their help and wished them a happy special holiday. The passengers (who I don’t really think knew what was going on) applauded, which I thought was pretty awesome too! Thanks Delta!!!

We landed in Minneapolis, but it was a quick turn-around by the time we went to the bathroom, found our gate, and got settled. We were hungry by this time and wanted to order food, but didn’t think we had enough time before boarding our next plane. So off we went up in the air. The three hour flight seemed to tick by slowly, but then when we were just about there the captain came over the speakers and told us there was a thunderstorm over the airport, so we had to fly around in circles for a while until it moved on and it was safe for us to land. By this time, it was about 4:30 p.m. in Florida. We flew in circles for about an hour or so, then the captain said we had to fly over to Tampa as we were running low on fuel. We landed in Tampa, and there was still no sign of the thunderstorm in Orlando moving on. They finally allowed us off the plane for about an hour in Tampa to stretch our legs. I called Give Kids the World office from Tampa to let them know what was going on. All the passengers arrived back to the plane on time, so we were able to take off again fairly promptly to attempt to land once again in Orlando. Yay! The captain told us it was only about a half hour flying time, so we were eager to set off. And it was only about a half an hour, but, I guess with the storm we weren’t the only ones to be converging on the airport at once. We waited our turn to land, then sat on the tarmac for about an hour and a half waiting for our turn to get to a gate. We got off the plane about 10:30 p.m. or so.

We found our way through the terminal and took a tram to the main terminal. Once there we were greeted by a volunteer Eric who was an amazing person and volunteer from Give Kids the World. He was the first of the many outstandingly kind and generous people we would meet this week. He was holding up a banner with Benjamin’s name on it. He welcomed us warmly and handed the kids a bag of waters, treats, and crackers to keep them busy while he helped Jesse and I find our luggage. Once we had our luggage, he escorted us to the bus counter and arranged all our transportation to get to the Give Kids the World Village. He had also called ahead to the village to make sure someone had saved some supper for us. He was just what we needed. We enjoyed chatting with him and learned he was an accountant and CFO of a large real estate corporation. We couldn’t thank him enough. He told us that GKTW greets about 20-25 families per day at the airport (we were the last to arrive that day). He said he had never seen the airport this busy, and he had helped almost 200 families get settled in there since he had begun volunteering. He warned us that if we were doing anything “that looks like work this week”, to “stop it…we will do it for you”. He waited with us until we were all settled on the bus. We said our goodbyes and headed on our way. The bus ride to the Village was about an hour or so.

Once on the bus, Ben immediately fell asleep. Hannah, Jesse, and I enjoyed looking at the sights around us. We were super interested in anything that looked Disney. We arrived at Give Kids the World in Kissimmee around midnight…we were pretty exhausted to say the least. Penelope from GKTW met us on our bus and said “Welcome! We are so happy you are here! She asked the bus driver to take us to our villa, and she followed in a golf cart. She led us into a beautiful looking little house. We were surprised at how hot it was outside still…26 celcius. She told the kids the gift fairy had come and left some gifts for them. She also told them (much to their interest) that the gift fairy comes every day at the village. She also handed us a bag with a great big dinner for us: chicken, mashed potatoes, macaroni, green beans, you name it. She taught us a bit about the resort and told me to go to orientation the next day. She then went on her way so we could get to bed. We ate some supper and took a few minutes to look around our place. The biggest bedroom and master bathroom were for the kids – it was abundantly clear that they were the most important people here. We barely got the kids dressed for bed before they fell asleep. It was about 1:00 a.m. Here at last!