Grateful for the Catastrophic

Two years ago, we were in the hospital as Evie struggled with an intussusception (where the bowel telescopes inside itself and gets stuck). It was a hellish time full of fear and frustration and trauma that led to months of progressively worse issues.

And I’m grateful for it.IMG_20140717_095700969

Not in the happy way, but in the “it all worked out in the end even though it was horrible” way.

Because the bowel defect was already there causing problems. It limited the amount of food she could take in, it kept her malnourished by not letting her body absorb nutrients properly, and it messed with her heart rhythm. Eventually those problems would have required more extreme intervention. And all of our solutions would have been worthless. No one ever suspected a bowel defect was the real source of all of those problems.

But then it turned catastrophic. It demanded it be found. It demanded it be fixed.

And fortunately, we found it and we fixed it.

But we wouldn’t have if it hadn’t tried to take her life. We would have continued on, managing issues that were becoming increasingly unmanageable. We would have watched Evie stay small and prayed that the heart issues wouldn’t worsen.

But that didn’t happen. Not because it got better, but because it got significantly worse.

Same with her breathing. If she would have kept crawling along with getting each breath, we likely wouldn’t have trached. We would have thought she was doing so well and managed in other ways. But we didn’t. Her breathing issues turned catastrophic and a trach became an absolute necessity.

So we got to see just how great she really could do. How beautiful her eyes are when they’re not filled with fear that the next breath won’t come.

And catastrophic is what landed us at Cincinnati Children’s Hospital. If the scarring in her airway had only been slight, hadn’t required the best doctors in the world, we never would have traveled 10 hours away for her care. But she did and we went and it made all the difference in the world for her.

But we’ve always come out on the other side of each catastrophe. We’ve been able to do what needed to be done IN TIME. And that’s my continued prayer. That each catastrophe will give us enough time. Evie’s bowel defect gave us nearly 10 months of going from bad to worse. It threatened her life slowly enough for us to test and test and test and finally do surgery to find and fix it.

We’re still recovering, though. Even though we made it through and even though Evie is doing amazingly well, those two things don’t negate the horrors we witnessed or the 10 months of feeling helpless to save our child. That level of stress for so long is simply not something you can just bounce back from. Having her still here doesn’t erase the late night conversations discussing the perceived inevitability of losing our little girl. It doesn’t erase having to spend 10 months shutting down our emotions and distancing ourselves from our own child because we knew if we broke down, we couldn’t do what needed to be done to save her. It doesn’t erase the fact that we bought a puppy in the middle of it because we wanted our older daughter to have that comfort if she lost her sister. It doesn’t take away the flashbacks or the panic attacks or the deep realization that we could have lost her so easily. That we still could lose her. That we’ll never be safe.

We’re grateful for those catastrophes, we are, but it’ll take some time for us to process it all, to breathe again. We were all deeply wounded and only now are we started to peel back the hastily placed bandages to assess the damage and figure out how to heal. We’ll get there.

And that all sounds so doom and gloom and we’re NOT feeling that way. We’re thoroughly enjoying this new phase of getting out together as a family and doing so many normal things. I think that will go a long way towards healing and potentially preparing for the next catastrophe.

Hopefully it’s a slow brewing one again.



Evie’s Wish Trip: Universal Studios Part Two

Yep, I dropped the ball on finishing up Evie’s Wish Trip posts.  That’s life. But anyway, we headed back to Universal Studios and Islands of Adventure on Friday, our last day at the parks. The parks were definitely crazier than on Wednesday because the Harry Potter Celebration was going on. The crowds made for VERY interesting people watching, though. People had some extremely elaborate costumes! I wish I had taken more pictures of THAT!

We hit up the Dr. Seuss stuff first since we didn’t go there on Wednesday. We started with The Cat in the Hat ride, but it was in the dark and jerked around and Evie didn’t like it. But she spotted the carousel afterwards and rode that a bunch of times. She also enjoyed the High in the Sky Trolley Ride and meeting the Dr. Seuss characters.

Universal Studios8We headed up towards the Harry Potter stuff to see what was going on, but grabbed some kabobs first which were VERY tasty.  The crowds definitely thickened as we got up there and I was very grateful for our special access to skip the long lines. We wanted to eat over at the Leaky Cauldron for lunch, though, so we took the Hogwarts Express over to Diagon Alley. The restaurant wasn’t too crowded yet and the food was very good.  Ty and I each took turns taking Aleyna on the Gringott’s ride again and she enjoyed it a lot more this time.  We walked down through Universal Studios and Ty and Aleyna tried out the Despicable Me ride to see if it was something Evie would like. The both agreed she wouldn’t like it so we moved on.

Universal Studios9At this point, we started wondering where on earth we could find Dora the Explorer and friends. We’d seen her in the parade on Wednesday, but nowhere else. Suddenly we heard music and saw her float out in the street doing a little performance! Evie was SO excited! One of the staff members saw us watching and when the little show was done, grabbed us and put us right at the front of the lines to get pictures with all the characters. It was so amazing for Evie. Dora signed ‘I love you’ which got big smiles from Evie and then she pointed out that SHE had a backpack just like Evie! Pretty special.

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These were the special moments with characters that made this trip so wonderful. They were all just wonderful. Universal Studios11Evie and Aleyna also got some special attention from the lovely ladies dressed as flowers and they were so incredibly sweet.

Universal Studios12Next we swung over to the Woody Woodpecker ride that Evie liked so much on Wednesday. Oh my. She loved it!

I posted this video before, but it’s just so fun to watch! We wandered back up to the Hogwarts Express to ride back to Islands of Adventure. And here’s where Ty and I officially earned our Parents of the Year Award. I give you Exhibits A-D:

Universal Studios14Yep. Aleyna was TERRIFIED (Evie was sitting in her stroller just out of frame, completely uninterested) and as you can see, I was the picture of motherly concern and sympathy. It was genuinely scary, though. He made scary sounds and lunged at her. I didn’t really want to get very close either!

After thoroughly traumatizing our daughter, we wandered down to the Marvel Comics area. We ran into these amazing guys on stilts right outside that area and they were just the best. They had us laughing so hard the whole time and both girls adored them!

Universal Studios13Evie then started asking for the ‘train’ again, though, so we then walked back over to Universal Studios to ride the Woody Woodpecker ride some more. I think we went on it 6 or 8 times just over and over with Evie giggling away.  Everyone was getting tired then so we caught the end of the parade and then headed back to Give Kids the World.

We got dinner and while we were eating, an entire group of ballerinas came over to the table to invite the girls to their show over in the castle. My two little dancers quickly finished eating so they could go to the show. Because of how scheduling at the village went and the fact that most families were still at the parks, the girls got a private show and plenty of attention afterwards.

GKTW Photos10The ballerinas eventually had to head home, so we popped over to the Princesses and Pirates Party and it was BY FAR the best party of the week. All of the volunteers completely committed to their various characters. The mermaids, princesses, pirates, and knights were just phenomenal.

The knights and pirates who froze when Aleyna would use her freezing powers on them.

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The mermaids who made fishy faces with the girls.

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The princesses who danced and twirled with Evie and made her feel so special.

GKTW Photos13

We laughed so hard and had so much fun. We also learned that we should watch out for Aleyna. Upon learning that the knights were after the pirates, she immediately sided with the pirates and helped them escape. She’s trouble, that one.

We partied quite a ways into the night, but then finally headed back to our villa where we ordered pizza and stayed up way too late until Evie crashed for the night. And then the rest of us crashed.

P1020081And that was our last day at the parks! I’ll try to do a quick little post about our last day there just hanging out at the Give Kids the World for the day. I love that place.

Evie’s Wish Trip: Hollywood Studios

Hollywood Studios was the one park where we felt we needed to get there as early as possible. Aleyna really wanted to do the Jedi Training they have for kids, but sign up is first come first serve. We headed to the line first thing and got her signed up and then went over for her to ride Star Tours. Evie was still waking up a bit, so she wasn’t keen on doing anything quite yet. From there we went to the Frozen show. Evie was a bit overwhelmed, but she peeked up at everyone. Unfortunately, they had some smoke effects and, being in the front row, we were suddenly surrounded by smoke. We took Evie off the side, but then THAT side had smoke when Elsa appeared, so we went back to the middle. And then everywhere had smoke for the big finale, so I just rushed her out. I have no idea if it was dangerous for her, but that’s not something I want to risk. On the way out, I ran into someone who works in Safety and shared my concerns. He assured me they would pass that on. That’s what I love about Disney. They just want to do everything possible to make it a great experience for everyone.  After that, we walked over to Muppets 3D. Evie was NOT a fan even though she generally likes the Muppets, so I ducked out a bit early from that with her.

Hollywood Studios5Since The Muppets wasn’t exactly a hit, we wanted to do something that we knew Evie would love. Buzz and Woody for the win! Oh man, this girl has the best expressions EVER.

Hollywood Studios1Aleyna was supposed to have the Jedi training next, but because of the rain, it was canceled. She did get a personal meet and greet with Darth Vader, though, which was exciting for her!  I’m so proud we’ve passed on our love of Star Wars to her.

Hollywood Studios6Evie and I walked over to the Disney Junior show and waited for Ty and Aleyna to catch up with us again. One of the Cast Members spotted us and pulled us over to meet Doc McStuffins before the show, though! How neat! Both girls LOVE watching her show, especially since it’s doctor stuff that they’re so familiar with. We went into the show next and Evie LOVED this one. This one of the few that I had her watch on YouTube before going and with how well it went, I wish I had shown her EVERY show to prepare her. Afterwards we ran over to meet Sofia the First who is a favorite of both girls, too.

Hollywood Studios7We ran through the rain to Voyage of the Little Mermaid next which I have NO pictures of, but both girls enjoyed it. Since the Star Wars Launch Bay was right there, we popped in there to see if we could meet some characters. The line was a bit longer than we could handle with it being already WAY past lunch time, but the wonderful Cast Members again grabbed us and took us right to the front of the line. We got to meet both Chewbacca and Darth Vader. 1) I love tall people/wookies/sith lords and 2) I am such a nerd.  Darth Vader was so fun with his stern warnings that if we join the Empire and betray them, we would regret it.  Ty worked VERY hard to keep a straight face!

Hollywood Studios3Fun side story: Later in the week, we met a really neat volunteer at Give Kids the World and chatted with her for a while. We gave her a thank you card before we left and said goodbye. Later, we ran into her again and she said that her best friend has one of our cards, too! Her friend works with Darth Vader at Hollywood Studios! She showed us her Instagram post about it where she commented how much she loves her job and how much that simple thank you card meant to her. THAT is precisely WHY we did them. I was just so touched.

We went into the ABC Commissary to grab some food from there and then thought we’d let Aleyna hit some of the thrill rides. Ty and Aleyna went on Rock’n’Roller Coaster first and then she and I went. This was when I realized I can never trust Aleyna on anything. Ha! I asked her if the ride went upside down since I had my phone in my pocket. She said she wasn’t sure and couldn’t remember, but she didn’t think it did. LIAR! I spent the entire ride digging my elbow into my hip trying to keep my phone in my pocket as we went upside down repeatedly! When we got off, I asked her why she didn’t tell me! “Well, I wanted you to be surprised!!!!” Gaaaahhhhh!!!!

The rain really picked up at this point, so we ducked under an awning and chatted with one of the photographers who grabbed some pictures of the girls. It seemed like it was probably time to head out, but Aleyna REALLY wanted to ride Tower of Terror first, so I sent her and Ty off to do that. Amazing that she hated Haunted Mansion, but LOVED Tower of Terror! Fortunately, the rain let up a bit again and Evie wanted to jump in the puddles some more. She quickly discovered that the manholes held the most water and was quickly soaked, but loving it. I may have begged Aleyna to ride Rock’n’Roller Coaster again at that point, but this time WITHOUT my phone! So much more fun that time! The rain started up again, though, and we ended up running out to the van in a complete downpour. We were all soaked!

Hollywood Studios4Back at Give Kids the World, we grabbed dinner fairly early in the evening. Since there weren’t many other families there yet, we rounded up as many of the volunteers as we could and took some group photos with them. Such amazing people who give of their time so freely. The Christmas party was that night, too, so the girls FINALLY got to meet Santa! Since Christmas falls in the middle of sickness season, we’ve never risked a trip to meet Santa. It was amazing to get to do that at Give Kids the World. Both girls each got to choose a present as well, though Evie trying to manipulate her way into getting two gifts. Stinker. We got everyone showered and ready for bed and let Evie watch a show to calm down. Within a few minutes she was out cold. Sweet girl. She had such a great time meeting characters, seeing shows, and jumping in puddles.

GKTW Photos9Again, such a good day. We all just had so much fun both at Hollywood Studios and Give Kids the World!

Evie’s Wish Trip: Universal Studios Part One

To give Evie a break after two days at Disney parks, we used our first day of Universal Studios tickets on Wednesday. We also were expecting some nasty storms that day and decided that if we were just going to get caught sitting around somewhere, we might as well do it in a place serving butterbeer. Since our second day at Universal (Friday) would coincide with the Harry Potter Celebration, we also wanted to see all the Harry Potter stuff on Wednesday to avoid the crowds.

I tell ya what, Wednesday was the absolute PERFECT day to be at Universal Studios and Islands of Adventure.  There was NO ONE there. We couldn’t believe how empty it was. The fear of storms must have scared off most people, but it only drizzled most of the day. They took our picture when we first got there. I have no idea what Aleyna is doing.

Universal Studios15

So first up was the Jurassic Park ride in Islands of Adventure. This was Aleyna’s #1 priority here, so we wanted to hit it before the possible storms rolled in. She was NOT happy about getting wet, but absolutely loved the ride. That picture of them on the ride is one of my favorites. It’s absolutely hilarious.

Jurassic ParkNext we wandered over to Hogsmeade to grab some lunch at the Three Broomsticks. Fish and chips, butterbeer, and actual beer. I’m a Harry Potter fan and had just introduced Aleyna to the first book and movie so this was all pretty exciting for me, but Ty actually loved it, too, because it had the feeling of being at a great little pub. And butterbeer. Ohmygoodness. How is that so good?????

After eating, we went over to ride Harry Potter and the Forbidden Journey. Because we had the stroller, we had to go a different way to get up to the ride and it was pretty neat getting to see inside the Hogwarts castle. I’m a nerd. I know. Unfortunately, the ride was so much scarier than I’d anticipated. I thought I’d done my research to make sure it would be fine for Aleyna, but I spent most of the ride trying to cover her eyes and telling her it would be over soon. Poor thing. I wish I had gotten the picture from that, though. I’m sure it would have been pretty funny.

They did have a great little rollercoaster called Flight of the Hippogriff outside the castle, though, and Aleyna had so much fun riding that one. We thought it’d be way too fast and scary for Evie, but after seeing how she fell in love with the Woody Woodpecker rollercoaster, I’m wishing we’d given it a shot. She seems so fragile to us still and it’s hard to think about putting her on a wild roller coaster!

While both girls chilled for a bit, Ty went on the Dragon Challenge roller coaster and had a great time! The girls and I just wandered around and looked at the train they had for pictures and then we all caught the Hogwarts Express to ride over to Universal Studios. Evie was SO excited to get to ride on a train!

HogsmeadeOne of the gentlemen we’d struck up a conversation with in Hogsmeade suggested we get ice cream at Florean Fortescue’s over at in the Diagon Alley Harry Potter world over at Universal Studios. They have a wide selection of unusual flavors and since Evie LOVES ice cream, that was something we had to do.  After ice cream, I managed to convince Aleyna to go on the Escape from Gringotts ride.  She basically made me look like The World’s Worst Mother. This ride is significantly less scary than the Hogwarts ride, but she was in tears before we even got on. In the end, she DID enjoy it and was only really scared by one part. She rode it a few other times on Friday, so she wasn’t REALLY traumatized.

We left the Harry Potter world and walked over to the Men in Black ride for Ty and Aleyna to ride. By this point the drizzle had picked up, but this made Evie VERY happy. She insisted on getting out of the stroller to help push so she could jump in all the puddles. I had to chuckle as I watched all the people in their ponchos and carrying umbrellas, trying so hard not to get wet, but there was my medically fragile child jumping in puddles and having the time of her life. I loved getting to see her enjoy the world around her. And bonus: Evie’s hair gets really curly when it’s damp, so it kicked her cuteness up to the next level.

Curly Hair in the RainEvie seemed in the right mood and her energy was up, so we decided to try a few things for her next. First up was the Woody Woodpecker ride. It took a little convincing, but Evie finally agreed to do it. Once. She liked it, but then signed that she was ‘all done’ and that was that. We were excited she enjoyed it, though!

Woody Woodpecker 1Right next to this ride was the Barney show. Evie loves him. Why do kids love him? This was a partial hit. On the one hand, Evie was in total sensory overload. It’s dark, then there’s lights, it’s loud. It’s a lot going on. But she also LOVED getting to see Barney. She spent the entire show with her head on my lap, peeking out at what was going on.  It was very very exciting to meet the dinosaur himself, though.

BarneyFrom there we rushed over to the Animal Actors show. We really thought Evie would enjoy this, but she just couldn’t take anymore sensory wise. At this point, I should have pulled out a device for her and allowed her the time she needed to tune out the world and get herself calmed down, but in the moment, I just thought she was being naughty. She and I watched the show from the side, but then afterwards they let the girls have a personal meet and greet with one of the dogs. He was such a sweetheart and Evie liked petting and hugging him.

Animal ActorsAfter some more puddle jumping, we finally got the hint from Evie and handed over the iPad. It was just what she needed. I’m sure it looked like bad parenting, but for a kid that has led a life in fairly quiet environments (especially with the hearing loss), she was getting so overwhelmed. Once she had the iPad in her hands, she could focus on JUST that and tune out the world enough for her to calm down and reset. While she chilled, we took turns taking Aleyna on Transformers and waited for the parade to start. Aleyna loved that ride so so much. It really was a fun one. And you can see how crowded it was for the parade. I mean, we could hardly find a spot. Even the staff were amazed at how empty the park was. It was just crazy. And it was PERFECT for us.

Transformers and ParadeAt this point the need for more butterbeer kicked in and we went back to catch the Hogwarts Express back over to Islands of Adventure. Again, the train was VERY exciting for the girls. And it’s a different ‘ride’ going each direction, so that was especially fun. Ty went into the Three Broomsticks to order drinks, but it was so empty we all went in and grabbed a table. Again, total perfection. We ordered a frozen butterbeer this time, too, and that was the CLEAR winner. Oh my. Amazing. It was just such a nice ending to the day. It was drizzling, Evie was relaxing, and we just sat in there chatting and having some drinks. That’s my kind of evening.

Three BroomsticksWe finally left and started making our way back to the front of the park. Aleyna wanted to go on the Spiderman ride quickly, though, so we did that first.

And that was that. We drove back to Give Kids the World and ordered some pizza to our villa and just relaxed before bed. I was so stressed about this day as I saw the weather forecast, but everything worked together to make for such a relaxing and fun day for everyone. And it was nice to know that we’d have another day to explore more on Friday so there wasn’t as much pressure to do and see everything all at once. Really one of my favorite days, though I think I’m saying that about each day.

Evie’s Wish Trip: Epcot

After our first day at Magic Kingdom, it was a bit more difficult to get both girls up and out the door the next morning. Especially Evie. She kept trying to get back under the covers. We grabbed breakfast at Give Kids the World and then drove over to Epcot.

Epcot Family

After attempting a family photo, we hit the Epcot Character Spot that has Mickey, Goofy, and Minnie. This was so very special. Usually they don’t allow pictures with multiple characters (it just takes too much time and they want as many people as possible to be able to see them!), but they stopped everything for a bit and allowed some pictures with all three!

Mickey, Minnie, and GoofyGot a great family photo, too!

Family Photo

Baymax was also at Epcot. Evie was pretty scared at first (he’s huge!), but once Daddy lifted her up, she warmed up to him pretty quickly. When we went to leave, he followed us and wanted fist bumps. It was so incredibly cute!

BaymaxAt this point we realized it was time for Evie’s extra special wish: her princess meal at Akershus Royal Banquet Hall! Unfortunately, we also realized it was across the park and we had less time than we’d realized. So Ty and I got a nice run into the day. The girls LOVED this special meal. They got to meet so many princesses and go on a few parades around the restaurant.

Akershus EpcotWe walked around Epcot’s World Showcase a little, but knew that Jasmine and Aladdin were supposed to be in Morocco. We wound our way through the narrow little streets when a Cast Member stopped us and asked if we were looking for Jasmine and Aladdin. He ushered us to a little room  and the girls got to meet them right away. Both of them were so very sweet and I was impressed how calm Jasmine stayed when Evie had a bit of a coughing fit while they were chatting. She just waited for Ty and I to deal with it and then went straight back into chatting and hugs.

Jasmine and AladdinWe wandered back to the American section of World Showcase and were able to catch one of the shows by Voices of Liberty. So so talented. This was also the point of the day where I just couldn’t keep the tears back. A year ago from that week, we were dealing with Evie’s first GI bleed where she lost 40% of her blood. To be sitting there with her, listening to such beautiful and moving music was almost too much.

Aleyna wanted to give them thank you cards, so she ran over as they were leaving and we followed behind. We ended up with a special chance to just chat with them and thank them for such a beautiful performance.

Voices of LibertyWe wandered a bit more and came to France at precisely the right moment to catch the Serveur Amusant performance. These guys are just stellar.

I think part of the magic of Disney is that you have so many little moments of just absolute magic and joy and smiles. Everywhere you turn there’s something else to see and do and experience. This act was certainly one of my top moments for the day and I’m glad we were able to thank them afterwards and get some great pictures with the girls. I’m trying to remember what transpired that led to one of the guys holding Aleyna’s ice cream, but it sure made for some funny shots.

Serveur AmusantSpeaking of ice cream, I think we lived off breakfast and ice cream for several days. Evie loves to taste foods and asked for ice cream a bunch of times. So of course we got ice cream a bunch of times.

Next we set out in search of Winnie the Pooh and Tigger. We could see where they were supposed to be on the map, but it took a while to find them. They’re just in tiny little spot with no signs anywhere. Evie was over the moon once we found them, though!

Pooh and TiggerEvie was pretty exhausted by this point so we thought we’d check out one of the Wish lounges. This is the Siemens VIP lounge in Spaceship Earth (the big ball) and Wish families can use it. It was amazing and made us feel beyond special. We were given a code and went in this little door where a computer greeted us. We entered the code and then it opened another door which led to an elevator which led up to a lounge with a secretary. They had drinks, bathrooms, a charging station, and giant touch screens to play around with. One of them allowed you to change the color of the lights in the floor! Then when we were rested, they escorted us to a backdoor entrance to the ride where we literally went down some stairs, through a little door and could go straight on. The lounge has meeting rooms and such, too, which we weren’t allowed in (especially since a meeting was going on), but I guess the CEO of Siemens said they wanted to give access to Wish families. Just amazing.

Wish LoungeAfter riding Spaceship Earth (which broke down for a bit, but Evie handled it very well), we wanted to let Aleyna go on a few rides while Evie chilled some more. While Ty and Aleyna went on Test Track, Evie and I found a spot to rest. I chatted with Evie a bit using sign language and the man next to me asked if I was signing. Turns out his daughter also has hearing loss! I had such a wonderful time chatting with him and then his wife when she came back from a ride with their other daughter. There’s nothing so wonderful as connecting with other special needs families ‘out in the wild’! There’s just an instantaneous connection that allows you to chat and laugh like you’ve been friends for years. If you two are reading this, thank you for the wonderful conversation!

Test Track

Aleyna and Ty also went on Mission: SPACE, but neither of them particularly liked it. Actually, Aleyna hated it. But I took her on Test Track again and that brightened her back up.

From there we wandered back over to World Showcase. Unfortunately, Evie was pretty much done for the day and the crowds seemed to be a bit worse (still nothing compared to busy season, but we’re particularly crowd averse). Evie saw Daisy, though, so we jumped in the short line to see her. The Cast Members then sent us over to see Donald. I didn’t realize Evie loved both characters so much, but she was just beyond excited to see them!

Daisy and DonaldAnd that was when we called it a day. As much as I would have loved to stay to explore World Showcase and watch the fireworks, Evie was exhausted. We promised Aleyna the chance to swim back at Give Kids the World and that made her anxious to leave as well. We tried to grab one last family photo, but Evie was NOT happy about it. Meh. That’s alright. It’s real life. Kids aren’t always happy, but Evie did pretty darn well considering her sheltered existence. And she still looks cute. AND Tinkerbell made an appearance!

Epcot8I think Epcot may have been my favorite park. It’s one that I would have loved to spend days and days at, just exploring the World Showcase, trying foods, and hanging out.  We really had such a good day there. It didn’t go perfectly, but there were so many wonderful moments to blur out the more stressful times. So grateful we could all experience it together.



Disney World Wish Trip Tips

I wanted to compile a list of tips for those who are planning a Wish Trip to Disney World. These are either things we did and were happy we did or things we wish we had done.  One of my friends has a great tips post as well, so check out her advice. We found it very helpful in our planning. I’ll end up repeating some of her advice, but she goes into more detail about the logistics of everything than I’m going to do in this post.

  • Give out thank you cards
    • This is absolutely my number one tip. We just really wanted everyone to know how grateful we were for their attention to Evie and making Thank You Cardsour trip so special. Everyone at Give Kids the World, Disney World, and Universal Studios was just fantastic and this seemed the best way to express our thanks. They don’t have to be anything fancy, just a way to say thank you. We were very touched by the responses when we gave them out. I want all of these places to continue LOVING seeing Wish Families. Any time we were ushered to the front of the line or someone was helpful or just kind, we gave them a card. We made sure to give them to the photographers and handlers at character meet Giving Chewy a Thank Youand greets, but I’m still kicking myself for not giving more to the characters themselves or leaving an extra one for them. I was just caught up in watching the girls interact with them, we didn’t think of it until we got our Disney ‘sea legs’ of sorts. Now, I did ones for both Disney and Universal, but that’s because I craft when I’m stressed and I was MASSIVELY stressed for this trip. I also put the blog address on the back so people could stay connected to Evie if they wanted and the CHARGE Syndrome Foundation website to just spread a bit of awareness.
  • Wear your Make a Wish buttons and/or shirts
    • This is how people will know your child is a Wish Kid.Wish Shirts at Universal StudiosWe found wearing our buttons at Disney was enough since we also had the Genie Pass (a special pass for Wish Kids), but Ty and I wore our buttons AND shirts at Universal since their special pass isn’t as obvious.
  • Things to buy ahead of time
    • Charging Battery: This is just a big rechargeable battery that allows you to charge phones or devices on the go. We blew through our phone batteries pretty quickly with taking pictures and such, so this was very helpful. We have this one, but there are a lot of options out there.Ponchos on Stroller
    • Self Seal Laminating Pouches: I found these at Walmart and used it on our Genie Pass. If the pass gets wet, the dates can come off and cause some problems, so we just stuck it in that pouch and it made all the difference on those rainy days we had.
    • Lanyards: Give Kids the World gave us one, but if you want a special one or more than one, pick up some before you go. We kept our tickets, Memory Maker card, parking passes, etc. in plastic pouches on them so they were handy at all times.
    • Ponchos: Every Disney tips post I read suggested buying some ponchos to take along so you weren’t stuck buying them AT Disney. These were the most recommended so that’s what I bought and I’m so glad I did! I just stuck a few in our stroller and pulled them out to cover the stroller or us when we needed them.Autographs!
    • Autograph Book: Either make one or buy one. My friend recommended the Junior Encyclopedia of Animated Characters and having it spiral bound (I just took it to a copy center to have that done). I did just that and the girls LOVED it. It must be a pretty popular idea because when we met Snow White and I was hunting for her page, she calmly said, “I believe I’m on page 120.” And she was exactly right!
  • Start walking BEFORE you go
    • Ty and I averaged 10-12 miles EACH day we were there. I was so glad we had started biking and walking more before we went because I think we handled it pretty well overall. Buy yourself some good walking shoes, too. These are not days for flip flops or the like.
  • Print and laminate good mapsLaminated maps
    • If characters are your focus (or even if they’re not), Kenny the Pirate has the best maps for the Disney World parks. It shows you exactly where the various characters are located so you can plan accordingly. His Character Locator was also extremely helpful. I pulled it up constantly on my phone to see what times I could find various characters or show times. It really helped me plan out our day.
    • I got my Universal Studios maps from Undercover Tourist. You can find the Universal Studios map here and the Islands of Adventure map here.
    • So, because I’m a hyper planner when stressed, I printed full size versions first and laminated them. I went through the various attractions, crossing off or circling on the map with a dry erase marker as I went. This helped me get a loose plan in mind of the various things we wanted to see and what our priorities were. And the girls loved getting to look them over as well.Small Laminated Maps
    • Then I printed half sheet versions, laminated, hole punched, and hung them on a key ring to put on the stroller. That way I had easy access to check where things were (or where WE were!). Laminating is obviously not absolutely necessary, but on those rainy days, I was sure glad they were protected!
  • Stroller as a Wheelchair Tag
    • If you have a lot of medical supplies and equipment, this is an absolute MUST. There was NO way that we could just leave all of Evie’s stuff outside of a ride while we got in line. This allowed the stroller to go right up to where we got on the ride and then I could just pull her suction bag out to take on the ride itself. I had this horrible fear that a ride would break down in the middle and we’d be separated from her emergency supplies. Since the rides DID in fact break down a few times (fortunately not for very long), I would recommend that you take whatever emergency supplies you would need ONTO the ride with you. Obviously, you can’t take everything, but for us, that meant her suction machine bag that has emergency trachs and such in it.
  • Use the Wish Lounges
    • There are places at Magic Kingdom and Epcot that you have access to as a Wish Family. Give Kids the World will tell you about them in their visitor manual. We went to the one atEpcot Wish LoungeMagic Kingdom when Evie was in a meltdown from overstimulation and it really was perfect for letting her calm down. At Epcot, we only hit one of the three (because I didn’t realize there were two others!!!!), but that one was absolutely amazing. And again, the perfect spot to just chill and calm down.
  • Utilize the photographersCinderella's Castle
    • You will get a photo card for both Disney World and Universal Studios, so make sure you USE them! I wish that we would have taken the time to get more family photos, but it was always an afterthought instead of a priority.
  • Let your kid use devices to calm if needed
    • So, for the first two days, I didn’t let Evie have any devices. It’s Disney World! You can’t just stare at the iPad!!!!! That was wrong of me and led to the meltdowns of those days. Evie has spent most of her life in fairly quiet environments and Disney is loud with tons of people and bright lights! She just couldn’t handle it. Once I realized what she needed, the days went MUCH smoother. SheChill Time was happier, she participated MORE, and everyone else felt calmer as well. I wish I had realized it sooner. So don’t do what I did. If your kid gets overwhelmed easily (or even NOT easily), make sure you take that into account and give them something to calm down. Evie needed the iPad to allow her to focus on JUST that and tune out everything else for a while. Then she was ready to get back out there and try new things.
  • Have a chill day for your Wish Child
    • If your Wish Child is younger or gets tired easily, try to take a day where they can relax a bit more. For us, these were our Universal days. We did two Disney days, then a Universal day, then Disney, then Universal in our five days of parks. After two days at Disney, Evie just needed a day where she could hang out and not be expected to do much. There was still plenty for her to do at Universal, so we hit those things first, but once she was tired, we just let her rest. We took that time to hit some thrill rides and drink butterbeer.
  • Don’t forget the activities at Give Kids the World
    • They have SO much fun stuff going on at the village, so make sure you check the schedule! Seriously, Don’t miss out!Medieval TimesGKTW also has tickets available to other things in the area, too, so look into that. We got discounted tickets to Medieval times (loved it!) and free tickets to Kennedy Space Center.
  • Extend your trip if you can
    • This obviously isn’t possible for everyone, but if you can, think about extending your trip in both directions. We drove and got to Orlando the day before we could check into GKTW. We were then able to go over in the morning and have an entire day exploring the Village even ifGKTW Villaour Villa wasn’t ready quite yet. We also stayed an extra day in town so we could have our last day to hang out at GKTW again. It meant we had so much more time to be at the Village and just relax and enjoy ourselves instead of our first and last days being used for traveling to and from Orlando.

Those are just some very basic tips. Make sure you read through the Village Guide for GKTW before you go as that will have some very helpful information. Try to have a loose plan for where you want to go on which days and what you want to see at each park, but know that you likely won’t get to do EVERYTHING. And that’s okay. I think because this trip is a once in a lifetime thing, there’s a lot of pressure to make it practically perfect in every way, but you can’t. You’re going to forget things and miss things and wish you’d done xyz differently. Try to go with the flow (something we as Special Needs parents are both good and bad at!) and just enjoy yourself. Aim for the priorities and consider everything else as bonus fun.

You’re going to have a such great time and make so many wonderful memories! Really really.

It will be amazing!Family Photo


Evie’s Wish Trip: Magic Kingdom

We were able to start our first park day by doing some meet and greets at Give Kids the World Village first. Not only did this give the girls a more personal experience, but it cut down on germs and the number of characters we needed to track down that day. We also made sure to grab a good breakfast so we could hopefully make it a while before having to track down food at Magic Kingdom.

This was my most stressful day. Ty had been to Disney World, but I never had. Having so many unknown factors made me edgy as can be, but there is definitely something special about seeing Cinderella’s Castle for the first time. I couldn’t help but get all teary eyed, being so incredibly grateful that I got to be here with both of my girls.

After walking back to Fantasyland, we decided to start off with the Winnie the Pooh ride. Evie loves Pooh Bear and we’d shown her videos on Youtube to prep her for what some of the rides would be.

Winnie the Pooh Ride Line

It wasn’t a hit. She didn’t like the dark or the jerking around. And unfortunately, the ride itself didn’t work all that smoothly either, leaving us in the dark and hearing loud noises for longer. Poor kid. That stuff happens, though. It just does and once we got back out into the sunshine, we headed straight for Princess Fairytale Hall to perk her back up. This WAS a hit and should have been our very first stop. The girls got to meet Rapunzel, Cinderella, Elsa, and Anna.

Princess Fairytale Hall
Aleyna then got a chance to ride the Seven Dwarfs Mine Train twice with both Ty and me. I love her little giggles with the screams. I’m just the same on rides.

Next, we went over to Enchanted Tales with Belle which Evie hated immediately. She kept signing ‘all done’ and we just tried to keep her calm until the end. But then Belle came out and everything changed. Evie immediately jumped out of her stroller and stood at the front to get a better look. And then Belle led the children on a little parade/march around the room, but first she walked past Evie, held out her hand, and let Evie take hold to help her lead the group. I could have burst into tears right then and there. Thank you, Belle. Thank you for including my girl. Evie didn’t want to leave Belle, though, and kept trying to chase her, which fortunately the group around me found amusing.

Enchanted Tales with Belle
Next up was Ariel, who is one of the favorites for both girls. She was wonderful and interacted so well with both girls. Evie is so incredibly expressive and the photographer captured some of my absolute favorite shots of the trip.

Ariel's Grotto

We did Ariel’s ride as well. Evie didn’t dislike it as much and enjoyed waving at Ariel, but she was glad when it was over.

Ty and Aleyna then went on Haunted Mansion, something Aleyna was VERY excited about. We’d shown her videos so she knew what it was, but it’s just different in person and she was terrified. Poor kid. I remember going on it at Disneyland when I was about her age and was very scared myself.  We helped her recover with Dole Whips and then popped into the Tiki Room.

Tiki Room

Evie hated that as well. Dark and loud again. From there, Evie went downhill in sensory overload, so we popped over to the Wish Lounge for Wish Families and let her rest for a while. This was such a nice quiet spot and I’m grateful that Disney thought to provide such a space. Evie’s not used to this kind of thing! Her life just hasn’t involved crowds or rides.

MK Wish Lounge

Once she was calm and happy again, we went back out to catch the Festival of Fantasy Parade. Evie loved watching it and waving to all the characters.

Festival of Fantasy Parade

After the parade we walked over to Tomorrowland and had the girls drive the little cars. You know the ones. The ones that let the kids drive like total maniacs and have virtually no steering of any kind. I was laughing so hard riding with Aleyna, I could barely breathe. Ty had about the same experience with Evie’s driving. We also did Space Mountain with Aleyna and I think that was her favorite ride of the trip. Mine, too. They had a dance party with The Incredibles, but Evie refused to join in. She also refused to leave and kept asking to go back. So I guess she liked watching, just not actually dancing herself.

We then popped over to see Merida and I’ll be honest, I think she was my favorite of the day. She told the girls a great story about how she’d sent her brothers out to get cake and they never came back! She showed the girls her bow and then they got to try shooting some arrows! Just so so fun.


We tried the Peter Pan ride next, but Evie was just DONE for the day. Absolutely done. The only other ride that Aleyna desperately wanted to go on was Splash Mountain, so we hiked over there. I love this picture of Ty and Aleyna!

Splash Mountain

We briefly contemplated trying to stay for the Electric Parade and fireworks, but since it was our first day of parks, we just knew it would be bad to wear Evie out anymore.

We walked back up (down?) Main Street as everyone else lined up for the parade. So, of course, Evie waved to every single person, being her own little parade. Precious.

Her Own Parade

We stopped over to meet Tinker Bell quickly, though. She talked close to a million miles a minute and Ty and I just stood there in awe. She was a perfect Tinker Bell.

Tinker Bell

We then caught the ferry back over to parking and headed back to Give Kids the World Village, completely exhausted.

So that was our day at Magic Kingdom. The characters, which were our main priority, were a HUGE hit. Evie loved every single one of them. All of the cast members we interacted with were simply phenomenal. I’m just so touched by how they treat Wish Families. It was a great day and a great start to our days at the parks.

Cinderella's Castle

Evie’s Wish Trip: Give Kids the World Village

For Evie’s Wish trip we were given the opportunity to stay at Give Kids the World Village in Kissimmee, Florida. Let me tell you, this place is phenomenal. It’s just for Wish Families and they are VERY good at making the families feel special and cared for. That’s an impressive feat when you’re dealing with families with children with a huge variety of health issues.

Please take some time to read their history and look over their website. Go on. I’ll wait for you to come back. 🙂

On to our experiences there. We arrived in Orlando on Saturday night and head to GKTW Sunday morning. We knew our villa wouldn’t be ready until the afternoon, but figured we’d get orientation done and explore a bit. They ended up getting our villa ready for us much earlier than we expected which was so sweet of them. It gave us more time to get settled in as we looked around the Village.

What a magical place.

First off, this place is SO fun! There’s a train. There’s a little spinning ride. There’s a carousel. There’s an accessible playground. There’s a pool. There’s a giant ship that acts as a stage. There’s an ice cream palace. There’s a fishing pond. There’s an arcade. There’s mini golf. The girls had so much fun and since we had a day to spend there before hitting the parks, it was great prep for the rides and such. At first, Evie wouldn’t even get ON the carousel, but since there are people working it all day just waiting for kids to come ride it, she got plenty of opportunities to work up to riding on one of the horses. By Sunday evening, she was dragging us along as she ran towards it and tried climbing onto a horse by herself!

GKTW Facilities

Give Kids the World also has planned activities and parties for every single day. We wished so much that we could have done EVERYTHING, but there’s only so much time and energy in a day. We looked over their schedule, though, and tried to hit the ones we knew the girls would love the most! Our first day, Sunday, there was a tea party with the wife of Mayor Clayton. Both Mayor Clayton and Ms. Merry happen to be giant rabbits and our girls ADORED them. Ms. Merry also had a few princesses come to the tea party. They were wonderfully sweet to our girls and it was the perfect start to our time there.

Ms. Merry's Tea PartyThe only other activities we got to go to (besides the parties which I’ll get to in just a minute) were the horseback riding and a special performance of the ballet Sleeping Beauty by the Cambridge School of Ballet. There weren’t a ton of families around the Village Friday evening, so the girls got to have the ballerinas all to themselves. For two little girls that love to dance, it was absolutely perfect. The horseback riding Saturday morning was such a treat! Aleyna was excited immediately, but Evie took a while. The volunteers were all so patient with her, letting her meet and pet the horse first. Once Evie did that, she demanded a helmet and had her very first horse ride.

Ballet and Horseback Riding

Another really nice thing they do at GKTW is have some of the characters from the parks come for meet and greets. We did this on Monday morning before heading over to Magic Kingdom. That morning we were able to meet Mary Poppins, Mickey Mouse, Pluto, and Goofy!

Monday Characters

And the parties! A party every night! We couldn’t make it to all of them because we stayed later at the parks some nights and other nights we were just too exhausted to do anything but shower and climb into bed, but the ones we went to were so much fun! First we got to celebrate two holidays that we normally don’t get to because they are smack dab in the middle of germ season. We caught the very end of the Halloween party where the girls got to meet some superheroes and then a few days later, the girls got to meet Santa for the very first time! There was a lot of excitement!

Halloween and Christmas Parties

Our favorite party was definitely the Pirates and Princesses party on Friday night, though. And what made it amazing? The people. The volunteers who showed up and played their parts. The knights and pirates who froze when Aleyna would use her freezing powers on them. The mermaids who made fishy faces with the girls. The princesses who danced and twirled with Evie and made her feel so special. We laughed so hard and had so much fun. We also learned that we should watch out for Aleyna. Upon learning that the knights were after the pirates, she immediately sided with the pirates and helped them escape.

Pirates and Princesses Party

We had an extra special surprise when we were getting ice cream at the Ice Cream Palace our last day: Rupert Grint who plays Ron Weasley stopped by the village! Rupert is an ambassador for Starlight Children’s Foundation and wanted to see Give Kids the World Village for himself.  He was in Orlando for the Harry Potter Celebration at Universal Studios and we were so touched that he took some of his downtime to come visit the village. Aleyna was BEYOND excited as she’s just started getting into the Harry Potter stuff. She did inform him that she found the Harry Potter rides at Universal way too scary, though. Aleyna’s never been a shy child and I think she may have overwhelmed him a bit. Evie was fairly uninterested as he wasn’t a princess or mermaid, but someday, I think she’ll be pretty excited to see these pictures.

Meeting Rupert Grint

The number one thing I have to rave about with Give Kids the World is the incredible group of staff and volunteers that give of their time, talents, and energy to make every child and every family feel like they are the most important people on the planet. Our favorite part of our time there was spent chatting with the people there and learning some of their stories. In a world where special needs families are often met with fear and rejection, having a place where we felt immediately accepted and cared for is pretty darn special. Evie was just a little girl. She wasn’t a walking trach or gtube. She wasn’t a child to be feared or pitied. She was just a cute little girl who made friends and gave hugs and got to have FUN! Everything we needed was taken care of and usually we didn’t even get so far as to ASK for help. They were just there, ready to give us a hand and help in any way they could to make the trip just a bit easier.

Just a small number of the many volunteers we encountered at GKTW!

This is just a small number of the volunteers and staff we encountered during our week at Give Kids the World. They cooked food, served it, carried trays, got us drinks, helped us clean up water that was knocked over, delivered late night pizzas, made ice cream sundaes, took pictures for us to take home, dressed up in costumes, cleaned all the huge buildings and villas, kept the grounds looking spotless, ran the train and rides and carousel, painted fingernails, did face paint, put on shows, answered tons of questions, and more and more and more and more. These are amazing people. They really are. They could have been doing a thousand other things, but instead they came and gave our Evie a week full of laughter and fun. They gave us a chance to enjoy some time as a family after having been separated so much last year with hospital stays. We got to have fun without it being activities squeezed in before or after a surgery or hospital stay. That’s a big deal for us. And we will be forever grateful to everyone who made it possible.

Thank you again to everyone at Give Kids the World Village who gave us a chance to make so many new memories as a family. I hope some day Evie’s health improves enough that we can join you in volunteering to help even more families.

If you live in the Orlando area or are planning a visit down that way, consider volunteering at the Village! Or think about making a donation to the charity. You can also check out the website’s How to Help section for other options to support them! This is such a wonderful organization and I hope it goes on to help thousands of more children for years to come.


Evie’s Wish Trip

Make-A-Wish “…grant[s] the wishes of children with life-threatening medical conditions to enrich the human experience with hope, strength and joy.” (from the Make-A-Wish mission statement)

And because of Evie’s complex health issues involving so many of her systems, Make a Wish Iowa approved her for a Wish about a year and a half ago. Unfortunately, because she was so incredibly unstable last year with the increasing damage to her intestines, we had to put her Wish on hold. It was a rough decision. On the one hand, we worried that if we didn’t do it soon, we’d lose her before we could do it, BUT we certainly didn’t want to further risk her health by pursuing it. Of course, in the end, we were able to find the defect/damage in her intestine, remove it, and now she’s doing better than ever. We still have a lot of health issues to sort out, but we felt she was stable enough for us to plan her Wish. We talked over things and showed Evie videos and decided Disney World would be perfect for her. Her best friends in the world for her 4.5 years have been all the characters that she’s loved watching and playing with. So we planned and stressed and tried not to let our anxieties overwhelm us and got on our way.




Just absolutely amazing. For all my panicking that it would be a catastrophe leading to a hospital stay or worse, it went as smoothly as we could have ever hoped. And Evie had such a wonderful time. It took some trial and error to find what she liked in rides, but the characters were a perfect hit right from the beginning.

I’m just going to do a brief overview of our trip in this post and then (mostly to record for my own memory), I’ll create probably some day by day posts. I’d also like to do a post of tips for future families going to Disney World for Wish trips.

Alright, onto the photos for anyone who didn’t just skip past all that beginning stuff! And these are JUST the photos taken by the photographers at Disney. If I wait until I’ve compiled all the pictures we took, this post won’t come out for another 6 months.

First up, characters at Magic Kingdom. How cute are my girls????

MK Characters

Epcot Characters!

Epcot Characters

Hollywood Studios!

HS Characters

Evie needed time to chill each day which gave big sister a chance to hit a few thrill rides. That girl is definitely a bit of an adrenaline junkie. We tried to get a few family photos, but if a character wasn’t in the picture with her, Evie was less incline to give a smile. Still a pretty typical four year old in that regard, I’m thinking.

Disney PhotosAnd then there were a couple of days at Universal!  I grabbed quite a few of our pictures since there were so few professional ones. We just didn’t utilize the photo pass as well there. Partly because of the rain the first day, partly the crowds the second day due to the Harry Potter Celebration, and partly our own exhaustion and enjoying having slower days. Still, we absolutely LOVED Universal Studios and Islands of Adventure. They were so great to us as a Wish Family and we found Evie’s ultimate favorite ride.

Universal Photos

And we caught at least a little video of Evie on the Woody Woodpecker roller coaster. We’re still amazed that she loved this so much. We rode it at least 6-8 times and each time she would sign ‘again’ and beg to ride it.

That’s pretty much the best video ever, isn’t it?

And most importantly, our favorite place was Give Kids the World Village. This is where Wish Families can stay for their week in Orlando and it is beyond amazing. I just cannot emphasize enough how magical it was, how welcomed we were, how loved on the girls were, how fun the parties and activities were, and how much we wish we could have done EVERYTHING. I’ll make sure to do a post that details our time at the Village more because I want you all to know how much we loved it, but here’s some photos that the photographers took for us during the week.

GKTW Photos


Again I say, it was AMAZING. We’re so incredibly grateful to Make a Wish Iowa, Give Kids the World, Disney World, and Universal Studios for all of their hard work and dedication to make it a special week for Evie. Ty and I kept it together most of the week, but there were so many moments where we nearly broke down with the joy of seeing Evie having so much fun. This time last year we weren’t sure we would have much time left with her, so to be enjoying time as a family on our very first real vacation was truly wonderful.

I’ll get working on sorting pictures so I can do some more detailed posts, but hopefully this gives you at least a glimpse of all the fun we had!

The Beginning

Sorry, we’ve been absent for quite a long time. We’ve had a fairly uneventful few months. We did have to cancel a surgery due to pneumonia, but she came through it fine and we’ll try to reschedule the surgery for the spring sometime. It wasn’t anything immediately necessary. Christmas was nice and quiet. Well, not quiet. Because Evie is trying to TALK. With actual sounds and attempts at words with her mouth and vocal cords! Here’s just a couple of videos. Obviously, she has a long way to go, but she’s working hard to figure out the different sounds and mouth shapes. It’s pretty exciting around here!

Pretty good for a kid who has basically only been able to vocalize for a few months, right? (Yes, she made her first sounds a while back, but she still had to really PUNCH it to get sound out. It’d be like screaming every time you wanted to say something.  The inflammation in her airway has gone down enough now that she doesn’t have to work as hard, so she’s utilizing her speaking valve more and more and able to play around with sounds.)