When you think of Disney you think of magical experiences, thrilled and exhausted children (and adults) and all around happiness. Sure, it’s exhausting for the parents, and takes a while to recover from the emptied bank accounts, but it’s worth it, right?
Our first trip a couple of years ago was great! The kids loved it, we loved it, and we got special “privileges” thanks to Logan. We breezed through lines, she got extra attention from the characters, and it left us excited for the next time. We found a great hotel, and I honestly felt like I would be fully prepared for our next go. Well, life with a special needs kid can throw you for a loop.
I started planning this recent trip in the late summer. We decided to go back to celebrate Jack’s 10th birthday. Jack is a phenomenal kid with the biggest heart. Being a big brother to a kid like Logan is not always easy, and often means missing out on things sometimes. I’m not sure if he realizes any of the downfalls of our circumstances, but he has never complained about anything, and loves Logan for exactly who she is. In fact, he sometimes says he doesn’t want a cure for Logan, because then she would be different. He loves her unconditionally. His heart, oh man his heart is something else. A trip to Disney is the least we could do for him.
I knew November would be a great time to head to Disney. We went the week before Thanksgiving. The weather was perfect, and the crowds were not bad at all. They just finished decorating for Christmas, which added to the magic. In the back of my mind, however, I was thinking about how my crew always gets sick this time of year. I spent September – early November pumping them all up with elderberry syrup and vitamins, until I ran out. Things got busy, and this preventative routine we were on kind of went away. D’oh!! Well, the week before we left Wes came down with a cough, and gave it to Jack. Logan was spared. Just a cough and slight cold. No big deal.
I also spent those months stalking Facebook pages aimed for special needs families, getting every discount I could, and making sure I had everything in place for the best birthday ever for Jack! My parents were coming, and my little sister and her family were up for it too (they live in FL, so not a bad spot to get together!). My older sister and her family had sports commitments, so they could not come. We talked about it with Logan, showed her pictures and videos from the last time, and she would get giddy every time. Perfect!
We drive down, which honestly isn’t that bad. We have to rent a bigger car, because we bring a lot of stuff! Traveling with a rare kiddo is much like traveling with an 18 month old. You need a bed (and all that goes with it), special food, toys, communication devices, etc. It’s not ideal, and I so wish we could just pack a few bags and be done with it. My friend and her special needs crew were ironically headed to Disney the very same week, and we talked about how easy it must be to pack for a typical family. Sigh.
We loaded everything and everyone up in record time and were off! The drive down was easy, fun and fairly uneventful. Great start to the trip! We met my parents at the hotel, checked in, and Jack learned his first lesson about not settling. Let me tell you, Jack LOVES hotels. He notices little details, and was a little bummed. Our room was good, but it was right by the elevators and overlooked the parking lot. Not ideal, and it would have been fine, but it’s always worth asking for a change. I explained to him that you should never just accept your situation if there is something that can be done about it. David went down to the desk, and within a few moments we were moving on to a better room with a view of the lake, pool and prime viewing for fireworks from the parks. Kindness can go a long way, which is why I always send David to do the sweet talking 😉
The boys were thrilled to be sharing a room, and Logan was not as excited to be in her tent (I think this thing is on it’s last leg, and we better find an alternative soon!). She had a restless night, but nothing major. The next morning we were eager to get to the parks. Logan was not interested in eating breakfast, which is never a good sign. My mom got talked into one of those time share meetings and dragged my dad to go (hey, they got a free week stay at a Wyndham anywhere in the WORLD!), so our plan was to meet up at the Magic Kingdom. We get to the parking lot, the boys can barely contain themselves! We get Logan’s chair out of the back, and I go to put her in it. As I’m getting her out one of those parking lot trams goes by and freaks her out. She stiffens up and starts screaming! I tried calming her down, and it worked for a moment. I put her in, holding my breath, and we started heading towards the boat to get to the park. Well, we never made it out of the actual lot. She kept freaking out, hysterically. My heart was sinking and I honestly wanted to cry when I looked at the disappointed faces all around me. I made David take the boys without us. Logan and I drove back to the hotel, she cried the whole way. So many thoughts were going through my head. Will she bounce back today? Will it be like this all week? Is she ok? I then started to think of how I was missing out on seeing the reactions from the boys when they first walked in to see all the magic. Logan was missing this too.
Luckily, my parents were still at the hotel. They offered to stay with Logan while I went back and met the boys. They have this special relationship with all of my kids, but especially with Logan. They each have their own way of settling Logan, and bringing her back from any kind of emotional situation. I felt totally fine leaving her, but felt horrible that they were sacrificing their experience with the boys. They reassured me that they wanted to stay back, that they were tired, but I knew they were just being great parents. Thank you mom and dad. Thank you.
I met up with the boys just in time for our Buzz Lightyear ride fast pass. They had just gone on another roller coaster, Wes’s first ever. David took a video of it, which I am so grateful for. We spent a few hours there, watched the parade for Mickey’s birthday, went on some fun rides…Pirates of the Caribbean, Splash Mountain, Thunder Mountain…and it was all just so easy. I feel terrible for even saying this, but I feel it is necessary to be completely transparent on this blog. It felt amazing being a “normal” family with just the boys. Everything was easy. I didn’t have to worry about sudden noises that would scare or upset anyone. I didn’t have to navigate a wheelchair through a relentless crowd. I didn’t have to spoon feed anyone or worry about where to change a diaper (this is a whole worry all by itself. There are only baby changing stations everywhere!). I didn’t have to hang back and calm anyone down. We did things all together. I started to get mad at our situation, and I started to look around at all of the families who got to live like this every day. I saw the little girls running around in their princess outfits or Star Wars outfits without a care in the world. I started to mourn this life that was supposed to be ours, and the life that Logan should have. Then I stopped. When it all feels too much in times like this, it is imperative that I change my outlook. None of these kids or families compares to ours. Logan is a gift. A gift to all of us. I started to see all of the things that she would have LOVED! The music, the characters, the energy around us. I missed her, and I missed her being my sidekick. I hated that she wasn’t here, but took comfort in the belief that everything happens for a reason. Maybe the boys needed this carefree afternoon? Maybe David and I did? Maybe Logan needed to rest. Who knows, but I am thankful for the day. I think Jack was in tune to this, to Logan missing out. We saw a big Frozen themed balloon, and Jack insisted that we get it for her. His heart.
The next day my sister, Britt, and her family were going to meet us at Universal Studios for the day. We were all SO excited to see them!!! Well, Logan had a different plan. She started freaking out before we even got into the car. Super. Another day of this. Was it anxiety? Fear? We did not know. I wasn’t even going to think of asking my parents for help again. They were so looking forward to seeing their other grandkids, and worked so hard with Logan the previous day. David offered to stay behind and hang with her at the hotel while I took the boys. That is our life. Always dividing and conquering together.
Universal did not disappoint. We did the E.T. ride, the big boys did some big boy rides, we met some Transformers, went into Harry Potter’s world, Wes teased Beetlejuice with his lunch, and we encountered the Grinch. Our plan was to go back to the hotel, then send David and Jack back to do all the fun stuff at night. Well, I didn’t plan that one well, and was told the park closed at 7pm. 7?!?! It was 4pm. I called David and told him to get ready. I literally ran to the parking lot carrying Wes, praying I would make it home in time for David to get there and spend more than an hour. Jack stayed back with everyone, and Wes was not happy about this plan. We raced through traffic, and David got there in time. I feel so bad that I didn’t realize this before. I wanted David and Jack to have their time together, and I feel like I ruined it. Ugh.
The last day of the parks was Jack’s actual birthday. We have this tradition of decorating the kitchen the night before. We of course had to do it here, especially for #10!!! Jack was so happy, as he appreciates these little gestures so much.
Our day was planned for Hollywood Studios. Jack is a big Star Wars fan, and loved Toy Story when he was little. He was so excited to be able to see both! Logan was doing ok. She was in better spirits. We made it without crying to the car! We get to the park, get out, and it starts again. I put her back in and send the boys off again. I spent the night before praying that Logan would have a good day. Praying that I wouldn’t have to miss any of Jack’s birthday. I felt defeated. Abandoned. Like I was being punished for something. I’ve said it before here, but at times this syndrome really takes a toll on my faith…good and bad.
We drove around for a while, and she calmed down. We headed back to the hotel and as I was getting her out I got a call from my mom. She said she would come back to relieve me, but in a few hours (Britt’s crew had to leave that afternoon). I couldn’t miss THAT much of Jack’s day. I’d had it. I put Logan back in and told her we were going, whether she was liking it or not. I told her we had to be there for Jack. I rolled the windows down, put on her favorite music and prepared myself for a day of crying. We got out of the car, and she was fine. No stiffness, no tears. We quickly raced to the gate, made it through pretty fast, and giggles started. Christmas music was playing, bubbles were floating, and we were zipping through the crowd trying to meet up with everyone. Jack and David were in line (a 60 minute wait!) for the new Slinky ride in Toy Story Land, so we waited for the rest of the crew in the center of the park. We decided to hang out in a shaded part, and heard a line from her all time favorite movie, Frozen. She laughed at it. We were in front of the Frozen theater, but I was too scared to take her in. She was doing so well that I didn’t want to startle anything. That was the theme of the day here.
She was so happy to see Britt, Adam and her cousins, Phil and Henry. And of course Gussie and Mack (my parents)! Phil and Wes had signed up for the Jedi training, which was about to start, so we headed that way. The last time we went, Jack did this training, and Logan lost it. My parents had to wait in the car with her! That was on my mind, and I was trying to find every positive distraction for her, and for myself. Luckily she made it! David and Jack made it just in time for the show, too. The look on Wes’s face was priceless, and as expected, was not afraid of the massive Darth Vader he was to battle. Wild man for the win!
We traveled through Star Wars, which was incredible. The detail was outstanding! It really felt like you stepped through the screen. We visited Toy Story, saw Woody and Buzz, and got a special shout out from the army guy drumming parade. This was the only perk we used of Logan’s the entire time. Without her being there, we couldn’t get the DAS pass, or get special attention from the characters. Disney really does it right with special needs. Thank you, Disney!
We said a sad goodbye to our cousins after a FULL day at the park, and headed back to rest up. Jack wanted take-out at our hotel, then my parents babysat Logan and Wes while David and I took Jack back to the Magic Kingdom.
Everything about our night with Jack was magical. It was chilly, not crowded, full of Christmas spirit, and we all felt like kids running from ride to ride. Our first stop was Space Mountain, to try to get the same screams out of David as last time we came, but the ride was closed. That was the only bummer of the night. We braved the Haunted Mansion, got pretty wet on Splash Mountain and rode Thunder Mountain just as the fireworks were going off! It was incredible, and the smile on Jack’s face was worth every penny, every emotion. We rode the ferry back, and he sincerely thanked us for an awesome birthday and trip. No prompting, just out of the blue. There is nothing I wouldn’t do for this kid. I thank God everyday for him.
We packed up and headed home. And, got some answers as to why Logan was off. She had gotten the cold that the boys had the week before. She was burning up and cried for 4 hours. 4. Hours. It was so bad that I had to sit in the way back with her and hold her like a baby and sing to her. All without a seat belt. It was the worst drive ever, and found myself cursing this syndrome once again. It got to all of us. We were all ready to be home. As soon as we got home she fell asleep in her beanbag while we unloaded.
Jack and I woke up bright and early for a 6am bus to Grandfather Mountain for a field trip. Crazy busy, crazy emotional, but crazy fun week!
Happy Birthday, sweet and amazing Jack!