Give Lucas The World – Day 8

Yesterday morning I woke up, and everyone was asleep. It was almost 8:30am, and it was the one day that everyone should have gotten up early, as we had to checkout of our villa at Give Kids The World by 11. I sprung out of bed, woke up the girls, and darted out the door to catch a shuttle. I needed to return our video camera so the Memory Market would have a couple hours to transfer all of our video files to a disk. Dan the shuttle man hooked me up, and he waited for me to rush me back to my villa. I had the present from Mickey, just incase Lucas woke up and freaked out because I was gone. When I returned, he was still asleep. I had to scarf down a muffin, and finish the blog post from the day before. Then I had to do the most horrible thing. Pack up all of our stuff, so we would be prepared to go home. When I pack, I tend to get a little psycho. Rachel woke up with a cough, so we didn’t want her to cough all over the baby, so Chris was holding her, and as always… Super Mom just handled it all, but not in a nice manner. I admit it. I was a little crazy, but I think I get that way when I know I have a deadline to meet, and a TON of stuff not to forget, so that we all have what we need, where we need it. I sent home 5 boxes, and we still had things that couldn’t fit into our bags! I even brought extra bags! THE INSANITY!

There were Mickey’s everywhere! Toys, and bags… Gifts, and diapers! The baby was fussy, and needed to eat. Lucas had a giant turd in his pants, and wouldn’t let me change him. He was starting to get anxious, so I threw him in the bath. That was a good idea! Once he was all clean, we sent him off to the playground with Rachel. Phew! Wait, no they came right back. Ugh… It was okay though, because he just wanted to tell us that he was going to go ride the “fricken mushroom”, and he was laughing at himself. Chris and I saw a shuttle bus outside, and we told Rachel to hop on with him and to go have fun. We’d catch up when we were done in the villa. That was such a great idea! He had fun with her, they rode the carousel, had ice cream, and also went to see the Star Fairy… Yup, AGAIN!

Chris and I finished packing, and put everything in the car. Baby Joey was still fussy, so I decided that we should just head up to the main village, and Chris could go do the Walmart return, and I’d take lil’ Jo to go see what her brother was up to. He was having a blast. I took Joanna up to the House of Hearts to officially check out, and get our welcome back packet! No, the fun does not stop here! We have all been given an open invitation to come back ANYTIME we want to, we can have a free meal, and use all the amenities. We can also volunteer! They also gave Lucas another beautiful star, just like the one that the Star Fairy hung up in the Castle of Miracles. This one he can decorate, then we will frame it, and hang it up in his soon to be new room at home! We also decided that because this place had such a positive impact in all of our lives, especially his… We are going to decorate his room with a Give Kids The World theme, so he never forgets how special and connected we are to that magical place. We will definitely incorporate the Star Fairy, and her magic Castle! We do plan on moving one day, so I will design the art as a vector graphic that can be made into wall decals so we can make more later on down the line if he wants to keep that design forever! What a great idea right? We hope to come back every five years. Where will we move? Not sure, that will depend on our family, and his doctor.

The packet also contained a “passport” for Lucas, and our family. It allows us to hit up some attractions around the country for free, for one whole year! These people just know how to make the tears keep flowing! They also connected us with a group of ladies who will be making Lucas a special photo album from his trip, for free of course. There is also a pamphlet for a song to be written for Lucas, and his great adventure. As a musician, this meant the world to me. I can’t wait for this to happen. Since I’m crying while I’m writing this, it makes me want to share that ugly cry face I had when the photographers snapped me hugging Mickey the night his wish came true! We got all of our professional pictures downloaded today. I will find a way to share those with all of you in the future.


Yep. It’s horrible. However, the moment was incredible. Had to share! Back to this blog:


When Chris came back, we did the best thing we could have done for Lucas. We let him run free around the village. This is the life we can’t offer him at home, so we wanted to let him soak up all of that freedom while he could! We decided it was best to eat lunch in shifts, in order to let Lucas enjoy his afternoon. The poor volunteers in the Star Fairy’s Castle of Miracles! Lucas would not leave those girls alone. He could not stay out of there! In the photo above you can see those hexagon shaped stones, and we found out that for a generous donation… Lucas can have his name put on one! We plan on doing that when we get our tax return. Where will it be? In between the mushroom carousel, and the Star Fairy’s castle of course! Lucas must have been very anxious about leaving, because he was literally in and out of that castle. I’m talking over ten times. Finally I had to get the van, and go park it by the mushroom. Then I unfortunately had to drag him out of there and force him into the van. It wasn’t too bad. I kept on kissing him, and once he was in. He was feeling a little better. However he broke our hearts a million times. He kept saying, “No! I don’t wanna go. I wanna stay at GKTW forever, and live with the Star Fairy”. We expected it to be difficult to leave, but man this really woke us up. We realize how closed off he is to the outside world at home. We live in the middle of the woods in CT. It’s THE worst possible place for him and his disease. We want him to have fun each day. We have a lot of work to do, to finish our house. Once we do, we will be considering that move.

Driving out of GKTW, we all had this overwhelming feeling of depression. We were all very sad to go, and to take Lucas away from that magical place. We sure made memories that will last forever, and we had the most wonderful time (yes, even despite the hard moments). It was just so sad, and so hard to leave. We did decide to make one more stop before we headed for the airport. We had a little under two hours to kill.


We did make it to SeaWorld! We did not get to do any of the shows, and he would not put his harness on, ride in a stroller, or sit in the kinderpack. So I got a wheelchair, and made him sit on Rachel’s lap. That was a full body workout, and we had to go fast. We did walk through the shark encounter, which was awesome! We could do that all day. They also let him go down to see the whale in the stadium, because the exhibit window was closed. In January, they do a lot of their renovations. It’s their slower time of year. However, he got to see he big whale swim around a few times. We were pretty stoked about that! Joanna really liked looking at all of the fish in the tunnel too! So glad we were able to do it.


There were more than five or six sharks swimming around. So cool! Then we quickly made our way out of the park, didn’t even stop for our one free photo. I will tell you that SeaWorld isn’t really very accommodating for Make A Wish kids. I was kind of happy that we were just in and out. It was nice to do something before we gassed up the van, and made our way to the Orlando International Airport. We returned our van, and there was an awesome man named Milford who took ALL of our luggage, and wheeled us through baggage check. He even watched our stuff while we waited in line. We made sure to tip him well, and thank him. We would have NEVER been able to get through with time to spare without his help. Nor would we have been able to get in with all of our bags, without that cart! Everything just worked out. Even the security was awesome. I explained to them that if I took Lucas out of his carseat, I wouldn’t be able to get him back into it. They took him through the gate check, and wiped our hands to check for explosives, and didn’t give me a hard time about his water cup, our medicine bag, or any of Joey’s food. Thank God!


In the airport, Lucas was really anxious and did’t want to listen. He had 40 minutes to chill, before we boarded the plane in front of everyone else. Thankfully they understood that he needed the front row so he wouldn’t kick anyone in front of him, like he did all the way to Florida. Poor Al. We boarded first, and I quickly installed the kids carseats by the windows in the first two rows. Lucas sat in the aisle seat until everyone boarded the plane. He would not get into his carseat. He just kept screaming at me overtime i tried to get him to hop in the seat. Finally the flight attendant came over with a couple bags of Lorna Doone’s shortbread cookies, and told him he needed to get into his seat, or the plane would not take off. He hopped in, and flapped his little hands in excitement.


This made me very happy. I know people were staring at us, and that doesn’t bother me. I was starting to feel bad for them, because I just knew Lucas was going to upset everyone. Joanna was crying too. She didn’t want to be in her seat either. However, Chris strapped her in anyways and tried to keep her happy with photos on my phone from our trip. My husband had the pleasure of sitting next to a very stinky man who was studying to be a realtor. He didn’t seem amused with our kids. Oh well. Lucas wanted the windows closed, so he didn’t have to look out. Once the plane started moving, he actually wanted to see outside. His anxiety was lessening, and that was making me feel so much better about our situation. He loved those little cracker cookie things. Gotta get some of them for home. Once we reached 10,000 feet, Chris fed Joanna. Then she fell asleep. What an angel. I hooked him up with Jurassic World on the iPad because Lucas was tired, and didn’t want to play with it anymore. He looked at some photos from our trip, and then he said he wanted the plane to land NOW. I was so scared. I asked him what I could do to make his ride better, and he said he wanted more cookies. By the time the flight attendant came back to the front of the plane, I saw this:


Both kids slept the rest of the way home until we landed. Rachel and I shared headphones, and watched a little bit of Island Life on HGTV. It was nice. We were the last ones to get off the plane because the kids were asleep, and I needed to uninstall the carseats, they were strapped into. We also grabbed a wheelchair for all of our stuff. The flight crew was very impressed with our kids, considering we prepared them all for the worst case scenario. What a smooth, and quick flight that was. We should always fly at night, when the kids are exhausted! Lucas had no problem getting out of his seat, snuggled with Rachel for a second, and then got back into his seat so I could wheel him off of the plane. The pilot gave him a set of wings. Here’s a nice airport bathroom selfie for ya:


Once again, my dear husband got to wear his beautiful baby girl. That’s okay though. They were both pretty happy to be close to one another. She is definitely Daddy’s princess. Lucas will forever be my little Mama’s boy. I love using the Kinderpack with him. I love wearing him. I would do it ALL the time if he let me, backache or not! We could not have gotten through the parks without it. Can you tell I’m a big advocate for babywearing?


Our limo driver was waiting for us with a sign that said Lucas’ name on his tablet. Lucas thought that was pretty awesome! Lucas was surprisingly very happy to be back home in the cold land of snow. He was very excited outside. The cold never bothered him anyway.

(See what I did there?) We will forever be a Disney family now. Gonna have to break out all of the good videos from my childhood for Joanna & Lucas. Can’t wait for them to experience the emotions, and feelings I did when I was watching some of my favorite films. My personal favorites were The Little Mermaid, Aladdin, Pete’s Dragon, Lady & The Tramp… To name a few. I wonder which ones Lucas will enjoy? He wants to see Peter Pan.


Joanna rode in Lucas’ convertible carseat on the way home. She loves sitting upright. I think it’s time to get her one as well. She may finally be done with her little infant carrier. We are using it less and less these days. So sad. She is growing up so fast. However, she is almost 10 months, and still no sign of crawling or sitting up on her own without falling.


We will be seeing her doctor soon, so we will assess that then. For now, we are just so thankful that she waited until now to start teething. It’s been a nice break. She almost has her first tooth. Lucas was 4 months when he got his first one. Every child of mine was so incredibly different. They keep me going. I love these little goofballs.

Coming home was nice. We have a beautiful home, and we love being here inside this house. My husband loves the land, but I hate it. We really need to be in a better place for Lucas. I loved being in a little neighborhood community. I could live like that. It would take some getting used to for my husband, as he likes his desolate privacy. However, we need to put our family first. Lots to think about. For now, we will just enjoy what we have, and work our way out of debt. I have a job interview on Wednesday at noon. My fingers, and my toes are crossed. It would be perfect for our family!

Upon walking into our home… There is one thing that needs to change sooner than later. We need a king size bed. Lucas may very well be in our bed until he’s ten. We don’t even care. We just want him happy, and healthy. We do need more space. We all slept so well in the big big bed in Florida. Joanna had her bottle, and went to bed no problem. Just like she always did. She has had no issue transitioning back into our home life. Lucas on the other hand, thought he still had the same control he did in Florida. I knew that I couldn’t let him think that. I was determined to get his meds into him. He refused, so I did force his shot into him. He didn’t like that, but he got over it. Then I had his oral liquids ready to go, just 10ml of yummy cherry meds. The taste is fine, it’s just the fact that he doesn’t want to take them, and he wants to control every situation. I kept reminding him that if he didn’t take his medications, that I was going to bundle him up and take him to UMass, and let them give it to him. He didn’t want that. After a solid twenty minutes of mind numbing canter back and forth, and ear drum damaging screams, he reluctantly took his medicine like a good boy. Then he got his present from Mickey, and we told him that Mickey wants him to be healthy forever. Again, more happy tears! It was like wrestling an alligator. The victory felt wonderful. I felt so good to give my sick child what he needs to survive in this crazy world. He was given tons of praise, and lots of positive reinforcement. Lucas went to bed a very happy boy! He slept with his toys from Mickey.

So now what? I feel just terrible that I can’t offer him the life that he lived last week. All we can do is decorate his new room, and remind him of how magical GKTW and Disney is each and everyday. We will love him, hug him, and remind him of how special he is. He needs to be constantly reminded of how wonderful life can be. We don’t know what the future holds for him, but this trip really opened my eyes. He needs to do more, see more, feel more, and just all around live more. He was surely spoiled rotten on this trip! The photo below is just most of his plush toys he got on his special trip. There’s so much more! He’s one lucky boy! We are so grateful to Make A Wish, and Give Kids The World for giving us this amazing opportunity to spoil our son each day, and enjoy every moment!


We need to do our very best to make each day a great one. No matter how hard that may be. Lucas deserves the world, and that is exactly what we will give him.



2 thoughts on “Give Lucas The World – Day 8

Add yours

    1. We fall asleep with them. Chris takes them down before he joins us. Tonight, they are all in Joanna’s room. On the spare twin that nobody sleeps in anymore. HA!


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