Give Lucas The World – Day 6

Yesterday was rainy here in Florida, so we planned for it to be our Sea World day. Everyone woke up around 8am yesterday, but I was up a little bit earlier. I tend to hop out of bed, grab my laptop, and write these blogs. It’s very therapeutic for me. After yesterday’s entry for the day prior was complete, we all hopped on a shuttle and went up to have some breakfast. Lucas wasn’t hungry, so he rode the carousel. Imagine that.


Thankfully Chris got him to at least have some ice cream. Yup, ice cream for breakfast. It’s big thing here. I was just happy that he had something to eat. Even if it was just five little bites of vanilla goodness. When I stood in the breakfast line, a volunteer came over and offered to hold my tray. They talked with me for a bit, carried my food to the table, and gave me lots of encouragement, and support. It’s such a nice way to start the day. I was very concerned about the potential blizzard that is going to slam the east coast tonight. I called Make A Wish, and left a message for a woman named Katie to express my concerns about being stuck in the airport with Lucas.


He absolutely loves going to visit the Star Fairy in the Castle of Miracles. He wants to keep going in there to see his “Cupcake Star”, as he calls it now. He made a wish to have wings, so he could fly up there and see it. However, his wings don’t work he said.


Love this boy with all of my heart and soul. He will forever be my greatest challenge. He’s always testing my patience, and my strength. Love will always win. Even when the poop hits the fan, and he goes nutty, I just grab onto him, kiss him, and tell him I love him. Then sometimes I have to “crane” him, which is a word for when I need to scoop him up, carry him, and sometimes restrain him if necessary. He knows that he is loved. That we make sure of. Even when we are exhausted, and overstressed to the point of no return. After the Star Fairy, I randomly opened another door… One I hadn’t opened yet.


We accidentally found God. Maybe it wasn’t an accident at all. It was a special time for Lucas and I to write a note to God, and pray together. He prayed for God to make him all better. Of course I cried. I cried my eyes out. He’s so smart, optimistic, and nothing slows him down. He doesn’t skip a beat though. He knows that he is sick. This trip has really made me realize just how sick he is. It’s hard to see him as a sick child because he is up and running around 80% of the time. When he’s not sleeping. He doesn’t nap, and he never slows down. Ever. However, I have come to terms with the fact that he is sick, and I don’t know what will happen in the future. This trip has taught me how to slow down, and enjoy the NOW. Enjoy every moment, and to try to make each day a great one.


Yeah, I know… I just told you that he doesn’t nap. Well, he did on the way to the Post office, and Walmart. Which was a blessing because he was a real menace beforehand.


I shipped back 5 boxes of clothes and stuff to our house to lighten our load. We have SO many toys and tokens to take home from this trip. I figured it would be easier to free up some space. It wasn’t cheap. However, we would have had to pay extra to check luggage that was over a certain weight anyways. This will make things easier when we head home SUNDAY NIGHT!!! That’s right! We aren’t leaving today! We don’t have to worry about that nasty storm, or getting stuck in the airport. Katie from Make A Wish texted me and told me she could move our flights to the next night, and extend our stay here at Give Kids the World for one more day. Now we have a WHOLE DAY IN DISNEY TODAY instead of just a short block of hours. I think the Wish Fairy knew we needed a little more help. Everyone from Make a Wish, and Give Kids the World just go out of their way to help us feel like we are part of this big family, and we will be connected to this place forever.


Nope, his wings still don’t work. He is cute though! The Star Fairy lives up in that purple castle tower! That’s the part of the castle that holds his star! WAY up top! They had to build this addition because their castle of miracles ceiling was completely full of stars. They needed room for more! His star is somewhere north east of the cupcake, on that outer layer of stars, I believe. Here’s a close-up of the cupcake realm:


He is such a picky eater. He wouldn’t even touch his lunch. Instead he had four bites of my chocolate chip cookie. When we got back to our villa, he had me order him a special cheese pizza delivery for him! He ate almost two slices. So I was pretty happy with that. However their food here is delicious. He is surely missing out.



Before the rain came, I was going to take a shower, and then go make my documentary video here for GKTW. As soon as I turned the shower water on, I thought to myself, this trip is for him. I can do my video later. I put my swimsuit on, and packed a bag with his stuff. Ran over to the playground and took him swimming! He was a bit hesitant at first, but as soon as I got him into the water, he was a happy little fish. They have a beach type of entrance so we just chose to lie down on our bellies and stay warm, as the air was cold. The storm was on it’s way quickly, so we just took a quick dip. I did manage to swim around with him a little bit, and he relaxed, and was able to feel calm and enjoy it.


After our swim, I bundled him up good, and told him I’d take him back to our villa and then he could go to the park. He is so impatient, and luckily the staff here is so helpful.


This is Mercedes, and she walked Lucas up and down that little wall until our shuttle came to pick us up! Lucas was excited to ride the shuttle again, and wanted to get back to the Lollipop Park, as he calls it. They have a giant Candy Land game in the playground.


This is where our day got a little sour. On the shuttle ride back to the villa, he wanted to stop and switch seats, which he often does. However, this shuttle was full so we could not do that. He got a little upset, but I managed to redirect our conversations to talk about happy things. Once we got home, I had to manhandle him a little bit to get him inside of the villa so he could put socks and shoes on to play safely on the playground. He didn’t like that, but we got it done. My husband and I heard him screaming. Rachel needed help. Chris ran over there, and sure enough… He came back with a screaming Lucas in his arms. Lucas didn’t want to leave the playground, but he kicked a boy in the face. He wanted the boy to move out of his way near the slide, so he kicked him. The father understood, but we could not let him think that was okay. So home he came. Which was good, because we had to get ready for the Pirate Party! My pictures aren’t the greatest, but they took some professional ones that I can’t wait to see! That blurry pirate was able to hold Lucas’ attention for like ten minutes, which is CRAZY. Can we keep him? Arrrrrrrr.


This mermaid princess told us that Lucas has fairies in his shoes. I looked at her confused, and she replied with, “Well how else would his shoes light up like that”? Too cute, so now he thinks there are fairies in his shoes, and he can’t get them out. LOVE!


It’s been really tough trying to make sure Rachel has fun on this trip. There’s not too much for her to do here, and she’s been babysitting. A lot. However, we do find good moments. We need to work on that today. We need to find the balance. It’s SO hard. However she gets to come back in April, so we don’t feel TOO awful. It just stinks that we can’t all be happy 100% of the time here in this magical place, but this is our life. This is our normal, and we have to accept that, move on, and make it work. That’s what we do.


It was definitely nice to spend a day just enjoying the village here at GKTW, but it wasn’t easy. We are finding that when Lucas gets bored, bad things tend to happen. We are learning how to enjoy the good moments. We are also trying to soak up all of the baby time we have left with our almost 10 month old little princess. I can’t even believe she will be a year old soon. It doesn’t seem real. These last 9 3/4 months (you see what I did there?) have been incredibly challenging. It’s so hard. However, the powers that be gave us this precious little angel to remind us of how sweet life can be. She brings us great joy.


One of the volunteers hooked me up with these sweet shark earrings. I am, always have been, and forever will be obsessed with sharks. I cried my eyes out. This woman pulled them out of her ears, and handed them to me. I made her take five dollars for them, but still. She wanted me to have them, and they will be forever cherished, and worn always. We went to make our video at the worst possible time for the kids. However, we didn’t really have another time to sit down and do a family documentary, so we winged it. It wasn’t pretty, and I can’t wait to share that with you! What a comical thought, to have everyone sit on a couch and talk to a camera. Glad we tried. Chris, Rachel, Lucas and Joanna had to leave the room, and I finished up. Just wanted to extend our warmest thanks for all of the accommodations we have received here. After that, we went back to our home and I got Lucas in the tub before he could tear anything apart. Then we called for a bunny tuck in, hoping that it would help him take his medicine. It didn’t, but he loved having the bunny here in our villa!! It was so cute! He gave her like 6 kisses.


This bunny is Mayor Clayton’s wife. He may be a bit jealous when he hears how many kisses Lucas gave to Mary. We walked her out to her little blue car, and went for a walk as he wasn’t tired. Chris, Rachel, and Joanna got locked out of our villa by the silly bunny! That’s okay though, a golf cart came soon after and let everyone back in.


Lucas and I walked around the whole playground, and pond while they were waiting for the golf cart to come. The moon was so powerful, and beautiful. Chris thinks the full moon was last night. I’m not sure when it is exactly… But let me tell you that the ring around this moon was SO powerful, that it blasted through the clouds and made for a beautiful visual that my phone could not capture properly. We tried to bribe Lucas with a BIG walk to take his medicine. We went up to the house of hearts to get a special bag from the Facebook group: Make A Wish Disney Trips. Each family that takes the bag, writes a note, takes something from the bag, and puts something in. It’s very sweet. Still no meds.


We stopped by The Clayton’s bunny house again to say goodnight but they were already asleep. So Lucas shut the door for them, because it was open. He said goodnight. Then he said his legs were tired and he wanted me to carry him. NO WAY. He’s 55 pounds! The shuttles were off, and our van was back at the villa. Go Go Gadget Kinderpack:


He HATES being in a stroller. Sometimes he is way too tired from all of the walking, so the harness isn’t helpful. So we LOVE the Preschool Kinderpack for when he wants “uppies”, because we just can’t carry him without it!!! As a mom with a chronically ill, and special needs child… I need options. Harness, Kinderpack, and a Stroller. That’s how we get through all of these parks down here! We were blessed by a very special Mama, who offered to buy us a Kinderpack because we simply could not afford one. We are so lucky, and haven’t spent a single penny of our own so far. The generosity of others is really heartwarming. Thank you Mama!! You know who you are!


Lucas just woke up… So it’s time to enjoy the day! We are going to take him horseback riding this morning, and then to DISNEY WORLD AGAIN!!!


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