The week was crazy, wonderful, exhausting, exhilarating, beautiful. We got back home on Saturday, earlier than expected, but we were all so tired. Though it had its rough spots, for the best part the week really was a wish come true for Emily.
I've been too preoccupied to post. I'm still trying to sort things out in my head. So much ran through it this week! So much happened. So many memories made. Give Kids the World Village was a wonderful, beautiful and amazing place that I'm having trouble putting into words. Before I formulate all of that, let me say tonight that I am very grateful to Boston Market, Perkins restaurants, Breyers ice cream, Hasbro toys, Walt Disney World, Universal Studios, Sea World, and the many, many volunteers that help to make up this amazing community.
The story of Give Kids the World can be found here. I was first told this story while in the pool with other families. We were enjoying watching all of the different children, some in PVC crafted wheelchairs especially for the water. It was amazing how many different families were there, yet there was a feeling of kinship and understanding here. The volunteers come from all different walks of life. Some are high school students doing their community service projects. Some are college kids earning credit. Some are retired folks, occasionally coming from different states to spend their vacations helping these families. And many are employees of the theme parks. We had figured that the theme parks may feel we were a burden- getting free tickets should be enough, right? No, they totally understand that they are giving some children the hope to beat their diseases. Some children will cherish these memories as they fight long, life-long battles. And others don't have time for any other wishes. They know the tolls that having sick children can take on a family- mentally, physically, financially. These theme park employees would sometimes come up to us and ask us how we were doing, how we were enjoying our stay, and all mentioned how they loved the time that they volunteered there. Many are still active volunteers. Others can't fit it in right now but look back fondly. I cannot begin to express to you how amazing a community this place is. And they think of everything!
On our first day we walked in to find a toy in our villa. (They left toys daily for the kids.) The villa was larger than our house. The kids bathroom had a jacuzzi and a huge handicap shower. We were given coupons to take to the Star Tower to make "dream pillows" for the kids, and also to place Emily's star. Since some of these little people lose their fights, they decided to give them a star to place up on the ceiling that would stay forever. This would always keep a part of them in the village. I believe they said there are 150,000 stars up in the main area, and they expect the new star tower (only opened 3 weeks ago now) to be full in 6-9 years. A star for every sick child that will be placed, and with the guidance of a star fairy, always found by the child or their family if the child passes away. What a beautiful concept! They want your child's week to be "a week of yes's".
Though she felt fragile this week, camera shy still due to the steroid weight, and flaring a bit, Emily still managed to have a wonderful week of dreams come true. We laughed, we made new memories, we had fun, we enjoyed the rides but also the nature around us, the animals, and feeding the animals! My favorite moment? Watching my girls feeding the dolphins. My son was busy pouting because he wanted to go ride a roller coaster, but my girls enjoyed the experience for what it was- an amazing experience and momentary connection with a dolphin. I wanted to purchase the actual Sea World photos, but with the crowds of people trapping us then moving us along, combined with the drama that my son created, we somehow forgot to go look at them. This is my consolation prize :)
I shall give a real update soon with actual details of the trip. Let me say now that Gir seriously almost killed herself before we even got into our villa. She tripped on a bag while trying to exit the van. I saw her feet in the air flying as she went out the door. She scared the heck out of me!!! I was terrified, but she was somehow totally ok. She was bruised up all over, and she bit her lip but otherwise she was fine. She was very, very lucky. I was worried that may set the tone for the week, but it was surprisingly calm and peaceful. More to come soon :)
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Tuesday, May 31, 2011
Subscribe to: Post Comments (Atom)
Post a Comment