After a crazy busy, stressful week, we are finally 99% packed & ready to go. The time has come. (And the world didn't even end! WOOT!) Emily is EXTREMELY excited. She was informed on Wednesday when Make A Wish came back to our home that she will be meeting with Rapunzel this week! She cannot stop thinking about this trip. We will have a 3 day park hopper pass for any 4 Disney parks, a 2 day pass for Universal & Islands of Adventure, and a one day pass for Sea World. Unbelievable! It really has been a miracle for us. Seeing her so happy & animated and playing with her brother the way they used to play just melts my heart.
It occurred to me this week that Destructo Boy is really the sweetest brother to her. They were so close before Prednisone. After, her "roid rage" was mainly directed at him, thus creating a rift in their relationship. My boy is so chillin' that he pretty much just shrugged it all off. He never really yelled at her about being so mean to him; he just took it. When they go places like doctor's appointments and therapy sessions, Emily almost always gets "treasure box". DB rarely is allowed to choose, but he just accepts this without complaint. He needs this trip every bit as much as Emily does. I believe he was made for her. I truly do. He helps care for her- he makes her laugh, takes her commands, follows her orders & wants nothing in return but a playmate & love. I know that I say it a lot but I am truly so blessed. I really hope that this is an amazing week for all of the kids. Lord knows that we have needed a break desperately. And when we come home? A few days at work and then off to the hospital for her next IV infusion, with Cub Scout camp the following week. It looks like it's going to be a crazy summer! :) I will update when we get back, after things settle down!
*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!
Sunday, May 22, 2011
Leaving in the morning!
Labels: make a wish
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Have a BLAST! You ALL deserve this trip. Your son sounds like an awesome boy, who, I am sure, will be an amazing man.ReplyDelete
Katie, Esella's Mama