While I should be floating on cloud 9 thinking about what a fantastic time our family will be having in Disney in a little over a week, I have been grumpy, on edge. Kevin & I are thinking that it's because we're nervous with having a plan. Every time we make a plan something goes wrong. I know this is different... but we still can't get excited about it yet. It feels very surreal. Emily is excited, and that's all that really matters :) I just can't wait until we're actually there. That is when I will get excited. Even Gir feels the same way. Yeah... could you tell how much we need this??? It just seems too good to be true. And then the reality of why we're going hits me. No one ever thinks that they will be on the receiving end of a wish from Make A Wish. However, it really can change a child's attitude, which helps with recovery. I can't believe the difference that it has made with Emily. She wants to do more because she wants to feel better when we're there. That is awesome. She is doing pretty well right now. I worry most when things are running smoothly, like now. Usually just when we start to get ahead, she'll get an infection and have to increase her steroids again or her arthritis will flare. Right now she's happier than I've seen in about a year, and she seems to be feeling much better, too!
Most of the time I think we all do pretty well, considering how much we've had going on. However, there are always moments. They sneak up on you when you're not expecting it. Today was a very busy day. I got to Gir's high school for her awards ceremony at 7:45 A.M., and to hear her sing the national anthem! (Boy, was I sooooo proud!!!) Off to work for 9-5, then the little people had an art show at their school. They happened to be selling the elementary school yearbooks. We bought both of the little guys one. So, they're looking through their books and Emily finds her class. She sees that they used her pic from September. You know... the one BEFORE steroids. On the same page they had random pics from throughout the school year, including one of her on their field trip in December. She had the before & after on the same page. She was so happy about the one and so embarrassed about the other. She said it that way. We tell her that it doesn't change who she is, that she's still beautiful. She can feel the stares from people that don't know, or don't understand. It's so horrible that someone so young should have to feel that. However, I know that there are worse cases out there. Even with other Juvenile Dermatomyositis cases- at least Emily responds to treatment. Some kids still can't walk a year after starting treatment. Yes, I count our blessings. Yes, I will probably still be the first one to note the wild flowers are back, or see the way the sun beams through the trees on a foggy morning. I try to teach them to cherish what is really important, and enjoy the things that God has given us. Most of the time I think that helps.
We had our Arthritis Walk!!! That was exciting :) What made it really awesome was not feeling alone. She had our whole family, several people from our Cub Scout family (thanks again to Marie & Chris for coming, and for the donations by the Williams & Viraldi families!) We had people from other teams that we knew and looked forward to seeing. Emily was very tired that day thanks to her infusions the day before. Her Remicade dosage was increased. Remicade makes her very tired anyway, but the increase made it worse. The walk was a little bittersweet, too. I thought back to last year when she was so tired. We didn't realize it was the myositis setting in. So much was different then. Some days I long to be naive again. However, I can't change it so we accept. Anyway, I need to accept that it's bedtime. I'm a glutton for punishment, I think! :p I will keep everyone posted on developments!
We see beyond and into the sweet soul and inner beauty that exists in your amazing daughter, Emily. We love you and your family and are inspired by your connected and loving relationship. I know you will have a wonderful time at Disney and will appreciate your time to just be together. Love you!ReplyDelete