A little afraid of the unknown...

The one thing that is so hard to grasp with this disease is the unknown, each day is different and we don't know what to expect. We can't plan for a bad pain day, we just have to accept it when it arrives. Mornings are hard for Bella because she wakes up in pain and stiff every morning. Getting out of bed is a challenge each day. We are trying different things to try and make the morning transition easier for her. Once we get it figured out this disease will throw us a curve ball and we will be back at the drawing board because that is how Juvenile Arthritis works.
The other night Bella and I had a talk about JA and it is clear to me that she is sad and scared. She doesn't want to talk about it much and is storing up most of her feelings. But she did open up a little which brought me to tears in front of her for the first time since she was diagnosed.  She told me she is afraid of never being out of pain, afraid of what the next round of medications may do to her, and nervous that she may wake up one day and not be able to walk. Moments like this make your heart break as a mom. It is the first time that I can't fix it for her, I can support and guide her, but my band aid won't work this time. My daughter's future is now in the hands of doctors and I have to put my trust in them. I have to encourage my daughter to stay positive even when I am just as nervous and scared as her. If we don't follow the doctor's orders we could cause damage to her joints, organs, and expose her to other issues. My best advice to my daughter was that we are going to fight until we get into remission, we will do whatever it takes to help her be pain free, and we will educate as many people as we can in hopes that one day there is a cure. Bella is strong, courageous, and will accomplish things I never imagined possible. My short term goal is the day this will not consume our lives.
As Bella wrote about in her own post, she will be doing a presentation Friday to her class to educate them on Juvenile Arthritis. We gathered information (tricky way for mom to get my stubborn daughter to learn more herself), picked photos, and made a video. During our research (also briefly explained by the doctor) we found out that one of the medications Bella will need to take is a mild form of chemotherapy. That was hard for Bella to hear because one of her dearest friends is battling cancer and taking chemotherapy. Bella sees how it has effected her friend and she is worried for herself. I explained that the side effects are minimal and no matter what happens we will work it out.
Thank you to everyone who posts on her blog, she looks every night to see what everyone is saying. She told me it is her way of talking about her feelings and it make her happy!
So, check out her video below and let us know what you think. <3<3<3