Last Thursday, we spent a family day out in Guildford. We shopped and went for a really nice lunch. It was a long day for Anna and I was worried her body wouldn't be able to cope. She had to take a few rests throughout the day...sitting on a bench while the rest of us went in stores and leaning against a wall when she couldn't go anymore. Overall, though she did great!! That evening, she ended up having an episode in the middle of the night. It wasn't a horrific one, but an episode all the same. She slept most of the following day.
Over the break, Anna decided that she wanted to get a job. She loves to buy things and let's be real, there's no way we can keep up with what the kids want!! She was fortunate to get hired and is now employed!! I am so proud of her but a little scared. I am not sure if her body will co-operate. Once again, though, we are trying to not let this illness rule her life. If she wants to work and earn her own money, then absolutely she can give it a shot! I am praying that it goes smoothly for her! Her first shift is tomorrow....eek!!!
I received a call yesterday from Anna's cardiologist at Children's Hospital. He wants Anna to tell her story. They are starting a research program about dysautonomia as well as a support group I believe. He wants Anna to be a part of it which is so exciting for her. It will give her a bit of a voice. We are waiting for a call from their communications department and then we will go from there!
All day yesterday, Anna was a bit off. She just didn't feel well at all. We are used to these off days, but it's so frustrating. She spent a lot of time just laying in her bed or on the couch. She decided to sleep upstairs in the spare room. At about 3:30 this morning, she came into our room, sick. Here we go again. Another episode. I laid with her and rubbed her as her body fought. I wiped her tears and held her hand. Eventually it ended and Anna fell fast asleep. I laid there, holding her hand, as she slept.