New Normal

It's been a while since I've had time to write. Being back to work leaves so much less time to do the things that I love, but that's ok!
Not many things have changed with Anna. Life is hard for her, but is becoming just a natural part of our routine. Last weekend was Easter. We planned on attending the Easter Vigil Saturday night so that the kids could all sleep in Sunday morning. About an hour before we were to leave for the Vigil, Anna got sick. She was laying on her bedroom floor unable to move. I suggested she get in to her bed so she could rest, but her body wouldn't co-operate. She lay on her floor unable to move. Her eyes were closed, and she was holding her ears. I hugged her and tried to make her as comfortable as possible. We left Anna on the floor of her bedroom and went to Mass. It sometimes seems surreal to me that I would actually leave my daughter on her floor, feeling so sick, but it has become our normal.
It is so difficult to even explain what it's like having a child with a chronic illness. In some ways, it's like having a child who has the flu constantly, with times of severe suffering. She never really feels good. She is always sick. She has moments of feeling ok. She seizes those moments. She goes for walks and hangs out with friends. But those moments are rare, and if she overdoes it, she pays the price for a long time. The strange thing is, is that overdoing it for Anna, could just be walking for half an hour. So mind boggling.
Last week Anna was able to make it to school one day. This week, she went to school on Tuesday, stayed home Wednesday, went to school today but then had to be picked up. She was not well. She is now at home sleeping. It's hard to wrap my head around how sick she is.
We are taking things one day at a time. I have another doctors appointment booked for her in April. I will be begging for some advice. I am not enjoying our new normal even though I know, for now, this is the way it's going to be.