Hope is a wonderful thing. I wouldn’t be without it. However it does mean there is further to fall when things don’t go the way you had..well… hoped.
We increased our girl’s Florinef by half a tablet whilst waiting on the Midodrine prescription. Almost immediately she seemed to perk up and started showering and appearing out of bed without any encouragement. It’s only been 4 days but it was looking good. The real test as always is school and I admit I was really hopeful. But right now she is lying in bed barely able to move because she is so nauseous. She won’t be getting to school this morning. That’s the 14th day out of the last 16 school days that she’s completely missed..and there was a similar pattern in the last few weeks before the holidays.
I can’t help feeling it would have hurt less if I hadn’t been so hopeful.
I know it’s important to stay positive and I will snap back into it shortly but right now I just needed to let you know how it feels. I know it’s impossible to understand unless you too are on this roller coaster and I know things could be much worse but this is hard, really hard.
Smiling and waving, smiling and waving………