Some weeks are really tough...

Sometimes you just fall in a hole and its hard to get out of. This is one of those weeks. Everything is a drain. Feeding, getting meds organised, crying, seizures, more crying, more seizures, more meds. It feels like you just go around and around and around. There really isn't any light. She is at an age where she should be walking, I should be teaching her to talk, to feed herself and explore new things. She should be able to run around in the back yard with the dog, play with the other kids and do all the things that "normal" kids do. Sometimes being in this never ending cycle of feeding, crying, change a nappy and seizures is shit. I have this overwhelming sense of guilt. I should be putting her in her chair more often, I should be putting her arm and leg braces on more often, I should put her in her corner chair more often, I should feed her orally more often so she doesn't lose the ability to do so, I should give her more time. But seriously, I am emotionally drained right now. There is only so many hours in the day that one person can 'goo' and 'ga' at a baby so that she smiles. Don't get me wrong, I love her smiles and I do appreciate that she does smile, but there is only so much time in a day that one person can spend getting the child to smile.

I think that's one of the hard reality differences. 'Normal' people spend a few months 'gooing' and 'gaing' to their child, their child learns to smile, learns to interact with people, then they move on, they have new things that amuse them, new things to learn and by the age of about 6-12 months they are out exploring new and different things. Nothing changes with Holly. Day in day out, its the same. Its just ridiculous monotony.

It sounds like I'm really unappreciative of what I have. I try each day to be grateful that I have her at all. Some days, and some weeks its just really really tough.