It's hard to stay positive on days like this, Georgia starting her day off with a little cuddling with Mommy then heading downstairs for breakfast; then suddently, out of nowhere "the beast" (aka seizures) take hold and before you know it, she is down on the ground rigid, holding her breath, waiting for it to pass so she can just get up and wait for another one to bring her down. I often wonder what goes through her mind, does she think that this is how life is supposed to be? does it hurt her? is it like a shock of electricity? What happens? Does Jesus hold her and give her comfort from the time the seizure starts to the time her body regains composure?
As a Mother, it is hard to sit there and watch that happen over and over throughout the day and not be able to do anything to stop it. I try to hold her almost everytime it happens and rub her back and give her reassuring words but in my heart I do not believe them. I do not believe there is any comfort for her in them. Telling her, it's okay and this too shall pass, and Jesus knows, but really it's not okay and it does not seem to pass, another day of seizures, another day full of falling, another day of crying because that is all she can do, she cannot express her pain in any other way.
When you are told there is nothing anyone can do and do not expect much out of your daughter because she is never going to meet your expectations. It's hard to see the silver lining in the clouds. I do everything in my power to make her well, I spend a lot of time in prayer, I give her the medicine (which by the way, I have to hold her down and sit on her and then pray that she can get it down without throwing it back up) I hold her, I love on her and still nothing seems to be change.Waiting for a moment to put both kids down for their nap so I can run to the shower and cry the pain out of me so I can recompose myself to be everything that she needs me to be.
I do not understand why Georgia was put here to endure these awful seizures and nothing is going to change (at least according to the doctors). Aren't doctors put here to do everything they can do make a person well, aren't they put here to give you hope? My only hope is that Georgia at least be able to go without having seizures. So what if she is my child forever with a mind of a child, if I could just will away the seizures all would be well.
I see my son, doing so well, so curious and animated and wish that Georgia could see that this is what life is about, playing and making faces, and smiling at me to get out of trouble, not falling, crying to get his way, not crying out of pure frustration or anguish. Like I said, hard to stay positive on days like this.
Trying, trying, trying...