The Scariest Thing On Earth

No, its not the Swamp Thing either. It's the fear that comes with a sick child.
As you know, Carmen has epilepsy. She has been diagnosed for about 4 years now. They started with no warning when she was about 3.5 years old. They aren't the grand mal type where she twitches or convulses like you think of when you hear seizure. She stares off into space, unable to control what her body does. Many kids with her type of disorder go undiagnosed. Its sad but true, these types of seizures are hard to catch. Unless your like Carmen and have 3 minute long ones right off the bat.
Carmen, it would seem, has brain damage. Science hasn't advanced enough to tell us exactly how or why she has it, but it's there. As her mom I have gone through all of the doubt, worry and guilt about how I could have inflicted this upon my innocent little one. But all of that doesn't help resolve the problem at hand. Where her brain damage is, is in her front temporal lobes. Where our empathy, social grace, body language readers, appropriate responses to social settings all are. Since she has her damage there, she is awkward at times. Things that you and I take for granted she just doesn't get, and doesn't even realise its wrong or rude.. she just doesn't notice that she has hurt people feelings. And not because she is a rude person, she just literally doesn't know it. Her brain isn't wired that way. Thinks like feeling bad for others when they are crying is something she had to be taught, and repeatedly reinforced. As she grows she has to rewire her brain to function more "normal". And since she was born this way, and science is still not there yet, we don't know exactly where she will struggle and where the connections are crystal clear. Everyday is a new struggle for her, new settings, new situations and she walks blindly into them.
She has been on Trileptal (seizure medication) from the first day she was diagnosed. She has done well on it over the years. As her weight and or metabolism change we have tweaked it. One doctor even overdosed her on it, but she has responded well to this medication.
About two years ago we started her on an additional medication, Keppra, to supplement the fact that Trileptal just wasn't cutting it anymore. Keppra was amazing, it was a night and day type or response for her. Her body really liked the Keppra and we went from dealing with 2-3 seizures a day, to none. A miracle if you ask me.
But again we are at a crossroads with her. She isn't fully covered by medications anymore. She struggles to keep control of her motor skills. And is back to having 1-2 seizures a day. They aren't the full blown falling down three minute long ones, but they are scary none the less.
She knows somethings wrong with her too. She has started telling me that she feels stupid and that she hates that her brain "keeps being silly". It breaks my heart. It was bad enough carrying this burden when I knew she didn't realise she was any different, or that anything was wrong. But we are at an age that she notices, and I'm sure her classmates notice that she IS different. She is too young to fully explain what is going on, not that it would really make it any easier for her. And I don't want to make her feel more uncomfortable about this than she already does. But I feel like by leaving her in the dark, I am making this journey even harder for her.
She doesn't have many friends at school. Honestly that is partly my fault. Since she was little we have spent a good chunk of her life at doctors offices at one appointment or another. I am a control freak mother, so struggle to put her in any situation that would highlight her differences from other kids that get the normal social interactions. So I have sheltered her, more than I should have probably.
We are starting her on a new medication tomorrow. I am very nervous about this. Hopeful that this will be another miracle for her, to take her through the next few years of life without too many complications. But in the short term, I am really worried that she will be one of the few who has an allergic reactions or have a side affect that will harm her. What is best for her? Whats the worst that could happen? "What if" is a big part of my life as you can tell.
So what is my biggest fear? My little blond angel leaving me too soon. That just one seizure will take her away. That this new medication will create some kind of complication, that she will be more harmed by it than better. That IS the scariest thing on Earth.

aww dang.. I need a tissue....