Fighting her way back to me.

There are so many awful things that happen, have been happening, to people that I hate to complain about stuff. I try to keep in perspective that my life is, largely, full of many fortunes. Matt and I celebrated our 10-year anniversary this week... a monumental feat... even noted by the juvenile sales clerk at Best Buy, who suggested I deserved a coupon for the gift that I purchased for Matt to honor our day. (Wish there had been one because that wasn't a cheap present!) We have a nice enough family. We both have jobs. Our kids are wonderful. Ella turned 7 on Sunday. There's a lot to be thankful for.

But, dangit, sometimes things are really flipping difficult. My least favorite part of every day is supposed to be one of the best times that a parent can have. Reading bedtime stories and singing lullabies should be special moments that we spend with our precious little loves. That's how they used to be for me. Now, bedtime is my most vulnerable and frigthening part of my day thanks to those awful seizures that Ella sometimes has after she goes to sleep. And, truly, they scare the crap out of me, out of all of us. We have no idea when they'll appear; there are no warning signs. No rhyme or reason. They are demonic boogeymen that creep up out of the middle of the night and attack when our guards are down. Like hands of fear and uncertainty, they grasp hold of my precious little girl and rock every ounce of stability and calm and safety out of our world. So, we just wait for them to happen. Wait. Check. Wait. Check. Over and over and over. Every night. And it sucks. Just sucks.

Clearly, they must have sensed the lowering of our guards, because Ella had another a couple of weeks ago... the evening before last freaking full day of her school year... the night before her class was to sing to the parents and her teachers were to present the children with special awards. And it wasn't an easy episode. It was the kind that can knock her off her feet for at least a couple of days, but still my sweet girl's only concern was singing those songs the next day at school. That was one of the first things she asked about when the seizure abated. Oh, and my heart just wept for her.

The next day, we visited the neurologist, and after a lengthy discussion we decided to try an anti-epileptic drug before bedtime. It was one of the things I'd been dreading. I'd only heard terrible stories about seizure meds. Not to mention the fact that since she'd experienced 3 seizures, she was diagnosed with epilepsy. Benign rolandic epilepsy. Also known as benign childhood epilepsy. And, for a parent, that's a hard pill to swallow. Really hard. There can be so many limits to living a childhood with epilepsy, and I just want her to have a normal one with sleep overs and playdates. A normal life. That's the goal of every parent. But, it is what it is, and we took the neuro's advice and got the drug. Side effect of neurontin in most kids: drowsiness. Side effect of neurontin in Ella: hyperactivity.

So, guess what? It didn't work. She had another seizure last night. It wasn't so rough, and she came out of it without us having to give her the diastat to stop the attack. Thank goodness. She even recalled exactly what I said to her during the episode. She told me that she could hear me, and she was fighting her way back to me. Oh. My. God. She was fighting to get to my voice. And I was fighting for her to come back to me. The first thing she said, even while she was coming out of it, and through clenched teeth, was, "Mommy, did I have a seizure?" She couldn't even move the left side of her body. Broken heart. Broken. A couple of minutes later, she told me, "I just want to be normal like my friends at school." Deeply broken heart. Damnit. Damnit. My baby. What the hell am I supposed to say? What the hell?

After speaking with the doctor, we decided on another medication. Will it work? I have no idea, but dear Jesus, I hope it will. For her sake, more than anything, I hope it will.

Please keep my girl in your thoughts and prayers. Send her positive energy. We all need it.