|Sleeping after a seizure with her best buddy standing guard.|
You hear the sound first. Sometimes I am asked what it sounds like. I always answer the same way. "You only have to hear it once to know what it is." It is not a cry, a moan or a scream. It is the sound of fear, panic and fight. My 11-year old daughter has seized since she was 4 months old. That first seizure all those years ago, that lead to the brain scan, that lead to the diagnosis, that has lead to me knowing way more than an English teacher needs to know about the brain, strokes, CP, and pharmacology.
I run to her, where ever she is. And she to me when she can. Her clumsy knee walking even clumsier because of the tremor and the fear. It has actually made me feel worse that she knows it is coming. I mean, I do appreciate that she is better able to predict, to prepare me, to get us ready, but I hate that she fears it.
She fights. She fights like crazy. As her body tenses she screams. Her eyes lock with mine. By now I have one kid watching the time and another running for a bucket. (She almost always vomits.) I begin the talk. "You are okay. Just relax. I am here." A lot of that I say just for myself and to fill the room with something that isn't her moans and terror. My kids try and talk to her. They jump around and make faces. They sit and hold her hand. They worry. They never take their eyes off her. They recheck the time, they say things like, "how much longer?" and "is she breathing?" Because sometimes she stops. Totally. Stops. I have rescue breathed for her more times than I can count. A fourth grade teacher at her school saved her life a year ago.
So we watch her. Her body tenses, her eyes roll. We give her the dissolving tablet to help her relax. It tastes bad. She fights me a little. That is a good sign. I make a joke. She directs her eyes toward me. Another good sign. Total amount of time past - less than 5 minutes.
She relaxes a bit. Her breathing normalizes. Her skin pinks up. And I pray. Pray the pill will work, pray she will breath, pray that my other kids aren't scared. But I am. But I have to check the clock. Then she vomits and I check the clock again. Was the pill in long enough? She is drooling but can't wipe her face. I ask her if she wants me to and she nods. Another good sign. Time: 8 minutes.
I have managed seizures at home before. It isn't new, but it is never easy. She lays down. She will sleep now. 20 minutes, 40 minutes, an hour, 4 hours....I never know. After last night's it was 12 hours. I watch her. Check her breathing and wait. I set my iPhone alarm, so I can check overnight. I never need it. I am up and down every couple of hours without it.
Once she wakes she is ready to go. I half-joke and say that she recovers before I do. It is true. She happily loves on our little dog. She sings her sing-song conversation with him and I watch. Her balance. Her breathing. She is shaky, but happy. We survived another one.
I don't write this for pity or sympathy, but rather as an example of happiness in spite of hardship. She is the happiest kid I know. She enjoys everything that she experiences. Maybe it is because her life is hard at times. She, more than my other kids, is acutely aware of how hard things can be.
Today is a new day, so I'll watch her. I'll give her 8 pills today (and every day) in hopes of keeping her seizure free. Most days she is. And the days she isn't, I watch, I wait, and I pray.
From This Mom,