Day Of Rest

11. August 2008 by admin.

Sarah had restful day Sunday. She was visited by her Nana and Grandpa, and then her friends Chelsea and Abbey. Sorry I didn’t take any pictures today. She still has a nagging cough that is concerning me more than anyone else. I guess it is because I stare at Sarah intently looking for anything out of place, twitching, or has some kind of pattern to it. It seems feudal since her whole life has been turned upside down and out of place. I know the look in her eyes when she has a seizure, and when this cough hits her she has the same look. I don’t know what to think, so I am reserving my going off the deep end until I talk to her neurologist about it.

Jesse’s Dad gave me some advice when I started the blog. He told me to never leave anything out so people are never misled about Sarah’s condition and they get the whole story. Make sure I always include the good and the bad. I think of that when there are things I want to omit from this blog because I don’t want to think about them or I am having problems dealing with them myself. I say all of this to explain why I am telling everyone about this cough Sarah has. It has a lot of characteristics of a seizure. It comes on and she can’t control it. You can see her heart and breathing rate jump up. It seems more like a tic or spasm than someone coughing to clear their throat or get something out. She says that she can’t stop it and she gets the seizure look on her face when it happens. It started with the seizures she had after her hemispherectomy and continues after the surgery she had last week. It comes on a lot when she is trying to go to sleep and clusters the same way her seizures used to at bed time. It could be due to the fact that she had two very long intubations within a few weeks and her throat is highly irritated. I tried to get her to take some deep breaths through her mouth today during one episode and it seemed to stop it, so that made me feel a little better. It could just be post-op seizures (so far, that “it could just be post-operative issues and will go away in time” has not really been a source of comfort to me). I am not sure how I would handle it if she starts having seizures again. I feel that all the emotions that I have been able to hold back will just explode out of me and the weariness that I have been able to keep in check will just consume me all at once. I know I can’t let it, because I told Sarah that she doesn’t have room for laziness, and having a little pity party for myself would feel like the lazy way to deal with this.

I went to physical therapy with Sarah on Saturday. When her session was over the therapist told her that she would have to walk back to her wheelchair which was across the room. She wasn’t feeling good and was being a little defiant about doing it. She looked at me as if she wanted me to come over and carry her to her wheelchair. At that point I said, “Feel lucky, if it were up to me I would make you walk all the way back to your room”. The therapist and the nurse in the room looked at me like I was the most unfeeling hard-nosed militant parent in the world. Kim always tells me that I am too hard on Sarah. I always said that I didn’t want her to be a soft and fragile woman later in life. I want her to be able to take it when things got tough. Not to turn to self pity for comfort. When I sit and stare at her while she is sleeping I regret the times when I am hard on her, but feel that maybe it will help her be a fighter and get through all of this with a positive spirit and know that nothing in her life will ever be able to beat her into submission.

I will stop here. This was going to be a short and sweet post about a relaxing day for Sarah, but this is how I get at two o’clock in the morning.

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