Saturday, June 13, 2009
The rest of the story
Rebecca has epilepsy. The medical term now is seizure disorder, I'm guessing because the term epilepsy has so much of a stigma associated with it. We now understand that all of her prior "episodes" were associated with seizures...complex partial seizures that you may not necessarily be able to "see." A week ago while we were in the waiting room at her OT and ST appointments, she slumped down in her chair and had a generalized tonic/clonic seizure. It was so heartbreaking to watch her little body go through that. It seemed like an eternity before it was over. It lasted at least 30 seconds. When it was over, I had to pry her little hand from her hair. The staff at the therapy center called her neurologist for me, and she advised us to go to the ER and she would see us there. All Rebecca wanted to do was to lie down and sleep, so she didn't like me moving her to get to the ER, getting checked in, holding her until we were called back, etc. She was pretty combative. She just slept once they got her in a bed. I would wake her up to give her sips of Sprite. She vomited a couple of times after they gave her a popsicle. Her neurologist ordered an EEG there in the emergency room and then she came in to see her. I told the doctor what a bad morning we had had, the strange behavior that Rebecca was exhibiting and how she was not following through with anything I was telling her to do. She said that Rebecca was probably having seizures then, not able to process what was being said to her. There are occasions when she does this, so we are left to wonder if she has been having "mild" seizures more than we even realize. Rebecca is now on an anti-seizure medication. We are so hopeful and prayerful that it will stop the seizures and possible help her overcome some of her other issues--language difficulties, behavioral problems, etc.
Oh, how I did not want this diagnosis for her! I know there are many people with seizure disorder that live perfectly normal lives, but she has had so many obstacles placed before her already. I'm also thankful at the same time that this is something that we can manage, that there is medication for her condition. I have been thinking of all the children that suffer and die from horrible diseases like cancer, cystic fibrosis, muscular dystrophy...diseases that are far worse than what Rebecca has. And then I remember what Rebecca has gone through in her short life already. It is beyond my comprehension...not a life, but a mere existence without love. To me, that is the worst thing a child could suffer.
I have tried to do everything I possibly can to help Rebecca. I know I have obsessed about what new therapy to try, what to do next. I have been relying on myself and what I can do for her. Rebecca's new diagnosis has reminded me that I am not in control, that I need to turn that burden over to God. He will take care of her far beyond what I little I can do. And I am only able to do what little I am able to do through Him anyway! Help me by praying for her; pray for Rebecca to continue to grow into a loving, happy, confident, and independent young woman who is guided by a wonderful Savior!!