I am sitting in my bedroom, watching #1 as she struggles through yet another bad medication day. The combination of drugs and the dosages that she takes sometimes gives her horrible side effects, which include disorientation, migraine-type headaches, blurred vision, etc. Today is one of those days. Actually, every day has been one of those days for the last few weeks. Sometimes I feel as though treating the disease is worse than having the disease itself. I watch the struggle that she goes through some days and my heart hurts for my girl.
She has such strength of character and goodness of spirit, however, these last few months have been really rough on her. Her PET scan is scheduled for next week and then hopefully we can schedule an appointment with the neurosurgeon to talk about the surgery and schedule a date.
We host a teenage small group for our church every Sunday night, but because of SuperBowl yesterday, they are meeting tonight instead. And where is my daughter? Sitting on the loveseat in my room because her concentration is shot, she is in pain, and can't see straight. Back in my teenage days, that would have been the mark of a great weekend!!! But for an epileptic, that's bad stuff.
I spoke via conference call this afternoon to a partial ARD panel to see what can be done about her absences. It was decided that we would modify her schedule and let her come in later in the day so that hopefully most of the issues will have passed before her 2nd period. I have to say, I've tried to get her help scholastically over the last 8-10 years and have NEVER had the good experiences and attention that we have at our current district. She has a wonderful case manager and counselor that have such an interest in her welfare. We are blessed, indeed.
As I speak, my youngest daughter is sitting on the bed playing Xbox with the wonderful hubs. She is a hoot – she can carry on a conversation solely with herself and whichever character is onscreen at the time. I believe they've been playing for nearly 30 minutes now and I don't think she's come up for a long breath in all that time. LOL – I used to ask her every morning when she was younger if she had decided who she was going to be today – Miss Mouth of the South OR Princess Chatterbox. I KNOW she's got her mama's genes in her because I used to be the same way. I come from the day of television commercials that actually had jingles. I never have been a TV watcher, but I can remember sitting in the living room with family reading a book during whatever show they were watching and then when the commercials came on belting out the jingles at the top of my lungs. My dad used to get so very annoyed and it would usually end badly (oh, such as me being sent away or fussed at for my "voice that carries"). But that never stopped me. To this day I can sing some jingles for products that don't even exist any longer.
My next post will begin to give the background on #1's epilepsy and how it was diagnosed. Again, I just want to mark this down for posterity – so one day she can look back on this time – to document the road to surgery – to give mom an outlet that I don't have anywhere else right now.