>> Thursday, December 9, 2010
I have been lax about posting on Bug's blog lately. He was doing well and then we wasn't, he had no seizures and then he had 3 in one day including a drop that immediately made me think he was back in Status. And then he had the night before last. It was ickie.
He came home from school and I pulled out that dreaded yellow paper. It's an incident paper. His Teacher had called to tell me had a seizure before getting on the bus. Bummer. His bus ride was uneventful and then an hour or so after he came home he had a another. Damn I thought. That night, he had some intestinal wonderment that woke him up three times in an hour and half. I changed his diapers and he went right back to sleep and then proceeded to have two more seizures. It occurred to me that he didn't seize more when he was constipated, which is common with a lot of seizure kids, but he seized more when he had diarrhea...maybe he has a bad allergy to something. We are determined to do a modified Atkins for Bug. Not a Keto...but carb light, fat heavy, protein laden.
What prompted me to write was something that happened before this ickness.
Papa, they think, had a Transient Global Amnesia event. I think he may have had a variation of that or a seizure but it was NOT a textbook case. They don't believe us. But before Papa 'got sleepy' we had been enjoying our breakfast at IHOP. Our waiter was fabulous and funny. Two things that guaranteed a big tip, and as it turned out has had Epilepsy since he was a young lad. 11 I think he said.
We made small talk about Epilepsy and about how Bug is doing, he told us about how he lives his life like everyone else and stopped taking him meds because they effect him more than the seizures do. I respect that. He doesn't drive, because that would be selfish and irresponsible and he ended with this:
Make sure to give him plenty of love and support when the other children make fun of him, and they will. I went through hell and I just want you to be prepared.
Bless him. Bless him a lot. I wanted to hug him, and I might have but Papa was asleep. For no reason. And Nana had difficulty waking him up. He answered my questions, but inappropriately and then tried to go back to sleep. I gathered everyone up and said: We are going to the Hospital. My first thought was: Stroke.
I live with death everyday. I do not accept it but I tolerate it. Bug has a higher than average chance of SUDEP, so I learn to keep my eyes and ears open for any change that can signal something big. I am used to it...with Bug. Not with Dad.
People are all different. Different is not bad, it just is...well...different. I saw this in spades this last weekend. Bug is different in a lot of ways and people accept that because he is easy to love. Dad was being treated as if he WAS NOT different. They wanted to lump him into a category immediately. I had to repeat what had happened no less than 4 times because THEY kept changing it. I won and Dad got what he needed, but I shouldn't have had to reiterate so many times. They should look at the symptoms, of course, but they HAVE to add in the differences of the person. THAT is what is wrong with medical professionals.
They see only what is constant and ignore it if it is out of type, they do not see the person.
Different is not good, or bad, and it's those differences that make us wonderful and varied and able to accomplish great things. Our differences keep us finding and reaching for more and farther than before. If we embrace it.