At last we spoke I was waiting to get results from a sleep deprived EEG on Princess.
We got the results, the next day actually because the tech rushed them to the neuro. The verdict: petite mal epilepsy. So now begins a new chapter on a new journey in completely unchartered waters.
I haven’t written sooner because If I had it would have been really angry and sort of whiney and I don’t like to write like that. I love my kids and do my best to accept them the way they are while doing everything in my power to teach them how to also survive in a world that is only starting to get the message that different doesn’t equal broken. Coming on here and ranting does nothing to further the goal of acceptance and understanding so I try to avoid it. That said I will admit I’m just now at a point where I’m not consumed with anger.
I was angry! Really really angry that the universe seems to think I have limitless amounts of energy and patience and drive to not only support one child on the spectrum but also another waiting for assessment and now another different debilitating neuro-disorder in my other child. I’m over the self pitty part now but I’m still pissed off that Princess has to deal with this, that she is going to start school in a few months and may still have bladder control issues from the seizures, that she is so incredibly smart but may still struggle in school because the constant seizing and recovering, seizing and recovering may interfere with her ability to take in and store the information she is given. That pisses me off! It may always piss me off, but at least for now I’m not letting it dominate.
She is responding to med’s, we have seen a reduction in the frequency of seizures already so that is good news. Unfortunately the seizures we are seeing are longer and often involve twitching and loss of bladder control. We see the pediatrician again tomorrow and hopefully she will have some positive insight to offer and hope that the seizures will be controlled and ultimately out grown, until then we are going to keep getting up and doing our best every day.