Potentionally Life Threatening or just life threatening

So this isn't going to be a happy blog post. Nothing has happened to Lily or anything like that. I just need to pen some ponderings that have been on my mind.

So I know how to explain traditional Canavan to people but with the form that Lily has I am never sure what to say......potentially life threatening or just life threatening. And at this point the doctors can't tell me either way. From my own personal research I have found only three others (all girls btw) with this mild type of Canavan. So the medical community can tell me nothing at this point. And what a horrible thing to ponder! No parent should ever have to ponder such a question or be given the news that their child has a condition that may or will kill them.

And I have gone through the question, why us? I always arrive at the same answer....why not? I guess in the grand scheme of things someone has to be that one person or family with the issue. Guess our number was up. Not really a good answer I know, but it's the only one I can come up with.

I deal with it all the best way I can. Maybe I am in denial but I don't think that me daughter will die. That is not something that I would be able to ever consider or face. I guess that is why her seizures scare me so bad. They could easily take her from us.

You know, until this all happened I thought that our medical community had a handle on so much, that they really knew it all. When I would read in the paper, so-and-so was taked to EYX hospital and later died I would think to myself, how is that possible? With all our medical know how,  how are young healthy people with injuries dying at the hospital. The biggest thing I have learned in all this is that our medical community doesn't know jack. Don't get me wrong, I know they are trying but I have been amazed at how many times I have heard We don't know....when it comes to my daughter. This is from the seizures to the Canavan. I have been simply amazed and lost some of my naive. I miss that naive whole bunches.

Lily looks like such a healthy girl and for the most part she is. But then I have seen what many haven't. When her brain waves are out of control and they refuse to stop misfiring. When her body can't control herself and God willing she isn't aware of what is going on. I hope against hope that when she seizes that she is in a dream like state and has no idea what is happening. All the doctors can tell me is we don't know. Don't know if she is aware when she is having the seizures, don't know if we can control her seizures, don't know if the Canavan will progress, don't know if the Canavan will eventually claim my percious baby girl. My biggest fears is one of these seizures they will not be able to stop and she will seize to death. There lies my very deepest fear.

And I know that I should be grateful because things could be so much worse and I do know that and am grateful. But there are certain things that I mourn for my daughter. What about sleep overs when she gets older? What parent is going to feel comfortable with her, confident enough that if she has a seizure they will be able to handle it? And who would I feel comfortable enough to allow that kind of trust? What about her getting a drivers license? What is she has a seizure (patterns can change) during the day at school? Children can be very cruel! I want to beg those children in my mind to please be nice to my baby....it's not her fault.  She is no different that you except that sometimes her brain won't behave. But you won't catch it from her.

My biggest fear outside of death is that children will be mean to her and she won't have any friends. I think back to high school to a girl there who had epilepsy. Her name was Suki and she had very few friends. Now I am ridden by guilt and pain. Why didn't I befriend her? Simple...ignorance and I was afraid. If only you could go back in time and correct those mistakes that hit you like a lead ball to the gut.

Sorry this is such a dark post but these things have been bouncing around in my head for weeks and I needed to get them out.