I think

I think that I really need to start using this blog more. And I think I need to let people know that it is here is they are curious. I am not really sure why I haven't used it much. I guess sometimes it can be hard to let you thoughts and feelings out, especially on a subject such as this. But it's important for a number of reasons.

Recently things have been going really well and that worries me. Silly, I suppose but it just seems that every time things are going well something comes along and makes it not so good. You might be surprised that I feel that things are going good considering a few things. The first is that I quit school. But I feel that this was a good decision for me. Despite that I am not overly worried about Lily's Canavan my grades have taken a total nose dive since her diagnosis. I have no desire to study. I think simply that my priorities have changed. Coupled with that fact of attending college part time would not have my graduate with my PhD until I was 56 this just feels like the right thing for me to do.  I have already gotten a job, so that in itself is promising. It's very nice to go to work and just come home, no studying, no papers, etc. When I am done with work I am done. I like it a lot!

Due to Ohio's crappy weather we have had to reschedule Lily's upcoming MRI twice now. You may ask what the weather has to do with a MRI. Well, because it keeps getting warm for a minute (and I do mean a minute) then cold everyone is sick.  The first time Lily just had a slight cold and I am sure that they would have said it was ok to sedate her with a slight cold, but it wasn't ok with me. The second appointment Lily has croup so now we are looking at the beginning of May. Hopefully she will be over all of this by then. I want her to be at 100% for the sedation. If she isn't then we will just have to reschedule again. I am sure they will be over me but I don't care. I need to be completely comfortable with this. Lily has had MRI's before but that was under general because of her sleep apnea. Her sleep apnea is now gone so they will sedate her instead. I understand that sedation is a lot less evasive than general but since Lily has never been sedated before it worries me.

Worries me...worry. That is something I have done since Lily was born...long before the first seizure that changed our lives. Everyone told me while I was pregnant with her the second child is always easier, you worry less and are less paranoid, etc. But with Lily none of that came true. I was more paranoid with Lily. I was constantly afraid she was going to choke on something. The night when I walked into Lily's room and found her having a seizures my second thought was this is why....this is why I have been the way that I have since the day she was born. My first thought was f*ck! That ride in the ambulance that night was the worst night of my life. I remember huddling against a cabinet in the ambulance fighting off a panic attack as best I could knowing that the EMT's couldn't give their full attention to Lily if they had to worry about me. Our Green EMT's are the best guys in the world and I love them with all my heart. They have always been a great comfort to me, to our whole family actually. Going above and beyond what their job description entails, helping us save our sanity in times when losing it would have been so simple. They pull us back from the edge.

Ah well

Things have finally settled down and I am feeling more human and less jumpy right now. But I am almost always like that until the sunsets (which its doing earlier and earlier these days).

I am struggling in school this semester. I am pretty worried about that. I am going to drop the math class and hopefully that will help me. I am so afraid to try and get back on a regular routine. I feel like the second I do all hell will break lose again. Gotta get to it though. It's killing my grades. Time to try and get back to life as usual.

Well

I guess I should start shouldn't I? What can I say (and if you know me you know I can say a lot!).....I worry constantly. Now I always worried a lot before all this happened but I never knew worry like I do now. Which makes me worry more. I know, what? With my worry I am smoking more now than ever, not sleeping very much, not eating well, etc.....so I worry about my health as well as everything else going on. And of course I worry that CJ is not getting the attention that he should when all hell breaks lose.

And I think about what I call "the time before". This would be the time before Lily had seizures. It makes me sad. I miss the way things used to be.  How nap time and night-night time were times for me to have some me time or time for me and Tracy to have grown up time. Now they are periods of worry and fear for me. Always worrying, always checking to make sure she is ok. My stomach hurts now almost all the time. Some nights are better than others though.

I am glad that I finally went to school and did not drop out. I was drowning in depression, just sitting here thinking about the seizures. I couldn't get away from it. But I have been to two days of class and despite what a stressful time it is going to be trying to get caught up from the week that I missed it gives me something else to think about, something that I can have some kind of control of.

Tracy and CJ will be leaving tomorrow for a weekend camp out. My mom is flying up to stay with me and as always my "hey the guys are gonna go outta town, please come stay with me" best friend is coming up to stay the weekend as well. I am glad that I will have them both here as I am very paranoid right. I am glad that Tracy and CJ are going to the camp-out but at the same time I am nervous about it. I don't think that Tracy knows it but he is my nightly savior. When I get tired I get even more scared and worried and Tracy is always good at calming me down. So  I got two nights without him and I am gonna have to suck it up. I don't want my mom to see how bad I can be at times. I don't want her to worry about me.

I wish this would just go away and things could go back to the way they were in the time before but things will never be the same for me again. Even if she were to out grow these ( and I believe the type of seizures (partial complex) are the least likely to be outgrown) I will always worry they will come back.

The first seizure she had after 4 and 1/2 months seizure free was hard to deal with but I accepted it and we were getting back on our regular routine then BLAM little over a week later another one. WTF??  So there will be no relaxing for me. No calming of my thoughts. I can't wait for her appointment with her Neuro (sept 20) to see what she has to say.

And this month I am going to the Parents Seizure Support Group at the hospital. I'm thinking now more than ever its important for my own mental well being that I start making these meetings.

Reason for the creation of this blog

I think I need a place to bring out my feelings honest all out level. This will be my venting space, happy space, depressed space, etc to express myself. I think it will be very beneficial to me to get stupid thoughts outta my head and also I have had people say things like "I don't know how you cope, etc, etc" I think this blog will answer the how.