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.