My Confession

So I want to start off by saying this is going to be an all out post about my feelings, etc. It's probably not going to be pleasant but I can't say for sure where this is going to go. I know that I have many thoughts in my head and I need to let them out. So I am just going to type and we will see where we end up.

So first I am going to go back to Jan of 2010 after Lily had her second seizure. It was then emerging that her December seizure was not just a one time deal. These two seizures both happened at night. Well I have always been a heavy sleeper, so this obviously terrified me. So the three of us began sleeping in the living room. On the floor. I felt that this way I would be far to uncomfortable to sleep to deeply. It didn't work. When she had her seizure in April, Tracy was the one who woke up. This is a guilt that eats me up, never mind that she was on his pillow with her face pressed right up against his. Never mind the fact that as soon as he said my name I was up and running. he has told me numerous times that he thinks I was waking up when he called my name. Some things as parents we cannot forgive ourselves from doing. That is mine.

So now we will jump back to the present. After Lily's last seizure with the time change, we are once again in the living room. Not on the floor this time. Tracy and Lily are sleeping on our sofa bed and I am sleeping in the chair next to them. Once again my theory is that if I am uncomfortable I will not get in a deep sleep. And so far it is working. I wake up about once every hour (I can see the clock from my chair) and check on her.

However, I can't sleep. Not until late. I believe I have been averaging about 3-5 hours of broken sleep every night. So every day I am never getting things I need to get done, done. I have appointments for both the kids I need to make, paper work I need to finish filling out, a non-profit org that is in the making that needs my attention, etc, etc. Oh and don't get me started on the laundry! Now we all do get fed, so do the animals, etc, etc, but then I feel bad because I am not getting my other things done. I know I am not Super Woman, but the guilt likes to grab me and hold me tight sometimes.

You would think that after waking to Lily having a perfectly silent seizure I would be more confident that I will wake when she has the next one. But I think that one in April really knocked me for a loop. I know that I am just human but when it comes to my kids "being human" isn't an option.

I tell you a little secret, when I think back to any of Lily's seizures I see her eyes as blue. For those of you who have never had the pleasure of meeting my wonderful girl, Lily's eyes are brown. The only reason I can come up with is (and this is from my two semesters of psychology lol) that I am trying to disassociate the seizures from Lily. but why blue? Why not green or hazel? Blue is my favorite color so I really don't get it!

Any little movement she makes and my heart starts to race, only very late at night. And that my friends, is very silly. Lily rarely moves during her seizures. Number one reason I HATE when she sleeps on her back. She can be very stubborn when she is asleep. I move her onto her side and pretty soon she is back on her back again. C'mon kid, work with me! lol

I am so afraid for my little girl. And mad. No I am pissed! Why do things like this happen to our blessed little children who have never hurt a soul in their lives yet crazy pure evil people walk among us totally unscathed. And before anyone says life isn't fair, lemme tell you that phrase doesn't even begin to cover it. I don't however, blame God or a higher power. There is no blame here. I guess that makes it even harder to deal with the anger. Where do you go with it?

Tonight I will probably join them on the sofa bed but I will stay sitting up, my hands clinging to my daughter's chest. My own type of oxygen monitoring.

There are times that I feel that I am going to drowned in a pool of what if's. People say you can't think that way. Unless you are in this position you don't understand that you can't escape it. The what if's creep out of the deepest recesses of your mind and plant themselves firmly in the forefront before you even know what is happening. While it is a heavy burden to bare the what if's can at times help you prepare for things. But there are what if's that are just so terrible you can't even stand to face them, even in the darkness of your own mind.

So there it is, my thoughts and emotions laid raw before you. These are my thoughts at night when I am alone. During the day I do have these feelings but once that sun sets I get those butterflies in my stomach and it is all downhill from there. Thank God it's summer and the days are so much longer!

Thank you for reading.