1 down 2 to go

What an interesting day it has turned out to be, first around 1240am X has a very strong seizure, which he seemed to be awake through and yell throughout. It was a much longer seizure than past ones, this one lasted easily more than 2 minutes; the rest of the night consisted of him waking up in discomfort, it never lasted more than a minute. This happened about 4 or 5 times causing Sarah, who was sleeping with him, to have a very restless night. I took over around 7am, both of us figuring he was going to wake up soon, we were wrong, as he slept until 11am.


When asked if he remembered having a seizure he replied “No. I had a seizure? I don’t remember that.” Both of us were on edge waiting for the multitude of seizures to begin, and the stress of figuring out which medications would stop the onslaught of seizures. We have thus far been on edge for nothing as X has yet to have another seizure. The Doctors seem to be as confused as us, I am not at all pleased in this slow and confusing process; no one is to blame, and it is not because of a lack of effort, it is frustrating nonetheless. I have listened to other patients and parents of patients and am now aware of the fact that this happens in medicine more often than I realized. As mentioned in a previous post there are some people who have been in the hospital for years, others have been in and out for years; in that aspect we are definitely not alone.

I was walking down the hall today thinking of that very thing when I passed by one of the EEG recording rooms. One of the rooms caught my attention, I could hear someone yelling/crying, the closer I got the more I realized it was a boy, and there was more crying then actual words. As I walked by the room I noticed the door was open and could see a boy, about 13 years old, and an older man (Probably his father) sitting on the edge of the bed. The boy had his hands on his forehead, is face was red, and he said “I HATE MY BRAIN, WHY DOES IT HAVE TO BE LIKE THIS!” As I continued to walk and passed the door I heard a loud, “AAARRRRRGGGGGHHHHHHH!!!!” It was at this point that I received an even better understanding of how great my Xander is, and how little he complains. For the most part he just takes all of this in stride, and although he has his moments, he really is incredible.

Right now I am sitting on the bed next to him while he is watching “Tarzan” (Disney animation movie), just laying here watching TV quietly, even after 5 days of this nonsense. Yesterday I drew a face on his belly, with his bellybutton being the mouth; it was tons of fun, and even the nurses joined in. It’s things like that, that show me how fun he is to be around. I was able to hang out with the twins for about 2 hours today, then my mom showed up and we hung out with her for about an hour.

All this time with my kids makes me rethink the whole “Father Heart of God” thing, if my love for my boys pales in comparison to Gods love for us, then I have so much to learn about God. Now because I do not want this post to be 7 more paragraphs, I will save those thoughts for another day.

Again no news from my friend Eddie, I can only hope and pray that he is continuing to recover, and that there have been no setbacks. I know that it has been a long fight, but we need your prayers more now than ever, do not lose heart, as easy as that is to do. If you all could continue to press in to the throne room of heaven and ask our “Heavenly Father” to look upon Xander with favor so we can move on from this part of the journey. As of lately I have not felt like praying, the first time around that is all I did. I am not sure why this is happening, but regardless of how I feel, I am still praying. If you are in the same boat, know that you are not the only one, and that we do not rely on feelings to serve God. Keep praying, it works.