Good News, bad news, Good News, bad news...................

As I type this, against my will, I want to remind you that you are getting an inside look into my heart. This is not a whining session; this is more or less my raw emotions as I try to work through them.


I am not too sure where to start, I am not crushed, far from it, but I feel a certain and very strong almost overpowering weariness. I am really tired of the ups and downs, the highs and lows, the goods quickly followed by the bad. Today the Neurologist team came in and spoke to us, the one who did all of the talking is the one who initially told us she thought there was a high chance of Rasmussen’s Syndrome. She came in with Dr. Edgar, and another guy I have never seen, they came in to check on X’s progress. While they were satisfied with his progress, she started talking about his seizures after the surgery, it was not good. She talked about how it was abnormal to see that many, and it is a cause for concern, she talked how she didn’t think it was due to the pressure or the surgery, but that he was probably going to need another surgery. Almost the opposite of what we had heard from others who were telling us not to lose hope. The more she spoke the more it hurt, this was a new hurt, this one felt like it was really numbing, numbing my emotions, and that is what I have been trying to avoid. I feel it though, the disconnection, the will to fight is not there as I type this, and I am lethargic, depressed, and sad for my son, tired, tired of this fight that seems so unjust.

I asked her flat out if what she was trying to say is that the surgery was not a success, she said that there was a high percentage that it did not. So I started at that point to feel like I had been kicked in the face by a giant, I felt like this was a losing battle. Deep, deep, deep in my heart I can feel it trying to fight, but all I feel like doing now is crying and feeling sad. I want to scream, break things, punch a wall, something, anything; yet I am just laying here, 2hrs. after being told this, next to a happy X watching “Overhauling” and asking me to “look, look”. He has no idea what they are talking about; it’s probably a good thing.

Sarah tells me it’s okay to feel like this, I don’t feel like it is. She tells me not to forget that she was the same Doctor who thought X had Rasmussen’s, and she was wrong then. She says “Don’t worry about it Dan, Xander and God are going to prove her wrong, I am not going to believe what she said we are going to prove her wrong”. I just sat there emotionless, I told her “I am trying to be cautiously optimistic, but I feel like that is a fool’s game, like I am setting my heart up for failure”.

I was in such a good mood because of all the progress we made yesterday, now I am trying to remember that. Dr. Wetjen came in earlier and told us since he was doing so well we could move out of the PICU, that good news seems far gone as well. I keep trying to yell at myself, like "Get over it, you need to press on"; at the same time I really want to make sure I am not stuffing my emotions

How many times can I tell my heart not to worry, and it listens, I feel like it is not going to listen this time. I am not doing facebook for today, maybe tomorrow, I don’t even feel like doing this, but there is that small part I mentioned that still wants to fight. The part that feels like weeping all the time is strong right now, I feel depressed. It is so stupid, I read my own words from other post, I can see the encouragement from others, and yet I want to stop fighting? I was up praying over X last night, maybe I am just tired, maybe I need sleep, I just do not want him in that much pain again, ever.

They say that if his levels are high (with meds) then that is the only thing stopping the seizures, if not there is still a chance he is fixed, a small one. X and I just got up to go pee, I asked him if he wanted to try and walk, he said “Um hum” so we did it, he fought his way to the bathroom, about 12 feet away. I held him as he weakly but courageously limped in, I can feel God telling me “That is how I am with you now” I hope that is God, I hope so.

I am sure that this comes down to something in my life that I need to fix, like wanting to know everything right away. I just want to know if this worked or not so I can move on. I do not want to feel like this, this helplessness to fix my son.

Lord, you are mighty and able to do wondrous things, I lay it all at your feet, it is yours. This battle belongs to you; If you tell me to fight, fight I will If you tell me to stay still, still will I be My son back to you I give, the father of all Lord the enemy lays in wait and attacks in the shadow Be my vindication, strike them down with your sword I need you Lord, Be our strength, our hope I praise you and all you do. I speak of your amazing love and your infallible truth. I sing praises of the works of your hands. In my weakness carry me, ignite the flame that burns within.

David said it best when he would simply say Help Lord.