Monday, February 8, 2010

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.


  1. Thanks so much for the update. I know it must be hard to keep everyone informed, but I wait for each little piece of info regarding that little man... Tears... I just have tears. But I believe Sarah. Many times those docs don't know. And the brain is tricky. And they don't know how incredible little Xander is, right? He'll prove them all wrong. Still praying... Give him a big, sloppy raspberry.
    Love you so much.

  2. This post brought me to tears.
    I'm so sorry that things are seeming worse today. But your faith is amazing, and so is God's love, He will see you through this, no matter what. Still praying for you and Xander and for a good outcome. It's far from over, keep being strong and trusting God. Once again I want to emphasise how much I admire your faith at this time, it is truly inspiring.
    Thank you for managing to keep everyone updated, I know this must be difficult for you.

  3. Dan and Sarah- Yes, devastating news. But hold onto this... In your post you said Xander fought his way to get the 12 feet (which is very far for him right now) to get to the bathroom - and he did it. Then he was able to go potty... Realize how HUGE that is considering all his little body has just been through. I know how bleak things seem, I really do. I am so sorry for you all. None of us know what God has for Xander around the corner, which I know to you doesn't sound that great right now, but take it from one parent who has been to hell and back. We will do the fighting for you. Sending prayers and my heart your way...

  4. Psalms 42:5 Why art thou cast down, O my soul? and why art thou disquieted in me? hope thou in God: for I shall yet praise him for his presence is salvation.

  5. "The Lord is my shepherd; I shall not want.
    He maketh me to lie down in green pastures:
    He leadeth me beside the still waters:
    He restoreth my soul;
    He leadeth me in the paths of righteousness for His names sake.
    Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me.
    Thou preparest a table before me in the presence of mine enemies; thou anointest my head with oil; my cup runneth over.
    Surely goodness and mercy shall follow me all the days of my life; and I will dwell in the house of the Lord for ever. Psalm 23

  6. I will love You, O Lord, my strength. The Lord is my rock and my fortress and my deliverer; My God, my strength, in whom I will trust; My shield and the horn of my salvation, my stronghold. (Ps 18.1-2)

  7. Dan Uncle Sam here.
    Maria and I have followed the progress from afar. Thanks for the updates.Others may not agrteee but my two cents are:
    I agree it might be good to not facebook or blog for a while. Consider keeping a private journal for a few days.As a veteran of too many hospital visits in my life, not all of which turned out good, the highs and lows are excruciating, highly emotional and some of the most memorable life's (good and bad) experiences.Some parts of that should remain private. You cant "get over it."but have to deal with the consequences. part of the "lessons you didnt want to learn" or never hoped to have to learn. You are involved in a marathon at this point not a sprint. you need to as much as possible try for some rest. Whatever you do or have to do in the future you should never have any doubt that you are taking zanders best interests into account. One never learns from having all the answers.As I was known to say- thanks god but I dont want anymore strength or burdens to bear. We dont get to choose totally. All we can do is see how we react to demonstrate the person you are. Best of luck son. There are a lot of torres' and other people pulling for you guys. In the end it is all about family. love uncle Samuel

  8. IJohn5: 14-15
    14 This is the confidence we have in approaching God: that if we ask anything according to his will, he hears us. 15 And if we know that he hears us—whatever we ask—we know that we have what we asked of him.

    Dan- We need to ALL remember God is so much bigger than all this, and He wants Xander whole and perfect! Stand strong and firmly on the promises given to you! Do not let the devil whisper in your ear words of discouragement and defeat! Take a break from facebook and whatever so you can allow God to bring you back to peace in Him. Let us stand and fight for you! I am standing against an unsuccessful surgery!!!! Complete healing for Xander! I love you guys! Jean

  9. Dan, although it doesn't probably doesn't seem like it, it really is okay for you to feel weak. 2 Cor. 11:9-12 says, "But He said to me, 'My grace is sufficient for you, for my power is made perfect in weakness.' Therefore I will boast all the more gladly about my weaknesses, so that Christ's power may rest on me.....For when I am weak, then I am strong."

    It goes against our human nature to be okay with our own weaknesses, and I imagine that that is even more true for men. But God does some of His best work through our weaknesses. You have been through the mill and back, and you have to be physically, mentally, emotionally and spiritually exhausted and depleted.

    There is an army of us out here who love you and your family, and will continue to boldly approach the throne of God and plead on your behalf. Whether or not you feel up to posting on here or FB, we will continue to pray. And we will not stop until Xander is completely well.

    Please allow yourself to rest in the knowledge that Xander's healing isn't dependent on how strong you feel or how well you hold it together. God is completely in control, and He sees the big picture. He loves all of you so very much, and doesn't take His eyes off of you for one second.

    Love on your precious little boy and enjoy him, and let your family and friends have the privilege of praying on your behalf. We love you!

  10. Dan I don't comment much because I feel like I have nothing worth saying, but I want to say that you are not alone. I know you know this and you know that God is with you. I want to tell you that you have an army of people following you right now. Ready to hold your arms up in your weakness and fight for you- to fight with you. You can rest because there are people in the gap and we will not quite fighting, we will not quite praying. I love you guys and your family has been like family to us. All this to say we are standing with you and our resolution is this, to pray this thing through to the end- to petition the Father till He hears our cries and Xander is healed. I wish we could be there with you- typing all this just seems empty.

    We stand with you man of God, you ARE a mighty warrior.

  11. Dan, I am Josh Olson's aunt. I have been praying for all of you and will continue. I had a very dear Christian friend remind me during one of my trials, that it was okay to cry out to God in anger and frustration. He is the great I AM. He can handle your outburst. I also read somewhere to think of him as the loving Father that He is. If Xander were upset and lashed out at you and spoke harshly from frustration, what would you do? My guess is that you would wrap your arms tightly around him and reassure him that you are there and that you love him and that you feel his pain and frustration. Guess what? God, your loving Father, will do the same for you! He will gather you close and comfort and reassure you that He is with you and that He feels your pain and frustration. Oh, if He could only hold us with truly physical arms. My prayer is that you will feel Him in an amazing way and know that He is with Xander and Sarah and you and the rest of your family. He knows the plans He has for you. Run to Him and hide in the shelter of His loving arms. Praying for you, Cindy Martin.

  12. I just read on Facebook the good news about Xander's blood test results. I am so encouraged. I would say continue blogging/Facebooking because there are so many of us investing our prayers into you guys. As your friends and family we really want to see the updates, and how can your heart heal if you can't come to the people that care about you with honesty? David's "blog" was published for the world to see in Psalms and I'm glad I can read about his trials, all the confliction he felt, and his triumphs.

  13. Hi. I read about your blog through the Nebraska Epilepsy Foundation. We live just 2 hours east of Omaha....our daughter was diagnosed with Rasmussens one year ago and we traveled to UCLA Medical Center to have the right half of her brain removed (hemispherectomy). She is in Kindergarten, doing well and seizure free. I would love to visit with you. Roxanne Cogil

  14. Rox, we would love to meet with you. I am not sure when we will be back in town, but feel free to contact us at we are on FB too if you would rather talk that way. You can find us under that e-mail. I am seriously happy to hear that your child is well, and in school. I am sure X would love to meet her, and talk to her. Please contact us anytime