I have changed the title to this post. It was “What the hell is going on” After hours of praying I felt the tug to change this.
It is 8:40am and Sarah and I are sitting in the room waiting for the neurology team to come in to talk to us. The very thoughts of “Did we do all this for nothing? Is all we are going to get out of this experience a huge scar, missing brain and a pissed off boy?” send a rage through me that burns to the very core of me. My sole responsibility as a father is to keep my family safe, and raise them the right way. Last night my little 5 year old boy looked at me and said “Daddy the doctors hurt me”; at the time I could accept that knowing that it was for a greater good. Is that greater good all gone? Have we made the worst decision of our lives? Is it possible that I missed Gods voice?
With all that is in me I want to take this away for my Xander, we took the path we felt would be best, covered it with a multitude of prayer from family and friends, to people that have only heard our story. What do we have to show for it? Outside looking in one would say “Stay strong, hold onto the knowledge of God, he is faithful.” I know, but put yourself in our shoes; your baby who you have loved, protected, taught, and watched grow older is in pain, so much pain that he can only whisper. He aches and is frustrated; desperately trying to be the independent boy he was 4 days ago. He tries to lift himself up, wants to “Eat food like you”, and is saying “I want to go; I don’t want to be in Minnesota”. His face is hardly the sweet face we have known for years, his head now bears the mark of a decision that we made for him. A decision we are not even sure has worked, he is like this because of us.
I am holding onto the promise that God is good, I do not want to wait until glory to see him whole. This thing has been so emotional; I have always been a very logical thinker/processer, only now I am reaching for that, trying to push the emotional thoughts aside so I can get a grip. Sarah is lying on the bed, X propped on her lap sleeping.
Have faith heart, be still and know he is God. Stand firm on the promise that God is not unattainable, but right here, holding us. Lord, I feel like this continual praying is a lack of faith on my behalf, like I do it to make myself feel better. I believe that you heard us all the first time we asked for healing, I understand that there are times we intercede, but I am tired. Help me not to listen to the thoughts that you are not listening, I know you are. Help me lead my family through this, I look to follow you, but I am not sure where you are. Help us with our doubt, and our confusion. Help Xander with his brain, make it whole, ease his pain, and help his limbs and face. Give us rest, but if you can only give us one thing, heal our son, your son. I am trying to be faithful with the gift you gave us 5 years ago; 5 years ago I promised you that I would watch over him, and raise him in the knowledge you have given me. I told you I was going to do my part here on Earth; I am having a hard time right now.
Family and dear friends, we are so undeserving of you love and faithfulness to our cause, and yet God has allowed us to be blessed by your love. I know I have been repeatedly asking for help, I at times feel bad about that since I am not in the habit of asking for help; but once again I am asking. There is a small part of me that, by desperation or faith (At this point I am not sure), feels like this is the last offensive from the enemy. Daniel prayed once for an answer and it took 21 days until an angel gave him his reply. The bible only tells us that Daniel prayed and fasted those days, it says nothing on how he felt. If I could picture those days leading to the answer, I think the Daniel of today would say something like this. D: What the heck taking so long! I’ve been praying and praying and praying, yet three weeks into this and still no answer! Is this some type of joke, am I praying so I can be ignored? Seriously, I have been faithful, what is wrong, what’s taking so long? Then in one of the most amazing ways the messenger angel arrives and speaks the word of God. Daniel falls to the ground unable to speak until the Lord gives him strength.
I think that may be happening now, I could be wrong, but I hope for that. As we waited for the Dr.’s Sarah held onto X, I was lying next to them. She then started quoting scripture: For I know the plans I have for you, Fear not for I am with you, Rest in me, the Lord is faithful, and so on. This went on and I could feel the hand of God touching us. I felt like I heard God say “This is why you hide my word in your heart, for times like this”. As we walked with X to the CT, we prayed as he grimaced with every bump, and moaned with every stop.
We sit in our room now, worship music playing, X and Momma sleeping. I hope there are no more seizures, I have faith, I believe, it cannot be due to my lack of faith, trust me. If there was anything I had to do for my boy, I would. When we hear more, we will let you know. The post will keep coming, because we need the prayer that follows it.
As I am about to post this X just had another seizure. I am going to fast, I am not telling you this to boast, but to ask you who read this to do the same. Whether it is a day, meal, or thing, this is the last thing I know to do. It is completely out of our hands, so I am going to plead my case to God.
Dr. Wetjen just came in, a great doctor/man, he said that the brain is complicated and that there are no sure answers to why this is happening. As we were talking X had another seizure, I lost count I think we are on 15, he said that it seemed as if it may be coming from his right side of his brain. Their will be more talks, and possible solutions, maybe another surgery, or who knows. I am done posting, God I am confused, why?
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