Dear Prayer Warrior,
Of all the medical fields relevant to us Neurology brings the most honor to God. Talk to any Neurologist and they will tell you how frustrating and confusing the human mind is and that they surrender constantly to the idea that no one knows. For me, that brings great glory to the Creator. Within me it draws out reverence and the fear of the Lord. God holds the scientific boundaries that these very smart doctors keep running into.
In our experience, the field has few treatments, or remedies for the problems it identifies. Neurologists remain in research mode classifying and considering variables with each person. In Anna’s brain Neurology has identified: 1 Brain Damage to multiple cortexes and the basal ganglia, 2 Neo-Natal seizures, 3 Periventricular Leukomalacia, 4 Hypsarrhythmia, 5 Polymicrogyria, 6 Electrical Status Elipitcus in Sleep and 7 clinical seizures. None of these conditions have a cure, although with time Hypsarrhythmia is outgrown. The truth that every Neurologist sees but has yet to confess is that a person with those labels ought to be seizing constantly and/or be 6ft under. Their brain wave readings seem to describe a person plagued with a monstrous brain; I assure you Anna’s appearance is pleasant, beautiful, full of God’s mercy and grace. Why does Anna seem so free and absent of seizures? It’s for the glory of God. She has, and always will bring people to the Lord in one way or another.
In our experience, our Neurologists have rough bedside manner. What they know to be black and white, we don’t automatically see as black and white. They introduce terms and explain things that are so accepted by them and foreign to us. Usually, it’s a team of three that spend time rewording each other’s thoughts until the listener either stops trying to understand, thinks they understand, or the neuro team cannot find any other way of explaining. All questions will be answered. Neurologists are perfectly clear and there usually is lots of silence as I try to understand. They leave before I want them to. That happened today. Which catapulted me back to the longest most difficult conversation in my life which was to understand what it meant for Neurologists to diagnose Simon as Brain Death (not brain dead) and the legal implications that come with it.
In focusing back on Anna, it’s my turn to share what I think they taught me. Her sleep was deep and long, she revealed much more than any of her previous EEG’s. This one showed consistent levels of spike-wave discharges in her awake state and sleep state thus removing the diagnosis of ESES and not qualifying her for the Valium treatment. For about 30 seconds I thought this was great news, then they shared that her brain is now showing excessive neurologic activity, 80+ spike wave discharges per minute during her awake time as well as her sleep times whereas before it was minimal while awake. Their catch phrase they kept on coming back to was “we treat the person not the EEG.” So that means that on paper Anna should not be able to have much cognition, concentration, and even pay attention. But if you know Anna, that girl is with it.
The temptation to be anxious about this is so strong. Like
trying to figure out what I should do differently because of the heavy new info.
Or worse, images of Anna seizing in my head. This is when I wept and called my bride with the news.
Shortly after I took the discharge papers and walked out of the hospital feeling defeated. As I paced quickly to the front doors, the deja-vu moment was felt. I remember heading to those same doors after losing Simon with great speed too. Once outside, things changed. God brought the song “Turn your eyes upon Jesus” to me at that moment, I sang it in a shaky voice. Next came what seemed as a righteous anger towards the godless & hopeless ways doctors talk to me about Anna’s condition and how I wish I would have been less sheepish about offering them the remedy I know of in Christ. I kept on kissing Anna’s head as I loaded her into the van. I said, “Anna, it doesn’t matter what they said. You are a gift to me and am going to take the best care of you I can.” I had a good cry and prayed before I left the parking lot.
By God’s grace Anna may never show the things Neurologists expect to see just because they got a peek at her brainwaves. I realize I have been sharing some frustrations toward them, I don't mean to pit myself against them. I've been hurt. I know they want to help and be on our team. Also, I'm sure that there are God-fearing ones that know the Bible as truth. I appreciate that doctors can make our prayer requests more specific. I know the Maker of the brain and He gives love, mercy, grace, hope, compassion, comfort, and righteousness in the hardest of things to live through.
I want you to know that last night God’s providence for me was a magnificent victory! I sat alone peacefully watching the snow fall from the 6th floor of the hospital while eating Sushi with full knowledge that in doing so, I am helping the gospel reach the oppressed, poor people of Myanmar granting eternal hope and a solid Rock to stand on.
Thank you for going to God and praying for us. We are home. We had terrific chicken and dumplings for dinner and sang some more in worship. It was wonderful being reunited with Lindsey, Victor and Renee.
Enjoy the celebration of Jesus’ resurrection, I’m so looking forward to it. There is nothing better to focus on in the world!
Nic
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