The purpose of this blog is to show how faith, my professional training and a healthy sense of humor taught me and continues to teach me that Jesus Christ is always in control. I am a fellow learner as this journey for my child unfolds. My wish is that Ben's legacy gives others hope where there seems to be none. It is also my desire that the information I have assimilated with my medical mind and filtered through a mother's heart gives practical ways to deal with this ever-changing chronic disease. Finally, for the many friends and family members who continue to follow Ben's life change after the injury, the story continues.

Wednesday, May 15, 2013

Tomorrow is the anniversary of Ben's injury. One year ago I couldn't even imagine dealing with the list of medical, physical and psychological problems common in young men who survive a life threatening traumatic brain injury. Believe it or not, I would have been excited if someone could have told me the problems  that Ben would be dealing with today. In May of last year Jim and I knew that the chance of Ben surviving the accident was small. The chance of a functional outcome was slim. Today, the list of problems that Ben faces each day can be extremely frustrating. It is long, with many victories and setbacks each and every day.  Ben still remembers little about the accident. He has not cleared "post traumatic amnesia" which is not a great prognostic sign.
He is extremely distractible, asks the same questions over and over again, and has behavioral outbursts from time to time. He has trouble with understanding language and often says things that sound like nonsense. Events from yesterday, today and plans for tomorrow come out in one sentence. He hates to shave. These "problems" are blessings. In this year long journey through hospitals and rehabilitation facilities, we have met many families who have lost loved ones to the same injury that my son survived. We have shared hospital rooms with other patients who are likely to spend their lives in a bed or a wheelchair and non communicative.

The joyful parts of this journey are many. Ben also knows his family. He eagerly waits for visits and talks about us constantly. He asks to go places and desperately desires something more. Lately Ben has called Jim and I several times each day on our cell phones. (How can he not remember the current month but remember our phone numbers?) I never thought I would be thankful for frequent, annoying interruptions.  Ben can read and write. He can watch a movie or hockey game and talk about it. He has remembered how to shower and brush his teeth. He can walk with improving balance.He wants to get better. Jim and I have seen HUGE improvements in his alertness and brain function in the last 3 weeks. It is hard not to laugh when Ben asks the nurse if they have any "squid" to drink or sends his brother to look for "fish seeds" to eat because he is hungry. We treat it as comic relief: often much needed.

As we move into this next phase of recovery, God is placing things I need to know in front of me. The list of topics in my textbook on traumatic brain injury can be daunting. The list starts with post traumatic confusion and aggression and moves on to cognitive changes and disorders of diminished motivation, plus more.  Patients can and often do worsen after the acute injury because damage to the nerve axons in the brain which begins at the point of brain trauma and can continue for months, perhaps a year. Regeneration and remapping of these damaged brain neurons takes time...perhaps years. (The way the brain fixes itself.) The struggles are normal. I needed to hear that. I believe it WILL BE GOOD.