Next month will be the second year anniversary of Ben's accident. I have learned first hand in the last two years that the road to recovery for patients with a traumatic brain injury is often frustrating and long. In the beginning when I didn't know if Ben would live through his injury, I read of the frequent problems of others affected by TBI. The list seemed insignificant at the time....after all we were in a battle for Ben's life. Now I "get it". We are smack dab in the middle of what seems to be common struggles for those recovering. Understanding the mental, physical, and behavioral deficits, learning coping techniques and promoting improvement for these deficits, and looking for the tools to achieve a meaningful life are daily obstacles for us and for many others.
The first matter involves Ben's medical condition. At the beginning, any sort of functional survival seemed unlikely. I grieved for the loss even as hope was ever present. Physical recovery began with purposeful movement and speech. Although Ben was walking with assistance 3 month post injury, giving up the wheelchair completely became possible June 2013. Today Ben is totally mobile. His balance is off when fatigued, but this doesn't slow him down one bit. Last week Ben started walking on a track as a way to "work out". He is walking at least 6 laps each day and loves including others on these walks. Socializing with others on these walks feeds his spirit. I can hear smiles in his voice. Ben's seizure disorder is stable on medication. Persistent physical deficits include a profound hearing loss and some problems with the visual fields in his right eye. Ben handles all of his grooming and activities of daily living. He does laundry and household chores. He stays in touch with friends and family with a cell phone and is able to use a computer. His speech is still described as paraphasic (the wording may be close but not exactly right). Sometimes I love the word choices, however. I had admonished him for a behavior last week. Ben responded by telling me that he would be "getting the wrinkles out soon." Yesterday Ben sent photos of the batch of cookies he had baked from a recipe he found on the internet.WOW!
Memory and reasoning remain a huge problem. Benjamin's CT scans of the brain reveal evidence of mild hydrocephalus (extra fluid in the brain ventricles for which he had a shunt placed), evidence of diffuse nerve axonal injury from early high pressures in the brain after injury, and severe diminishment of brain tissue in the right frontal area of the brain where he had bleeding. These injuries manifest as poor memory and difficulties with judgement. He will tell the same stories over and over again. His memory can be uncannily accurate at times, but is extremely poor with recalling the course of his life since the accident. Ben's behaviors can be very difficult when frustrated. This has been the main obstacle to finding the right environment for recovery for him. Brain trauma expert, Dr. Ralph Lilly, has told me many times that keeping Ben in the right environment is key to moving him forward. This CAN get better. Ben knows what he needs to do, but setting emotions aside to deal with frustration appropriately is tough for him. This is an area where I am asking for healing prayer.
The second issue has been Ben's road to appropriate care. This is one of the many places where I am totally in awe of what God can do. It can be one of the saddest aspects of caring for a loved one with a TBI. The problem is......there are few if any options when the medical condition has stabilized and the therapies available are seeing slower results. That is when insurance stops covering rehabilitation. In Texas there is a program called DARS that may cover for a few more months. When this funding ends, the choices are to go home or into a nursing home. Neither one of these options were a possibility for Ben. For each and every stage of Ben's recovery Jim and I have had provision and direction. I believe that this is miraculous. Recently after encountering dead ends in Texas for care, we moved Ben to Colorado. The first brain trauma group home didn't work out, but the resulting struggle has resulted in Ben being declared a Colorado resident with the funding necessary to keep him in the best environment. We have met WONDERFUL professionals and new friends who are helping lay out the plan that Ben needs. I could never have done this on my own. Colorado has the programs that we cannot find in Texas. God led us here for a reason.
The third issue is Ben's emotional stability and health. Even though I have listed the struggles, Ben's brain is healing. We see him becoming more aware of what he should be doing with his life as a 25 year old young man. He knows, but can't figure out what he needs to do to get there. He sees himself as the same person he was before the accident, only better. Ben know that he was saved from death for a reason. This has made God even more real to him. In his mind, he should be back in college and involved in family responsibilities. My heart aches when I have to tell him "not yet". Every night I have to tell him why he can't come home. He needs to work out how to stop difficult behaviors. He needs to have continual stimulation to improve memory. He needs to relearn many things . He need to have supervision. He needs to have a satisfying, meaningful life. None of these things can happen at home right now. I told Ben that our timing is not God's timing. I do believe that God can and will heal him. Even this struggle is evidence of the changes that are occurring. Thank you for following this very "wordy" journey. Thank you for your prayers and words of encouragement. It will be good.
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.