My visit with Ben in Colorado last weekend was bittersweet. He has made progress in some areas but discouragingly slow progress in many areas of struggle. I was reading this morning about the common problems for patients recovering from severe traumatic brain injury. Ben has everything on the list. Troubles with problem solving, impulse control, and self monitoring, short term memory, learning, and language retrieval are all there. Ben doesn't grasp the implication of a given action and his impulsivity may show up as verbal utterances, snap decisions and poor judgement. His irritability and emotional instability is much better on medication which is a blessing. The article on TBI sequelae perfectly states these changes by stating "an individual with TBI may have a vague sense that he is 'not who I used to be' and yet struggle to define the specific ways in which his personality differs from prior to the injury."
The article goes on to mention that for many TBI survivors, the ongoing needs for support are not being met. Through the grace of God that is not true for my son. He is in a marvelous place.
On a positive note, major struggles with behavior, emotions and impulse control are much better since the last blogpost. He is responding to redirection and truly seems to want to improve his social awareness and appropriateness. His desire to move ahead with his life is strong but it is difficult for him to plan which is a huge barrier to progress. He doesn't remember the interests that he had prior to injury unless reminded of them. The staff where he lives questioned me this weekend extensively about what his passions were prior to injury. He will have one on one time with a staff member to pursue something different starting next week. They are planning to increase time in the gym, plan more camp outs, and look for volunteer opportunities for Ben. My prayer for Ben right now is to exercise his mind and body. I want him to read and learn. I want him to become physically active again. I want him to have a hobby and a passion to pursue on his own. I want him to actually use his computer for growth instead of letting it sit there.
A friend asked me to question Ben about what his life has now that it didn't have before. Ben said "God". He said that he is close to his Savior and talks to him daily. Glory! If I had to answer the same question about Ben's life, I would say "love". Ben is in constant contact with me by text and phone with messages of encouragement and love. He loves his family unconditionally. This weekend we frequented a hair salon, restaurants, an ice-cream parlor and walked through parks. Ben witnesses to others if there is opportunity about what God has done for him. He talks to every person he meets with a smile on his face. Ben spoke via FaceTime with a neurosurgeon who cared for Ben early in his injury.This doctor has become a friend and said he was going to send Ben a book to encourage reading. Ben replied, "You have already given me a gift worth a million bucks. Without you fixing my brain, I wouldn't be able to read." The nursing agency director's email to me said, "Our care givers had some neat stories about Ben. He has such a great personality." Ben is closer to God. He has joy and thankfulness. He loves people. He lives for today as our Savior has taught us to live. (Matthew 6:34)
Today I woke to this message from Ben. "GOOD MORNING MOM!!!!Today is Tuesday so please slowdown and focus on a simple/productive day. I love you TONS MOM....It makes me HAPPY that you are the woman the kids (my grandchildren) are watching in their lives. I LOVE YOU EVEN MORE AFTER YOUR VISIT THIS WEEKEND."The injury has taken much from Ben, but much has been given through this journey. God is working. It will be for good. I plan to rest in that.
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.