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.

Saturday, April 27, 2013

Hello friends. Much has happened since my last update. Ben's progress in recovery has improved in several ways, but Jim and I have been faced with many challenges in obtaining good care for him over the last few weeks. First , the medication plan initiated at the Touchstone neurorecovery center seems to be working. Ben is less sedated, more verbal, and happier. His gait is much steadier, needing little support when out of the wheelchair. Jim and i were able to take him on his first car trip outing; lunch at Sonic and a short shopping trip to Academy. Ben's comments,"It's fun. It's radiant, you know? I get to go to Sonic and order from the regular menu. I feel anticipated about that!". He followed up with, "Do we need gas yet? I'll put gas in the tank because my dad deserves it."
It was a beautiful day for a drive. Sam, a long term friend and mentor from Heartlight ministries, visited afterward. The day was beautiful.
The struggles have been with follow up care for Ben. Despite all efforts, our insurance company discontinued coverage for Touchstone. After panic and a few tears, it was time to remember what this journey with Ben has shown Jim and I. God has this journey in the palm of his hand. God has orchestrated everything about this, so why would He stop now. I was able to rest in that assurance. We are still in the struggle, but God is providing stepping stones and a way out. Through a friend who is a neurosurgeon, I called Dr. Ralph Lilly, a neurologist with over 40 years experience in brain trauma recovery. He drove to Touchstone to assess Ben. Two weeks ago, I took four days off to find care for Ben. My efforts yielded absolutely nothing. Kim, my sister in law and friend provided help with navigating the waters of obtaining benefits for Ben and suggested we call a facility in Austin, Marbridge, It seemed to be the answer and Ben was there for two days. We picked him up from Marbridge Thursday night. At this time other opportunities, (perhaps even more therapeutic) are opening up through Dr. Lilly, who continues to be an amazing physician friend. God has, through Marbridge, put many new options in our hands. I have also had the unexpected opportunity to develop a relationship with the CEO of a recovery center that would be great for Ben later in his recovery. I believe God is arranging something amazing. I am walking these "stepping stones" with a sense of peace that God knows where we are going because I certainly don't. Please pray for Ben's healing and that the care he needs shows up soon.
As I finish this update, i want to share some of what Ben said to me a week ago. Ben is struggling right now with fear, difficult behaviors, receptive and expressive language problems,, problems with personal care, and amnesia. I asked Ben if God talks to him. Ben said in a "flicker" of clear speech, " Will it happen for me? Where is He? (perhaps God?) Will you ask Him to appear for me? When will He appear? Can you please pray I get believed in? Sometimes I don't believe I get believed in. Mom, say bless you." BLESS YOU, BEN!