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, January 4, 2014

 We hope and pray that the new year is full of healing and hope as Ben moves into the 19th month since his traumatic brain injury. Ben continues to work hard in the therapeutic program at the neurorecovery center. Although he is able to do many things well, Ben's significant memory, behavioral and anxiety problems are a barrier to him living independently.  Jim and I are currently being faced with struggles for appropriate care as the January discharge date from the neurorecovery draws closer. Ben was able to come home for Christmas. He had not returned home since the injury. It was a joyful time with many bittersweet moments. Ben wanted to stay home. He isn't ready.

Ben's level of function and his sweet heart is a gift. I shed a few tears at the end of the visit because this journey, which has seemed so long, is actually just beginning. Sometimes it is overwhelming when I think of what is in front of us in the midst of our chaotic lives, until I remember that God promises to "make our paths straight."

The next plan for Ben is to move to an assisted living facility, hopefully in a home like environment, specifically geared toward traumatic brain injury. This would optimally involve more independent living away from a hospital or recovery environment. It will be important to have a instructional day program in place. Ben's doctor in Houston, Dr. Lilly, has often mentioned that the regenerating neurons in Ben's brain have to be continually stimulated because they " don't know where to go". How to structure this environment when residential  neurorecovery centers are no longer an option, is a very difficult problem in the state of Texas.  Jill Bolte Taylor's book, My Stroke of Insight, is about her recovery from a ruptured brain aneurysm. It took 8 years for complete return of brain function.  Ben cannot live in a hospital environment indefinitely. He can't come home yet, and he needs a life.

Jim and I have learned much. Texas is unique. Ben has private insurance and Texas medicaid. Jim and I are willing to support Ben as he recovers, but the cost of care is unbelievably high. Even if we paid "fee for service' for the level of care Ben needs, there is not one option in the state of Texas that we can find that is a good fit. Texas Medicaid would help if Ben hit the truck before his 18th birthday but not after. Private insurance doesn't cover assistant living level of care. Because traumatic brain injury is not excluded from state insurance coverage in other states, we are learning that other states have more opportunity for living and recovering. I believe God is moving us toward one of those opportunities. The door seems to be opening toward a solution once again. I would appreciate any prayers to help "turn the darkness before us into light".

As I am writing this, I am answering numerous text messages from Ben. He carries an iPad mini every where he goes. One result is prolific text messaging. Ben also uses the iPad  to record things he knows he will forget, listen to music and to take and sent photos. It blows my mind that he can do all these things. His sense of humor is great. Tonight, in conversation, I reminded Ben that he was terrified of sharks when he was little. The response was," Hahaha oh yeah! I was a little dorky Benny boo!?!?" Ben is worried about his future, but he has not lost his joy. We have not lost our confident expectation that this will be good.