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.

Lessons From The Journey

Flickers of Hope for October 2014

Moses came down from Mount Sinai carrying the two tablets of covenant law inscribed by the finger of God. (Exodus 31:18)  As he came near to the place where the Israelites were camped, his anger blazed. The Israelites had created an idol in his absence. He cast the tablets out of his hands. They were smashed to pieces. It had been a long journey from Egypt through the wilderness. How could God’s people forget the miracle of God’s deliverance, guidance and provision?  As he journeys past that place of darkness and discouragement, betrayed by his people, Moses asks God to show him His glory. Moses needed to see his God. God then places Moses safely in the cleft of a rock (Exodus 33:22) and gives Moses a glimpse, a flicker, of His glory.

The word, “flicker”, means to appear briefly. God showed Moses in that moment His goodness (Exodus 33:19). In that moment, God proclaimed His name, “The Lord”.  For that moment God shows Moses who He is; compassionate, gracious, slow to anger, abounding in love and faithfulness, and forgiving. (Exodus 34:6) The “flicker” was what Moses needed to keep moving. Knowing his God was everything to him.

In the years since Ben’s accident, I have been sustained by “flickers” of light in this long, dark journey.  For a moment, God would reveal a miracle, when the path looked impossible. A door would open. An answer would come. When Ben’s prognosis was discouraging, he would do something that defied explanation. As a physician, I am aware of the poor prognostic signs for full recovery with a patient as severely injured as Ben. I “know the drill”.  Then…again, for a moment, even now, I see something new, something Ben shouldn’t be able to do. I see a flicker of hope. I see who God is and I rest in His sovereignty.

The Apostle Paul in 2 Corinthians 3:13-18, tells us as believers in Jesus Christ, we can be bold in approaching our God. Seeing God’s glory was reserved for a chosen few in the Old Testament. As New Testament believers, beholding the glory of God is available to everyone. I believe God reveals himself through our struggles. I have seen it.  God manifested Himself before Moses in a way that Moses had never seen before. God is fully capable of doing the same for us today. Flickers of light in our days of darkness tell us.

God is there.

God is working.

It will be for good.

The Struggle for Care  2013

Over a year has passed since Ben's injury as I write this. Much has happened in his recovery. We have seen medical set backs and medical miracles over and over again. I knew that the odds were against Ben. He beat the odds in surviving his injury. He is beating the odds in his recovery. It is unlikely that Ben will ever live independently. As a physician, I knew the obstacles to medical recovery, especially in the early days of Ben's injury. What I have been less prepared for are the barriers to optimum neurorehabilitative care as Ben moves toward a functional life.. I have also had to learn about the chronic nature of traumatic brain injury with it's ever-changing set of problems.

 Ben has medical insurance. This insurance policy covers long term rehabilitation. Ben has Medicaid insurance because of his disability. He qualifies for services under the Disability and Rehabilitative Service department (DARS) for the state of Texas as well. Intensive Cognitive therapy is absolutely essential for Ben at this time. His entire life potential can be adversely affected if denied services at this crucial time in his recovery. Insurance is trying to do exactly that, even though it is against medical advice and ignores the fact that Ben meets their requirements for objective improvement.  Although there are many rehabilitative facilities qualified to deliver this care, none of them accept Medicaid. Most do accept DARS funding, but this agency ran out of money this year and none is available for Ben for several months. When available, DARS may fund him for 6 months. The cash price for rehabilitation facilities is between $750-$1000 per day. Although we have some funds to spend on care for Ben, this is cost prohibitive. A long term care step down facility specific for brain trauma has evaluated Ben and turned him down. A trial several months ago at a nursing care facility was deemed unsuccessful after 2 days. A nursing home is not appropriate.  Ben is alert, active, walking, communicative and able to do many things. He requires 24 hour supervision and can't be safely maintained at home for that reason.

Exploring the option of Ben moving to a group home where residents with similar abilities live in a home like environment seemed promising.  Perhaps intensive outpatient therapy could be successful with the right living environment. I learned that none of the options in our area are possible because Ben had onset of his "developmental" problem after the age of 18 and doesn't qualify for services under MHMRA (Mental Health and Retardation Department). This is the only way Medicaid will help pay for group home housing. One group home agency is currently checking into a cash price for Ben. The application is 40 pages long and Ben many be rejected because of some aggressive behaviors noted earlier in his recovery. Ben has had no problems in this area for months.

Unfortunately the struggles that we are going through are not unique for families trying to take care of loved ones with brain injury. I can only imagine the heartbreak experienced by those with no medical insurance.  I have been frustrated by case managers in excellent facilities who have no referral ideas for us. I have learned that there are few options. The safety net that exists for other chronic illnesses seems to disappear for TBI survivors.

 Stories of parents having to leave work to care for their kids at home with sub optimum therapies are common. Betty at the Texas Alliance for Brain Injury said that often TBI victims are in nursing homes, when appropriate treatment would have made a huge difference. It is heartbreaking. So for now, I am fighting to maximize Ben's time in his current therapeutic facility while desperately looking for a discharge plan that will give him a quality life. Ben's recovery has been breathtakingly amazing.
God has a purpose for Ben's life. I want him to be able to do everything needed to achieve that purpose. To follow will be my working list in the search for care options. I do not claim to be an expert, just a mom on the journey.