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.

Sunday, June 12, 2016

I am writing this blog update as I sit on a delayed plane waiting to leave for Houston. So far the plane has been delayed 2 hours. Al least the view is beautiful here in Denver. I spent the weekend with Ben in Colorado. Our time together was bittersweet. We have not seen each other for a while. Ben has been struggling with significant physical and  mental health issues. After 2 years of health and stability, life became unpredictable. Ben was unhappy and frustrated. The frustration manifested in troubling behaviors that Ben seemed powerless to curtail. The wonderful professionals who run the TBI home where Ben lives, stuck with him through thick and thin, but they were at a loss as to how to help him. Services, medical and psychiatric, are a constant struggle for people who struggle with TBI. As soon as “brain injury” is brought up, doctors and hospitals back pedal as fast as they can.

Ben spent days in an emergency room holding unit until an advocate convinced a hospital to admit him for treatment. Ben is now home and better. His medications have been adjusted appropriately. His physical health has suffered. His cognition is not where I would like it to be. I  am looking forward to lifestyle changes implemented by Ben and the home where he lives to help in all these area.

Ben and I spent time working on a new plan together. We walked and talked in the beautiful Colorado scenery. He has goals. He wants to be “ himself” again. He told the manager at Panera Bread restaurant that God saved him for a reason. I watched him speak kind words to a family with a fussy a baby at a restaurant. A family from his church whose adult son is wheelchair bound with a degenerative muscle disease remembered Ben’s smile and kind words. They took the time to tell me. Ben loves music, cars, and people. His smiles are priceless. We have been down this road before. I refuse to give in to anything but hope.

I rarely refer to the rest of our family in this blog, but this time I am breaking that unspoken rule. Our youngest son, Jeffrey,  a 23 year old graduate student, came down with bacterial endocarditis in April. The infection made him dangerously ill, damaging  his mitral heart valve. Jim and I were pulled into a vortex of critical care medicine, moving  through 3 separate hospitalizations, one ambulance ride and 6 weeks of home IV antibiotic therapy. Open heart surgery was necessary to repair Jeffrey’s defective valve. He is currently back at school and doing well.

As the diagnosis and treatment of Jeffrey’s heart failure unfolded, God laid out the answers to every question. Ben’s world fell apart in the same season. Other family crisis situations added even more unexpected stress. Jim and I had our practices to run and our grandchildren to care for. Our family was hit with issue after issue with no time to breathe or recover. Our son, Patrick, is to be married this month.  Why was this happening now? We learned once again that God carries us and He is faithful. We learned that was no other choice but to let God fix it. Just like with the Israelites in the wilderness, “He opened the rock, and water gushed out; It ran in the dry places like a river.” Psalm 105:41. Because He is enough.

God will care for Ben. I absolutely know it. He has done it before. It will be good.