Jim is in Colorado visiting Benjamin this weekend. Ben has been in the hospital for 89 days. Initial admission was for a minor surgery to repair his brain shunt. The distal tube draining in his abdomen was up against the bowel.. easily fixed. The behavioral hospital where he was recovering took the opportunity to refuse to take him back, reasoning that Ben is too medically complicated to be readmitted. He is medically stable at this time. Benjamin's brain function, however, has not recovered since the incident in July when an inappropriate discharge from a different hospital after brain surgery resulted in four days of continual seizures. All of Ben's medications were inexplicably and abruptly stopped as a result of this disastrous discharge. Status epilepticus was the direct result. As mentioned in my previous post, the seizures stole much of Ben's progress made since his brain injury in 2012. Although Ben has not recovered, he is making some progress. He does not need his wheelchair. He can handle self care and calls us on the phone often. He listens to his CD collection and watches movies and sports. Ben's memory is severely damaged. He doesn't know where he is most of the time and his behaviors have been worrisomely aggressive. We are back at the beginning, a "do over", like Ground Hog Day. I have had a few rough moments looking at the picture in front of us. At this time there are no discharge options for Ben's care and he cannot be cared for at home.
It is easy to be in despair in this world when you forget about God's unseen Kingdom. At this time I am focusing on the unseen. I am not looking at this storm. I am looking at God. In His Kingdom these insurmountable problems are solved. In His Kingdom Ben is whole and healed. God's love is holding us in the palm of His hand and we have nothing to fear. I see peace and refuge in this storm. The more I look up, the more I know God is with us. The solution to our heartache is coming and what is in store will be amazing. The lesson in church last Sunday was from John 6:57. The Amplified Bible says, "Just as the living Father sent Me and I live by (through, because of) the Father, even so whoever continues to feed on Me [whoever takes Me for his food and is nourished by Me] shall [in his turn] live through and because of me." God is giving me peace through His spirit and by His grace I am nourished.
In the early days of Ben's injury, I learned to look for signs of God's hope and provision in the midst of struggle. These "flickers" of hope allowed me to rest in the knowledge that God was working. In spite of Ben's current set backs, there are many of these "flickers" even now, each and every day. An advocate, named Teddi, who knows Ben well has stepped forward to walk along side of us. She is an expert in brain injury. Teddi hired a behavioral brain injury attendant to work with Ben 4 hours each day. A new medication was started a month ago and seems to be working. Ben has a positive, bright, compassionate case manager at this hospital who has been unrelenting in her search for a solution for living options. I truly believe the doors will be opening soon. I have prayed for only positive thoughts to live in Ben's head, for anger to dissipate and for him to turn to God even though the brain injury limits his ability to think. In the past 2 weeks, all of these things are starting to happen. As a result, Ben is now allowed to go outside and enjoy the hospital courtyard. Colorado has been sunny and beautiful. The freedom has made such a huge difference in his attitude. I believe my next post will list new miracles. It will be good.
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.