Jeffrey and I visited Ben this weekend. As usual, he was anxious for us to get to the house where he is living. He tells me that he wants me there to talk about plans. These plans always involve activities with the family. Even when Ben needs a bathroom break he says, "Please don't move, mom. I still have you close to my heart." There are some subtle differences in his cognition since my visit two weeks ago. Ben is much more aware of his appearance. He is asking for collared shirts and khaki pants. Ben also is handling many personal care issues, like shaving, with very little help. He continues to have attention problems which affect his ability at times to participate in therapy. He often confuses past, present, and future events into a statement about what is happening currently.
I spoke with Dr. Lilly, Ben's Houston neurologist, about these issues today. Dr. Lilly said that any changes in the areas of memory and attention are encouraging. He believes the Ben we will see is a year will be a very different person. Dr. Lilly is an expert and I believe him. Please continue prayers for attention, memory, and rational thought. I know Ben is moving in a good direction.
Jeffrey, Ben and I played Zingo (similar to Bingo) together. He was able to finish the game without much redirection. This is an improvement. We worked on remembering the year and details of his life since the accident. I am seeing "flickers" of memory when asked specific questions. Several months ago, I made photo flashcards for Ben specific to his interests prior to the injury. Ben was able to quickly name and sort items associated with hockey, snowboarding, camping, hiking etc. Jeffrey told Ben, "Better start working out again or I am going to get all the girls." Ben responded to that with a smirk, rolling of his eyes and a "yeah right". It was great! I loved seeing a bit of his old personality. I asked Ben what he would like best about coming home again. He said, "I want to be open and free and fearless". I then asked Ben what he will be working on this week. Ben said, " to focus, educate myself, and control my moods." Exactly right.
As I walk this phase of life watching my son's recovery, facing fear and worry can be consuming. Just when I am in a place of freedom from fear, it seems the battle starts again. What will happen in the future? What will happen if insurance disallows this recovery center? How will we care for Ben? Will he get better? Will he get well? Are we doing everything we can for him? I can tell you that each and every time God has freed me from my fears and delivered peace. He has all of this in the palm of his hand. John Piper writes about the Biblical strategy of coming out of doubt and discouragement noted in Psalm 77:11-12. The verse states,"I shall remember the deeds of the Lord......." I believe that God honors the conscious act of remembering what He has done in the history of His people and what He has done in our lives as well. John Piper says that this is the fight of faith. Ben's story is a testimony of God's provision, healing, guidance, mercy and love. God promises that peace "shall garrison and mount guard over [our] hearts and minds in Christ Jesus". Php. 4:7b It is true!
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.