Hi Everyone,
Today was a good day and an emotional day. Corey had a tough morning. She is still coping with disorientation, anxiety, anger and short/long term memory issues. Caring for Corey with limited nursing has been challenging under these circumstances. I’m hoping that the change of Pharmaceutical companies for Tegretol will stabilize her mode and her memory will improve. The two home nursing agencies we have committed to are diligently trying to recruit new nurses (LPN/RN’s) that have TBI experience to join Corey’s case. With any luck, all the stars will align and we can get off this roller coaster ride…I’m ready for the carousel.
My father called at a particularly difficult moment today which happened to be perfectly timed. He not only talked me off the ledge, he talked me out of heading to the airport! Advocating and Care giving for a loved one is a 24/7 job. There are good days and really tough days. After our conversation, I received a number of daily calls from family, friends in the community as well as notes from our carepage. I would like to express how much we cherish, require and rely on each of you; even those of you who are out of state. It is my prayer that other families are as fortunate as we are to have such friendship and support. I can’t imagine walking this path alone. THANK YOU!
Corey is beginning to increase her steps along her path. Today was a big day for her. Despite her temper tantrum at the beginning of PT; I assisted her and Gillian with a stroll around the island in the kitchen using the walker. If you’ve seen the YouTube videos of Corey taking her first steps, you may have noticed an arm rest (called a platform) which supports her left arm. It forces her hand to open and grasp a handle as her forearm rests on the platform. It supports her stance and her arm. We have been waiting for her left shoulder, arm and hand to regain muscle movement so she can fully extend her arm and grasp the walker at hip height. We also have been waiting for her to gain strength throughout her core muscles and hips to support/shift her weight in order to take steps with both feet. Today was the day!
Gillian stands behind Corey for support. Corey holds onto the walker. My job is to face Corey, walk backwards as I encourage and guide the walker forward for her. I have the best view…I get to watch Corey’s face. Her eyes begin to light up as she feels her body moving the way she intends it to. Her smile starts out small as she concentrates with each step. Once her rhythm begins her smile is illuminated with a contagious energy of confidence, pride, joy and excitement ~ she’s walking again! I find myself feeling a childlike giddiness; I can’t stop smiling as I watch her.
Lap 1 was 30 feet, her record. Gillian asked her if she was tired and wanted to rest. She said, “No, I want to keep walking”. Corey added “I don’t need help”. Gillian asked Corey if she wanted to try removing the platform (a major step towards independence). Corey emphatically said yes. As we prepare Corey, she instinctively opened her left hand to release the handle and made motion to lift her arm off the platform. Gillian and I were shocked! We removed the hardware and asked Corey to grasp the walker with her left hand. As we reached to assist Corey, she initiated the movement to reach for the walker, extend her fingers and tried to position her arm independently. The word shock or surprised doesn’t describe what we observed.
Lap 2 was an additional 24 feet around the island! Not only did Corey have control of her upper body, her hips were straighter and her steps were the most fluent we’ve seen to date. She was beaming…I cried. 54 feet, a new first!
Corey, last October my girlfriend wrote us about a morning program that highlighted a story on a survey that was used to predict successful people. It was a True Grit Survey. She wrote; the amount of grit it takes for you to live in the moment is tremendous. Although you didn’t want to walk this path and it doesn’t help with your daily challenges, you inspire so many with the characteristics you share with Rooster Cogburn, the character of U.S. Marshall played by Jeff Bridges. I forwarded this note to Jim Haynes. Jim is a professional illustrator and new friend we’ve met via our Carepage. Today was a tough and emotional day for both of us. The afternoon mail arrived; there was a package from Jim. He created a poster that will hang in your room for us to read on days like today; reminding us to stay focused even when it’s hard.
(Thank you Karen and Jim, xoxo)
True Grit
•A clear goal
•Determination despite others’ doubts
•Self-confidence about figuring it out
•Humility about knowing it doesn’t come easy
•Persistence despite fear
•Patience for the small stuff that obscures the path
•A code of ethics they live by
•Flexibility in the face of roadblocks
•A capacity for human connection and collaboration
•A recognition that accepting help does not equate to weakness
•A focus and appreciation of each step in the journey
•An appreciation of other people’s grit
•A loyalty that never sacrifices connections along the way
•An inner strength that brings them to their goal