I always begin these entries wondering what to say. It is not that I have a lack of words, it is that there are so many. I sit here at my desk trying to figure out how to organize the chaos running around in my head, how to make sense of my own feelings of utter shattered-ness into some sort of cohesive statement that describes not only how Jamie is doing, but also how I am feeling. I had been thinking about what I might report yesterday when something lovely happened, making it quite easy to write.
Jamie has several different kinds of therapies during the day from morning until evening. Twice a day he meets with the Physical Therapy team who work with him to get his brain and the right side of his body talking to one another again. Although he has some feeling in various spots along his right side, in many areas he does not. Despite this, his therapists get him up standing, work on strengthening his trunk by shifting weight from one leg to the other, balance his weight with one hand on a table so that he can stand unassisted – and, yesterday afternoon, take a couple of steps!
What an accomplishment! It’s almost a week since Jamie has been in the rehab facility, and he’s already taking steps! Jamie was not as excited about it as Jo and I were, because he cannot detect himself taking these steps. Yet the neurons between his brain and leg are indeed firing, otherwise he would not have been able to move the leg. As he improves, the feeling should increase in his leg, making it easier for him to connect the thought to the movement. Unfortunately, I was not there to witness the steps. I have decided this week to go back to work while Jo is here. My job at Disney Interactive allows for one month of paid family emergency medical leave. I want to be careful about when is best to take that time off, ensuring the most benefit to Jamie. After speaking with the case worker about when that would be, her recommendation was to take the time off during the eventual transition from rehabilitation to home, when our home health care schedule kicks off.
Not being at the hospital with Jamie has been very painful for me during the day. All day long I miss him and feel that kind of “punched in the gut” sort of ache knowing that we are not together and that I am not there to help cheer him on. The only relief I have is by knowing that Jo, Jamie’s brother, has been able to stay for these past few weeks and be with Jamie during the day. I know that Jo is a deep comfort to Jamie and is there for him every step of the way.
I’ve been discovering these past few weeks the importance of how healing a caretakers positive mind set can be for a traumatic injury patient of any kind. Each night I read Jamie the messages from this message board, which he REALLY looks forward to. In addition to that, I am reading to him the book, “A Stroke of Insight” by brain scientist Jill Bolte Taylor, who suffered a massive stroke and fully recovered. In the book, she outlines the importance of surrounding the stroke patient with people who are there with positive energy.
This morning, I happened across this from the Buddhist monk Thich Nhat Hanh.
“When you love someone, the most precious gift you can make to him or her is your true presence. That is why you have to practice in such a way that you are there. You are there one hundred percent and you look at him or her, and you say, ‘Darling, I am really here for you.’ That is the greatest gift that we can make to our most beloved one.
But this is not only a statement. You know a mantra is not a statement. A mantra is something you utter out of reality—that means you have to be there one hundred percent in order for what you say to become a true mantra. So in order to be really there you need one minute or two of practice—you breathe in:
‘Breathing in, I am calm, breathing out, I smile. Breathing in, I am really here, breathing out, I’m really here.’ You do that a few times, and suddenly you are really there. It’s wonderful. You are not caught with your problems, you are not caught with your projects, you are not caught by the future, or by the past. You are really there, available, to the person you love. Then when you are sure that you are truly there—body and mind together—you go in the direction of the person you love, and looking at him or her mindfully, knowing that that person is really there and you are there, you smile and you say, ‘Darling, I am here for you, I am really here for you.’ ”
~Thich Nhat Hanh