{"id":16122,"date":"2024-07-05T08:53:04","date_gmt":"2024-07-05T15:53:04","guid":{"rendered":"https:\/\/www.patheos.com\/blogs\/uncommongodcommongood\/?p=16122"},"modified":"2024-07-05T08:53:04","modified_gmt":"2024-07-05T15:53:04","slug":"independence-day-every-day-choose-freely-and-responsibly","status":"publish","type":"post","link":"https:\/\/www.patheos.com\/blogs\/uncommongodcommongood\/2024\/07\/independence-day-every-day-choose-freely-and-responsibly\/","title":{"rendered":"Independence Day Every Day: Choose Freely and Responsibly"},"content":{"rendered":"\n<\/head>
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My son Christopher in the summer of 2004 at Congress Hall in Philadelphia, Pennsylvania. Here\u2019s what the National Park Service states about Congress Hall<\/a>: \u201cFrom 1790 to 1800, Philadelphia served as the temporary capital of the U.S. During that time, the U.S. Congress met in Congress Hall. The House of Representatives met on the first floor while the Senate convened upstairs. Presidents George Washington (second term) and John Adams both took the oath of office in this building.\u201d<\/figcaption><\/figure>\n<\/p>
This post reflects upon the importance of not taking our independence as humans for granted. Independence entails choosing freely and taking responsibility for our actions, thereby affirming our dignity. When we do so, every day is Independence Day.<\/p>\n
Growing in Conscious Awareness of the Freedom to Choose<\/h2>\n
My daughter Julianne and I cherished the opportunity to sit outside in the shade with Christopher at his care facility on the Fourth of July. Christopher is my son and Julianne\u2019s older brother. If this is the first time you have read my blog, it will help for you to know that Christopher endured a traumatic brain injury three and a half years ago. He is in a minimally conscious state, rarely talks, and cannot walk. He has a feeding tube and a trach.<\/p>\n
Medically and legally speaking, Christopher is incapacitated and completely dependent on others\u2019 care. That said, we are finding that he is slowly growing in expressing his independent spirit. The injury did not eradicate Christopher\u2019s indominable will! How fitting that his nurse and a resident who is a friend highlighted Christopher\u2019s independent spirit yesterday afternoon on Independence Day.<\/p>\n
Just like when he was growing up, Christopher has a mind of his own. Fully conscious or minimally conscious, it doesn\u2019t matter. He is showing signs of responding more to others and affirming his own agency. Like Christopher, may we grow in the conscious awareness of our own agency and the accompanying freedom to choose. If he\u2019s not taking human agency and freedom to choose for granted, neither should we.<\/p>\n
Showing Signs of Increasing Independence<\/h2>\n
The nurse who is closest to Christopher informed me yesterday that Christopher is showing signs of growing in independence. He is starting to protest more when she tries to give him his eyedrops. He has always hated the eyedrops and would express disapproval with facial expressions and movements. However, only recently, he has really started to put up a fight when his nurse administers the eyedrops.<\/p>\n
For example, when his nurse came into his room and said it was time for the eyedrops, he closed his eyes tightly and pulled back his right hand and arm as if he was going to slug his nurse. She said, \u201cChristopher, open your eyes to see who is giving you the eyedrops.\u201d Slowly he opened his eyes to see her, slowly put down his fist, and turned his head away.<\/p>\n
Christopher\u2019s fellow resident has said a few times recently that Christopher is expressing independence when they are sitting together in their wheelchairs. When I turn and walk away for a second, Christopher starts moving his arms and blinking his eyes. When I return, he is often subdued. Our resident friend says that Christopher is doing things his own way. He does not always like to follow his father\u2019s directives by way of prompts to see if he will blink or move his arm toward me. The same occurred when he smiled big upon seeing our resident friend. The smile stayed plastered on his face until I tried to take a photo to share it later with his mom.<\/p>\n
Another nurse told me that Christopher will either give her a thumb\u2019s up or raise his middle finger depending on the situation. He reserves the middle finger for her when she washes Christopher\u2019s face. I want to imagine that my son is simply using a one finger salute to honor his caregiver for her incredible service. Regardless of the meaning, like them, I would take a middle finger, pinkie, and thumb, or even his fist to my face just to see Christopher express his independent spirit and agency.<\/p>\n
My son is also making more sounds that appear like protests when a CNA with whom he is close teases him, even early in the morning. I love the staff\u2019s playfulness and their efforts to get Christopher to respond. They know he is not an automaton.<\/p>\n
Being Attentive to Conscious Control<\/h2>\n
It is upsetting to me when some caregivers do not really see Christopher.\u00a0 They do what is required of them, but do not see the person. Even though these nurses and CNA are very busy, they pay attention to the little things, including signs of conscious control. The same is true of the resident friend. Like one of my favorite authors John Steinbeck, they observe people closely. May you and I be attentive to our own acts of conscious control.<\/p>\n
It has always been the case that with Christopher, what you see is what you get. He lets you know what he thinks no matter what you or his dad thinks of it. It is quite striking to me that even though Christopher is often mentally submerged much of the time these past few years, he appears to be surfacing more than before. I can only wonder what he will say to me if, and when, he tells me what he is thinking. I can assure you that he will speak his mind.<\/p>\n
Conscious Actions, Not Blind Fate or Reflex<\/h2>\n
Submerged or surfacing, my adult son teaches me a lot about life. He teaches me that we should cherish the fact that our conscious actions are not the result of blind chance. How I long to see evidence of Christopher responding rather than merely acting. It can be as simple as bumping his fist and observing times when he returns the favor not by way of reflex or reaction, but pro-action.<\/p>\n
One of the greatest privileges of being a human is to act and take responsibility for our actions. We must not allow forces that weigh heavily upon us to get the upper hand. This includes various maladies like a traumatic brain injury, peer pressure, or political and economic constraints. Acting and taking responsibility for our conscious or even minimally conscious actions is the only way we can affirm our dignity. After all, we are not automatons or cogs in a machine wherein we have no freedom to choose. We should never seek to get away with saying the system made me do it.<\/p>\n