SITTING HERE AND LEARNING

Sitting with someone who is mentally disabled, physically handicapped and imprisoned in her own body, I often wonder what she is thinking. When my wife and I are not with her in her room at the Medford Multi Care center as we are home for the day, I wonder how lonely it must get for her. She still is imprisoned by her tracheotomy and must be reliant on the airflow from the wall that is delivered from behind her bed in a wall.

Sitting with her for hours because she is frightened and alone otherwise makes for a very long day for both my wife and me, and no relief is possible as when we leave her we obsess over all that is wrong as we try to have a peaceful evening. We know that no one cares nor gives a damn in the end, that people have ways of putting it all out of the mind. Oh, they may inquire and hope we don’t dwell too long on the answer so the formality can be covered and passed on. No need to make anyone uncomfortable or saddened any more than he or she should be. We get that and so we go every day, splitting the day by my sitting with my daughter in the morning and my wife relieving me and sitting with my daughter in the afternoon.

Bedtime does not guarantee relief, nor does it make anything go away, we wake up in the middle of the night wondering if my daughter Ellen is OK and not being taken advantage of. If there is any of that and I find out I will go to jail.

During the morning I engage with her and we do the same things over and over again. There is a little conversation and it is all one-sided on my part. I open my I-pad and I go on YouTube and play uplifting songs that sound happy no matter what the words are however inappropriate. I place the I-pad on her bed next to her and sit on a protective pad that is placed on both sides of her bed to prevent her from injury should she fall off the bed. I sit as close as possible so she feels my presence, knows I am engaged with her and that she feels at home in a strange place. If I leave the room to go to the toilet, her eyes follow me as she thinks I am leaving her! I try to assure her I will return quickly, but her eyes are pleading with me saying: “Please don’t leave me, Daddy!” My wife has it harder, she leaves her for the day and that must be tougher.

Funny thing is I don’t mind doing these things every morning seven days a week holidays included. When I think about her life and how I went off to work every day and never thought of her mental loneliness. Now, I am chained to it and glad to do it for her sake. She is a beautiful person who has never said anything bad about anyone, has never plotted or event thought something negative. I love my daughter and like any of my children would never abandon them in a moment of need. They are but an extension of myself, my flesh and blood.

I guess in the scheme of things your children don’t realize what you would do for their sake as a father, that Mom is the center of the Universe they inhabit and that is right as Mom is and should be, but I hope when the day comes and I am called that they will at least remember me as their dad.