Cal and Pat
People regularly ask me if Cal is aware that Pat is gone.
It’s an odd question, and I am not sure if people’s curiosity annoys or angers me, mostly, it makes me sad. If you ever saw Cal and Pat together, the answer would likely be obvious.
I suppose Cal is so rarely outside of her circle of nurses, doctors, and me, that I should not be surprised people don’t understand how she makes sense of the world, and how central Pat was to her.
If you have the great misfortune to Google metachromatic leukodystrophy, most medical sites will tell you that children with the disease are in a vegetative state, non responsive or even suffer from dementia.
This is simply not true. Even children like Cal who are quite progressed with the disease, who are blind and nonverbal, are keenly aware of their surroundings and not catatonic. I suspect this view from medical experts comes from how many of these children are overmedicated with opiates and similar drugs.
Cal could recognize her father by the sound of his footsteps when he came up the stairs, and she most assuredly knew his voice and smell and touch. As a result, Cal is acutely aware of his death.
The last moment they spent together, the day before his death, Cal was laying in the bed beside Pat and when we put her back in her room she cried and whined at being separated from him. As the nurses lifted her out of the bed that day, Pat awoke and was suddenly agitated she was leaving and tried to hold her close..
A few days after Pat’s death, in another blog, I wrote about how when the phone rang and she could hear Pat’s voice on the answering machine, Cal craned her head in search of her father. She quietly and sadly returned to sleep when I explained, ”Daddy is not coming. He is not here.”
It is my view that among all my children, Cal has experienced Pat’s death with the purest of emotions; she is just furious he is gone. I don’t know what Cal may understand about the concept of death, but she most assuredly knows Pat is not here and unable to return to us. Something remarkable and terrible has occurred to remove her father from our lives,
This has resulted in a malaise; Cal sleeps more, laughs and sings less, and just is not herself.
Some of you know that a storm passed through in June causing a tree to fall on the house, damaging Cal’s room with broken glass and dust and debris. What most people don’t know is that since this incident, we moved Cal’s bed and medical supplies into my bedroom. The plan was that Cal would sleep in her bed with me. But, Cal had other plans, and the first night she was in the room with me, she whimpered and whined. This is a sound she only makes when she is deeply unsatisfied about something. And, my first thought was that she wanted to be in the bed with me. So, I moved her to Pat’s spot on the bed, which I still cannot take over after 25 years of marriage. He died there, it is a sacred place to me.
But for Cal, when she got Pat’s side of the bed, she smiled a sighed with the relief and satisfaction of having a wish granted. Cal is still sleeping with me on Pat’s side of the bed and she is most happy in this spot. I am using the insurance money to repaint and remodel her room, but it is not clear at all she is going to get out my bed.
Cal’s nurse Renee swears Cal seems to look up and smile and laugh each morning. This is new, and Renee believes that she senses her father or dreams of him or maybe is just imagining he has come back to us. Even though Pat believed that death would put him to sleep and that he would venture into a void, Pat was wrong. Cal and I know he could not leave us, and whatever that force or energy or spirit or soul has become, it is here in the house, staying close to Cal. And yes, Cal understands this, she knows he has left us and that this was not his choice, and that he is finding a way to be here in whatever way is possible.
