Walking the line…..

Each day I find that I walk a fine line. I don’t ever remember feeling this way before. I feel like I am on a balance beam and each time I take a step and let one foot dip below the beam my foot touches a pool of paint. On my right side is black paint and on my left is white so when I am done I am just a mess of grey.

Can you love and hate in the same instant? Can you be cold and hot at the same time? Hungry and full? Blind and see? For me I may have felt polar opposite emotions close together but not at the same time. I find that is my daily struggle lately. I watch Joel struggle along and I want a total recovery and I want it this instant. I am frustrated with his progress. I feel like we have stagnated in our rehab efforts. Yet at the same time I am overwhelmed with joy that Joel is alive and here.

When I think back to right after his surgery he could not sit up on his own, his head flopped to the side. He was so wobbly that when he would sit up I was worried that he would smack his head on the bed frame. I had something like ten pillows surrounding him in bed. He stopped talking. He couldn’t stand or walk. He lost control of his right arm and leg. He had left side facial paralysis. His right eye seemed to have lost all tracking capability and he had double vision. We have come a long way.

This week when we saw the eye doctor he told me that Joel’s eyes are equally strong so there is no need to patch his good eye. The slight tilt of his head is a cerebellum issue and may or may not correct itself. He is happy with the progress the lazy eye has made up until now, so he will watch and see. If it does not improve anymore on its own then it becomes a surgical issue. That would be several months down the road.

We then saw Dr. Keen our Neuro-oncologist. He looked at Joel and we discussed his droopy eye lids the tremor that has developed in his right arm. He used a big word and then said more commonly called cerebellum something or other. I think maybe cerebellum syndrome but don’t quote me on that. I will ask when we are in next week if he wrote it in Joel’s chart and I will get the name of it. At any rate it is a result of the tumor being removed and he cannot say if it will improve or if it will be with him for life.

In the beginning of all of this it seemed like the hard part was getting the tumor out…then it was treatment, but know I see there is a long road filled with complications from surgery and treatment. Had we not removed the tumor it would have been fatal, had we not treated with chemo and radiation and just gone with surgery he would have had less than 30% chance of survival. Yet the side effects are awful and in some cases albeit rare are fatal.

So here I sit on my fence with one foot on each side… totally amazed and thankful for the gift Joel is and the progress he has made yet at the very same time I am frustrated with the uncertainty of his recovery and concerned with what lays ahead.

All that said at the same time we are still basking in the sense of peace that surrounds us here in the now in the moment to moment of daily life.

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