Writing is a strange thing. Sometimes it is pure joy and other times it is pure torture. I seem to do my best writing in both of those states. It’s the blah times of life that writing seems most difficult for me. I cannot say that I have had writer’s block for the past few weeks, as I have hundreds of topics I would like to write about. It’s just in the blah times; I have no enthusiasm, and therefore figure anything I write will be dull to my reader as well.
Yesterday, my daughter, Shannon, was hospitalized for the 100th plus time in the last 30 years. For those of you that don’t know about my daughter, let be briefly explain. Shannon was a normal healthy child until age eleven, when she was diagnosed with a brain tumor. Although she underwent an eleven-hour surgery, the surgeons were not able to remove the tumor. They therefore radiated 80% of her brain. This shrunk the tumor down, but over the years a side effect of the radiation has caused her to have nine strokes. Other side affects of the tumor and radiation where numerous diagnoses of diabetes insepitus (very rare), sugar diabetes, osteoporosis, high triglycerides, a condition called panhypopit-where the pituitary gland was knocked out and requires hormone replacement.
Over the years Shannon has broken many bones due to the osteoporosis including both hips. She is now full of arthritis, but seldom complains. She has been comatose for as long as 28 day on seven occasions. She has lost her speech four different times. Following a stroke about five years ago, she did not regain her speech. Two years ago she lost the sight in her right eye, and then in November 2008, she lost the sight in her left eye after her last stroke. She is now totally blind. Two months ago Shannon’s hips became too painful to walk on, so she has stopped walking. Because of the strokes effect on her swallowing, she is now fed with a g-tube in her stomach. We constantly fight the battle of keeping her sodium and sugars in balance.
Most people cannot believe that Shannon is forty years old, because she looks like she is about 14. She stopped growing at age eleven. Because she did not go through puberty, she still looks almost the same as she did thirty years ago. I call Shannon my “Comeback Queen”, because no matter how hopeless the doctors say her prognosis is, no matter how sick, no matter what she has to go through-She ALWAYS comes back. For the last week Shannon had been slowly deteriorating in health. She often goes up and down. Sometimes she pulls out at home, and at other times, she needs to be hospitalized. It is in the times of not knowing that my blahs seem to set in the most. It is like treading water, where one neither goes forward or backwards, but one just stays in place, trying to keep ones head above water. When I left the hospital last night, I felt encouraged. I believe we are once again swimming forward, and Shannon is in her comeback mode. She once again is going to retain her “Comeback Queen” title.
