Pearls and Dreams
On November 21, 1955, my Mother in Law gave birth to a perfectly healthy, 10 lb 5oz baby boy. She named him Donald. By the time he was 9 months old, she knew he was going to be trouble. She already had had 2 children, but this one was different. He'd voice his displeasure quickly and loudly.
In 1957, her sister, would frequently, suggest to my MIL that she keep this terror under control by tying him to the kitchen chair with his shirt tails. By 1958, my Mother in Law was seriously considering it. In the summer of 1959, my mother in law, now had 5 children, the youngest was 8 months old. Donald woke up one day not feeling well.
Taking her three year old son to the to the doctor, she found out the news that parents today, never have to hear. "Your son has polio." My mother in law, to this day, is incredibly grateful, that she never took her sisters advice to tie him to the chair with his shirt tails.
Don, spent the next 10 years of his life in and out of the hospital. He spent more time than either he or his mother can recall in an iron lung. Between the ages of 4 and 8, he had 6 surgeries. One to fuse 2/3 of his back, but they did not put a rod in his back. One on each of his knees. One on each of his ankles. One on his jaw.
The polio, had destroyed most of the muscle tissue, leaving him emaciated and skinnier than anyone could possibly imagine. He walked with leg braces and crutches. He spent his 7th, 9th, 10th and 12th birthdays in the San Fransisco Children's Hospital (his mother lived near Sacramento and was not with him). One of his worst childhood memories, you would think would be, of the iron lung, or of the many hospital stays ... but it's not.
It's of the school playground, one day, the teacher left the classroom after school, and he hadn't gotten all his stuff together. His leg brace popped open. He bent over to fix it, and dropped his crutch. He couldn't get it. He had to crawl all the way to the school office to get helpl It stands out in his memory as one of the worst moments of his life.
His memories of hospitals consist of nurses throwing him birthday parties, sneaking him candy and racing his hospital bed on wheels down the slanted hallways of the hospital when a poor volunteer made the mistake of leaving him for two minutes to check on something, not realizing he was going to 'push off' from the wall and go for a ride. (he says he did it twice, his mother says it was MULTIPLE TIMES).
His mother's worst memory of him at home, is his favorite, she desperately needed some groceries, he was napping and in a full body cast. She thought she could run to the corner market and be back in 10 minutes before he'd even wake up. She was wrong. She came home to find him in the front yard. He managed to wear out 3 body casts in his childhood.
I was an ornery child ..but when our kids start wearing me out ... I point out my husband's history to him and tell him ... I think they came by their energy quite honestly!
All that damage done to the body when he was a child, has left quite a legacy for him to deal with as an adult. The orthopedists think that had he not had polio, he'd have been about 6'2'' to 6'4'' (depending on which doctor you talk to). He is 5'3'' on one foot, and 5' on the other. Those are the measurements taken just a couple of weeks ago. He weighs 94 lbs. He is very large boned.
His kyphoscioliosis is quite severe, and causes significant pain. The pictures we have don't quite show the severity.
but, you can kind of get the idea ...
His rib cage is the size of a young child's when you look at it from front to back. Side to side (shoulder to shoulder) it is the size of a man's. My guess, is when they fused his back, the rib cage was never allowed to expand. So, his lungs are quite compressed. As is, his heart, stomach and anything else that's in the thorasic cavity. (I know the thymus gland is up there, not sure what else).
Everything in his torso is being twisted, compressed and compromised in some form or fashion. Since he was in his 20's, the doctor's have encouraged him to 'do something' to lessen the severity of his problems. Physical therapy to increase the breathing capacity of the chest wall ... surgery to straighten the spine (they have not recommended that since he turned 30). Sleep studies to see if oxygen, CPAP or BiPap or any such thing would help. Stress test to see if his Afib is a dangerous situation for him ... COULD it cause a stroke? Or is his Afib just a function of his anatomy?
And ...everytime ... he is told to do a test, he agree's in the doctor's office ..and comes home ... and cancels the tests and responds to the stress that his body is under by doing the following activity.
I don't know ... is it depression? Fear? Stubborness? Did he just get his fill of medical procedures as a child? Is this just your typical male syndrome of invincibility and "nothing can happen to me therefore I don't really need all that stuff the doctor says I do'' bravado?
Or, is he afraid of them finding something ..and it not being fixable. Would he rather live with the discomfort and the unknown than the discomfort and the doom of the known?
My frustration is ... what if they do the testing and find something ..and they CAN HELP HIM!