Friday, January 31, 2014
Epilepsy
When I was 16 I took a summer job babysitting. It was a family of 5 children. They lived in a trailer park on a lake. Their trailer was a very large nice home.
They had four boys and one daughter. I would sleep in the same room as the daughter because I would stay there all week. On weekends I would go home.
Both parents worked so they needed someone who could take care of the children, do light housework, and cook at least two meals each day. No problem. Remember I have six younger brothers and sisters.
The children also had an aunt and uncle only a few trailers away. The aunt was only a few years older than I. I was asked to never leave the children alone with her because she had epilepsy. She had been in a car accident and there was a bruise on her brain that caused seizures.
She was a very nice person and we got along very well. She would come down a couple of times a week just to visit while her husband was at work.
One day she had a seizure. She was just sitting and quietly watching television when she began to act strangely. She yelped a couple of times and slapped her leg repeatedly. It took me a few beats to realize what was happening but I had no idea what to do for her.
I had promised the children I would make Johnny cake for breakfast one day. What I call Johnny cake is just hot cornbread with sugar and milk poured over it. It is delicious if you want to try it. So one Monday morning I got up early to start baking.
I did not know that the parents had broiled steaks the evening before. They decided to leave the oily aluminum foil on the broiler and clean it after work Monday.
I lit the oven and started making cornbread batter. The oldest son of the family came in rubbing his eyes and trying to wake up. As we were talking we saw the flames flare up from the broiler.
I am good in a crisis so I was going to go out and turn off the fuel tank. When I got to the door I suddenly felt myself turning to the left and spinning uncontrollably.
Then I was waking up on the couch with the mother of the family hovering over me and the children looking so frightened. She wanted to know if I was okay. I felt fine. Maybe just a little sleepy.
The oldest son had the good sense to run outside and turn off the fuel. Then he ran down and had his aunt come up. She called the mother who came right home. It was about a 45 minute drive.
The mother decided to take some time off work so I could go home. My parents had me rest and stay calm even though I felt fine. After one week I went back to take care of the children again.
I was there for about a week and a half. I was up before the children once again. As i moved through the living room toward their rooms to wake them up I turned and saw myself walking slightly behind and to the left of myself!
Once more I woke up to see the mother there as I was lying on the couch. This time my mother was with her. I was still so scared from what I had seen. The mother of the children of course needed someone who was not passing out all the time. She had made arrangements for a friend of mine to finish out the summer. That was fine with me. I wanted my mommy.
Mom took me home and we were relaxing again. That same day I passed the television as I was walking to a chair. Mom was in her bedroom folding clothes.
There was some sort of art program on television. The program was flashing from one painting to another and the lights changed with each painting.
I felt dizzy and was able to sit down. Then I felt myself reach up and tear the whole left side of my face, jawbone, teeth, and all, completely off. Then I felt that same hand reach down and tear the muscle from the top of my left leg. Of course that did not happen. I passed out.
Mom said she heard a funny noise and came into the living room to see me sitting in a chair with everything on my body trying to fold into itself. I am not a limber person. She said my hands were sort of palm up with my fingers almost touching my wrists.
I went immediately to the doctor. I do not remember much about the doctor visit. He admitted me to the hospital.
I had never been in the hospital before. I thought it was kind of cool to be served my food in bed. I did not like the testing they did as most of it involved drawing blood.
The second or third day I was there (I do not remember how long my stay was) I was lying there and I began to think about epilepsy. I remembered hearing my grandmother talk about two sisters in town who had "fits". That and the aunt of the children I had taken care of was the limit of what I knew on the subject.
My parents came in that morning and stood at the foot of my bed. They told me that the doctor thought I might have epilepsy. I said, "I thought that might be what it was."
When I got the chance I asked the doctor what this would mean for me having children. He said not to worry about it. But I did worry about it. So he assured me that the chances of my children having seizures was not even 1 in a million.
I was put on the medications that they used to treat seizures at that time. Now I am not a medicine taker. Two aspirin will knock me out. The medicine that I was taking made me so sleepy all the time. I do not know how I got through my senior year of high school that year. And with my A average to boot.
I have grand mal seizures. Those are convulsive seizures. They are extremely painful. Each one a person has is a bit worse than the one before until they can be so bad that a person can die from a seizure. In fact I have almost died three times. I feel very fortunate to be here.
I am also very fortunate that I am very well controlled with medication. It has been so many years since I had a seizure that I cannot remember when the last one was.
I am still taking the original medications that the original doctor prescribed. One of them is a controlled substance. After fifty years I am physically addicted to it. That means without it I will go into withdrawal and the classic symptoms that accompany withdrawal. It does not mean I am constantly craving more. I just need it to live.
A dear friend of mine was on the city council of the city we lived in. She was on President Carter's epilepsy commission. She asked me to go through the information she had and give her a synopsis. No problem. Until I saw the research. It was five books. Each one was about four inches thick except the last one. It was about three inches.
What I read was a real eye-opener for me. While epilepsy, like many other maladies, is not inherited the predisposition is inherited. That means that my children might have a weakness that they inherited from me that would make them more disposed to having seizures.
Also they used an example of a parent with four children (I have four children). If one child has seizures the likelihood of another having seizures multiplies (not adds up, multiplies). If three children have seizures the fourth will have seizures.
I learned that an uncle of mine had epilepsy. He died before my father was born. He was in a home for juvenile delinquents. My father always thought his brother was "bad" because that was better than being "defective".
My mother suffered terribly from migraine headaches. They are a first cousin to epilepsy. Many of the workings of the brain are the same in both.
Two of my sons had migraines when they were about 8 years old. Testing showed some brain activity but I would not allow them to be put on medication until there could be a definite diagnosis. Neither has had any further problems. My daughter is fine. I recently discovered that my other son has been having petit mal seizures for about three years. He did not want to worry me so he kept it to himself.
Two of my grandchildren have migraine headaches. So does their mother, my daughter-in-law. Two of my grandchildren have had seizures. One was placed on medication for a year. The seizures stopped and the medication was also stopped. He has been fine for several years now.
If any one needs to know anything about seizures feel free to ask. I am almost an expert. And if I am not certain I have the right answer I can probably guide you to the place to find it. In the meantime I am going to tell you what steps to take if you are with someone having a seizure.
1. If they are upright, lower them safely to a prone position. That will help keep them from injuring themselves in a fall.
2. NEVER, EVER, EVER, try to force anything into their mouth. Fingers have been bitten off. Tableware and wooden sticks are either broken or cause damage to teeth.
3. The human tongue is a muscle. It sits in a particular spot in the body. It is physically impossible to swallow your tongue. However the tongue like any muscle can fall to the back of the mouth and block the air passages. Gently position the person on their side. That way the tongue falls to the side instead of the back of the mouth.
4. If the seizure lasts for more than three minutes call for medical help immediately.
5. When the seizure is over often the person will lose consciousness or maybe just be confused. When they awaken the body and brain are busy trying to re-establish connections. They have no time to answer questions like "Do you know me?" Leave that for professionals. Simply say, "hi, (insert name, it is important). I am (insert name, it is important). You just had a seizure. You are safe and I am right here. Everyone is taken care of. You need to rest so go to sleep. I will be here when you wake up." If an ambulance is on the way or the doctor is on the way let them know that too. That way they can let their body heal itself without wondering what is going on.
In the beginning I was up and full of energy within a couple of hours. As time went on it took me at least two full days to be able to even get out of bed and stand on firm feet. Each person is different.
Epilepsy is nothing to be ashamed of. No more than diabetes, heart disease, or asthma. If you were ever to see the list of famous people and world leaders throughout history who had seizures you would be amazed.
But it must be treated. By a doctor who knows what he is doing. Not many do. Most of the "maladies" are only mentioned in medical school in passing. I hope I have enlightened you a bit. I hope you never need the information. But if you are confronted with a situation you now know what you can do.
Tuesday, January 28, 2014
The Cop
Daddy was the town marshal of our little bitty town. That meant he was also in charge of sewage, trash removal, fire chief, animal control, etc. In fact the only thing he wasn't was the mayor.
One of his duties was to blow the noon whistle. That whistle notified everyone in town that it was lunch time. All the stores and other businesses closed for lunch.
It was more of a siren than a whistle but that is what we called it. We went home for lunch from school. If we got to the fire station in time Daddy might let us blow the whistle.
It was easy to do. All you had to do was flip the switch just like a light switch. Then you would wait until the sound hit its crescendo and flip the switch back down. The sound would gradually slow and die. It was such a thrill.
The firehouse held most of the city offices. Daddy's office was there. The jail was there too. During the school year classes often made the several block long walk to the firehouse for a tour. We would be treated to explanations of what was what by my father.
When we got to the jail we were encouraged to enter the cell (yes, just one) to examine it. Then Daddy would slam the door shut and we were locked in. After good-natured laughter by Daddy and the teacher we would be released to go back to school.
Often while he was on patrol Daddy would find a treasure. He would rush home and have us check his shirt pocket. Inside might be a baby rabbit or kitten. If we could not talk Mom into letting us keep whatever it was Daddy would take it away. What we did not know was that he would have to euthanize it. There were no facilities for keeping animals.
One time he found a stray dog. Mom said no. Daddy took it to do his duty. When he came home again he had the dog.
He claimed that he had shot and buried it. When he got back to the fire station the dog was waiting for him. Oddly enough there was no sign of any wound. It must have been a fast healer. We kept it for a while but it ran off again as many stray dogs do.
Homecoming was the biggest day of the football season. People who had attended our school came back to root for the team along with the rest of us. There were pep rallies and bon fires all designed to whip the team into a winning frenzy. And there was a parade.
There were floats made of tissue paper and chicken wire on flat trailers that were pulled by tractors. A Homecoming King and Queen rode floats with their attendants. The mayor waved and smiled at everyone. For a little town that was only about three blocks long it was quite a celebration.
The fire chief had the big shiny red new fire truck all cleaned and waxed and it was a part of the parade. As the children of the fire chief we got to sit on top of the fire hoses and ride that truck in the parade. It was a great time to be a child, especially with the town marshal for a father.
Friday, January 24, 2014
Watermelon Day
During the summer Saturday nights were special nights. The farmers came to town to purchase what they needed from the grocery store and the feed store. It was a small town so there were not many other stores there.
What we did have was the free show. The free show was a big movie screen with a bunch of benches set up for us to watch. And it cost absolutely nothing.
I got 25 cents each week for allowance. Five cents went into the collection plate at Sunday school but the rest was mine all mine. Before the show started I would stop at the store and buy a bottle of pop and a candy bar. It took half of what was left but it was worth it. Besides I would get back a penny when I returned the bottle for the deposit. That penny was worth two pieces of bubble gum.
I loved sitting outside watching those movies. It was just like being at the theater. Except we had the stars above us.
The reason the free show was there was to keep the kids busy while their parents shopped and socialized. The fire station was where the men would gather to play cards and discuss manly things. The women stood off to the side talking about children and whatever else they talked about.
We lived just a block and a half down the street from the free show so I always went. Unless it rained. Then us kids would join the adults in the firehouse.
At the end of the summer came the best day of all. It was watermelon day.
On watermelon day all the farmers brought part of their harvest to town. Someone donated a cow and someone else donated a pig. They were both roasted in a huge pit dug in the ground. They started cooking a day or two before.
Then there were tables set up. They held cooked potatoes, corn on the cob, fresh salads, vegetables, fruits, homemade breads, pastries, cookies, cakes, homemade jams and jellies... you name it, it was there. And watermelon.
After eating more than you could possibly eat, you had to go back for a huge chunk of watermelon, then another one, and so forth. It was everyone enjoying the bounties of the harvest.
There were games like sack races and other fun group activities. When the sun went down there was the free show.
The very nicest hing about watermelon day was... IT COST NOTHING. It was just people getting together and enjoying each other and the offerings from the land. It is one of my favorite memories.
Tuesday, January 21, 2014
Road Trip
Mom and I often talked about places we would like to see. One day we were doing it again. I said that my ideal trip would be to drive and be able to stop whenever something caught my eye. No timetables, no set destination, just be able to see whatever looked interesting.
Mom said she had always wanted to do that too. She said, "Your father's idea of a trip was to get into the car, point it in that direction, and step on the gas. We would rush to get where we were going in the shortest amount of time possible. Then when we got there he wanted to turn around and go right back home." I remembered that about him.
The more we talked the more we realized that we needed to do this. Mom was retired so all we needed to do was find out when I could get some time off from work. We were going to drive through New England.
It was autumn when we went. Since we were driving to New England we thought the fastest way to get in that direction was to go through Canada to Niagara Falls.
I had not been to Niagara Falls for more than 15 years. Mom had been there a couple of times since then. We had gone as a family when I went.
Everything was different. The only things I recognized was the Ripley's Believe It Or Not Museum and of course the falls. If you have never been to Niagara Falls please treat yourself and go. My favorite spot is the observation platform right at the place where the water falls over and down. You cannot imagine the quantity of water that falls over in just an instant. It is hypnotizing. And the Maid of the Mist boat ride is a must.
Then we crossed back into the United States. I am unable to tell you what we saw in what order. My little brain does not work that well. So I will just give little bits.
Mom and I are both souvenir buyers. For me that tackier the better. Mom tries to get some little thing that is nice. So in each state we got something for each person we wanted to remember. We wanted them to have something that said which state they were from right on the item. Those things are not always easy to find. A note to retailers... there is a market for those kinds of things.
We intended to share driving duties. For the most part we did. But Mom could not see well to drive after dark and she would get nervous. I was a more experienced driver so I always drove in the evening.
The original plan was that we would find a rest stop or something most nights and just pull over to sleep. We soon realized that we could not get enough rest that way so we stayed in motels instead. It also gave us a chance to rearrange our souvenirs to make room for the new ones.
In the morning we would stop at a drive through donut place and get coffee or tea and some donuts to eat along the way. We usually had a nutritious meal in late afternoon.
We steered around large cities for the most part. We wanted to see the out-of-the-way places.
We saw a sign advertising a candy factory. We had to drive a little farther and turn around in order to find the road that took us there. It was a converted barn and they made all sorts of candy there. I love chocolate. Chocolate covered cherries are my favorite.
Santa used to leave chocolate covered cherries for my mother and me in our stockings. I bought a couple for each of us because they were huge. We each thought of Daddy as we ate them.
The one place we had agreed we wanted to visit was Salem, Massachusetts. It is where the Salem witch trials were held. Mom also wanted to treat me to a lobster dinner because lobster is one of my favorite foods.
Salem is located on the ocean. I did not know that. There is beautiful scenery there. It is a small town so you can walk almost everywhere. Which is a good thing. There is a little circle of traffic in one spot. It is a complete circle. You must join the circle in order to transfer to a street to take you to where you wish to go. The problem is that once you get on the circle it is almost impossible to get off! What fun.
We visited the Salem Witch Dungeon Museum. You can learn about the Salem witch trials... what caused them, what happened, and why they ended. They even do a re-enactment of the trials. Of course there is a gift shop so you can buy souvenirs.
The House of the Seven Gables is in Salem. It is a gorgeous old house with seven distinct gables. It sits halfway down a short street. At the end of the street is a barrier. I am guessing that it is to keep people from driving right into the ocean. From reading the book written by Nathaniel Hawthorne I did not realize how close it is to the ocean. The House Of The Seven Gables is now a museum with, of course, a small gift shop.
At the other end of the street is another street. On that street is Ye Olde Pepper Companie. It is the oldest candy company in America. It is said that a woman was shipwrecked and arrived in Salem with nothing but her son. The townspeople learned that she knew how to make candy so they gave her a barrel of sugar. The Gibralters she made are said to be the first candies made and sold in America. They also make chocolates and other kinds of candies. It is a small shop but worth the visit.
We also wanted to visit with a witch. After all that is what Salem is famous for. I do not necessarily believe that one person has more sensory powers than another. At the same time I have had some strange things happen to me. I do like to do things like this but it is like going to an amusement park and having someone guess your age. It is all in fun.
Mom had her heart set on seeing the official witch of Salem so we went to her shop. She was out of town and everyone in the shop was busy. We would have to make an appointment. They said we might try one of the other shops.
We went into a tea room that sold amulets and that sort of thing. They also had on site witches. There was a male witch who had a little bit of free time. His name was Sean. He agreed to do a reading.
Mom went first so I wandered around the tea room looking at all the wonderful little treasures. She was in there for quite some time. She told me later some of the things Sean told her. For instance he told her she was satisfied with her life. He did not see her ever in another relationship with a man. She was not wealthy but she would be okay. She was content because she always felt like someone was with her caring for her. She would live a long life... 102 years of age were not out of the question. He did see some respiratory problems that may or may not also involve her heart.
He was so concerned about the respiratory thing that he gave her a stone. He said it had the properties to ease symptoms if she had breathing problems. She should keep it wrapped in silk or some soft material. If she felt discomfort she could take it out of the cloth and hold it to her chest. Mom used that stone for years. then one day she took it out of the cloth and held irt to her chest and the stone shattered in her hand.
When I went in to talk to him he said that I was very different from my friend. Now he had to know we were related because I look a lot like my mother but I let it pass. He said she was like a cool calming stream and a person always felt safe around her. (True) On the other hand I had little lightning bolts shooting out all over the place from my aura. I lived a chaotic life. (Again true)
He told me that he did not see me with anyone in a romantic way and that I would be happier that way. The truth was that I was in a relationship that had died a slow boring death. Before I left on the trip I had decided to end it when I got back. No one but me knew anything about it. Not even the other person involved.
He told me I had the ability to call people to me. That did not surprise me. Throughout my life I would suddenly think of someone I had not seen in a while. Within three days I would see them in person. I was never sure whether I knew they were coming or if they came because I thought of them. Interesting, right?
The spookiest thing was that he then proceeded to describe my children to me! None of my children look like me, they look like their father. He told me what they looked like and a bit about their personalities. He did kind of mix my second son and third son together and while the things were accurate they might not belong to the son he was talking about.
He said he saw a young woman who looked like a fairy. I was so startled. I had never made this connection but my daughter looks like almost every picture I have seen of a fairy. I was a bit muddled when our time was over. And by the way, he did not give me anything. Not fair.
While we were in Salem Mom took me for my lobster dinner. Oh my goodness. They served two whole lobsters along with side dishes. How is anyone supposed to eat that much? I do not remember what Mom had. She was not much of a seafood person.
We saw Plymouth Rock where the pilgrims landed. We drove into Maine where we just pulled trhe car off the road and watched the ocean for a while. We stopped at little out-of-the-way shops and restaurants. We drove to the places that we saw little signs for and looked around.
When we drove through the mountains I was in awe. I have seen mountains before but this was a special time. As I said it was autumn. It was not the peak time for fall colors yet. But oh my goodness. I saw leaves that were colors that they have no name for. It took my breath away.
We drove down through all the states on the east coast of the United States. We had decided to go visit my sister in Kentucky.
We stopped in Culpeper, Virginia, at a nice little cafe. Such nice people there. The food was delicious and they gave generous portions. It was true southern hospitality.
We spent several days at my sister's house. Mom surprised us both by going out one day and renting a place to live. She said she was tired of cold winters. She had tried Florida with our other sister and did not like it there. So Kentucky it was.
Mom and my sister and her boys took me back home. It was the end of a great road trip.
Since Mom was the one who supplied the car this time I told her I would treat for a trip to Washington DC in a couple of years. We were going to go in April so she could see the cherry blossoms. She died in January that year.
But I have that road trip to add to all the other memories I have of my mother. I am so glad we went.
Friday, January 17, 2014
Rhonda's Legacy
Rhonda was my special niece. Special because she loved everyone unconditionally. I think she knew her time with us was to be short and she did not want to clutter it with negative things.
There are a lot of things to be learned from the brief life of that beautiful little girl. The most important is to spread love. It costs nothing and benefits everything. I know she made us better people for knowing her.
Her illness was a costly thing. I do not know how it is now but at that time transplant surgeries were considered "experimental". My brother and his wife were very young but my brother had excellent health insurance through work.
The problem began when he was informed that the insurance would not cover experimental procedures. It was suggested that they apply to the state for help. The state would not cover experimental procedures. The United Way was the largest charitable organization in the area. They helped many different types of charities including medical charities. But none of them covered experimental procedures.
So my brother worked two full time jobs to help pay for medical expenses. My sister-in-law also found work to help out. And they had a sick child and her younger brother (1 year younger) to take care of. That left very little if any time to be together as a whole family.
As often happens in cases like this their marriage did not survive. You always hear stories about how a tragedy draws a family closer together but statistically more families are destroyed.
A lot of things were covered by insurance. Regular check-ups, a lot of medications, that sort of thing. But Rhonda needed special medications because her little body did not absorb a lot of them. And special medications cost a lot.
Senator Ted Kennedy was coming to our city to have a panel about a national health care system. My brother and sister-in-law were asked to testify and agreed. By this time my niece had been gone for a while so they felt they could handle it.
In preparation they got together with my mother to tally up what they had paid out of pocket for health care. The numbers kept growing and growing. Finally it was decided to just do one year. The numbers were still huge so they went with medications for one year only.
The final total of money that this couple, who were in their early 20's when their 8 year old daughter died, spent on medication for their daughter for one year was more than $25,000. Yes that is twenty five THOUSAND dollars. In the 1980's that was more than most people made all year.
Of course after my niece had her transplant surgery all those organizations that wanted nothing to do with her medical problems before were fighting to be the ones to help her. My brother's medical insurance was there and paid for her needs then.
Senator Kennedy was impressed with their testimony. He listened to other stories of horror dealing with the cost of medical care. Then he said he would try to see to it that others did not have to go through this. Unfortunately he was unsuccessful. But at least he listened.
When I worked as a cashier often senior citizens would bring their prescriptions to me so they could pay for them. Often one prescription for a month's worth of medication would be more than $500 dollars! These people were living on fixed incomes. Some had to choose between buying medication that kept their hearts working and food. Unforgivable!
I read an interview with Christopher Reeve who played Superman in the movies. He had fallen from a horse and was paralyzed. His grandfather was the head of one of our country's largest insurance companies. Christopher Reeve had the very best health insurance available. Within a very short period of time (weeks) his allotment of benefits was consumed. He wondered how people of more modest means could even have hope for medical care.
Most people do not realize that there is a ceiling on the amount of money that health insurance will pay over a lifetime. With a life threatening condition that ceiling can be reached quickly.
A work colleague and dear friend had AIDS. He had been sexually promiscuous thinking it would never happen to him. As his disease progressed he became more and more ill. The treatments for AIDS such as those magical cocktails you hear about cost a lot. His health insurance ran out in no time.
There are federal programs that provide the medications for AIDS victims. But they only accept patients who are too ill to work and take care of themselves. Once they are better (and the cocktails do work to make them better) and can go back to work the medications are stopped.
My friend got tired of the sick/better roller coaster and decided he would no longer take part in the government program because it was only temporary. He died only months later. He was only 35 years old and looked at least 80 when he died.
Most medications are fairly inexpensive to produce. What we pay for is research. Research is necessary to find more and better medicines.
But I cannot for the life of me understand how we can let people die because they cannot afford medicine that they need to keep them alive. I am not talking about extreme medicines only. Insulin for diabetics, medication for heart patients, oxygen and medication for emphysema sufferers... I think you get the idea.
We are inventing better mouse traps. We travel to outer space. We fund wars to kill people. Can't we find some way to help people be healthy?
Tuesday, January 14, 2014
Rhonda
My brother and his beautiful wife had two children. The first was a beautiful little girl. She was my parents' first granddaughter and the first grandchild on her mother's side.
Rhonda had white hair and blue eyes when she was born. She was a good baby and we were all thrilled to have another baby in the family. And the baby was a she. Daddy was on top of the world. Like most fathers he wanted boys to do masculine things with but he could cherish a little girl and cherish her he did.
As we did with all the babies in the family we lavished her with love. We let her know that she was the prettiest little girl ever born and the smartest child ever. She felt safe and secure as a member of our family.
When she was a few months old she began to get sick every time she ate. Bottle, baby food, it did not matter. Projectile vomiting to the extreme.
My sister-in-law was very young but she was certain that there was something wrong with her baby. She told the doctor about the copious vomiting. He chuckled at this young mother and said, "Don't worry about it. All babies spit up."
She kept taking my niece beck to the doctor and he kept dismissing her.
We marveled at this precious little girl. She had that lovely fair skin, gorgeous blue eyes, and that white hair. One thing that we thought was especially cute was her ears. Her earlobes sort of curled and looked a bit like seashells. So cute.
But she continued to vomit. She walked and talked and behaved like any other baby but she did not have the stamina the other children had so much of.
My sister-in-law continued to bother the doctor. He continued to dismiss her.
My other sister-in-law talked to her own doctor about our niece. She was concerned too. Finally she asked her docotor if he would examine our niece.
He informed her that he was not taking any new patients. She asked him if he would let the baby take her place as his patient. When he realized how much this meant to my sister-in-law he agreed to take a look at my niece.
When my brother and his wife took their little girl in to the doctor they were hopeful that he would be able to get her to be able to keep some food in her stomach. The doctor did a couple of preliminary tests as they waited. He immediately admitted Rhonda into the hospital.
At the hospital they waited while the doctors were in the room examining their baby girl. Finally the doctor came out to talk to them.
He walked to them and said, "Do you beat her too?" They were shocked.
Rhonda was so seriously malnourished that she was only days from death, according to the doctor. He had never seen any child in that condition whose parents did not also physically abuse the child. After they found the problem he was gracious enought to pull them to the side and apologize for accusing them of something so terrible.
Rhonda had a kidney disease. Her kidneys were not growing and could not handle the things they needed to handle. Any food that went into her body was treated as a foreign object and immediately ejected. And those cute curly earlobes were a symptom of kidney failure.
Rhonda needed vitamins to boost her nutrition, But her little body did not absorb any nutrients from normal vitamin supplements. The doctor finally found a liquid vitamin that she could keep down and seemed to benefit her. But she needed more.
Rhonda needed to undergo dialysis. Dialysis is a treatment in which the patient is hooked up to a machine that cleanses toxins from the blood. It is extremely traumatic to the body but without treatment the person will die from the poisons in their blood.
Rhonda had her first heart attack when she was about 2 years old. When she was on that machine her little heart could not always deal with the trauma. So she had several heart attcks and a few strokes all because of something that was necessary to continue her life.
They began to plan for a transplant. Hopefully a new kidney would grow normally and Rhonda could become a normal little girl.
Rhonda was in constant discomfort. She did not have the energy to play with the other children in the family. The children seemed to understand. They tried to play near to where she was so that she would feel like a part of things. If she could not play with them they would play for her.
Rhonda's place to sit was on Grandpa's lap. She was comfortable there and very protected. And she liked the baby swing. She felt like she was in the middle of the action there.
She did not grow the way a normal child would. Because her body had been deprived of the nutrients she was tiny.
Most family members are not a good match for a transplant of organs. Siblings are the best chance but Rhonda's little brother was of course too young to be able to legally give permission for something so major.
Luckily both my brother and his wife were excellent matches. My sister-in-law really wanted it to be her that donated her kidney. The doctor told her if she did she should never have children again because with just one kidney it might be too big a strain on her system.
It was not a concern at the time. Rhonda's mother would be the donor.
During all this time Rhonda was getting older. She was the first of five babies in our family within two years. In her mother's family she was the first of six. There were a lot of babies and then little people.
My daughter was the last of the five in our family. Rhonda and my daughter were the only girls so they were fast friends. They did little girl things together that the boys were not interested in.
Often Rhonda would make calls on the neighbors in my parents' neighborhood. They were older people and they loved her company. She seemed to brighten everyone's day. She would sit and visit for a while and move to the next neighbor.
She often took my daughter who was very shy along with her. As a tribute to Rhonda my daughter continued the visits even after Rhonda died.
One of the most memorable things that Rhonda did would happen when adults were sitting and talking to each other. She would purposefully walk up to the adults, stop and just stand there watching and listening. She never interrupted. After a few moments she would just as purposefully turn and walk away.
Rhonda had a little red dress with a white pinafore. With the raised up shoulder pieces and the pinafore tied in a bow at the back with the apron-type front she looked adorable. Whenever her name is mentioned I picture her in that dress standing there silently but intently listening to the conversation of adults.
Rhonda's transplant day came. The surgery was successful but almost immediately she began to reject the new kidney. The doctors recommended that they wait about a year before trying again because she was so small. And even thought he kidney was rejecting, it was functioning so she should be stronger by that time. It should make it easier for her to recover.
She was in the hospital for so long. While she was there my youngest sister had a baby boy and my youngest brother had a baby girl. She was so proud to have new cousins. She had photos of all her cousins up on her corkboard.
I was always amused when we would go to visit because she was like a little ambassador. She took her little IV tree and pushed it from room to room to talk to other children on her floor. She comforted them and made sure they were not afraid. She was only about 6 years old and she thought of others first.
What a joyful day it was when she came home. She had more energy than she had ever had before. She played more with the other children. She still tired easily but she always had Grandpa's lap. And she was able to hold the two new babies in the family.
Now having a sick child took a toll on my brother's family. He was working two full time jobs to help take care of medical bills that were not covered by insurance. He was a union steward at his main job and had negotiated the contract so that they had some of the best medical insurance possible. But there were so many things like those special vitamins that insurance would not cover.
My sister-in-law worked part time to try to make things easier for them. And besides a sick baby they had another child who needed to be special also. It was a difficult time. And they were both very, very young.
Their marriage did not survive. Both of the adults were crushed. They tried to make things as easy on the children as possible. We all love my sister-in-law. Even today my children consider her to be their aunt (and she is). I believe they were as successful as can be under the circumstances.
So they were going to do the second transplant using my brother's kidney. Rhonda went to the hospital for all the preliminary tests and preparations. Her father would soon be there too.
One day while she was undergoing her dialysis treatment she had a stroke and lapsed into a coma. She did not respond to any treatment they tried to wake her up.
Her little brother was used to visiting her in the hospital often and was asking to see her. He had not yet been told that she was in a coma.
On my birthday that year was the all star game for the little league baseball game for the team all my boys and nephews played for. Grandpa was their coach. It was decided that my brother and sister-in-law would tell him after the game and take him to see her.
There were other decisions to make. What were they to do about all the lifesaving machines she was hooked to? They decided to unplug them.
They informed the doctor that they wanted "no heroic means to prolong her life". He said that dialysis was considered a heroic treatment so he could not comply. Somehow a compromise was reached. Without the dialysis she would be in unnecessary pain. So she would continue those treatments and if she needed other heroic treatment while on dialysis she would receive it. At other times no heroic means would be used.
During the time that she was in the coma Rhonda had 3 more strokes and 2 more heart attacks.
On my parents' wedding anniversary Rhonda died. Her pain and suffering were finally over but oh how we missed her. She was only 8 years old.
My sister-in-law wanted all of the children to be able to say goodbye to Rhonda but she did not want them to be afraid. Rhonda's funeral was designed for children. It was the most touching and beautiful fumeral I ever attended.
The minister was instructed to not say anything that would upset the children. My niece looked so pretty with that pretty white angel-hair of hers all fluffed about her face. After the services each child was given a rose to place in the coffin to be with her forever. I am crying as I write this but it really was moving.
We gathered at my sister-in-law's house after the funeral. All of the children went up to my nephew's room. He had been feeling guilty because his sister died alone. He felt like he should have been with her to make it easier for her.
I went up to check on the children. It was the first time any of them had to deal with death and the death was one of them. I wondered if they were okay.
I peeked into my nephew's room. All the children were sitting on the floor listening over and over to the Beach Boys song Help Me Rhonda. I decided they needed another activity.
A probably well-intentioned woman asked me one time if it would not have been better to let her die at the beginning of her illness. Her question hurt me more than you can imagine. But I was able to answer her.
Rhonda was a blessing to our lives. She was a purely loving child. She lived through the pain and discomfort with a grace that most people never get to see.
Our children gave of themselves to her. It was not something adults ever asked them to do. They did it because it was the right thing to do. She taught them to care about others.
In her short life Rhonda enriched the lives of everyone who knew her. If there are angels, she is one of the sweetest of them all.
Friday, January 10, 2014
Experience Wth A Vampire
I know I have mentioned that I am afraid of vampires. They are the one thing I am sure does not exist (I have to be sure) but they terrify me.
I also have to admit I am fascinated by vampires. When I was younger I watched the movies. I read Dracula by Bram Stoker. I recommend this book. I also highly recommend the Wamphyri series by Brian Lumley. Actually it is the Necroscope series if you want to go to the library and look for them. But I digress.
I no longer watch vampire movies. For one thing I am afraid. For another most "scary" movies today are more aptly just "icky" movies. They show blood and gore just for the sake of making a mess. I am not a fan of all that. I can enjoy a movie that frightens me but I do not want to be made sick.
Back in the 1970's there was a movie that was made for television about vampires. It was named Dracula and starred Jack Palance. After the children were in bed my husband and I decided to watch it.
I had a nice rocking chair that I sat in. It is where I sat when I was feeding the babies or just to relax them before bed. While I rocked them I always wore a knitted brown shawl. It seemed so cozy to drape around the baby and me. It created a cocoon that separated us from everything else.
But the kids were in bed. I sat with my shawl around my shoulders in my comfy rocker and watched this vampire movie. I was never a big fan of Jack Palance. This movie was okay but I felt no big feeling about it one way or the other. But it was about a vampire. It did spook me a little.
Before going to bed myself I suddenly realized I had no milk for the children in the morning. We lived next door to my parents at that time. One of the things that I hated the most about living in the city was that the houses are so close together. For instance the house on the other side of us was so close that there was barely room for a little walkway between the two houses.
But in this case I was lucky to have my parents so close. I decided to run next door to see if Mom had a little extra milk until I could get to the store the next day.
As I was going out I turned to my husband and joked, "If I'm not back right away, it will mean a vampire got me." Then I hurried next door in the dark of night.
Was I afraid? I was a little. I knew there are no vampires but ... well you know how it is.
I was lucky Mom had an extra gallon of milk. She told me to take the whole thing so I did! I wished them good night and went back home.
Now I have to tell you that I knew my idiot husband was going to do something to try to scare me when I got home. I knew it. And I was prepared.
What I was not prepared for was the figure that came flapping at me from the dark between the two houses. It was the size of a man but it had what appeared to be wings of some sort that were flapping crazily. I screamed as loud as it is possible to scream.
Then the figure came out from between the houses into the relative light of the night. It was my husband! He had my shawl over his head and arms and was still flapping like a vampire. He was laughing.
He went into the house with me hot on his trail. I threw the gallon of milk at him. He knew how scared I would be. Well maybe not because he told me that if he had known that I would throw the milk at him he would not have done it. Yeah, right!
Once I stopped shaking I thought I should call my parents to let them know I was okay. I peeked out the window and their house was dark. They were already in bed.
The next day I was talking to my mother and told her what had happened. She said, "We heard you scream. I looked out the window and didn't see anything so I figured you were okay and we went to bed."
What!?!? I think that perhaps, just perhaps, I was under-protected in my experience with the vampire.
Tuesday, January 7, 2014
In The Closet
My parents bought the house they were living in. It had been a three family home so they did a lot of remodeling to make it a home for one family. They knocked out walls between two small bedrooms on the first floor to make a gigantic living room. And there was a door that had been sort of between the bedrooms and the living room. It led to a large closet.
My parents used this closet to hang coats, jackets, and sweaters. Shoes and boots were kept on the floor. Christmas decorations and other things that were not used all the time were stored in the closet. It was an old house so there was no light in the closet.
My family and I spent a lot of time at my parents' house. My children liked being at Grandma's where the food always tastes better. And at Grandpa's because he always found something fun for them to do. My husband felt like he could relax which was not something he often did. I just enjoyed the feeling that comes with being around family.
It was a natural move that my children and I would stay there while I waited for my third baby. My husband had a new job out of state and I was too close to having the baby to be able to safely travel. My husband was able to join us every weekend.
On one side lived an older couple and the woman's brother. They were nice people who kept to themselves. On the other side was a young family with four little girls. The youngest girl was about the same age as my second son.
One day my boys were outside playing. The youngest was with the little girl playing in her yard. My mother was not home and I was enjoying some quiet time in the house.
My three year old son came rushing into the house and made a bee-line for the closet and shut the door!
I was sitting there wondering what on earth he was doing. It was amusing the way he rushed in. Then there was a firm knock on the front door. I answered it.
There stood the neighbor who lived on the other side of the little girl's family. He was holding a mudball that was about the size of a soccer ball. He looked like he was offering it to me. I did not want it.
"Is that little blonde kid yours?" I said that he was. "Well he and the little girl next door just threw this at my bathroom window!" Again offering me the mudball. I still did not want it.
I asked him if the window was broken. That was not the point but no it was not broken.
I looked over at his house and sure enough there was a big spot that had obviously been made by a big ball of mud. I assured him that I would talk to my son and make sure nothing like that ever happened again.
He became totally outraged. Sherry (the little girl next door) had been with my son. When the man confronted her parents, they grabbed her and spanked her. He wanted my son punished too. I told him firmly that I was not going to spank my child in front of him just to make him happy. I would take care of it but in my own way. He was still sputtering as I closed the door.
I then had my son come out of the closet. I explained that we do not throw mud at people's windows. Then we went together to the man's house. I had my son apologize and offer to clean the window. The man declined.
I have told you before that my mother was a resourceful woman. Well she decided to collect returnable pop bottles. She would turn them in once a week to collect the deposit on them and put the money in a special bank account. It kept the neighborhood cleaner and she was getting an extra bit of cash. She was going to buy a car with it.
And buy a car she did. It was a used model that needed a paint job but it ran good. She painted it herself with some spray paint she had. It was fluorescent blue paint and the car glowed in the dark.
One night a police helicopter noticed the glow and came down to investigate. They were astounded and amused.
So Mom had her car. After a few months she began to complain that it was making a "chirping" noise. Daddy drove it around the block and heard nothing. As time went on Mom said the noise was getting worse.
On a Saturday Mom was going to the grocery store. I was sitting in a chair feeling huge and bloated awaiting the imminent birth of my third child. Mom said the chirping noise was getting worse and worse so Daddy told her that when she came back from the store she should honk the horn. Then he would go to the front door and she could move the car back and forth so he could listen.
After about an hour and a half we heard the horn. Daddy sat there. I told him that Mom was honking for him so he heaved that put-upon sigh that he had and went to the door.
Mom was driving forward, then backing up so he could hear the noise. A look of horror came over Daddy's face. He turned from the door. On his way to the closet he said, "I just can't stand watching your mother try to park the car." Into the closet he went and closed the door.
I was still laughing uncontrollably when Mom came in to see where he went.
Eventually they knocked out the wall in the closet to make an entrance to the rooms that my parents were going to use as their room. I miss the closet.
Friday, January 3, 2014
Emergency Room
My children certainly had their share of accidents. I feel I was a good mother. I watched over them carefully but somehow they still managed to get hurt. Not all of their escapades made it to the emergency room but a good many of them did.
My oldest son was not emergency room prone. No. He had to take it further. He was born with two thumbs on one hand. When he was about 9 months old he had surgery to remove the extra one.
After many x-rays the doctors had determined that unlike many extra appendages, my son's extra thumb was an actual thumb. Most extras are simply made of cartilage and are easily removed. Because my son's thumbs were both made up of bones, muscles, ligaments, tendons, and skin and seemed to be equal in every way it was decided to remove the outer one.
The surgery was successful but he needed physical therapy to strengthen the remaining thumb. Metal braces to try to encourage the thumb to grow straight were made.
The knuckle of the remaining thumb bent from side to side rather than from back to front. Another surgery when he was 4 was to straighten the thumb and restructure the knuckle so it would bend properly.
After the surgery his hand and arm were in a cast up to the middle of his upper arm for about 6 weeks. He made good use of that cast. Whenever someone tried to disagree with him he conked them in the head with it.
When it finally came off the smell was unbearable. And all that dead skin. Then when the doctor slid out the two metal pins that had been inserted in my son's hand and arm to hold everything in place, my son started to scream. And scream, and scream. It was not from pain but how would you like to see six inch metal rods coming from inside your arms?
The operation was a success. My son's thumb is normal sized. Many people in his position have a remaining thumb that is still the size it was when they were babies. He cannot grip with it because the knuckle does not lock into place... it just keeps bending. One interesting thing is that when they do surgeries to reconstruct a thumb, they come out with a digit that resembles a finger more than a thumb.
We lived in a small town. We owned an old pickup truck that I drove the places we wanted to go. I would get the two older boys in the truck then place a baby on the lap of each one. My oldest son usually sat nearest to the door and held his baby sister.
One day as I was turning the corner, the door flew open. My son felt himself falling out. He managed to throw his little sister to his brother before he fell. He was up and running before I could stop the truck. There were no injuries except for a scrape from the gravel on his upper lip. He insisted on wearing a bandaid over that scrape for days.
Son number one had to have his tonsils removed when he was 5. They would not let me spend the night at the hospital with him so I promised I would be there bright and early before he went to surgery. I went to the hospital earlier than expected but they had taken him to surgery even earlier.
When my son came out of surgery he was still asleep. But when he woke up he began to scream. I told you he was a screamer. Finally the nurse came in and gave him a sedative to put him back to sleep in hopes that he would calm down. All that screaming could cause hemorrhaging. The sedative worked.
Son number two was interesting in the injuries he chose. He was the one who would open a drawer of the desk, then when he went to close it he would shut his fingers in it. Then he would pull the drawer open and shut his fingers in it again.
One time I was sitting in my chair mending some clothes. My son was still in diapers. He was sitting across the room from me facing the wall. I watched in amusement as he would reach his little arm straight in front of him then pull it quickly back and do a little shimmy. After he did this about 6 times (I am not real quick) I got up to see what kind of game he was playing.
That was when I saw the nail sticking out of the electrical outlet. He was reaching for it again. I stopped him. He was trying to get the nail out after he had stuck it in there and getting a little jolt when he would touch it. No emergency room required.
I do not know what possessed him to pull a can lid out of the trash but he did. He was playing with it and cut his thumb. It was a deep gash so off we went to the emergency room. Several stitches later we went home.
When the stitches came out the edges of the wound were still a little ugly. He insisted on wrapping a tissue around his thumb because he was afraid it was going to bleed again. The assistant pricipal at school sent him home and said he could not come back until I sent a note from the doctor stating that it was healed.
Somehow a wooden toothpick was embedded in the carpet. My son was crawling around playing and managed to get the toothpick up under his knee cap. Off we went to the emergency room. It was a relatively simple procedure to remove it. My son felt no further effects from it.
The most frightening injury happened to him when he was an adult. He was watching television when two men broke into his house to rob him. When he protested they shot him. One shot into each leg. Because he did not want to scare me he called his sister who called me.
They were releasing him from the hospital and he needed a ride home. There was nothing they could do for him except tell him to try to stay off his feet until his legs healed. They were unable to remove the bullets so he still has a bullet in each of his legs.
My third son broke things. The kids were climbing a tree and he lost his footing and fell. Luckily his foot got caught on a branch so he did not fall all the way to the ground but his arm hit against the tree. To the emergency room we went. His arm was broken.
The day the cast came off his arm was a sunny day. When we returned from the doctor my son was riding his bike. It had no brakes so the kids stopped it by using their foot as a brake. My son put down his foot to stop and let out a scream. His foot was broken.
He waited a while before the next break. I do not even remember how he did it. But I recognized the scream. We went strainght to the emergency room. His bone was not actually broken. Young childrens' bones are still fairly soft. When he landed he wrinkled the bone in his arm. The doctor had to stretch his arm out to pull out the wrinkle before they put a cast on it.
Another time he broke his leg again. And again I do not even remember how. But I do remember the time he and his brother were fighting. My son went running up the stairs to try to escape from his bigger brother. He lost his footing and fell against the stairs. He hit his hand on the edge of the step and broke it.
This child had the nerve to ask me if he could try out for the football team in high school. I told him, "Absolutely not! You break to easily."
The only accident he had that did not involve broken bones was the time he took a hatchet to a can of WD40. The contents of the can exploded into his eyes. I grabbed a gallon jug of water and flipped him upside down to flush as much as I could from his eyes before rushing him to the emergency room. Luckily no permanent damage was done. Although he says now that he believes that incident is the reason he is color blind.
My darling daughter. Sugar and spice and everything nice. A beautiful bit of fluff. So soft and feminine. Well... not quite.
When she was about 2 we were loading the pickup to go to the store. Her brother, my second son, was her lap that day. He closed the door and she immediately screamed. He had closed it on her fingers. He looked puzzled so I tried to stay calm and said in a very quiet even voice, "Open the door. Open the door. Open the door." It finally sunk in and her released her little fingers.
Instead of the store we went to the emergency room. Amazingly no bones were broken but her little hand was bruised. Her brother felt awful.
One rare day the kids got a visit from their father. When the visit was over he was driving away. My daughter had on her roller skates and decided to race him. She was on the sidewalk and only slightly behind. He went around the corner. She hit a rock and flipped head over heels.
When she got up she had a gash on her chin. She got several stitches to close it. They did a good job. She barely has a scar.
Most of her injuries happened as she got older. As a manager of a pizza place she had to know how to perform every job in the place. As an industrious worker she did every job in the place. She was constantly cutting her fingers. Several times she needed stitches.
Once she got a small piece of metal in her eye somehow. I took her to the emergency room and they used a magnet to remove it.
She always complained about her weird feet. She said they were deformed. Actually they were bunionettes. She had surgery on the first one. It was an outpatient procedure and I took her home as soon as she was alert enough to go.
She was still on crutches when she was allowed to go back to work. She was being siily and slipped and fell. There were wires in her foot that needed to be fixed. Being cautious is not her long suit.
At the hospital the nurses once told me they were going to reserve one of the treatment rooms just for my children. We laughed of course.
I have never really concerned myself with what other people think. I did start to think about all the times my children had been in that little room. All I could do was hope the medical personnel realized that these were all freak accidents. I certainly did not want them to call someone to investigate.
So now my children are grown. If they need medical treatment they have others to tend to them. If my grandchildren need emergency care, my children do it. I am happy to assist and occasionally I have but I do not miss the days of the emergency room.
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