Friday, January 12, 2018

Oh My

I'm having some serious problems with my computer. I will try to get this posted quickly before it crashes again.

I have to get a new one. Hope to be posting again by the end of next week. Talk to you then.

Emma

Tuesday, January 9, 2018

What We Learned From Rhonda


 Because her birthday is later this month I am reposting this as a tribute to Rhonda, my niece. Unfortunately the same problems still exist today.


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?

Friday, January 5, 2018

Rhonda


My niece would have been 46 years old toward the end of this month. We all miss her and her loving nature. I feel this is a timely story. It is a repost that I originally wrote a coule of years ago.




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 the 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.

Tuesday, January 2, 2018

Baby It's Cold Outside


So here we are in the new year of 2018. Many of us have high expectations for this year. Some of us have made resolutions to improve our lives. Some like Rick and Jilda make vision boards to lay out their plans and expectations for the year.

So we have had really cold weather since before Christmas. By cold I mean always below zero at night. This past week our high temperatures of the day have often not been  above zero ddegrees.

Tomorrow it is supposed to be eighteen degrees above zero for a high. But down to twenty four below tonight. My brand new furnace has really been working hard. Weather like this makes me happy to have it.

We have not had as much snow as many around us have. Only maybe three or four inches are on the ground right now. It could certainly be worse.

I hope all of you in the middle of this cold snap are staying warm.

I am a poor one to write about expectations for the year. I am an optimist by nature so I always look for the best. I do have a few hopes. I hope some of my children an grandchildren will be able to visit this year. And I hope for no big financial setbacks. Two simple hopes.

I am a worse one to write about resolutions. I do not really believe in New Year's resolutions. They are a good idea in theory. Z person might resolve to give up a bad habit, or put their finances right, or to lose weight. All are noble goals. But without a bit of planning they are doomed to fail.

When the resolution fails the person feels like a failure.

Perhaps it might be better to set short term goals such as I will not eat chocolate for four days. It would be an easier goal. Then if desired another four days could be a goal. But who knows?

I like the idea of vision boards. But they seem like a lot of planning.

I have always been a fly-by-the-seat-of-my-pants kind of person. That is why I have very little in the way of "things". But I was not impressed by "thungs" so it works well for me.

Kay G. askedd me what one word would be what I wish in the new year. My answer was serenity. What is yours?