Tuesday, January 14, 2014
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.