As they drove along, they watched the black night scenery flash past. It was like watching Betsy's life, their beloved daughter's world, flashing away. A terrible dread was sinking into Carl and Megan, a dread that, if it were true, would wreck Betsy's whole life, forever, if she survived this episode.
Megan turned to Carl, “I think this is it.”
Carl turned to Megan, “I think this is it too.” Then, his gaze lingered upon his wife and he paused, “Whatever 'it' is.”
“What do you mean?” stuttered Megan, although she knew too.
Carl shook his head. “I don't know how our daughter's life is going to work out. If Betsy survives this reaction she can never ever wear clothes again.”
Megan looked her husband in the eyes, “I know dear,” she cried. “And she'd become a hermit; she'd have to be. She'll never know human society, never meet anyone; never find anyone who loves her, or even respects her. She'll be the naked girl no one ever sees, and she'll never see anyone...” Megan paused, gazing at Carl, “except us.”
At last they arrived at the hospital. The paramedics carried Betsy out and her parents followed. They carried Betsy to a room where a doctor worked. As a matter of fact, it was the very same doctor the family had seen months before.
“Betsy Parker again, is it?” he asked, as he looked at the swollen baby.
Carl nodded in a nervous, agitated manner. “Dr. Crown!” he cried. “What can we do? We've done everything we could to look after her. We even used plastic diapers and applied the cream you prescribed.”
“I understand that,” he replied. He looked at the hospital bed; then he looked at the baby as though he, himself, was unsure of what to do.
“She's definitely going to take at least a few days to recover,” he explained. “She will have to remain in the hospital all that time.”
One minute later, Betsy was laid down on the hospital bed, with an intravenous pumping antihistamine into her. Her crying gradually slowed, but it was still loud and her health was still at stake.
The doctor sat her up on the bed so that less of her skin would come into contact with the sheets. Later, when this was making some, but not very much, difference, he held Betsy in his hands, and turned to the parents.
“She seems to be allergic to almost everything,” the doctor told them. “How much has she developed in her motor skills?”
“She's been able to hold things for a few weeks now,” Carl explained. “The other morning, we noticed her trying to hold herself up by grabbing onto one of the bars of her crib.”
The doctor thought for another minute. Then, he positioned Betsy to stand on her feet, and guided her hands to clasp the bedside railing. It was the darnedest thing the parents, the doctor, and possibly anyone had ever seen; a naked nine-month-old baby, with a nasty rash all over her, positioned by a doctor to stand on a hospital bed and hold onto the railing.
But nobody was laughing; not the doctor, and certainly not Betsy's parents.
“Come here,” Dr. Crown motioned. Carl and Megan listened intently to the doctor.
“It appears your daughter has a peculiar kind of allergic reaction that affects her on the exterior. Perhaps, anything that touches her skin could spark an allergic reaction just like the one you have seen tonight, and threaten her very life.”
“Has this ever happened before?” Carl asked, “on a person's outside?”
“I have never seen it, nor heard of it,” he said. “I will do some digging; make some contacts in my medical group, and do some research to see of this has ever happened before. It might very well be possible that nobody has ever had a condition like this in the history of humankind. Carl and Megan, I might be wrong, but it could be that your daughter is truly unique. As far as I know, there is no name for her condition, as I have never observed it before, and it quite possibly will never happen to anyone again.”
“Oh, I hope it never happens to anyone again,” stuttered Megan. “But what about our daughter? What will we do about her?”
For once, even the doctor was lost for words. He didn't answer the question. He simply stood there, in deep thought, considering Betsy's condition, and what the outcome would be from everything her parents could possibly do.
At last, he sighed, “I'm sorry. So so sorry.” Then he returned to silence.
For a long time, nobody said a word. Carl and Megan's worst fear had been realized. The doctor's diagnosis had ended everything. They looked at their victimized, defenceless daughter. Her skin was showing the first signs of getting better, but Carl and Megan couldn't think of any way their daughter would ever be happy.
Megan turned to the doctor once again, in hope that this extensive period of contemplation would have put some kind of idea in his mind; something that would give Carl and Megan at least a molecule of hope. “What can we do to help Betsy?”
The doctor looked at the couple again, and said, just as before, “Carl and Megan. I am so sorry.”
“No!” the mother insisted. “That doesn't help! What are we going to do?”
The doctor sighed again, and another moment of silence passed. Finally he spoke.
“As long as Betsy keeps having these allergic reactions, you will have to keep her inside at all times,” he explained. “She will never be able to go anywhere in public. You will have to homeschool her. Keep an epi-pen with you at all times. I'm really sorry, both of you, but your daughter will be a hermit. You will have to be very careful with her, and she'll never be able to meet any other children.”
“She can't stay inside forever!” protested Carl. “It will ruin her! It will destroy her life!”
“I'm sorry,” explained the doctor, “but the law is the law. You take her out in public naked, and nobody's going to understand. People will stare at your daughter; people will turn away in embarrassment. You will get arrested for indecent exposure.”
“We can take it to court!” Carl cried. “We can fight the law, tooth and nail. Nobody is shutting our Betsy away; not now, not ever!”
“I wouldn't recommend it,” replied the doctor, “Legally, or societally, you will lose. Certain cultural attitudes are set in stone. Even if you take it to court and win, not everyone is going to understand. In fact, I wouldn't be surprised if most people don't.”
Carl and Megan looked once again at Betsy, whose rash was starting to fade. It appeared that her condition was stable, and she would make it through this reaction alive.
“I think I have done what I can for tonight,” the doctor told the parents. “If you have any more questions, I can bring in a nurse.”
“Thank you,” Megan smiled. “That would be most helpful.”
As the doctor left, Carl continued to position Betsy in the same way that the doctor had been.
A few minutes later, a nurse, by the name of Sheila, entered the room, and the doctor left.
“Will she ever get over this allergy?” Megan asked. “Will she ever be able to wear clothing and live life like a normal person?”
“There is no way we can predict what will come of Betsy's situation at this stage,” the nurse said. “We will have to see.”
“All the same, we have to give her a chance,” said Megan. “Even if Betsy will never be happy, loved, understood, or cared for by anyone except ourselves, we have to take care of her in the best way we can. She is our daughter; we brought her into the world and it is up to us to give her at least a chance at life.”
“Of course it is, and of course you love her,” the nurse replied.
“What about water?” Carl asked. “Will we be able to at least bathe our daughter?”
“Water should be fine,” the nurse explained. “The human body is 70% water. Betsy's skin attacks anything that is foreign to it, and water wouldn't be foreign.”
“What about her feet and hands? Will she get really sick just by walking or holding anything?”
“I can't make any promises, as I believe nobody on Earth has had anything like this before,” continued the nu
rse, “but I would speculate that since Betsy's skin on her hands and on the bottoms of her feet has not yet reacted, these areas, and probably only these areas, coming into contact with anything wouldn't make her react.”
The couple looked at Betsy again. The nurse was continuing to make her hold onto the railing of the bed. Her condition wasn't worsening, but the parents didn't feel confident. Her condition had improved on the last visit to the hospital, and now, this was happening tonight. Her hands and feet were not out of the question.
“What will we do while she is still too young to use the potty or toilet?” Megan asked.
“Look for cues,” explained the nurse. “Believe it or not, some parents raise their babies without the aid of diapers. These sorts of parents look for cues from their baby when their baby has something to eliminate. If Betsy holds up her hand, or looks you in the face for an extended period of time, take her to the potty right away.”
“What about her learning to use the toilet?” Megan asked.
“You'll have to sit her on the toilet in a way that only her feet touch the seat,” explained the nurse.
“Can we use soap to get her clean?” Carl asked.
“There are some natural remedy soaps that are very soft on the skin,” replied the nurse. “Most of their ingredients are not much different from the body's chemistry, so they should be safe. You can dilute it in water to minimize the risk of a reaction. Then, bathe her again in plain water to wash any soap residue off. If she ever reacts to the soap, stop using it right away, and wash her with water only. It's better that she's only partly clean than she is fatally ill. Do you have a fireplace in your house?”
“We do,” Carl replied. “It really helps us feel warm in the winter.”
“At the end of every bath, perhaps you could light your fireplace and let her dry off in the living room. Any method of air drying will be all right for Betsy, but the warmer the method, the more Betsy will appreciate it. However, do not use a blow dryer on her, at least in her baby and toddler years, as the loud noise and harsh gust of air could scare her.”
Carl spoke up again. “And speaking of 'not much different from the body's chemistry' will she be able to tolerate other peoples' skin? Other human skin will be hardly different from her own, and we would at least like to be able to hold and hug our daughter. Megan will still need to breastfeed her.”
“I'm pretty well certain she won't have any reactions to other peoples' skin,” the nurse replied. “You just won't be able to have any clothes on the areas where you touch or hold her. While she's a baby, it will be easy for you two to pick her up and hold her as long as you're simply shirtless.”
“And toilet paper?” asked Megan. “How can we clean her up after she poops?”
“We'll just have to connect a hose from the sink and spray her clean over the toilet,” Carl replied. “We can also make a spray-bottle of the diluted soap solution, that the nurse just recommended, for good measure, and spray some of that on her before we hose her off.”
“What about going to bed?” asked Megan.
Another moment of silence followed with the parents, and nurse, completely baffled as to what to do. At the end of all this time, nurse Sheila spoke up once more.
“If you can give Betsy something soft to lie on, something that she wouldn't react to, you would be able to give her a place to sleep. I have heard that silicon is quite versatile. I have a friend called Ellen who makes and sells silicon placemats and picnic cloths. I could contact her and ask if she can make a water mattress out of silicon, and a silicon sheet over top of it. It's not perfect, and I cannot guarantee it will work, but in this case, nothing is going to be perfect. I will be in contact with her first thing when my shift for tonight ends. Then, I'm pretty sure Betsy's bed will be ready by the time she's better enough to leave the hospital. What do you think Megan?”
“Oh Sheila,” she sighed. “I think, given the circumstances, it's a brilliant idea. Perhaps even the best or only idea. We will implement it first thing when we get home.”
Betsy's condition steadily improved, and she made it through the incident alive and well, but she had to remain in the hospital for four days.
4 A Happy Bath
At last, the parents and the baby arrived home. Dr. Crown had contacted his associates, and read every article he could find regarding skin rashes, childhood development, and allergic reactions. Alas, he could find nothing, and his colleagues could not match Betsy's case with any other. With those findings, Dr. Crown concluded that there was, indeed, no instance of an allergy anywhere in the world, or in history, that resembled Betsy's. Dr. Crown had invented what he felt was the best-fitting name for Betsy's condition: eosinophilic externitis.
As requested, nurse Sheila's friend, Ellen, had made a waterbed for Betsy out of silicon. When Carl and Megan had brought Betsy home from the hospital, they made a side trip to pick up Betsy's bed, and buy a potty as well. Upon arriving home, the first thing Carl and Megan did was put Betsy down on the bed. She sprawled herself out on her new mattress as though it was the most comfortable invention in the world. What pleased Carl and Megan even more was that Betsy's skin seemed to be okay with this substance.
But even with Betsy being happy and comfortable, Megan was crying again.
“Carl!” Megan sobbed. “I can't help it.”
“There has to be some way,” Carl explained to his wife. “I can't think of it at the moment, but there has to be something we can do, so that Betsy doesn't have to live her life entirely alone.”
“Like what?” Megan cried.
Carl spent a minute thinking. Both parents had come from a rather large family. Megan was the youngest of three children, with an older sister and older brother, with the brother as the middle child. Carl was the oldest of five children, and had four younger sisters, making him the only boy. However, Carl, Megan and Betsy did not live anywhere near their immediate family anymore, due to how their education and jobs had played out. “Maybe the neighbors will be understanding enough to let Betsy come over once in a while. They live next door to us after all; they might start feeling sympathetic enough to Betsy to have her over. Also, we can always have another child. Even if Betsy can't have any friends, she will at least be able to have a sibling.”
“Yeah, I suppose,” Megan replied. “We will give that matter some consideration.”
Carl opened the box he had just purchased.
“I'll fill the kitchen sink while you're setting that up,” Megan explained. “Then, we'll put Betsy in the water to stretch herself out. It will be good for her, and she'll like it.”
“She'll need to sit down sometimes too,” stated Carl. “Betsy won't want to stand, or kneel, all the time, and it won't be good for her muscles. Even if it's just to eat meals, she'll have to sit at some point.”
“We can have a silicon pad designed for her to sit on, as well as the waterbed we've designed for her,” Megan replied.
Carl continued thinking for a moment. “If she sleeps in a silicon bed, maybe we could have clothes designed for Betsy made out of silicon.”
Megan shook her head. “There would be no point, dear. Clothes made of silicon would be transparent, rendering them useless. We couldn't put a dye in them either, to make them opaque, because Betsy would probably be allergic to it. Besides, silicon would not make practical clothing material. It would be very difficult and awkward for her to walk and move around.”
However, Carl persisted on considering the situation. “What we could do,” he suggested after further thought, “would be to have silicon clothing designed to cover just her waist and chest like a bathing suit, and glue cloth onto the silicon. It won't be proper clothing, but at least she'll be wearing something, and it shouldn't restrict her movement. It would look odd, but it would be better than nothing.”
Megan gave Carl's suggestion a moment's thought. “Perhaps,” she replied. “That doesn't sound like too bad a suggestion, given the situation. Actually, I think it might work. W
e'll suggest that to Ellen and have her try it out. For now, I think the best thing for Betsy would be a bath in the sink to stretch herself out.”
Carl assembled the potty, while Megan stepped into the kitchen. She held Betsy in one arm. With the other, she put the plug in the sink and turned the water on. By the time Carl was finished, Megan had filled the sink with water.
“Now let's see how our baby likes this,” Carl smiled.
Megan lowered Betsy into the water, and she immediately giggled and smiled. She stretched her legs out and waved her arms in the water.
Carl and Megan gazed at Betsy in the water in the sink in awe and admiration; their baby, happy at last, at total ease and comfort, splashing in the water. Her eyes were sparkling and the tip of her tongue was extending out of her smiling mouth.
“You stay there,” Carl grinned. “I'll go get the camera.”
He dashed out of the kitchen, fetched his camera from the bedroom, returned, and took a picture.
“This will be the most wonderful picture in my life,” cried Carl, a smile spreading all the way across his face. “We will both treasure it forever.”
At the end of Betsy's bath, Carl and Megan lit the fireplace, and carried Betsy into the living room. As the fire crackled and Betsy's skin dried, she smiled, and gazed with wide eyes at the fire.
It was a happy day for the Parkers after all. .
5 The Love of Christmas
The days turned into weeks; the weeks turned into months, and, before Betsy's parents knew it, their daughter was learning to crawl.
The prospect of crawling made Betsy's parents nervous, as they thought that she would inevitably let her knees touch the floor, which would make her react. However, when Betsy started to crawl, Megan was able to guide Betsy as she crawled so that her knees stayed away from the floor. Betsy's parents dreaded having to take her back to the hospital, but at least her epi-pen was available.
Carl's suggestion of the silicon bathing-suit-like clothing didn't work. The Parkers had “clothes” designed for Betsy in this fashion, but, the moment Carl and Megan dressed Betsy in them, she reacted everywhere on her skin where the silicon was covering her. Her parents had to send her back to the hospital for the afternoon, and Dr. Crown arrived at the conclusion that Betsy's skin simply did not like being wrapped up, and so it had reacted to the silicon because her body yearned to be free of this substance that was trying to bundle it.
The Sheltered Life of Betsy Parker Page 2
