“Lord, another baby?” the angel asked with a bit of incredulity.
“Yes, another,” the Lord replied.
“But, Lord, why this baby?”
“Why not this baby?” the Lord countered.
“Well, you know, Lord. The mother said that she could handle any physical problem. As long as there were no mental defects, she could manage...” The angel stopped, wondering perhaps why more needed to be said.
“She did say that, didn’t she?” The Lord was unperturbed.
“Lord, this one will have a mental deficit.”
“Yes.”
“A very serious one.”
“Yes.”
“An obviousto-everyone serious one.”
“Yes.”
“But, Lord, she said she could not cope with that.”
“She will cope. I will help.”
“But, Lord, she does not know You exist.”
“The baby does.”
God works in mysterious ways, thought the angel and put away the record book after recording: Don & Elizabeth Mahlou…baby son, Doah.
copyright 2010
---------------
Excerpted from my work in progress, Raising God's Rainbow Makers.
Showing posts with label Raising God's Rainbow Makers. Show all posts
Showing posts with label Raising God's Rainbow Makers. Show all posts
Monday, August 30, 2010
Saturday, July 31, 2010
Dr. Underwood
Dr. Underwood and I had met under difficult circumstances when we were living in Washington, D. C. during my stint of duty at the U. S. Department of State. I had made a Monday appointment at Georgetown University Hospital to which Donnie and I had decided to transfer Noelle’s care. On Saturday, in the middle of the night, while the records were in transit and her care in the process of being moved from one hospital to another, Noelle’s shunt malfunctioned. There was no question where to take her. Georgetown University was five minutes from our house; the other hospital was a 45-minute drive.
The young neurosurgeon on duty that night at Georgetown University Hospital went through the normal procedures to determine that the vomiting and pain was from the shunt and not from a stomach problem. “Tell me how many fingers you see,” he directed 11-year-old Noelle.
“Forget about your fingers,” said Noelle wanly. “I can’t breathe. Do something about that!” With those words, she stopped breathing.
The emergency room was suddenly alive with doctors and nurses, carts and paddles. We were quickly ushered to a waiting room. We would have preferred to stay in the emergency room, but these doctors and nurses did not know us and did not realize that we would not have been in the way and might even have been able to help. Realizing that arguing was going to waste precious time, we complied with the request to wait in the waiting room for the results of medical intervention.
Fortunately, we did not have to wait long. The paddles got Noelle breathing again. The resident informed us that he had called the doctor who would be the attending physician, Dr. Underwood, at this happy hour of 2:00 in the morning and got him out of bed. He would be in soon to install a new shunt portion.
Within just a few minutes, indeed, Dr. Underwood showed up. He told us that Noelle was in acute hydrocephalus (she had not become shunt-independent as many hydrocephalic children ultimately do) and that he would need to operate to repair the shunt. Since no records were available, he asked me to recite as much of Noelle’s medical records as I could remember. As it turned out, it would take three surgeries, each two weeks apart, to get Noelle’s hydrocephalus under control again. He replaced the brain portion of the shunt first, leaving the older tubing in the peritoneum since it was functioning fine. Then he had to replace the valve because I had forgotten to mention that she could not tolerate medium pressure, the default valve type used in cases where records are not available. Finally, it turned out that the peritoneal end of the shunt was not really functioning fine; it had become trapped in the peritoneal tissue and so the third revision in six weeks was undertaken.
Dr. Underwood and I came to know each other well during these weeks. In making rounds after the third revision, Dr. Underwood hesitated as he was leaving Noelle’s room, turned to me, and flabbergasted me with his words, “You know, when I put in the new valve, I looked at the lower portion of the shunt and decided not to replace it since it was working. I could kick myself now for not taking care of it all at the same time.”
How did he dare say that to a parent in these days of rampant lawsuits, I wondered. And especially to me! Did he know that I was the scourge of many clinics and hospitals because I questioned everything the doctors and hospitals did and made them re-think or took my children to different doctors when I thought they were wrong? Did he know that I was an outspoken advocate for my children? Was he not afraid of my reaction upon hearing these words of fallibility? Or did he know that I had great respect for honesty and integrity? Did he understand, intuitively, that I could handle any truth; it was the partial truths and manipulations that caused me to take out my lance and pierce one doctor after another?
Copyright 2010
The young neurosurgeon on duty that night at Georgetown University Hospital went through the normal procedures to determine that the vomiting and pain was from the shunt and not from a stomach problem. “Tell me how many fingers you see,” he directed 11-year-old Noelle.
“Forget about your fingers,” said Noelle wanly. “I can’t breathe. Do something about that!” With those words, she stopped breathing.
The emergency room was suddenly alive with doctors and nurses, carts and paddles. We were quickly ushered to a waiting room. We would have preferred to stay in the emergency room, but these doctors and nurses did not know us and did not realize that we would not have been in the way and might even have been able to help. Realizing that arguing was going to waste precious time, we complied with the request to wait in the waiting room for the results of medical intervention.
Fortunately, we did not have to wait long. The paddles got Noelle breathing again. The resident informed us that he had called the doctor who would be the attending physician, Dr. Underwood, at this happy hour of 2:00 in the morning and got him out of bed. He would be in soon to install a new shunt portion.
Within just a few minutes, indeed, Dr. Underwood showed up. He told us that Noelle was in acute hydrocephalus (she had not become shunt-independent as many hydrocephalic children ultimately do) and that he would need to operate to repair the shunt. Since no records were available, he asked me to recite as much of Noelle’s medical records as I could remember. As it turned out, it would take three surgeries, each two weeks apart, to get Noelle’s hydrocephalus under control again. He replaced the brain portion of the shunt first, leaving the older tubing in the peritoneum since it was functioning fine. Then he had to replace the valve because I had forgotten to mention that she could not tolerate medium pressure, the default valve type used in cases where records are not available. Finally, it turned out that the peritoneal end of the shunt was not really functioning fine; it had become trapped in the peritoneal tissue and so the third revision in six weeks was undertaken.
Dr. Underwood and I came to know each other well during these weeks. In making rounds after the third revision, Dr. Underwood hesitated as he was leaving Noelle’s room, turned to me, and flabbergasted me with his words, “You know, when I put in the new valve, I looked at the lower portion of the shunt and decided not to replace it since it was working. I could kick myself now for not taking care of it all at the same time.”
How did he dare say that to a parent in these days of rampant lawsuits, I wondered. And especially to me! Did he know that I was the scourge of many clinics and hospitals because I questioned everything the doctors and hospitals did and made them re-think or took my children to different doctors when I thought they were wrong? Did he know that I was an outspoken advocate for my children? Was he not afraid of my reaction upon hearing these words of fallibility? Or did he know that I had great respect for honesty and integrity? Did he understand, intuitively, that I could handle any truth; it was the partial truths and manipulations that caused me to take out my lance and pierce one doctor after another?
Copyright 2010
Friday, July 30, 2010
Why Noelle?
Although Noelle was our second child, she was chronologically the first child to introduce us to the world of exceptional children, a world in which we would live forever thereafter. Lizzie would do that in a different way a couple of years later, but at the time that Noelle was born, we did not know that Lizzie was gifted; all we knew was that her stages of growth did not match the baby manuals, so we threw them all away about the time she was a year old. Therefore, when Noelle arrived, we did not even try to find a manual for her, but we did read everything we could find about spina bifida and later, hydrocephalus, and after that epilepsy. In between we learned about lesser concerns: a neurogenic bladder, lack of bowel control, colostomy care, range of motion exercises, breastfeeding a special needs baby, and on and on — a number of things which I have fortunately forgotten and another number of things that are too numerous and relatively minor to include here.
When you have a child with a life-threatening birth defect, you can feel very alone. This is especially the case when grandparents do not step up to the bat. Both sets of our parents were shocked by Noelle’s birth and immediately began professing that “their” side was not to blame. Our parents’ finger-pointing at each other, rather than their jumping in to help us, isolated us even more in the days of Noelle’s early surgeries. We, in contrast, blamed no one. We did not blame either set of parents; the appearance of spina bifida is a matter of both parents having some genetic weakness. We did not blame the obstetrical doctors for not warning us: at that time in history, there was no way they could have known. We did not blame ourselves: we had done everything we could to ensure a healthy pregnancy. We did not blame God: we did not know God existed. So, there was no need to ask “Why us?” “Why not us?” would have been an equally good question. Gene selection is a matter of chance; every biology student knows that. The need for our parents to place blame, however, tore away from us a potential source of support.
We did have solace and help, fortunately. They came serendipitously to us in the form of friends. As in childhood, in adulthood I gathered friends around me. I may have been an atheist in mind, but in heart I was surrounded by God’s influence through friends, many of them believers and most, if not all, of them bringing me comfort and giving me the opportunity and pleasure of helping them. As someone (wish I knew who it was) once said, friends are God’s way of taking care of people on this earth.
Some friends helped out with action. The hospital where Noelle was born could not handle her medical problems and so airlifted her from San Angelo, Texas, where she had been born 250 miles south to Wilford Hall Medical Center at Lackland Air Force Base in San Antonio. I signed myself out of the hospital that same day over the medical staff’s objections, and Charles and I headed south. It turned out that Noelle would need multiple surgeries and we would need to spend several weeks in San Antonio. I called friends at Ravalli Federal Credit Union in Hamilton, Montana, where we had our savings account, and the treasurer not only made out the check the same day but drove it 50 miles north to the Missoula post office so that it would go out by air immediately, rather then wending its way by ground to Missoula and then on out.
Other friends provided emotional support. When many people did not know what to say upon hearing of Noelle’s birth defects and met the birth announcement with silence, David and Diane Edgerly (Dave-Bear and Di, as they were known to Lizzie, our oldest daughter, whom they had frequently babysat) responded differently. NCOs in the U. S. Army (yes, I was a sergeant in the U. S. Army when Noelle was born and, while she slept in a baby chair beside me, was promoted to officer ranks, the only person ever in the Army with the dubious distinction of having stood a direct commissioning board in maternity clothes), Dave-Bear and Di had recently been transferred to Germany, but as soon as they received the birth announcement, which included the information about Noelle’s condition, they wrote a very simple note that gave us great heart and a very warm feeling, the first in a long time: “Welcome, Noelle; Dave Bear and Di love you, too.”
So many people helped then and later. All along the way we have had the support of friends, and so have our children as they have grown. Amazingly, these friends have been grateful for the opportunity to help. Even strangers have helped on many occasions and have clearly felt pleasure from doing so. Sometimes they even were rewarded in other ways.
Nadezhda Long recently described to me the impact on her children, whom, when they were young, Noelle babysat. When Liza and Sasha, Nadezhda’s children, were in grades 3 and 5, Nadezhda bought them velvet dresses for Christmas. After watching a Christmas play that focused on humanitarian values, Liza and Sasha begged Nadezhda to let them take back the dresses and use the money to take Noelle shopping. Ironically (or was it ironic?), after Christmas, the dresses were still at the store and on sale for half price so that Nadezhda's girls ended up with the dresses after all.
Accepting help was never my forté. I was a product of New England, and New Englanders, in Ralph Waldo Emerson’s words, are “rugged individuals.” Along the way, though, I learned to accept help, not only because I needed it but also because people truly liked to give it. It seemed that Noelle and Doah, both of whom exuded an irrepressible faith in God in spite of being parented by an atheist (me) and an agnostic (Donnie), brought out the best in people. Now, post-conversion, I understand a little better why: we were God’s gift to other people. We presented them with the opportunity to experience the pleasure of helping others: us.
copyright 2010
--------------------
Excerpted from my next both, currently being written, Raising God's Rainbow Makers.
When you have a child with a life-threatening birth defect, you can feel very alone. This is especially the case when grandparents do not step up to the bat. Both sets of our parents were shocked by Noelle’s birth and immediately began professing that “their” side was not to blame. Our parents’ finger-pointing at each other, rather than their jumping in to help us, isolated us even more in the days of Noelle’s early surgeries. We, in contrast, blamed no one. We did not blame either set of parents; the appearance of spina bifida is a matter of both parents having some genetic weakness. We did not blame the obstetrical doctors for not warning us: at that time in history, there was no way they could have known. We did not blame ourselves: we had done everything we could to ensure a healthy pregnancy. We did not blame God: we did not know God existed. So, there was no need to ask “Why us?” “Why not us?” would have been an equally good question. Gene selection is a matter of chance; every biology student knows that. The need for our parents to place blame, however, tore away from us a potential source of support.
We did have solace and help, fortunately. They came serendipitously to us in the form of friends. As in childhood, in adulthood I gathered friends around me. I may have been an atheist in mind, but in heart I was surrounded by God’s influence through friends, many of them believers and most, if not all, of them bringing me comfort and giving me the opportunity and pleasure of helping them. As someone (wish I knew who it was) once said, friends are God’s way of taking care of people on this earth.
Some friends helped out with action. The hospital where Noelle was born could not handle her medical problems and so airlifted her from San Angelo, Texas, where she had been born 250 miles south to Wilford Hall Medical Center at Lackland Air Force Base in San Antonio. I signed myself out of the hospital that same day over the medical staff’s objections, and Charles and I headed south. It turned out that Noelle would need multiple surgeries and we would need to spend several weeks in San Antonio. I called friends at Ravalli Federal Credit Union in Hamilton, Montana, where we had our savings account, and the treasurer not only made out the check the same day but drove it 50 miles north to the Missoula post office so that it would go out by air immediately, rather then wending its way by ground to Missoula and then on out.
Other friends provided emotional support. When many people did not know what to say upon hearing of Noelle’s birth defects and met the birth announcement with silence, David and Diane Edgerly (Dave-Bear and Di, as they were known to Lizzie, our oldest daughter, whom they had frequently babysat) responded differently. NCOs in the U. S. Army (yes, I was a sergeant in the U. S. Army when Noelle was born and, while she slept in a baby chair beside me, was promoted to officer ranks, the only person ever in the Army with the dubious distinction of having stood a direct commissioning board in maternity clothes), Dave-Bear and Di had recently been transferred to Germany, but as soon as they received the birth announcement, which included the information about Noelle’s condition, they wrote a very simple note that gave us great heart and a very warm feeling, the first in a long time: “Welcome, Noelle; Dave Bear and Di love you, too.”
So many people helped then and later. All along the way we have had the support of friends, and so have our children as they have grown. Amazingly, these friends have been grateful for the opportunity to help. Even strangers have helped on many occasions and have clearly felt pleasure from doing so. Sometimes they even were rewarded in other ways.
Nadezhda Long recently described to me the impact on her children, whom, when they were young, Noelle babysat. When Liza and Sasha, Nadezhda’s children, were in grades 3 and 5, Nadezhda bought them velvet dresses for Christmas. After watching a Christmas play that focused on humanitarian values, Liza and Sasha begged Nadezhda to let them take back the dresses and use the money to take Noelle shopping. Ironically (or was it ironic?), after Christmas, the dresses were still at the store and on sale for half price so that Nadezhda's girls ended up with the dresses after all.
Accepting help was never my forté. I was a product of New England, and New Englanders, in Ralph Waldo Emerson’s words, are “rugged individuals.” Along the way, though, I learned to accept help, not only because I needed it but also because people truly liked to give it. It seemed that Noelle and Doah, both of whom exuded an irrepressible faith in God in spite of being parented by an atheist (me) and an agnostic (Donnie), brought out the best in people. Now, post-conversion, I understand a little better why: we were God’s gift to other people. We presented them with the opportunity to experience the pleasure of helping others: us.
copyright 2010
--------------------
Excerpted from my next both, currently being written, Raising God's Rainbow Makers.
Thursday, July 29, 2010
Heralding Noelle
Angel (A): Lord, you could prevent this. Why do you allow it?
God (G): And what do you perceive as wrong here?
A: Well, you see, this baby will not be able to walk, not as a toddler and not as an adult. Epilepsy will interfere with her ability to drive as an adult. Hydrocephalus – all that extra fluid in the brain – is going to bring her the need to check periodically that her mechanical device for removing it is working, and when it doesn’t, there will be moments of panic and stress as her brain is compressed and she is in danger of dying. Not once, Lord, but I can see that there will be a dozen times that the mechanical device will have to be repaired. Human doctors cannot do with the human body what You can. Their mechanical devices are like fingers in a dam. Would it not be better if this baby were every bit as physically able as the people who surround her?
G: No. The gene pool is what it is. I will not intervene. Besides, she will be one of my rainbow makers, my special sprinklers.
A: Spinklers, Lord?
G: Yes. Some people call these kinds of sprinklers broken. Sometimes they call them defective. They are, however, neither. They are simply differently configured, and because of that, they spurt water, they gush water, they spray water wider and farther. Noelle will splash water on all around her. She will water humanity.
A: I don’t understand.
G: Think about watering a field. You need to have rows of sprinklers. Each splashes water onto a given section of land. However, every once in a while, one of them is broken. More water rushes out, and more land is watered. That is a special sprinkler.
A: Ah, I see, but I still don’t understand how they water humanity.
G: Others are drawn to protect and help them, and then they feel good about showing mercy. My sprinklers bring out the best in others. That’s what I mean by watering humanity. Watch Noelle. You will see this.
A. Okay, but what does that have to do with rainbows?
G. Absolutely everything. Have you not seen how in the water splashing out from a long row of field sprinklers you can see rainbow after rainbow? That’s what this little sprinkler, one that others might consider broken, will do.
A: But what about her family, Lord? Her sister, Lizzie, and her parents?
G: Oh, I am happy that Noelle will be born into this family. It does not always happen that my special sprinklers are adequately tended, but these parents are fighters. They will protect my little sprinkler and make sure no additional harm comes to her beyond what she born with. They will make sure that she can refract light through her water droplets to cause rainbows.
A: How, Lord? They don’t have the expertise.
G: They will find it. When they can’t find it, I will lead them to it.
A: But, Lord, there will be so much to find, and there will be so many crises. How will they handle all this?
G: I will be with them. In the good times and in the bad. In the triumphs and in the crises.
A: But they don’t believe in You!
G: Oh, I can handle that, too.
copyright 2010
----------------
I have begun work on a new book, Raising God's Rainbow-Makers, which chronicles the lives of my children, especially in their childhood years. I have been sharing that book, as it develops, with readers of my Clan of Mahlou blog, but it seems that Mahlou Musings is also an appropriate place for posting since most of the readers of the two blogs are different. I would certainly like to have as much pre-publication feedback as readers are willing to give. It is always easier to make changes before publication than after publication. Many thanks for any comments that you care to leave.
God (G): And what do you perceive as wrong here?
A: Well, you see, this baby will not be able to walk, not as a toddler and not as an adult. Epilepsy will interfere with her ability to drive as an adult. Hydrocephalus – all that extra fluid in the brain – is going to bring her the need to check periodically that her mechanical device for removing it is working, and when it doesn’t, there will be moments of panic and stress as her brain is compressed and she is in danger of dying. Not once, Lord, but I can see that there will be a dozen times that the mechanical device will have to be repaired. Human doctors cannot do with the human body what You can. Their mechanical devices are like fingers in a dam. Would it not be better if this baby were every bit as physically able as the people who surround her?
G: No. The gene pool is what it is. I will not intervene. Besides, she will be one of my rainbow makers, my special sprinklers.
A: Spinklers, Lord?
G: Yes. Some people call these kinds of sprinklers broken. Sometimes they call them defective. They are, however, neither. They are simply differently configured, and because of that, they spurt water, they gush water, they spray water wider and farther. Noelle will splash water on all around her. She will water humanity.
A: I don’t understand.
G: Think about watering a field. You need to have rows of sprinklers. Each splashes water onto a given section of land. However, every once in a while, one of them is broken. More water rushes out, and more land is watered. That is a special sprinkler.
A: Ah, I see, but I still don’t understand how they water humanity.
G: Others are drawn to protect and help them, and then they feel good about showing mercy. My sprinklers bring out the best in others. That’s what I mean by watering humanity. Watch Noelle. You will see this.
A. Okay, but what does that have to do with rainbows?
G. Absolutely everything. Have you not seen how in the water splashing out from a long row of field sprinklers you can see rainbow after rainbow? That’s what this little sprinkler, one that others might consider broken, will do.
A: But what about her family, Lord? Her sister, Lizzie, and her parents?
G: Oh, I am happy that Noelle will be born into this family. It does not always happen that my special sprinklers are adequately tended, but these parents are fighters. They will protect my little sprinkler and make sure no additional harm comes to her beyond what she born with. They will make sure that she can refract light through her water droplets to cause rainbows.
A: How, Lord? They don’t have the expertise.
G: They will find it. When they can’t find it, I will lead them to it.
A: But, Lord, there will be so much to find, and there will be so many crises. How will they handle all this?
G: I will be with them. In the good times and in the bad. In the triumphs and in the crises.
A: But they don’t believe in You!
G: Oh, I can handle that, too.
copyright 2010
----------------
I have begun work on a new book, Raising God's Rainbow-Makers, which chronicles the lives of my children, especially in their childhood years. I have been sharing that book, as it develops, with readers of my Clan of Mahlou blog, but it seems that Mahlou Musings is also an appropriate place for posting since most of the readers of the two blogs are different. I would certainly like to have as much pre-publication feedback as readers are willing to give. It is always easier to make changes before publication than after publication. Many thanks for any comments that you care to leave.
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About Me
- Elizabeth Mahlou
- I am the mother of 4 birth children (plus 3 others who lived with us) and grandmother of 2, all of them exceptional children. Married for 42 years, I grew up in Maine, live in California, and work in many places in education, linguistics, and program management. In my spare time, I rescue and tame feral cats and have the scars to prove it. A long-time ignorantly blissful atheist converted by a theophanic experience to Catholicism, I am now a joyful catechist. Oh, I also authored a dozen books, two under my pen name of Mahlou (Blest Atheist and A Believer-in-Waiting's First Encounters with God).
Recommended Reading List
Because I am blog inept, I don't quite know how to get a reading list to stay at the end of the page and not disappear from sight. Therefore, I entered it as my first post. I suppose that is not all that bad because readers started commenting about the books, even suggesting additional readings. So, you can participate with others in my reading list by clicking here.I do post additional books as I read them and find them to be meaningful to me, and therefore, hopefully, meaningful to you. One advantage of all the plane traveling I do is that I acquire reading time that I might not otherwise take.