Stealing Doah

Yesterday, by request, I posted an excerpt from my book, Blest Atheist, on the Clan of Mahlou site about how many years ago Doah was dying at Renboro Hospital (name changed) and with Doah's pediatricians' implicit consent (not explicit -- he would not have been able to give that kind of encouragement), Donnie and I literally stole Doah from the hospital in a very dramatic, made-for-the-movies episode in our lives. It's a story that Doah never tires of hearing. Here are the first paragraphs. If you are interested, you can read the whole story, including how once again God was able to bad into good, at the Clan of Mahlou site. (Sorry about the repeat for those of you who are followers at that site; there is a few followers who overlap, but most do not so, since followers here have come to know Doah a little through the excerpts from his book, I figured information about this posting might be interesting.

Told by doctors at Renboro Hospital that Doah would die for certain, the trail ahead of us to bring him into adulthood seemed hopeless and far, indeed — except that I simply have no idea what the word, hopeless, means. To me, where there is life, there is hope. Clearly, though, to maintain that hope, we would have to do something about the attitude of the doctors and hospital in which Doah was being followed.

We did not have to think long. Matters quickly came to a head at Renboro Children’s Hospital. Our knock-down-drag-out fights with doctors there pitted parent against doctor in a war that was not going to serve Doah well. In June 1980, that cold war heated up rapidly. I refused to sign papers for a fundoplication, an operation that would repair Doah’s hiatal hernia at the risk of losing him because of his breathing difficulties from a subglottic stenosis (narrowing of the trachea) that were treated by a tracheotomy. (Nowadays children's with tracheotomies have decent survival rates; back then, most of the children died.) Doah’s pediatrician, Dr. Paul, was one of our strongest supporters. He would come to the hospital, mediate disputes, and provide me with his medical opinion. Dr. Paul researched the surgical procedure. He learned that the operation (in 1980) had only a 25% survival rate in cases like Doah’s and, if the patient survived, there was only a 50/50 chance that the surgery would take care of the problem. In any event, the surgery would have to be repeated every few years. (Over the years, the surgery success rate and survival rate has approached nearly 100%, but the surgery does still have to be repeated every five years.) Given these statistics, the pediatrician agreed with us that surgery was not wise.

Bent on what we assumed was their pursuit of medical training and the chance to do what was then a relatively new procedure, the doctors insisted that Doah have the surgery. Part of me wondered whether they just assumed he was going to die, anyway, and therefore he was a good candidate for “training” surgeons on a new procedure. In any event, the doctors did not accept my refusal to sign papers authorizing surgery and took the case to court, requesting that the court grant custody of Doah to Renboro Children’s Hospital so that they could do the surgery. We were not told about this court proceeding; apparently, we were going to be deprived of the opportunity even to be in courtroom and defend our rights as his parents. Shades of American democracy as it sometimes perverted by evil forces! I found out about this intention because I read promiscuously —- books and journals and articles and medical records: all Doah’s surgical reports, all the nurses’ notes, all the medical entries of any sort. And that is where I found it. In Doah’s four-inch-thick file was a scrawled note about our being unfit parents because we would not sign for the surgery and the date of the court proceeding. The date was only two days away.

What to do? A daring plan entered my mind: steal Doah from Renboro Children’s Hospital and take him out of state to Beanton Children’s Hospital where Noelle had been treated for her spina bifida and related birth defects three years earlier. I trusted the doctors because they listened to me. The doctors I knew there even liked me. I quickly found out more about Noelle’s former urologist, Dr. Colodny, and learned that while he was at that time specializing in lower GI problems, he had at one time worked in the area of upper GI problems. He could be Doah’s doctor, I reasoned. That thought comforted me, but we still had to get to Beanton.

We developed a step-by-step plan to steal Doah from his hospital room. I shared the plan, but not the details or the timing, with the pediatrician. He looked at me thoughtfully. Then he said, “I cannot condone what you propose. However, if you do happen to end up in Beanton, please be aware that Bob, the son of my partner, is an intern there. He can provide the link back to us and make the transition of records and information smooth.” He disappeared from the room and came back in a couple of minutes with Bob’s phone number. The pediatrician’s implicit encouragement was all that I needed to put our plan into action.

The next day, the doctors were in court, and we were at the curb outside the hospital. Charles kept the car running in a “standing only” zone. What I was about to do would not, could not, take a long time, we reasoned.

Click here to read what I did: continuation of Stealing Doah.

Our Poisoned Guest

Once a friend of Mommy's came to visit. His name was Steve, and he and Mommy were writing a book together.

Mommy decided that Steve would sleep in one of our guestrooms. However, that particular room had a nearby bathroom that had not been used in a long time, and the toilet was discolored. Mommy asked a friend who knows a lot about taking care of houses what she should do. The friend told her that Clorox would turn the toilet white again. Mommy was very happy. She bought a jug of Clorox.

When Steve arrived, he wanted to use the bathroom. Mommy proudly showed him the sparkling clean bathroom.

Then we heard two loud sounds, one right after the other. Slam! Slam! The first slam was the bathroom door, and the second slam was the door to the outdoors. Steve streaked past us screaming. His words started out loud, then in a Doppler effect, got quieter as he dashed past us, down the stairs, and into the streets, "It's a **!!$%!* gas chamber in there!"

Mommy's friend had not told Mommy to use only a little bit of Clorox, so she used the entire two-gallon jug. Poor Mommy!

Mommy forgot to flush the Clorox away before Steve came, so when he flushed the toilet after using it, the whole room filled with Clorox bubbles, just like in a real gas chamber. Poor Steve!

After that, Steve started calling Mommy "Little Miss Homemaker." It sounded like a compliment, but I do not think that Steve meant it that way.

Conclusions: I guess that means Mommy will not be selected as Homemaker of the Year this year. Poor Mommy!


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This story is excerpted from a collection of vignettes that I helped Doah, my severely mentally challenged youngest son, to write and publish several years ago (copyright 2003). It was my attempt to help him understand literacy and the purpose of writing and reading.

Mohammed, the Street Vendor

Mohammed was a street vendor on Massachusetts Avenue in Washington, D.C. He was clearly a Middle Easterner from his speech, but his limited English did not prevent him from doing a booming business. Rather, his smile and good nature brought him return business all the time, and there was often a line, which he served patiently, efficiently, and pleasantly.

Mohammed not only served his customers, but he also served as a friend to his customers. The reason I learned Mohammed's name was because once a customer was relating to him some personal issues, to which Mohammed was responding with sympathy. I thought that they must be friends or at least acquaintances, and so I waited patiently for the conversation to conclude. At the point of conclusion, I was quite surprised to hear the customer ask Mohammed his name.

Most street vendors do not have names. Well, obviously, they have names, but their customers do not know their names. However, many people seemed to know Mohammed's name.

Mohammed's philosophy was announced to the world on two small stickers pasted on his lunch wagon. The first says: "Have faith, for it is the will of Allah." The second says, "Faith has two parts: patience and gratitude." He clearly patterned his behavior after those stickers.

One day I stopped to buy a hot dog, a $1 purchase -- not much in the grand scheme of things. However, one would have thought I had spent ten or twenty that amount. He patiently made sure that he had the order exactly the way I wanted it, smiled, thanked me for stopping by, and wished me a pleasant day. Something about his smile made me (and obviously others) understand that he really meant all those pleasant words.

Most street vendors in the United States do not have block-long lines. The exception was that vendor on Massachusetts Avenue. I would stop to buy even if I was not hungry. I would not stop for food as much as I stopped for the warm personal interaction. That is why I think the many people in front of me in line also stopped.

One evening on the way home (later than usual), I noticed that Mohammed was closing his stand. There was no one else there, but I stopped, anyway, and bought a drink. We started talking, and I learned that he was from Alexandria, Egypt, the father of two young girls, devoutly religious, and a really nice person. He taught me several Arabic expressions, including "insha Allah" (God willing) and "Allah maak" (God be with you). The next morning, he taught me more. (Little did I realize at the time that I would be able to use these expressions when I landed in Jordan a few years later.) I did not learn a lot of expressions back then because I was an infrequent visitor to Washington. Still, Mohammed always remembered me.

One evening on the way home I bought a drink of a type that I do not usually buy. I had a dollar in my hand, but the drink was more than that. I asked Mohammed how much the drink cost. He saw the dollar, smiled, and said "For you, one dollar only." Mohammed seemed like such a friend that I knew I would miss him if he were not there.

That day did come, the day that I would not see Mohammed. On one visit as I was saying goodbye to Mohammed, he told me that he might not be there when I returned. Through diligent work for several years, he had managed to save enough money to buy a home for his family in Alexandria and was returning there to raise his girls not as an absentee father but as one grateful for every day that he would be able to be with them.

Mohammed clearly understood human motivation. He got what he wanted by handing his customers what they needed. No, not food, but plain old human caring. And both he and they went on to have a good day!

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Excerpted and adapted from a collection of vignettes, copyright 2003.

A Moment of Joy

For me, in dark moments, moments of grief, I am helped by focusing on moments of joy for the past, knowing that life is a balance of both. As we await the pulling of the plug and the formal end of Ray's life, with the understanding that he really died a week ago and has been artificially kept alive thanks to marvelous modern technology, I think back to something that happened a few years ago and which I describe at the end of my book, Blest Atheist.

Even if there are difficulties ahead, there will be help and protection. There will also be rewards. There always are. With God, the rewards are unanticipated and unusual. The simplest among them are the greatest.

One evening last December, the thought came into my head that I should take my evening walk around the mission grounds early. Normally I walk there around 9:00 p.m., and it was only 6:00 when I felt the push to go outside for my walk.

No, I thought. Why would I want to go now? Even though the eventide falls around 5:30 on December nights in San Ignatio, I still prefer to go later—after dinner and dishes and before retiring for the night. It is a marvelously restful way to end the day. Walking brings out the happy endorphins, and just being at the mission provides great encouragement toward prayer.

No, I’ll go later, I thought and began cleaning the kitchen in preparation for dinner. Then the impulse came again. The “argument” went back and forth a couple of times until I approached Donnie, who usually accompanies me on these walks.

“Donnie, how do you feel about taking our evening walk early tonight?” I asked.

“Why?” he asked.

“I don’t know why,” I answered. “I just feel like we should go early.”

Donnie acquiesced and quickly assembled his pipe tools. (He likes to sit and smoke while I walk.) We opened the door and stepped out under the night sky. And there it was, spread across the heavens: a breathtaking lunar ice halo.

Ice halos are rings of light that surround the sun, moon, or other sources of light, such as street lamps. The ones in the heavens are caused by millions of ice crystals in thin, cold, cirrus clouds floating in the troposphere reflecting and refracting light. This particular ice halo was circumhorizonal, a rare phenomenon for which adequately descriptive words, other than scientific ones, are even rarer. Refracted light from the moon spread in a 360-degree circle all around the sky on the same level as the moon yet at the same time touching the horizon wherever we turned—or so it seemed although in actuality the circle of light was parallel to the horizon and not lying upon it. The halo filled the whole sky, with the full moon in its zenith filtering a stream of light through a gossamer foramen in the firmament onto the mission grounds below.

I could almost hear the proud words, “Look what I did!” The hymn of Isaac Waats came to mind instantly: “The moon shines full at His command, and all the stars obey.”

On the mission grounds canopied by the horizon-to-horizon crystal glow, I walked, my arms extended. Irrepressible joy spread past my fingertips, riding on the splendor of light toward the horizon.

Then it was gone. Had I come at my usual time, I would have missed it.

These then are the things that have been seen and experienced by the blest atheist. All the events reported herein [in the book] have enriched my life, but the greatest of these was God sharing with me the lunar ice halo: “Look what I have done!” The hound of Heaven had finally caught me and then had shown me what I had been missing: “Look what I have done!” Indeed, I could almost hear those words and a few more: “Look at what I have done—for you, for all people, because I love you whether or not you even believe that I exist.”

All the miracles that God has done in my life and in the lives of others through me have been wondrous, but pulling me outside to view the ice halo stands out above them all as the most affirming act of God’s love. The miracles were about healing and turning bad into good. They have been important, of course. Viewing the ice halo, however, was about relationship: God’s relationship with me, God’s relationship with all of us. When God called me from my house onto the street and into the field at the mission, I understood that I was special—not special out of many, but special among many, special like all people are special to God.

On an individual level, I was and am at best only a Good Samaritan, and still God wanted a relationship with me. In so many ways, I was and am but a child who finds the adults who can help a sick child artist, a crying lady, a boy in white, or an orphan dying from brain tumors. Like a child, I have no burning desire for financial gain, material possessions, or fame and power. Those desires were beaten out of me in my youth. Although many of these things have appeared unbidden in my life, my true treasure is the people who have come into my life from all continents of the world. There is where my heart is. I want to “pass on” the good that God has brought into my life by using my linguistic proficiency, cultural acumen, and multi-domain knowledge gained from living in the land of splat! to connect people who need help with people who have the ability to give help, no matter where they live or what language they speak. For what good is money if it cannot be used to help those in need? What good are material things unless they make this world a friendlier place: a blanket to warm a homeless man, food for a hungry family, clothes for those burned out of a home? What good is power if not used to empower the powerless to be free to flourish? What good, too, is dreaming an impossible dream if it does not kindle the dreams of others? What good is reaching an unreachable star if it does not sprinkle light onto a dark existence? What good is happiness if it does not splash joy onto dispirited ground, inspiriting the life within to sprout and reach for the heavens? If, indeed, as I have found, helping those in need, making the world a friendlier place, empowering the powerless, kindling dreams, lighting the dark, and splashing joy across the land is what a Good Samaritan does, then I want to be a Good Samaritan for life. To my delight, God seems willing to use me in that capacity. For certain, God knows my heart and what I treasure.

God has many Good Samaritans. Some, like me, are blessed to help a few wounded souls in intensive ways. Others are blessed to help many people in more extensive, but less intensive, ways. Some God leads with their full knowledge. Others, like me for so many years, God leads through their hearts alone. In return, God gives them a treasure far greater than money, honor, power, or prestige: they know a perfect joy that nothing else can give.

I am sure that others saw the ice halo that night for God encourages all people to step bravely out of the grey boxes in which they are cowering and stride buoyantly forth into a divine world resplendent with color, love, and joy. In our tiny town, though, I was the only one who showed up at the mission to see the splendor on that particular winter evening. Others may have showed up elsewhere for the ice halo could be seen for miles. Perhaps even more were called to behold it but were not listening. Those who did listen experienced an unrelenting tug to come outside and witness an awe-inspiring manifestation of God’s loving caress ephemerally spread against the heavens and permanently imprinted in the mind and on the heart.


Note: Concurrently published on all Mahlou blogs.

Time Out from Blogging in Reverence for Life

You may have noticed a lack of blog posts this week. There is an explanation beyond the fact that I am once again on the road, this time in Washington, D.C. (or more accurately, Arlington, Virginia). I will probably be able to post Quick Takes tomorrow evening since I wrote most of them on the plane here. However, anything else may take a few days.

Upon arriving here, I received an urgent phone call from Noelle. Her significant other of ten years' duration had a heart attack during dialysis (he has no functional kidneys) and is currently unresponsive. X-rays show a swollen brain, and doctors would like to have permission to pull the plug. Noelle, our hopelessly hopeful, never-say-never, that-empty-glass-will-soon-be-overflowing child, wants to wait. Probably Lizzie will be the one to make the decision for everyone, as she did in her grandmother's case ten years ago. That time she decided that keeping her grandmother alive artificially was in no one's interest, including her grandmother's, since even if her grandmother came out of the coma, she would not be able to care for herself or even think since all functional brain tissue had been destroyed by a brain bleed. Since Lizzie is a professor of cognitive neuroscience, doctors are willing to share records and test results with her that they would not normally share with family members; they know that she will look at them dispassionately and make an objective and measured judgment as a professional colleague.

Lizzie has conditionally weighed in on Ray. Not having the x-rays yet and just listening to the description of what has occurred and considering his comatosity, she has informed her sister that in her opinion the situation is "bad." However, she won't give any final advice until she sees documentation.

A little background: Ray lost kidney function in 2006 and was comatose (without brain swelling or damage) for several months, then was on life support in a city five hours away until December 2007. It was a wonderful Christmas present to have him be taken off life support and breathing on his own. Then, in December 2008, he was released into a care facility and transferred to Salts where he was just a few minutes away from Noelle. That was another wonderful Christmas present and a prayer answered. Ray and Noelle have had a full year beyond what they hoped for together (or as together as they can be, considering that Ray cannot even come home to visit).

Until Lizzie weighs in with an informed opinion, we wait and pray. I have asked for Ray to be put on the Old Mission prayer list, and I would ask you to pray, too. It is difficult to know what to pray for since Ray, even if he regains consciousness, will never be able to come home, will always be tied to a dialysis machine, and will likely be in pain much of the time. Since God knows better than I do in all cases, I personally am praying that God will do what is best for Ray. No matter what we personally would like to see happen, the rest of us really are insignificant in this instance. I am sure that God will take good care of Ray without prompting, but I like to pray about it, anyway. I love the support and guidance.

So, with the exception of the Quick Takes and the MMM, I plan not to spend time blogging but being available to my family and to Noelle. (I will be home on Saturday.) Life itself is special, and we should take time to acknowledge that and show our reverence for what God has given us. It is unfortunate that we tend to do so only when Death looms or has completed its reaping. Nonetheless, better now than never.

Update January 17: Ray died on Friday at 09:20 in the morning. Details have been posted on Blest Atheist.

What Are You Really Selling? (Or, The First Capitalist)

Around a hundred years ago in the city of Damascus, all sugar arrived from India. The price of each kilogram was one majidi (an Ottoman currency). Merchants would add expenses and a margin of profit and sell a kilogram for two majidis.

One day a merchant by the name of Tarek began to sell each kilogram of sugar for only one majidi. The sugar merchants were very upset with Tarek, but they decided to ignore him. "After all," they would comfort each other, "how long can he possibly keep up this ridiculous strategy?"

But months passed by, and Tarek continued to sell a kilogram of sugar for one majidi. The merchants met to discuss the “Tarek Affair.” “This has gone beyond any reasonable attempt to gain new customers,” they argued. “We simply have to put an end to this.”

The merchants decided to invite Tarek for dinner to discuss the matter with him.
Tarek arrived and sat with his fellow sugar merchants. A very nice dinner was served and, later, over tea, the merchants proclaimed: "We have locked the door, and you shall not leave until you explain to us how you can possibly continue to sell sugar for no profit at all?"

Tarek smiled, took a sip of his tea, and said: "But I don’t sell sugar."

"This is not the time for humor," the merchants said firmly.

"But that is the truth. I really don’t sell sugar. Allow me to explain. You have been in my shop; it's just a big room. I have placed the sugar on a big cloth spread out on the floor. My customers come in, all attracted by the fact that they can buy a kilogram of sugar for only one majidi. So, it is only natural that they want to buy lots of sugar. Where are they going to place all the sugar they decide on buying? Naturally, they need bags. I stand ready to satisfy this need. I have all the bags they may ask for, but my bags are not free. I sell my bags for profit, for lots of profit. But who is going to stop and question the price of my bags when they are getting such a good deal with the price of my sugar? I don’t lose on sugar; I simply deliver it for the price for which I purchase it. But when it comes to bags," Tarek smiled again, "that's where I really make a profit. So you see, my friends, I really don’t sell sugar. My specialty is bags."

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The above story is excerpted from a book, Metaphors of Islamic Humanism, by my friend, Dr. Omar Imady, copyright 2005. Two other stories from this book have appeared on my main blog, Blest Atheist. The given title for this story is Dr. Omar's. The title in parentheses is my tongue-in-cheek suggestion. (I thought it was time for a little change in the fare of this blog.)

In 2010, Find Time for Family and Friends

The following essay, which comes from my book of vignettes, published in 2003, seemed to be as appropriate to beginning 2010 as it was to living in 2003.

The people who support and bring us the most joy are often the ones we most take for granted. At the end of their life, nearly no one says, "I wish I had spent more time at the office or on the golf course." Rather, most say, "I wish I had spent more time with my family and friends." I am as guilty as the next person of being a workaholic, but I have found some small ways to be with family and friends. I make sure that no more than a few weeks elapse without communication with each friend. I talk to my close friends who live nearby very frequently. They provide me support, and I think they do like to get that regular telephone call.

One way to find extra time with my family has been to involve them in my work. When my older son, Shane, was eight, I had to work some hours on weekends in order to get a textbook finished at work. All the children would come in with me. Shane, who seems to have been born with his fingers on a computer keyboard, would word-process the textbook, while the others helped with other things.

When Shane was in homeschool a couple of years later, he volunteered as a computer lab counselor-instructor at Doah's public elementary school in the morning. My boss learned of this and offered him an unpaid internship, consulting for her department in the area of computers. From this experience came some very funny situations, one of which was a visit from a representative of the Ministry of Foreign Affairs of Finland. Seeing Shane instructing one of the administrators in computer functions, the representative asked in surprise, "Do you teach children here?"

Without hesitation and without thinking how it sounded, the escort said, "No, the little boy is teaching the big man."

Clearly, Shane had become just another member of the staff. For me, it was a wonderful benefit of the job that my son could work and learn alongside me.

I have also taken my children on trips with me. In a large family, it is difficult to find time for each child, and at one point, we had seven children living with us. Taking one child along on a trip makes it possible to provide lots of individual attention, the effects of which can linger long after the trip is over. I took my oldest daughter, Lizzie, to Moscow, Leningrad, Akademgorodok (Siberia), Stuttgart (Germany), and Hawaii, and my oldest son, Shane, to Moscow, Kemerovo (Siberia), and Helsinki (Finland). Noelle, who has spina bifida, and Doah, who had a tracheotomy, often could not travel at the opportune time for medical reasons, but things did work out for California (before we moved here) and Hawaii for Noelle and for New York City for Doah. If I had not included my children in my work trips, I would not have been able to afford such family outings and such wonderful one-on-one time.

My husband does not travel like I do. However, he had a boyhood dream that he was finally able to fulfill in 1987: through-hike the Appalachian Trail. When Shawn first began homeschooling and was studying biology, botany, dendrology, and zoology, hiking the Appalachian Trail from Georgia to Maine seemed like a perfect applied learning experience. So, my husband quit his job and prepared to live his dream. He and Shane hiked daily around our hilly neighborhood, building up their endurance and trying out their camping gear. Taking the trail names of Huff and Puff, they set out for Georgia as soon as the trail opened to through-hikers in the spring. Huff and Puff, the latter at age 10 being the youngest through-hiker up until that time, soon became one of the trail legends of 1987. They were interviewed on Georgia Public Television, by Time-Life, and at least one magazine article was written about them. The other children and I got into the act by existing on peanut butter sandwiches and macaroni and cheese for the duration of the hike (the loss of Donnie's income required scaling back on food and I also had take on a second, night-time job). We picked out the trail foods we would package each week and send to the next post office along the trail and put out the weekly "Huff and Puff Trail Notes" for friends and relatives. Although Huff and Puff did not finish the trail, they did hike more than 1000 miles of the 1300-mile total before Huff (Donnie) injured his knees and had to stop. To this day, Puff (Shane) says that this is the most memorable part of his childhood.

I cannot say that Donnie and I spent as much time with our children as we would have liked or as much as they would have liked. It may be that children can never be saturated by parental attention where there's a healthy relationship. Other than the fact that Doah chose to learn from Beaver's escapades from "Leave it to Beaver" rather than from "Sesame Street" (which kept us busy keeping him out of trouble), I can't say that we had a Cleaver-style household, but friends and strangers alike have commented on the palpable family bond. Once, on a short car trip, when I was discussing child-rearing methods with a friend from a different cultural background, we got into a strong disagreement. Shane, then a 17-year-old college student and driving the car we were in, thinking that I was being criticized, spoke up, "If you ask me, I like the way I was raised." Right then, the whole car was flooded with the smell of sweet flowers.

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Excerpted from a collection of vignettes, copyright 2003.