Thursday, January 28, 2010

Stealing Doah

By request, here is the post on how I stole Doah from Renboro Hospital (name changed) when he was a dying infant. (It is, unfortunately, very long, an excerpt from one of the book chapters in Blest Atheist. I hope it is worth reading to the end.)

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.

I walked into the hospital as I had on any other day. I had brought no clothes for Doah; they were in the car. I would not have time to dress him if I were to whisk him out unnoticed.

I took the elevator to the fifth floor and walked to Doah’s room. Visible from the elevator, the room was catty corner from the nurses’ station. The nurse on duty looked up and said hello, and I responded, just as if it were any other day.

I walked into Doah’s room. Good, there was no one else in there. Doah was plugged into an array of machinery. The machines did not provide life support. They simply monitored Doah’s condition. I could unplug them without doing any harm to him, but they would set off alarms at the nurses’ station. That would have to be the last thing I did. I looked in the supply cabinet where his medical “things” were kept and found the hand-held suction machine that was there for an emergency cleaning of his trach tube in the event that the electricity went out and he experienced a mucous plug. I would need that suction machine enroute to Beanton. It was small. I quickly shoved it into my pocket. Then I deftly untucked the blanket on the bed and wrapped Doah, who was wearing nothing but a diaper, in it. We were ready except for the half-dozen wires and electrodes attached to his body. With one smooth sweep of my hand, I disengaged all of them, setting off a half-dozen alarms simultaneously. With Doah in my arms, I slipped stealthily out of the room and bumped into the charge nurse, who was answering the alarms.

“What is going on?” she demanded to know.

“I am taking Doah with me,” I replied briefly while looking for an escape route other than the elevator, which was now clearly not an option.

“You cannot do that. He has not been discharged by the doctor,” she said, frowning and clearly tense.

“Certainly I can do that,” I told her evenly although I had to struggle to maintain a calm tone. “He is my son. I can bring him here, and I can take him away from here.”

“No, you can’t,” she insisted and then let the cat out of the bag. “The doctors are in court right now, getting custody of this child.”

“Right,” I said in the same steely, even tone. Lord knows how I was able to maintain the external calm with my heart pounding and adrenalin flooding through my veins. “They are in court now, and I am here now. They may have custody in the future, but I have custody now. I am taking him with me.” My eyes finally saw what I was looking for—a stairway exit at the end of the opposite hallway. I could reach it pretty quickly at a run.

“I’m calling security,” she said, as she headed back to the nurses’ station.

“Call whomever you want,” I replied and sprinted to the doorway. I dashed down the stairs, all five flights, as if they were a hill of snow and I was on a sled. I don’t remember actually stepping on even one of the stairs, but clearly I must have. Reaching the bottom, I ran as fast as I could to the car. I thanked all the stars in heaven for my fast legs, for all the intensive running-away-from-abusive-parents-wanting-to-beat-me practice I had had in my childhood that now stood me in good stead.

Thank goodness, the car was still there. Charles had not yet been chased away by a meter maid. I opened the door and jumped in. Breathing heavily, I urged Charles, “Go!”

We sped away, not home, but to the airport. I had earlier checked on the first flight out to Beanton. It was on US Airways, and we had about an hour to wait. It was an hour of agony, wondering if custody would be granted in the interim, whether the security guards would figure out that we probably had gone to the airport, whether the police would be contacted, whether someone would think to check airline manifests. Finally, the plane was ready to board. I walked on with Doah calmly, chatting with other passangers, as if every day I stole my child from the hospital and flew with him to some other city.

On board, I relaxed. The stewardess told me that Doah was cute, and she spent a few minutes casually chatting with me. The flight from Renboro to Beanton generally takes about 50 minutes. I had time to read the in-flight magazine and mentally prepare to meet my brothers. I had called Beanton Children’s. No beds were available until the next day, so my brothers, Willie and Keith, had promised to meet me at Logan Airport and take my home to Acton. We would spend the night on the farm and return in the morning when there would be room for Doah at the hospital. All was on track. All was calm.

All was calm, that is, until 30 minutes into the flight when the pilot announced that we were landing. Some of the passengers asked the stewardess what was going on and in what city we would be landing. “In Beanton,” she replied. “We just had a faster flight than usual because we have a medical emergency on board.”

We landed, and the stewardess asked everyone to remain seated while they took care of a medical emergency. Then she approached me and said she would help me out. “I think you had better take care of your medical emergency first,” I suggested, confused.

Now it was her turn to look confused. “We were told that you are the medical emergency,” she said.

It turned out that Renboro Children’s Hospital’s security office did rather quickly figure out where we were and had contacted the airline right after we had taken off. They had frightened the pilot into double-timing to Beanton by suggesting that Doah might stop breathing at any moment. The airline had made arrangements for my luggage to be retrieved immediately upon landing. They had also contacted Keith and Willie (“any party in the waiting area for the arrival of Elizabeth Mahlou”), lining up Keith and his car behind the ambulance that was waiting to transport us to Beanton Children’s where a bed had been miraculously found. Willie they had placed on the jetway so that he could talk me into taking Doah to the hospital should I not want to.

Literally only minutes later, Doah and I were in the ambulance, careening through downtown Beanton with sirens shrieking and lights pulsating and Keith and Willie in frantic pursuit. How fortunate that it was a weekday night when Beanton streets are more lightly traveled!

We arrived at the hospital at the same time. The admissions personnel looked at Willie and Keith in the coveralls they had been wearing in the field and, confused, asked, “Are you two medical personnel?”

“Heck, no,” answered Willie. “We’re just farmers from down Maine.”

Once Doah was in a bed on the ward, a resident appeared to take charge of him. “Renboro Children’s Hospital has been in touch with us,” he said, “and we have assigned Dr. Friedman to Doah.”

“No, there is some mistake there,” I responded, “Dr. Colodny will be his doctor.”

“Dr. Colodny does not handle lower GI patients,” the resident explained patiently.

“He used to,” I informed the resident, “and I bet he has not forgotten how to do it. Look, I am really tired. It has been a longer and more exhausting day than you could possibly imagine. It is nearly midnight, and nothing is going to get solved in the dark of the night. I am going home to Maine with my brothers. I will sign papers, giving you permission to put Doah on a life machine but nothing else should he stop breathing. You talk to Dr. Colodny in the morning, and I will come back around noon to talk to him about Doah.” I was certain that Dr. Colodny would take Doah as a patient although I had not been in touch with him. When Noelle had been a patient of his three years earlier, Dr. Colodny, as the head of the urology division, had taken her as his patient because she had some unique complications and he liked challenges. Doah would also be a challenge for him, and I did not think he would turn down a challenge.

The next morning, toward noon, I returned to the ward and tracked down the resident. “Dr. Colodny agreed to take Doah,” he said in a surprised, almost awed tone. “We have dismissed Dr. Friedman from the case.”

“I thought he would,” I responded. “I will be here round the clock so he can talk to me whenever it is convenient.”

Dr. Colodny came and greeted me effusively. He agreed with my risk assessment and dismissed the idea of a fundoplication. He set Doah up on a diet regime that would ameliorate the worst aspects of the hiatal hernia, and he had his bed set up on an incline to help nature take over some of the cure. Given the tracheotomy, he had the ENT staff look at Doah. There was not much that they could do about the subglottic stenosis, but they did bring up his case at a regional medical conference that was taking place at the time, unfortunately with no resolution or additional insights.

I gave Bob’s name to Doah’s young, pretty, primary nurse. Bob turned out to be handsome, and the nurse and resident soon started dating. Doah got the best of attention, and reports were sent very frequently to Dr. Paul, maybe more often than usual because it gave Bob and the nurse "required" time together.

A month later, Doah had gained four pounds. (In the month he was at Renboro Children’s Hospital, he had lost a half-pound and was down to eight pounds at the age of six months.) Doah was released, but this time, he was being sent home with an apnea monitor, so we no longer had to worry whether or not he was breathing. There was a machine that would tell us. (Renboro Children’s Hospital, when we had asked for a monitor, told us to tie bells to his shoes instead.)

Arriving back in Renboro, life returned to normal (for us). I continued teaching, taking Doah to my classes with me and placing him under the podium in his baby seat so that I could stop and suction out his trach tube whenever it became clogged. Yes, Doah still sported the tracheotomy tube that allowed him to breathe, staving off the death threatened by the subglottic stenosis. His care once again was coming from Renboro Hospital, the only local option, and the same dour prognosis persisted. Right before Christmas, I had a conversation with the chief of the ENT clinic that confirmed we would find no hope at Renboro.

“Now that we are back from Beanton and Doah’s general health is better, what can you tell me about a prognosis?” I asked.

“Look, you just don’t get it, do you?” the doctor responded. “His prognosis is days, weeks if you are lucky. My best advice to you is to accept the inevitable and consider how you are going to handle his death and the days after his death."

Well, that was not an acceptable response. I looked at the doctor coldly, as I quickly dressed Doah and said, “Neither you nor I can predict exactly what will happen in the long-term, but in the short-term I can very accurately predict that he will no longer be your patient.” With that, I walked out.

I took Doah home, left him with Charles, and returned to Renboro Hospital and Medical School. Flashing my graduate assistant identification card from the University of Renboro as if it were a medical school ID, I marched into the University of Renboro Medical School Library like an entire platoon about to take the next hill. Finding the ENT section of the library, I seized the latest volumes of the Otorhinolarnygology Journal. There I found my objective: Dr. Robin Cotton of Children’s Hospital of Cincinnati had written several articles on subglottic and other forms of tracheal stenosis, and he described cases where the children had survived.

I called him. He said he thought he could take down the tracheotomy and reduce the stenosis were we to bring Doah to Cincinnati. Were we, a poverty-stricken doctoral candidate and a forester-turned-art-school student, trying to raise four children, two of whom had multiple birth defects, to bring Doah to Cincinnati after just having spent our last dollar to get him to Beanton where the doctors had saved his life but could not repair his breathing?! It would cost more than $200, a sizable amount of money in the late 1970s, when my salary topped out at $800/month.

Nonetheless, full of hope, I counted on getting Doah to Cincinnati. I did not know how that would happen, how we would get the Chihuahua of poverty from nipping at our heels long enough to get to Cinncinnati and back, but I was confident it would happen.

A few days after my phone conversation with Dr. Cotton, I walked past the office of Dr. Ludmila Georgievna Koehler (now Sr. Ioanna in Jerusalem), a literature professor in the University of Renboro’s Department of Slavic Literature, where I was taking my doctoral studies and teaching Russian language courses to undergraduate and graduate students. Ludmila Georgievna motioned me to come in and shut the door. Then she handed me an envelope, saying “I heard from one of your fellow Ph.D. candidates that you have found a doctor in Cincinnati who might be able to help your son. Even by car, it will be an expensive trip for you. Here is $250 in cash. Pay me back when you can afford to do so and not before.” (Months later I was able to pay her back.)

Getting to Cincinnati, however, was not going to be easy in spite of Ludmila Georgievna’s, loan. This was, after all, my life. While it has been full of blessings, very little about it has been easy. In this case, a week before we were to leave for Cincinnati, I fell down a flight of stairs and broke my back.

As my body crumpled against the cement at the bottom of the wooden staircase leading into our basement, a warm, grey ether stole up to me, beckoning me to follow. Oh, no, I thought. I cannot pass out. Doah is upstairs and may get a mucous plug.

Shane was sitting on the porch stairs, waiting for me to bring his clean socks from the basement laundry room to him, and Noelle was in the back of the Pacer with no way to get out because her crutches were up front. The only one who could have helped, Lizzie, had already gone to school. I had been getting Noelle and Shane ready to drop off at day care. Doah, of course, was coming to class with me.

I tried to stand up but could not, so I crawled back up the stairs. I could not stand up, either, to reach our wall phone, so I kept pulling at the dangling cord until finally the phone fell off the hook. Experiencing great difficulty in breathing, I nonetheless managed to get the ambulance to understand where I lived.

Then I crawled to the living room where Doah was in his baby seat on the couch and struggling to breathe through a mucus plug. An increasingly intensive blue hue was spreading across his ash-tinged pink face. I could not stand nor could I reach Doah. Frantic, I beat my hands against the couch, trying to create enough vibration to knock Doah off, but it was to no avail. Three-year-old Shane heard the commotion and came in.

“Shane,” I said. “I have to reach Doah. See if you can get his seat off the couch.” He would have been too heavy for Shane, but it was worth a try.

Shane scoped out the situation instantly. “I can suction him, Mommy. I know how to do it.” Many nurses are uncomfortable suctioning trached children. How would Shane do it?

“Shane, it is a difficult thing to do, and the machine is on the wrong setting. I need the machine and Doah. Quickly!”

“I can’t lift Doah,” Shane replied, “but I can suction him. I can fix the machine. I can do it, Mommy, I can do it.” With that, he flipped the machine onto the proper setting and suctioned Doah, whose skin color immediately returned to normal.

“Good boy, Shane,” I said. “Now, go watch for the ambulance. I hurt my back. They will take me to the hospital.” Shane went out on the porch and soon returned with the ambulance medics.

Our house (and life) must have seemed like a circus to the medics. They put me on a back board and prepared to transport me. “What about the little boy,” one asked, referring to Shane.

“He can stay with our neighbor,” I answered. “He can show you where she lives. His sister can go with him. She is in the back of the car. The baby, though, has to go to the hospital with me.”

The second medic went out to the car. I knew he had found Noelle when he called back to his partner, “Hey, Herb! This one has braces!” Yes, that was us: broken back, tracheotomy, long-leg braces —- and more.

In spite of such an unpropitious start, Doah did end up in Dr. Cotton’s care in Cincinnati. Dr. Cotton was able to stabilize Doah and take down his tracheotomy. It was clear that had Dr. Cotton or someone like him been at Renboro Children’s Hospital, Doah’s early life would have been much different.

While we were grateful that Doah’s most serious problem was a thing of the past, we were angry that Renboro Children’s Hospital could get away with such cavalier treatment. I thought about all the babies who had died during the winter of 1980 -— at least ten. During the winter of 1981, at least one more had died, and very likely there were others I did not know about. I thought about a ten-year-old trached boy whose parents had had no life because for ten years they took 12-hour daily shifts watching him. I thought, too, of the arrogance of the doctors in trying to take custody away from Charles and me, writing in Doah’s records that we were unfit parents, and thinking that parents have neither the right to decide on treatment nor information to contribute to a decision. The more I thought, the angrier I became. Something had to be done to stop such behavior.

I am the type who when faced with a problem meets it with direct and intense action. When Ma beat me, as soon as I was big enough, I beat her back. If I heard that someone had said or done something untrustworthy behind my back, I would call that person and ask. So, too, in this case, I chose to go to the perpetrators of the crime: the staff of Renboro Children’s Hospital. We made an appointment with the hospital administrator. There we laid out our case. First, Doah could have died from any one of the mucus plugs or his five cardiac arrests. Suggesting that they tie bells to babies' shoes was an inane way to tell parents to monitor their trached children. Doah needed an apnea monitor, and we had obtained one from State College, Pennsylvania, thanks to the intercession of the Beanton doctors. All children with breathing disorders should get them. Second, the doctors at Renboro Children’s should not try to handle stenosis and related medical problems because they lacked experience in this area. Either they should refer the patients to Cincinnati, or they should bring someone from Cincinnati onto staff at Renboro.

Perhaps my expectations for Renboro Children’s Hospital really were exceptionally high. A few years later when we moved to Washington, D.C., the chief of ENT at Children’s National Medical Center told the resident not to let me leave until he had spoken to me. Actually, he did not want to speak to me. He wanted to “shake the hand of the mother who had found the only doctor in all of America who could have saved her child.” He was, of course, referring to Dr. Cotton, who, it turns out, hailed from Canada, had moved to the USA only a few months before I tracked him down, and was, indeed, the only doctor in the USA capable of curing tracheal stenosis at the time. Were my research skills really that good, or did compassionate God guide me in finding the articles by Dr. Cotton? And how was it that Dr. Cotton had recently moved to a part of the world where his skills were accessible to Doah?

Whether or not our demands were unrealistic, Renboro Children’s Hospital fulfilled them. At first, the hospital administrator hedged. He called in the chief financial officer, who told us that our medical bill would be written off. We said we were not after money and that we would somehow find a way to pay the bill over time. What we wanted, instead, was changed practices. The hospital administrator would not make any commitment other than to consider our words, and we left feeling like we had just turned in a half-done homework assignment.

To our surprise, then, less than two months later our bill for the monthly rental payment on the apnea monitor came with a return address in Renboro. I physically went to the office to pay the bill. I was curious. The clerk told me that the office had opened recently because of the large number of new referrals from Renboro Children’s Hospital!

Likewise, shortly thereafter, I received an excited phone call from the mother of the ten-year-old boy with the tracheotomy. “You won’t believe this,” she said, “but Renboro Children’s Hospital has a new ENT doctor on staff. He just came there from Cincinnati. He examined our son yesterday, and he thinks he can take down his tracheotomy.” She started crying. They were happy tears: ten years of living in an emotional hell and a physical prison were about to end. I wondered how she would handle the immense change and relief that she was about to experience.

When I think back on all the fighting we had to do for our children, certainly I feel lingering frustrations and even, at times, anger. How unfair such a life was, at times, to them.

Then I think better of those emotions. When you think you have a hard lot, all you have to do is scratch the surface of someone else’s life, and yours suddenly looks not bad at all. There are those who would say that God gives each person no more than he or she is capable of bearing, but I don’t think God gives us our burdens at all. Rather, in my experience, the burdens come from the workings of nature, our own ineptness, and the sometimes ill-intentioned behaviors of others. God steps in and provides the support when our load becomes an overload. Doah would not be alive today, in spite of my overload, had there not been many moments of divine intervention.

And then there is the matter of changed practices at Renboro Children's Hospital. Had we not experienced what we did and taken the follow-on actions that we had felt prompted to take, the near-100% death rate of trached children likely would have have continued for some more years to come. As it was, to the best of my knowledge, no more children died. For me, it is just another example of God turning bad into good.

Saturday, January 23, 2010


I thought I had completed the mini-bios of all members of the Mahlou clan when the image of George’s face came to mind. Now, how could I forget George? He was another one of those accidental clan members like Vanessa (and her three children), Ksenya (and later, her mother Zina), and Shura. Ours, but not ours. Clan, but not kin. Nonetheless, clan George was/is, and so I include his mini-bio on this blog. (I am clearly delving into a pleasant past in order to avoid too much thinking about the current unpleasant present -- we all have our coping strategies!)

George worked at the same copy shop where Donnie served as the design center (yes, Donnie was referred to as “the center” since no one else worked there). I don’t recall just what George did. I think it was photocopying, folding, and stapling or something else along the lines of what machines, not people, do today. George and Donnie began work at about the same time, worked in close proximity, and had to consult occasionally on the end result of design products. So, they became pretty good friends pretty quickly.

It was at the newly formed friendship point that Donnie learned that George had no long-term place to live. The only landlord who would take him in was the owner of a skid-row-type flophouse, where George lived in a dayroom. The problem was not George’s meager copy-shop salary or his specific job. That would have been quite sufficient to pay rent on any simple efficiency in Salts, and many, if not most, people in Salts worked in blue collar or agricultural jobs. No, the problem was not the color of George’s money; it was the color of George’s skin. George was black. It seemed such an anomaly: Salts has a majority population that is Hispanic, grudgingly accepts Caucasians, and tries to dissuade other ethnic groups from settling in. (I wish I could say that it is better today, but I cannot say any such thing with any certainty.)

At this time in our lives, Vanessa had just moved out. Donnie and I had been discussing whether or not to move back into our master bedroom suite. Moving back would not have been that much work, but we were already used to our bedroom on the ground floor. (The master bedroom suite was below the ground floor and had a separate entrance and bath, neither of which we really needed, being the only people rumbling around in the 13-room house in which we had raised the large Mahlou clan.) George’s appearance on the scene was a great alternative: we could rent the master bedroom suite to George for whatever he could afford. Like Vanessa, he would have to share kitchen facilities, but being a New Englander, for me all life takes place in the kitchen, not the living room. So, I welcomed company in the kitchen again. Life would be back to, well, life – a place where people interact.

George agreed with alacrity and pleasure. We all lived together cozily as a mini-clan . George was very quiet. Mostly, he kept to himself, occasionally coming upstairs to watch television. Months later, when Shura arrived with his father, who stayed with us until we had Shura’s surgeries arranged, I did not have a chance to introduce George, who was usually around only for a while after work and before going to bed. The plane carrying Shura and Lyonya arrived very late, and so we all tumbled into bed upon reaching the house. I showed Shura and Lyonya, who would be getting up after Donnie and I had gone to work, the location of the important things – bath, towels, kitchen, television, etc. That first evening Donnie and I both had to work late. Arriving home around 6:30 (Donnie was still at work), I found Shura and Lyonya sitting on our stone-step entrance. I thought that they had decided to soak in some sun rays, but no, not exactly.

“Beth,” said Lyonya with wide eyes and great excitement, “est’ muchshina na divane.” (There’s a man on the couch.)

“Muchshina? Kakoj muchshina? Otkuda on poyavilsya?” (A man? What kind of man? Where did he come from?)

Then Lyonya whispered, nearly in terror, “on chernyj.” (He’s black.)

I wanted to laugh, but I controlled that urge. Imagine the scene! Up from the downstairs at the end of the day (I guess he had been there about a half-hour) comes a tall, brawny, African American, who turns on the television and sits down, not knowing that there were two Russians in the kitchen. George could have guessed who the Russians were when they popped into the living room from the kitchen because he knew that we had gone to the airport to pick them up the night before. However, I had forgotten to say anything to them about George. Moreover, George spoke no Russian, and they spoke no English. They fled to the outdoors! Once things were straightened out with an interpreter (yours truly) available, we all had a good laugh.

The most disconcerting aspect of George’s appearance for Shura and Lyonya paralleled that of the people of Salts: his skin color. African Russians are quite rare. Most of the Blacks I personally knew in the Soviet Union came from Africa and attended Patrice Lmumba University (the informal nomenclature, the full name literally being the University of Nations’ Friendship Named After Patrice Lmumba). Otherwise, I never saw anyone of African origin, and neither did the Robert Robinson, the author of the book, Black on Red, a well known biography of an African American (Robinson) working temporarily in Russian before the 1917 Revolution and being trapped in the Soviet Union for many years afterward as a result of the Revolution.

There is more to be said about skin color, prejudice (even when people don’t think they are prejudiced), and how coming to know people as individuals washes away the surface differences, such as ethnicity and race. How well we know! My son-in-law gets picked up nearly daily for DWM (Driving While Mexican) in South Carolina.

For now, I will stop with saying that George lived with us, accepted by our neighbors, until he had to return to Chicago to tend to ill parents. We enjoyed having him as a member of our clan, and he seemed to enjoy being a member of the clan.

Perhaps I have remembered him at this time because of the passing of Ray. Ray was another African-American member of the Mahlou clan, which, with Hispanic (Lemony and Blaine, and, of course now, Nathaniel and Nikolina) and Native American (me through my father's line) blood swished into the mix, is becoming quite colorful!

I have no pictures of George that have survived our multiple moves, including to the Middle East and back. Therefore, I cannot even promise to post some later -- and then forget to do it!

What I do have, though, is a very interesting film about a teacher demonstrating the effects of prejudice to grade 3 children, an amazing study in how easily it is to develop prejudice, how insidious the effects are, and how to train people out of it. It is called A Class Divided. It is a famous study, so some of you may have seen it. (I had not; a student of mine while teaching in Lithuania told me about it.) If you are not familiar with it, click on the title. You will not regret it it. It is a fascinating and awesome study and good documentary.

Saturday, January 16, 2010

Tender Mercy for Ray and Noelle

Many, many thanks to all of you who have been praying for Ray and our family, especially those who promised to pray at 6:00 last night as he was taken off life support. There was no way to let you all know that the 6:00 prayers were excess -- but, then, are any prayers really excesss? -- for Ray had already passed away by that time.

At 9:20 a.m., Noelle called me at my office. She told me that the hospital had just called. The doctor relayed the information that Ray's respirator hose had suddenly and unexpectedly torn, and he had died instantly. The doctor added that no one had touched the hose at all, so there was some puzzlement as to how it had happened; this is not something that they routinely worry about or look for.

That event made unnecessary the need to go to the hospital at 6:00, give permission to remove Ray from life support, and watch him die. While Noelle is experiencing much grief from losing Ray, there was wonderment and immense relief in her voice as she told me what happened. She had been very apprehensive about the planned trip to the hospital.

"This is a blessing, Mom," she told. "A real blessing. He did not die by my hand, by my concurrence that he should be unplugged. He just died because his life was over."

Sometimes God's kind mercy is so startling that one cannot even say a normal prayer but just keep repeating over and over in awe and gratitude, "My Lord and my God, THANK YOU!"

Concurrently posted on Blest Atheist Modern Mysticism.

Thursday, January 14, 2010

Clan under Siege

As we prepare to remove Ray from life support tomorrow evening and I prepare to leave for Lithuania on annual leave to help out a friend who is in desperate need for a professor of linguistics to teach a senior year required course, the need to balance the competing requirements of funeral, trip, and emotional support for Noelle seemed to be challenging enough. Apparently, not so.

Yesterday I learned that we have a very senior official from the US government coming tomorrow afternoon, right before our trip to the hospital, and I am the one who has to brief him on our planned new projects about which I have blogged in the past. That should create a sense of nervousness -- my boss is certainly nervous -- but with everything else going on, it is just going to be another hour of my life that comes -- and goes.

More important and overshadowing even Roy's pending death is the news that Shane received this morning. He was handed his paycheck with a note to see the chief of police (his supervisor's supervisor). The chief of police told him that today was his last day. He would not give any reason. Shane puzzled over any possible explanation. His performance, if unsatisfactory, should have showed up as an issue before this, but he was given a pay raise for his excellent performance. If the organization had a budget crunch, others should be aware of it and other jobs should also be on the cutting block. Neither is the case. No one else was fired, and there has been no talk about budget crunch. We are pretty certain the reason is because Shane has missed so much work from having to be with Nikolina during her surgeries, followed by his own appendix surgery. A couple of months ago, the Human Resource office made an inquiry into the amount of leave he had used. (He was entitled to the leave, never going into a negative leave status, but he did miss a total of three months because of the medical emergencies.)

I remember these kinds of issues and challenges raising seven kids, three of whom were physically disabled. Balancing work and home often left me nervous that a particular supervisor would not understand the need for me to be with one child or another during a medical crisis, especially when we were experiencing wave upon wave of medical crisis during the 1980s. Fortunately, most of my supervisors were very understanding. Still, many times I feared for my job, and other times I observed other parents released from work for "lack of availability" because of the need to take care of handicapped children. These are some of the many of the hidden challenges in raising children with birth defects.

Contrary to our hopes for him, Shane is following us down the thorny path of trying to provide for Nikolina and Nathaniel in a society that is not highly supportive of children with special needs, let alone of their parents. Many parents I met over the years dropped out of society and survived on welfare simply in order to have adequate medical care for their children. We did not do that. We did without the luxuries of life, as well as many necessities, in order to provide adequate medicine and education for our children. Anything beyond that was a "want" and not a "need," and we gave up many of our "wants."

Shane is getting ready to do that. Since Lemony has been full-time occupied in taking care of Nikolina and Nathaniel, the family is now without an income. More frightening is that our million-dollar baby (Nikolina) may be without health insurance coverage -- and that is just not an option. Shane has some ideas for short-term financial survival, is looking into the cobra option for continuing his current health insurance (which, unfortunately, may cost more per month than his monthly unemployment check), and he has already put out feelers for employment opportunities. (Creative survival ideas from readers are also welcome!)

Well, besieged again, the Mahlou clan will gather its forces and outlive the siege, I am certain. God is always good to us, and Shane has an excellent attitude. "Just think," he told me, "this might be a door to a new position that is better than what my current job has been."

Yes, Shane, I think it will be! God has a way of turning bad into good. Who knows what exciting plans He may have in store? We just have to help Him help us by helping ourselves and each other -- and then hang on for the ride because God's rides are usually WILD!

Wednesday, January 13, 2010

Joy in Despair

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.

Thursday, January 7, 2010

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.

Wednesday, January 6, 2010

The Episode of Noelle's Wrist

(I had planned to add the following "event" to those in the bio post on Noelle, but it was too long, so I am giving it a home of its own -- probably it will be easier to find here, anyway.)

Once when I picked up 5-year-old Noelle from all-day kindergarten, she told me she had fallen and broken her wrist. The teacher’s helper, who watched the children after school, confirmed that Noelle had fallen, had said that she had broken wrist, but had continued to walk around in her braces and crutches with no change in gait or obvious pain. I queried Noelle about that. She shook her head, held out her right arm, and with her left index finger pointed to her right wrist, saying “It’s broken right here, Mommy.”

“Yes, that’s what she told me,” confirmed the helper, “but there’s no swelling or any other evidence of a break. She picked herself up from the floor and started swinging across the room as if nothing had happened.”

“But I told you I broke my wrist,” Noelle interjected, “right here.” She pointed to the same spot.

The helper pointed out that if it were broken, Noelle would not be able to bear weight on it as she had all afternoon. Again Noelle interjected, “But it hurts when I swing because my wrist is broken right here.” For the third time, she pointed to the same place.

I told the helper not to worry about it. I would deal with it. We were both pretty certain that Noelle was simply feeling bruised after a tumble.
When I picked up Shane and Doah from their day care provider, Noelle held out her arm to them and said, “Hey guys, look! I broke my wrist right here.”

“Noelle, let’s talk about something else for a while,” I suggested. “Why don’t you tell us what you did at school today.”

“At school today I fell and broke my wrist right here,” Noelle responded. So much for distracting her attention from her newly found fascination with her wrist!
Lizzie was waiting at home when we all got there. Shane and Doah scampered into the house. It took Noelle a little longer to navigate the stairs with her braces and crutches, but as soon as she was on the top stair, she called out, “Lizzie, Lizzie! Guess what happened at school today! I fell and broke my wrist right here.” Lizzie was by that time at the door and able to see where Noelle was pointing.

“Oh, for Heaven’s sake,” I said to Lizzie, “all she has been talking about since I picked her up is her wrist. It can’t be broken, or she would not be able to walk on it.”

Noelle interrupted. “It is broken, right here, and I can walk on it.” There went that pointing again.

“Noelle, it would hurt too much to walk if your wrist were broken. You would be in a lot of pain.”

“I am in a lot of pain,” she responded, “because my wrist is broken right here.”
“If you say that one more time,” I warned her, “we are going to go to the hospital and have it checked out.”

“My wrist is broken right here,” Noelle pointed out. With a smile she put on her coat, assuming that we were going to go to the hospital.

“Okay, everyone in the car,” I called. “We are going to go have Noelle’s wrist checked by a doctor.”

“Because I broke it right here,” Noelle chirped up with more pointing.

Ushering them all into the car, I stopped long enough to call Donnie at work and tell him that we would be in the emergency room for a while, maybe until after he got home. Then off we went.

The emergency room doctor listened to my story, then asked Noelle what happened. She described her fall, then held out her arm, and, pointing, said, “I broke my wrist right here.”

The doctor opined that it was hardly likely that Noelle had a broken wrist since he had seen how nimbly she had maneuvered herself on her braces into his office and onto a chair. “She would be in too much pain to do that if the wrist were broken,” he said.

“That’s what I thought, too,” I said. “But she does have a high tolerance for pain.” Actually, both Noelle and Doah ignore a level of pain on a daily basis that many people would find intolerable. It may be genetic. I have a high pain threshold as well, tolerating root canals and biopsies done the grin-and-bear-it way since I am allergic to painkiller.

After some hemming and hawing, the doctor decided to send Noelle for an x-ray just in case. While I don’t like extra x-rays – Noelle gets far more than her share of them – I was in a way glad that the doctor decided the way he did. At least, it would put the question to bed. If an x-ray were to say the wrist was not broken, it was not broken.

After a lengthy period of time, the x-ray and the doctor came back. He put the x-ray up against a light board and said that he had read it. He took Noelle’s arm, and pointing to her wrist, said with a touch of irony and a touch of surprise, “She broke her wrist right here!”

Who would have thought? Sometimes kids know best! It was good that she was persistent, a trait that she has needed as an adult as well.

Of course, a broken wrist for a paraplegic in braces and crutches is like two broken legs for a non-paraplegic person. No weight-bearing meant no walking. We did not have a wheelchair for Noelle, but the hospital loaned us one. Otherwise, I would have had to carry her home. Sheesh!

She did not get her first wheelchair after her sophomore year in college – so she did a good job of managing those braces and crutches for a very long time in spite of the braces reaching all the way to her chest and, therefore, weighing more than ten pounds. She finally went into the wheelchair when the bracemaker gave up on repairs – she was breaking the braces every few weeks from dancing, ocean wading, and a host of other physical activities not normally expected of someone in braces. It was and is frustrating that braces, which are more liberating than a wheelchair (at least, in Noelle’s mind), cannot be made strong enough to stand up to active adult use.

As for back then, when Donnie came home, Noelle held out her arm with its cast and told him solemnly, pointing, “Daddy, I broke my wrist today right here."

Friday, January 1, 2010

In 2010, Find Time for Family and Friends

Upon quite rare occasion, a post is pertinent to more than one of my blogs. In this case, the new year's resolution proposed by the title came from an essay I published in a collection of vignettes in 2003. I am dual-posting because it is about the Mahlou clan when the current adult crop were children and seems appropriate to a New Year's post.

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. In the afternoon, he attended the local high school until after a few months he reverted to homeschooling because of boredom.

My boss learned of this and offered him an unpaid internship, consulting for her department in the area of computers, working around his homeschooling needs. 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, Donnie, 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.



Excerpted from a collection of vignettes, copyright 2003.

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