God's Trust and My Children/Grandchildren

Recently in our prayer group, one of our members talked about some difficult times she and her family were facing, and she called it a "test" from God. We moved from there to similar kinds of issues in other members' families and then on to a discussion about my children, especially the three (two of my own and one who came and lived with us) who must deal with one or more birth defects (Noelle, Doah, Shura), along with my grandchildren who have also been affected by these family "gifts" (Nathaniel having been born with hydronephrosis and Nikolina with that, too, as well as OEIS Complex). It surprised me to learn that these people of God looked at my children and my family situation so differently from the way I look at it.

First, my children are not burdens. They are blessings.

Second, life with these children is not difficult although it is challenging. It is a constant opportunity to learn and to grow, including learning how to lean on God and others God sends, which, I believe, is something that God wants us to do.

Most important, in no way do I think that God is testing me or my family. Rather, I feel favored that God would trust me (of all people) with something so special. Likewise, I don't believe that my friends are experiencing a test from God. I believe that they are experiencing God's trusting them not only to cope with the difficult situations that they face but also to learn from them and to grow in faith (and yes, trust).

May God continue to bless all of us in this extraordinary way, and may we learn and grow and live up to His trust in us!

Taking a Broader Perspective

Another shared post -- this one from Mahlou Musings where, among other things, I post excerpts from a book of vignettes that I published in 2003. Since the post included both Noelle and Shura, whose stories are part of the life of the clan of Mahlou, I thought it made some sense to double-post in this case.

Far too often, we consider the impact of the moment only. How things affect us right now tends to be more important than how they fit into the bigger scheme of things. In fact, when one is irritated, angry, disappointed, or threatened, it is very difficult to see the larger picture. Yet, that is precisely when it is most important to keep things in perspective.

My younger daughter, Noelle, copes with spina bifida, a neurological defect that, among other things, has left her with full paralysis below the waist. However, she has nearly always kept matters in perspective. Taking a broad perspective has allowed her to lead a fairly normal life -- attend local schools, go to college, work part-time, play (including roller-skating), and the like. In fact, her ability to take a broader view of things has at times quite surprised the medical profession.

A few years ago, she was sitting in a wheelchair, not paying much attention to her feet. First, she was not used to a wheelchair, having used long-leg braces for ambulation up until that time, and second, she does not feel her feet. As a result, when she accidentally caught her small toe in the spokes of the chair's wheel, she did not notice and ended up tearing the toe nearly off. Amputation was the only resolution of the problem.

Clearly, the doctor who amputated felt sorry for Noelle and wanted to help her through her feelings of loss. However, Noelle had no feelings of loss.

"Are you missing your toe?" asked the doctor. What she meant to ask was whether Noelle was feeling bad that the toe had to be amputated.

Noelle, already looking at the situation from the broader perspective, took the doctor's words literally. "Yep," she replied. "It's all gone."

Somewhat taken aback, the doctor clarified. "No, I meant, do you miss having a toe there?"

To that Noelle replied, "I have never felt that toe. How can I miss something I never knew I had?"

I learned the lesson of acting within a broad perspective even more dramatically from Dr. John Blanco, an orthopedic surgeon at the University of Virginia Hospital (referred to in some of my writings, those that are pseudonymized, as Virginia State Hospital). At the time, I was the American guardian for Shura Ivanovich, who illustrated my vignettes book. I had brought him to the United States from Siberia, where he was not being adequately treated for spina bifida. Like my daughter's, his legs were also paralyzed but not as extensively. He was able to ambulate with crutches alone. However, as a result of inadequate care, both of his legs had become gangrenous, and the flesh on his feet had been eaten away.

Bringing Shura to the United States took nearly a year. The American Embassy in Moscow required incredible amounts of paperwork -- notes from the doctors in Siberia and notes and faxes from American doctors. Even then, the visa was denied, and I went to Moscow personally to intercede. Some of the embassy personnel were former students of mine, and they vouched for my sincerity and honesty to the consular officers. Finally, we had the visa, but Shura's condition had worsened. He was in the hospital. It took another couple of months before he was stable enough to move, during which time the gangrene worsened.

Once in the United States, Shura's first need was orthopedic care, which Dr. Blanco donated. What was needed was unfortunately very clear: a double amputation. The gangrene by then had taken over both legs, requiring amputation at the knee for one leg and amputation at the calf for the other. Shura took it in stride and readily gave permission. I, however, was devastated. I had to know the impact of the delay in getting the visa on the need for amputation.

"Could you have saved Shura's legs if we had brought him here a year earlier?" I asked. I thought I knew the answer. However, Dr. Blanco understood what was behind the question and gave me both an honest answer and a broader perspective.

"Perhaps I could have saved one of the legs," he replied. "The other leg was probably in poor shape even a year ago although I might have been able to save more of it. The important thing, however, is not whether getting him here earlier would have saved his legs. Rather, getting him here now saved his life."

A leg or a life -- that is a rather vivid way to describe what a broader perspective means.

Weeping Icon

In an earlier blog post on Clan of Mahlou (From Siberia to the California Coast Flew Wunderkind Shura.), I related the story of Shura, a dying child artist from Siberia, who came to stay with us in order to save his life, a story crammed with miracles.

Shura's story took many twists and turns. However, we did erroneously think that the story was over when he survived all his surgeries and especially when a couple of years ago he returned to Russia. One of the key players in this story had been Max, the INS supervisor who helped us tremendously when it came to visa problems. We met Max when he coincidentally stopped by St. John's Orthodox Church in Washington DC when the priest included a moleibin (prayer service before surgery) for Shura during a feast day observation on a Tuesday evening when Max felt the need to attend Mass after work, the only time he had been at St. John's in a year because he had moved to Baltimore a year earlier and attended Mass there (and, as it turned out, he never returned after that evening, choosing to continue at his own church in Baltimore). Shura's story was not over because we did not know Max's story until barely a year ago. And so I add here -- and in my second book -- the fuller story of Max.

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Just when we thought we had completed the puzzle, the picture expanded. A few months after Shura returned to Russia, Nadezhda Long called me from Washington. She had been reading a newly published book and wanted to share a story from it with me.

“Beth, you are simply not going to believe this,” she bubbled over the phone. I wondered what could be so exciting that it caused her words to tumble out at a speed requiring concentrated listening. I was about to find out.

“Remember Max?” she asked.

Remember Max? Without Max, Shura would have long ago been shipped back to Russia, before his health had stabilized. Without Max, Shura might even be dead now. And, of course, who could not forget the oddity that Shura’s unannounced moleibin was the only Mass at St. John’s that Max had visited in the year since he had moved to Baltimore and, in fact, was the last Mass he ever attended at St. John’s. I mentioned all this to Nadezhda, commenting that his appearance that evening seemed nothing short of miraculous.

She cut me off. “Oh, we did not know but a small part of the significance of Max being there that night!” she exclaimed. Now she had my attention!

“Max is a convert to Orthodoxy from atheism, and his story is included in this book about a special icon.” Instantly, I liked Max even more. His story paralleled mine—but it did not. What Nadezhda then related to me left me without words.

“Years ago,” she said, “an icon that wept oil with healing powers was brought from Europe to the United States, where it was presented at a number of Orthodox congregations. Among these congregations was our church, St. John’s, and among the congregation was a blind boy, who had lost his eyesight to disease. When doctors could not help, his parents brought him to the icon in an attempt to try anything to help their child. When the icon passed by the boy, it began to weep oil. The priest placed the oil from the icon on the boy’s eyes, and the boy saw. From that day on, he was no longer blind. And from that day on, his parents, Max and his wife, having converted from atheism to Orthodoxy on the spot, have been devout worshippers.”

If there had been no icon miracle ten years before Shura was born, there could have been no miraculous appearance of Max on the night of Shura’s moleibin. When Nadezhda relayed the story to me, I had no words with which to respond. I still have none.

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excerpted from my forthcoming book, A Believer in Waiting's First Encounters with God

also posted on Modern Mysticism

Remembering San Diego

Donnie and I spending time with Fr. Julio in San Diego this last weekend brought back a host of memories of the days when Lizzie, Blaine, and Noelle lived there. They are now scattered into three locations, so the memories evoked a sense of nostalgia for a simpler time (or maybe it just seems simpler in retrospect). I will share of few of the many memories that flooded us during our three days there.

First, there was Angel. Noelle and Lizzie moved to San Diego a year before Blaine joined them. We had no idea where were the good and bad parts of town, safe and not safe areas. We did know where the areas were that they could afford the rent and where they could not. Where they could afford afford the rent was not as comforting to me as their mother as were the areas where they could not. However, the manager of the apartment complex upon which they ultimately decided reassured me, promising to watch out for them as if they were his own daughters. His name? Angel. I figured that was a good a sign.

While Angel was watching over them, I did not worry about them. Then Blaine moved to San Diego, and life became more interesting (for all concerned).

For starters, there was the time that the kids were coming home to visit. Lizzie called me as they were leaving San Diego so that I would know to plan for their arrival and just because parents like to know these things -- where their kids are, when they are leaving for home, and all that stuff. Several hours later, Blaine called to say that they would be home in approximately an hour. I did a quick calculation and remonstrated, "You had better not be!" because that meant that they had been driving too fast for my comfort. Two hours later, they showed up. "That's more like it," I told Blaine. "I thought you could not be only an hour away." Lizze later pulled me aside and told me that they really had been only an hour away, but they all decided to sit beside the road for an hour so I would not be unhappy with their arrival time! (Kids!)

Then there was the time that we had just spent a small fortune on new glasses for Shura. (He brought very little with him from Siberia, so there were many new supplies to be acquired for him, including some very important things such as eyeglasses.) He was quite proud of those glasses, and we did not have to enforce his wearing them. He always did. In between surgeries in Charlottesville, Virginia, where we had been able to set up his care with the help of a philanthropist, John Kluge, a wonderful man who died earlier this year, he came "home" to California and decided to spend some time in San Diego with Lizzie, Blaine, and Noelle. I should not have been surprised by the phone call later that week because there was something scatterbrained about Shura. Maybe it is simply the artist's temperament. In any event, Blaine and he were cruising along the coast, enjoying the sun and wind, and Shura, not used to cars, stuck his head out the window to feel the greater effect of the wind. Whisk! His expensive eyeglasses were gone with the wind, literally. Chagrined, he had to go get a replacement pair. (Kids!)

Then there was the time that Noelle took the wrong bus home. Her trip turned out to be a different kind of joy ride from that of Blaine and Shura. A bit ditzy at times, Noelle, realizing that she did not recognize the areas the bus was traveling through, decided to stay on the bus until she did recognize something. It never occurred to her that she was on the wrong bus. Well, the bus finally reached the outskirts of town and stopped. End of line. It was nor returning. End of day. So, Noelle hopped off the bus, in her braces, with her crutches, carrying her backpack, and hitchiked back into town. Some kind man picked her up and brought her all the way to her house, where Lizzie proceeded to give her quite a lecture on the dangers of hitchhiking (although one thing I have noticed with handicapped children: they bring out the best in people, and rarely do the "bad guys" want to "mess" with them -- I think God keeps a pretty close eye on them. (Kids!)

Of course, if I can complain about kids (!), then I guess they should be allowed to complain about parents (!). When the kids were living in San Diego, I was working on a couple of books for publication, and I loved using Lizzie's library (University of California at San Diego) for research. So, I would visit quite frequently. In the beginning, Lizzie's supervisor at work (she worked in the bookstore while going through college) would offer to give her the day off so that she could spend time with me, but Lizzie would tell her that I had come to visit her library or that if she visited with me she would end up helping with research (which she did not mind doing, but she preferred earning money from working more), so soon her supervisor stopped offering, and Lizzie and I and the other kids just spent evenings and weekends together -- and even on some of those occasions when I had a close deadline, they all ended up helping me with library research. I am sure that their response would have been: Parents!

And the bottom line? The kids needed the parents, and the parents needed the kids -- and the complaints were all just in fun (well, mostly).

The Worst Is the Best

A while back I was attending a First Friday gathering where we had an interesting experience-sharing activity. Fr. Gavin asked us to write down for later sharing the best things that ever happened to us (and the reasons we considered it the best thing) and the worst thing that ever happened to us (and the reasons we considered it the worst thing). As I reflected on my life, pondering over what really and truly I would consider the best thing and what I would consider the worst, I stumbled against a dilemma: the best thing and the worst thing were the same thing! I didn't think that Fr. Gavin would expect that particular outcome, and when I shared my thoughts, his stunned surprised indicated that he clearly had not considered that the best and worst things might be the same, but he understood my reasons for saying this.

I identified the birth of Noelle, with her array of birth defects, as the worst thing that had happened. This was not the cute, cuddly baby we had expected. In fact, it would be some time before we could even pick her up because she had to be airlifted out of town and run through a series of surgeries. Thirty years ago, surviving spina bifida, epilepsy, Arnold-Chiari malformation, paraplegia, and hydrocephalus, along with some of the surgeries done to manage her life, such as a colostomy, was not as likely as it is today. Never, though, is it easy to handle all the physical, psychological, emotional, educational, relationship, etc., etc., needs of a handicapped child. Learning that my perfect baby had some imperfections in the eyes of the world, at least in the eyes of the medical world was not the best moment of my life.

Or was it? I could not think of anything better that had happened to me. Through Noelle, I learned much that I would never have known. Through her, I became ready to mother Doah. Through her and Doah, our family bonded, our able-bodied children learned compassion, and all our children learned a lot about creative problem-solving as we struggled to figure out ways to incorporate all our children into all our activities (e.g, traveling, hiking, roller-skating -- even paraplegic Noelle learned to roller-skate, braces and all). None of them are afraid of life because they have met it head-on, thanks to unique situations that first Noelle, and then Doah, and the Shura introduced us to. And, of course, thanks to Noelle and Doah, we were all ready to open our home and hearts to Shura when the time came.

Interesting, isn't it? Just when we think something really bad has happened, God puts it all into a different light, using it for good, and showing us the very worst can actually be the very best.

Noelle Waits and Watches

(Sorry, no photo -- will add later, when Blogger is more willing to upload an image!)

The latest is that the likelihood of one or both of Noelle's legs being amputated has just escalated from the realm of possibility to that of probability. This is an issue she has wrestled with ever since she left braces behind in her mid-twenties and began using a wheelchair full-time. Not bearing weight on her legs has weakened them considerably and contributed to seriously poor circulation. For the last two years, her legs have been constantly infected, and she has been on a pump to remove the infection for weeks, sometimes months, at a time. Moreover, she has to clean and wrap her legs everyday.

A couple of months ago we had a real scare when the infection got into the bone. She slid by without an amputation that had been threatened by her orthopedic surgeon when I knew guy, trained at Stanford University, showed up on the day of her surgery at the local hospital and had some ideas about how to avoid amputation. Somehow, too, the infection had abated back out of the bone, making the condition less worrisome.

Perhaps that scare and abatement was simply a way to prepare us all for the inevitable -- or may it is not inevitable. That we will only find out in hindsight. At this point, though, it appears that amputation is in the offing.

Now, one has to realize that Noelle does not think about her legs like you and I think about ours. She has never felt them. They have always been limp. (She is paralyzed from the chest down.) So, for her they have been more of a nuisance, once she left behind braces (in braces, they legs were what allowed her to be upright), having to be moved by hand and often prohibiting or at least impeding movement from one position to another. She does not feel her legs, so if she is not looking at them, she is unaware that she has them.

People will sometimes ask her if it bothers her that she cannot walk. Her standard reply is, "Does it bother you that you cannot fly?" Her point is that people cannot "miss" flying because they have never experienced it. Likewise, she cannot miss walking because she has never experienced it.

Years ago when she first started using the wheelchair and was unaware of its complications and dangers, she tore of most of one toe when it became caught in the spokes of one of the wheels. The doctors had to amputate it. I was in the room with Noelle when the doctor popped in post-surgery. Concerned about Noelle's potential negative emotional reaction to the surgery, the doctor asked her kindly, "Are you missing your toe?"

Now, the word miss has more than one meaning, and Noelle understand the question quite differently from how the doctor meant it. "Yep," she replied brightly, "it's all gone."

The doctor seemed shocked. I don't think she had much experience with people who have been paraplegic from birth. "She cannot 'miss' her toe in the sense that you are asking," I explained to her, "because she never was aware of its presence."

And now we have the same issue with her legs. I am not sure anyone in the family was ready to accept amputation earlier -- and prayed that we would not have to (prayer answered) -- perhaps because of personifying it for ourselves and perhaps because of some idea that having legs, even ones that are non-functional, is more aesthetically pleasing than not having legs. However, in reality, the legs are misshapen and infected and not aesthetically pleasing at all. It is stereotypes, not reality, with which we have been living. Now reality has knocked at the door and said, "Folks, you have a choice. Legs or life." Put that way, there is no choice.

We have all gone through this kind of crisis before. Shura, as a teenager, much younger than Noelle, who now has three decades of experience against which to gauge her response, had the same choice: to die with his gangrenous legs or to live without them. He chose life. So will Noelle.

George

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.

From the Siberian Taiga to the California Coast Flew Wunderkind Shura

I have done a few posts already on Shura, the last arrival into our family (well, the last child arrivee). So, I will point you to those posts and summarize here. (The whole story is so complex that it took me 2/3 of a book to tell it; it is one of the two framework stories for Blest Atheist. I have included a short excerpt from the book on my Mahlou Musings site: "Siberia on Easter Morning".)

I don't know why I was so attracted to Siberia, but I was from the very beginning of my Russian studies in the 1970s. I finally made it to Siberia in 1984-1985, taking Lizzie with me, where I studied the dialects of Russian spoken there. In Siberian dialect, there is an expression, "the mink whistles at me." This expression means that one is attracted to something for some compelling reason, does not know why, and cannot resist. When it came to Siberia, the mink whistled at me.

The winter of 1984-1985 was cold in more ways than just the deep snow across which Lizzie, I, and our Siberian friends cross-country skied, one of the few leisure activities available in the wooded steppe when all was frozen over. The Cold War between the US and USSR was still in its below-zero stages, so it was somewhat of a surprise that the mink's whistle was strong enough to force the hand of the Foreign Student Office at the University of Moscow to allow Lizzie and me to go to Siberia, against its desires. No one had gone there to do research since the Cold War started. (My trip there with Lizzie opened the door to other scholars.) One of the most instrumental people in getting the university to change its mind was Dr. Alexandr Ilich Fedorov, the head of the Institute of Philology at the Siberian Branch of the USSR Academy of Sciences in Akademgorodok, where I did my research. Alexandr Ilich called the University of Moscow, after learning of my interest from my advisor there, and said that he had prepared everything for me to come to Siberia. Reluctantly, the university let us go.

So there were Lizzie and I, two lone Americans, conducting research, learning to ski, and interacting with the locals in a variety of ways. What most people in that era knew first-hand of Americans came from us, and we were aware of the importance of that.

Aleksandr Ilich, whose dictionaries were key to my research (oni mne kak zoloto, I told him, meaning that they are like gold to me -- this pleased him mightily), became my consultant, friend, guide, and Siberian father. Years later, he was quite pleased when he learned that I had befriended a Siberian boy, Shura, who was dying at the time. But, I get ahead of myself with the story.

Many years passed between my research days in Siberia and my contact with Shura. One day in 1993, when I was conducting training in Krasnoyarsk, I learned in talking to the head of a delegation of teachers from Akademgorodok (Novosibirsk) that Aleksandr Ilich had been her graduate advisor at the university. When I asked her to take him an answer to his last letter and news about Noelle's recent surgery related to her spina bifida, I discovered that her godson, a talented child artist, was dying from spina bifida. We hatched a plan to save him.

A year later, with the help of Noelle's neurosurgeon, I had pried a visa for Shura out of the US Embassy in Moscow, and he was living with me. With no money for his medical care, I had miraculously (seriously) found a billionaire who gave the University of Virginia Hospital (he insisted on UVA Hospital) a half-million dollars for Shura's care and then doubled it when the cost of care ran over. There were so many miracles associated with Shura's surgeries and health that I have chronicled them in multiple posts (click on "posts about Shura" below).

Shura stayed in the USA for 15 years. Initially, he lived with me, but when the trips from California to Virginia for follow-up care became burdensome, the nurse who headed the spina bifida clinic at UVA Hospital offered to take him into her home, and there he stayed until he took some college courses, began an art career (supported by work as a chef), married, and then divorced. He returned to Russia this past January to be with his aging parents. Medical care in Russia, especially the availability of antibiotics, has significantly improved since the days when the doctors were unable to treat him in Siberia. It also helps that his parents and most of his siblings have since moved to Moscow.

posts about Shura

Photos:
Shura(coming)
Shura's drawings




















House of Scientists (Shura had art exibits here as a child, an extraordinary and unique achievement)










Morskoy Prospekt (Sea Prospect, the main street in Akademgorodok)