Friday, October 11, 2013

Shura's Miracles

Next on the list of my children who have benefitted from the kindness of angels in the garb of professionals is Shura. (I don't know whether to include him among our children or not since he was with us for such a short while, but in the broader meaning of the word, he is our child even though Donnie could not even communicate with him in the beginning, Shura speaking no English and Donnie speaking no Russian.) Anyone who has read my book, Blest Atheist, knows the story of Shura in grand and glorious detail. I include it here in very brief form for everyone else and as part of the series of the positive things that other people have done for my children.

About Shura:
Shura was a dying child artist from Akademgorodok, Siberia, a place where I had done research, consulting, and teaching, and my second most favorite place in the world, the first being the little mission town I live in right now. (The picture on the left was drawn by Shura following his first surgery in the United States.) He was remarkably talented. As a very young teenager he had had two exhibits at Dom uchenykh (House of Scientists, which recognizes the leading academicians and artists in Russia, at that time the Soviet Union), poetry published in a collective volume, and a television documentary on his life. Shura was unusual in Siberia in that he was alive. Born with spina bifida during the Soviet era in a region with a paucity of antibiotics and no experience with these kinds of neurologic defects, accompanied by extremely harsh winters with temperatures dipping lower than 75 degrees below zero, and into a family of seven children (nearly unheard of in the USSR - the family required two side-by-side apartments in order to accommodate all its members), Shura grew up homeschooled by necessity in a country where such a thing was not only unheard of but also rejected out of hand. To make a long story somewhat shorter, through actions taken by Shura's godmother and me, Shura ended up in the USA for life-saving surgery. Here I was his guardian, and then he moved in with Julie Trudell (see Shura's caregivers below), and then began to live independently in Charlottesvile, Virginia as a chef and artist. While recuperating from his surgeries as a teenager, he was granted a residency at the Virginia Center for Creative Arts, the youngest person ever so honored. Last January he returned to be with his Russian family, now living in Moscow in the new Russia where antibiotics are more readily available and where Shura hopes to devote full time efforts to his art.

Shura's challenges:
Shura was born with lipomyelomeningeocele, a form of spina bifida, resulting in mild paraplegia (limited to no movement below the knee). He ambulated with crutches and, when allowed, on his knees. Over time, as result of untreated ulcerations that are typically for enervated skin, he developed gangrene in both legs, requiring an amputation of both. Ambulation is now accomplished with prostheses. Although he has a neurogenic bladder, he has refused to self-catheterize. Doctors were able to improve on his bladder functioning sufficiently to allow Shura close to normal bladder control. The lipomyeloneningeocele was not repaired at birth, as is usual in the USA, and until this day remains, now by choice, unrepaired; it has so far created no health damage. Concerns are that repair would result in hydrocephalus, which Shura does not currently have.

Shura's special caregivers:

Shura's family: These were the caregivers who kept Shura alive against all odds and then, when there was no longer any hope of keeping him alive in Siberia, handed him over to a stranger (me), fully trusting God to watch over him. (That faith was surely not in vain!) Shura's mother was a teacher, and she taught Shura at home; he is highly educated in spite of never having attended a regular school. She was also the faith center of the family. She knew that Shura was God's special child, and she made sure that Shura knew: he came to me full of faith. Shura's father, wounded in the war, walked with an energetic limp. A dreamer and printing press owner, he worked tirelessly on behalf of getting his son to the USA, gathering in money from visitors to Akademgorodok world-wide. When he delivered Shura to me, he handed me a large bag of coins and bills from many different countries, not enough to pay for anything of a medical nature but enough to help with clothing and feeding Shura. (Turning that sack of foreign money into dollars took an entire afternoon at Salts Bank, where foreign meant only Mexican -- everything had to be looked up in a book to ensure that the money was real.) A third member of Shura's family was his godmother, who had come to know me when I was lecturing in Krasnoyarsk. Ironically, she herself later developed cancer, and the doctors at the University of Virginia Hospital stepped in to take care of her, too.

Dr. Ronald Uscinski. Yes, the same doctor who played a vital role in the health and well-being of Noelle. Ron read Shura's x-rays and medical records originally and gave me guidance in how to proceed and what was needed medically. He then tirelessly filled out all the paperwork that the US Embassy in Moscow required to bring Shura to the USA three times. It seems that the embassy kept losing it. I had some doubts as to why the paperwork was getting lost, and the final time I noted that a copy of the fax was being sent to a resident of Moscow who could bring hard copy if needed. That took care of that. Hard copy was not needed. After examining Shura himself, Ron also stood by me and Shura when we made the decision not to repair the lipomyelomeningeocele for fear of causing greater damage, considering that Shura had already stabilized with the sac in place.

Julie Trudell. I first "met" Julie when she called me from UVA Hospital to tell me that she had tickets for Shura and me to come to UVA for Shura's surgery and a $500K for his care, all compliments of John Kluge. A mother of a son Shura's age, after our attempt at post-surgical follow-up from California (flying to appointments, instead of driving), she offered to take Shura into her house. Instantly, we had a triumvirate of motherhood: Siberian mother, Californian mother, Virginian mother. Early on, there was transcontinental, transatlantic communication among the three of us. Over time, Julie took on most of the late-teenage parenting. She and I have become like sisters over the past 15 years since that first phone call.

Dr. Vladimir Kryzhanovski. Vladimir simply appeared on the radar one day, telling us he had heard about a young Russian undergoing surgery at UVA. Vladimir was a cardiac surgeon on some type of exchange program at UVA Hospital, and he wanted to help. He was a ready interpreter in the beginning when Shura could not speak English. He inserted himself into the medical decision-making, e.g., insisting that the best kinds of prostheses, not the simplest (considered easier to maintain in Siberia), be made just in case Shura remained in the USA for a while (which he did -- 15 years). He spent hours talking to Shura about Russian and Ukrainian literature and other cultural phenomena, making sure that Shura never forgot his own culture (something he could do far better than I). Later, he helped Julie with parenting issues. (Oh, yes, Vladimir is still in Virginia.) My most vivid memory of Vladimir is the poignant picture of him walking beside Shura's gurney on the way to Shura's first surgery (the double amputation). I had to stop at the point that all parents have to say good-bye to their children, but Vladimir did not. He walked the rest of the way to the operating room with Shura.

John Kluge. Most of John Kluge's contribution is described above. I never met him. Shura never met him. He is now 94 years old and, the last we heard, suffering from cancer. I doubt that we will ever meet him, but Shura did paint a picture just for him. To give and not expect anything in return is true giving. The only requirement that John Kluge made of Shura was that the medical care was to be given at UVA and Shura followed by the Kluge Rehabilitation Center. You see, Mr. Kluge had given money to the hospital before and quite a bit of it. Mr. Kluge not only paid for the medical expenses, he also asked Dr. Gillenwater, who had just retired from the urology staff, to return for one purpose: to coordinate Shura's care. And then, to make sure that Shura was fully taken care of as time went on, he provided periodic money for clothes and painting supplies.

Shura's life has been full of miracles. The first was that he survived. A tethered cord, highly painful and if untreated highly damaging, typically accompanies a lipomyelomeningeocele. That was the second miracle; he has never had a tethered cord. The third miracle occurred when I happened to meet Shura's godmother in Krasnoyarsk and together set into place the series of events that would bring Shura to the USA at a time when the US Embassy was opposed to granting such visas. The fourth miracle was finding John Kluge as benefactor for we had no idea where to get the $50K upfront money that hospitals were requiring, let alone the $500K estimated total medical expenses (actual expenses have been nearly double that). Finding John Kluge was not easy: I had an address given to me my someone quite by chance from Charlottesville, Virginia, home of John Kluge -- except that was not his home; he lived in NYC. Nonetheless, the package and plea I sent to Charlottesville somehow found him in NYC within 72 hours of sending. The fifth miracle was the appearance of Vladimir in Shura's life -- who would have thought that there would be a visiting doctor from the Ukraine (in the former Soviet Union) just at a time when Shura needed translator, doctor-guide, and father figure in his life. The sixth and highly potent miracle was finding the overseer of the INS after a moleibin (Russian Orthodox prayer service) for Shura, a person who no longer attended that church, did not know about Shura's moleibin, and was 100% situated such that he could help with all visa and green card issues (and did); only later did we find out that this person was a convert who had been the recipient of a miracle himself (see Miracles in Real Life).

In the case of Shura, I often wondered, given all the miracles, anyway, why they did not happen faster. (Remember, I was still an atheist at the time, so I just considered it all serendipity, assuming that if there were a God, it would all have happened instantly.) Only now I understand. The journey was clearly more important than the destination. It was not the time for miracles that was needed. It was the time for people to see the miracles and to be part of them, the time to expand Shura's blessings beyond one young man to dozens of people worldwide.

Yes, indeed, Shura’s life has been full of miracles. Where there could have been great sadness, there has been great hope and joy. There has been only one stain on all of this: me. As an atheist at the time that all of this was taking place (Boy, could I make up excuses and shaky explanations for the series of miracles that rolled out before my very own eyes!), I set a poor role model for Shura, and I was, for him, a role model. As a result, he chose to abandon his faith for my atheism. There was logic, in both our minds at the time, for his choice. I was the one, in his mind, who had pulled him from Siberia and saved his life. He really did not understand that I was only the conduit that God chose and that God could have chosen another. Why would God send a strong believer to an atheist or allow that atheist to discourage the faith of His believer? That question, I suspect, will never be answered. I don’t really need an answer. I am just trying, somewhat unsuccessfully, to deal with the regret. (It is one of those situations where we know that God forgives us but we find it difficult to forgive ourselves – at least, that’s the way it works for me.) Shura knows of my conversion, and that has puzzled him. Perhaps there is hope for a reversion for him. (Please pray for that.) More important, now that Shura has returned to Russia, where care is at last sufficient for him, he will be living near his parents. I imagine that once again his real mother will take care of his faith.

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