Sunday, May 25, 2008
Kiss Laszlo lives in Romania. He's the father of Daniel, who has severe hemophilia A. I've been to Romania twice-- a beautiful, pastoral country, with rolling mountains and quaint villages. I've visited with the hemophilia patients and doctors, and helped out with hemophilia camp in 2006 on the Black Sea. We donate quite a bit of factor to Romania. Only recently has the government begin to buy substantial amounts of factor for its people. A lot of patients, despite the excellent medical care from its wonderful doctors, are crippled. You just have to have factor to keep joints in good shape.
Kiss knows this and knows we need to raise awareness of hemophilia needs. He came up with a brilliant idea-- to bike all the way from Romania to Istanbul, where the World Federation of Hemophilia starts its biannual Congress next Sunday. "I decided to do this trip not only for my son, but for the whole hemophilia community. I shall do 1089km in 14 days," he pledges on his blog, which you can (and should) read at
Kiss is blogging along the whole journey! You can read about his exploits right now. "During my trip I shall stop in each important town, no matter if it’s Romanian, Bulgarian or Turkish. There I shall meet the local hemophilia associations and the local media too. Once arrived there in the name of our association I want to get in contact with other similar organizations to build common actions and develop a partner relationship over the medium to long term."
What a wonderful idea and what devotion! I cannot wait to meet him. I will be off to Istanbul myself on Friday, and will also be blogging about my trip. Please tune in and see what is happening in the world of hemophilia.
(Photo: Kiss, in red, surrounded by members of the Romania Hemophilia Association)
Sunday, May 18, 2008
I just read this amazing account while catching up on my current events. I was so moved by this one woman, I'd like to share what was written about her with my readers:
From the Chicago Tribune:
She was an only child whose parents raised her to care about those in need, no matter what the personal cost. "I was taught that if you see a person drowning, you must jump into the water to save them, whether you can swim or not." That's what Irena Sendler said, who died this past week at age 98. A most courageous and remarkable woman, she was a nurse and social worker during the time of the Nazi occupation, in Warsaw, Poland.
In 1940, after the Nazis herded Jews into the ghetto and built a wall separating it from the rest of Warsaw, disease, especially typhoid, ran rampant. Social workers were not allowed inside the ghetto, but imagining "the horror of life behind the walls," Sendler obtained fake identification and passed herself off as a sanitary worker, allowed to bring in food, clothes, and medicine.
Then, as persecution of the Jews heightened, this diminutive, not-quite-5-foot-tall woman, began smuggling Jewish children out of the ghetto saving them from certain death. Along with her friends in the resistance they smuggled children out in trashcans, boxes, suitcases, sacks, tool chests, ambulances and coffins. Even though she managed to place them in safe homes with new "safe" names, instead of forgetting their names she kept a record of their true names so that after the war, if at all possible, they could be reunited with their own families. Sadly, many of course, never were since their families perished in the crematoriums.
In 1943 Irene was captured by the Nazis and brutally tortured. In one session alone her captors broke her feet and legs. Even still, her spirit and determination to guard others did not break and she never betrayed a single soul-- either the names of those in the resistance with her, or the names of those whom they had rescued. Eventually an SS guard, greedy for money, took a bribe from her resistance friends and she escaped. Of her time in jail, undergoing deprivation and torture, she said she endured it by focusing on a little card she secretly kept with her. A card revealing her motivation and source of power. A card with these words: "Jesus I trust in Thee." A card she kept till 1979 when she gave it to Pope John Paul II.
All in all, a total of 3000 Polish Jews, including 2500 children, were saved through her determined efforts. Just last year she was finally honored by the Polish Senate and nominated for the Nobel Peace Prize, which brought dozens of reporters to her door. She told one of them she was weary of the attention, adding, "Every child saved with my help is the justification of my existence on this earth, and not a title to glory."
And while this blog entry has nothing to do directly with hemophilia, we should know we do not have to be Nobel Peace Prize nominees, or even have to have saved thousands to make a difference in this life. Just ask yourself: what am I doing to help one child in need? I asked that in 1994, during the Rwanda crisis, and today chair a nonprofit I created called Save One Life, to help children with hemophilia in developing countries. If you want to help one child with hemophilia get out of poverty, please visit our website at www.SaveOneLifeInc.org.
Great Book I am Reading: The Hiding Place by Corrie Ten Boom
Coincidentally, I am reading a wonderful book about Corrie Ten Boom, a Dutch woman during the Nazi occupation who helps Jewish refugees hide and then escape, by turning her home into a hiding place. Corrie, her sister Betsy and their father are eventually caught and sent to a prison, then a concentration camp. Her father dies soon after, and her sister dies only two weeks before she is released. Her suffering is immense, but her faith in God greater. The book is a testament to her faith, which permeates everything that happens to her. With her profound faith, many prisoners and even jaded guards are converted to Christianity. After reading this, you may never want to complain about anything again! I also rented the movie The Hiding Place, which faithfully follows the book. The juxtaposition of the warm home life and the stark brutality of the prison and concentration camp are jarring and shocking. Corrie survived and for the rest of her life, well into her eighties, traveled the earth to tell her story and speak her faith. Four out of four stars.
Sunday, May 11, 2008
I celebrated Mother's Day with my children last night, attending an incredible show in Boston by world famous illusionist David Copperfield (don't miss him if he comes to your city!). But as impressive as he is, nothing can be more magical than witnessing the growth of children. And what I have I learned in 20 years of mothering and having a child development degree on top of it, and studying children, and enjoying other people's children as my own (I have a pseudo son and psuedo daughter I love to include on our family outings)? We can open doors for our children, educate them, love them unconditionally, push them, encourage them, and hope... but in the end, I truly think they will be who they are destined to be from birth. Perhaps we mold them and provide a safety net, but the basic form is already there, and emerges through our patient care and frequent polishing. I think Anna Quindlen has written the greatest words of wisdom on mothering, and I share this with all the hemophilia moms who fret and worry about their sons, and duaghters, and how their disorder might affect them. Maybe we can all relax a bit more upon reflection:
"All my babies are gone now. I say this not in sorrow but in disbelief. I take great satisfaction in what I have today: three almost-adults, two taller than I am, and one closing in fast. Three people who read the same books I do and have learned not to be afraid of disagreeing with me in their opinion of them, who sometimes tell vulgar jokes that make me laugh until I choke and cry, who need razor blades and shower gel and privacy, who want to keep their doors closed more than I like. Who, miraculously, go to the bathroom, zip up their jackets and move food from plate to mouth all by themselves. Like the trick soap I bought for the bathroom with a rubber ducky at its center, the baby is buried deep within each, barely discernible except through the unreliable haze of the past.
"Everything in all the books I once poured over is finished for me now. Penelope Leach, T. Berry Brazelton, Dr. Spock. The ones on sibling rivalry and sleeping through the night and early-childhood education, have all grown obsolete. Along with Goodnight Moon and Where the Wild Things Are, they are battered, spotted, well used. But I suspect that if you flipped the pages dust would rise like memories. What those books taught me, finally, and what the women on the playground taught me, and the well-meaning relations--what they taught me, was that they couldn't really teach me very much at all.
"Raising children is presented at first as a true-false test, then becomes multiple choice, until finally, far along, you realize that it is an endless essay. No one knows anything. One child responds well to positive reinforcement, another can be managed only with a stern voice and a timeout. One child is toilet trained at 3, his sibling at 2.
"When my first child was born, parents were told to put baby to bed on his belly so that he would not choke on his own spit-up. By the time my last arrived, babies were put down on their backs because of research on sudden infant death syndrome. To a new parent this ever-shifting certainty is terrifying, and then soothing. Eventually you must learn to trust yourself. Eventually the research will follow. I remember 15 years ago poring over one of Dr. Brazelton's wonderful books on child development, in which he describes three different sorts of infants: average, quiet, and active. I was looking for a sub-quiet codicil for an 18-month old who did not walk. Was there something wrong with his fat little legs? Was there something wrong with his tiny little mind? Was he developmentally delayed, physically challenged? Was I insane? Last year he went to China. Next year he goes to college. He can talk just fine. He can walk, too.
"Every part of raising children is humbling, too. Believe me, mistakes were made. They have all been enshrined in the, 'Remember-When- Mom-Did Hall of Fame.' The outbursts, the temper tantrums, the bad language, mine, not theirs. The times the baby fell off the bed. The times I arrived late for preschool pickup. The nightmare sleepover. The horrible summer camp. The day when the youngest came barreling out of the classroom with a 98 on her geography test, and I responded, "What did you get wrong?" (She insisted I include that.) The time I ordered food at the McDonald's drive-through speaker and then drove away without picking it up from the window. (They all insisted I include that.) I did not allow them to watch the Simpsons for the first two seasons. What was I thinking?
"But the biggest mistake I made is the one that most of us make while doing this. I did not live in the moment enough. This is particularly clear now that the moment is gone, captured only in photographs. There is one picture of the three of them, sitting in the grass on a quilt in the shadow of the swing set on a summer day, ages 6, 4 and 1. And I wish I could remember what we ate, and what we talked about, and how they sounded, and how they looked when they slept that night.
"I wish I had not been in such a hurry to get on to the next thing: dinner, bath, book, bed. I wish I had treasured the doing a little more and the getting it done a little less.
"Even today I'm not sure what worked and what didn't, what was me and what was simply life. When they were very small, I suppose I thought someday they would become who they were because of what I'd done. Now I suspect they simply grew into their true selves because they demanded in a thousand ways that I back off and let them be. The books said to be relaxed and I was often tense, matter-of-fact and I was sometimes over the top. And look how it all turned out. I wound up with the three people I like best in the world, who have done more than anyone to excavate my essential humanity. That's what the books never told me. I was bound and determined to learn from the experts. It just took me a while to figure out who the experts were."
---From Anna Quindlen, Newsweek Columnist and Author
Great Book I Just Read: Longitude by Dava Sobel
A horrific disaster at sea of the coast of England in 1707 sinks four English ships laden with merchandise and drowns 2,000 men. The cause? Miscalculation of the whereabouts of the coast and its islands due to inability to discern longitude. Thus sets the race to find a way to reliably calculate longitude, which obsesses England for 60 years. This is a remarkable story of brilliant men of vision--and stubborn men who cling to their outmoded theories--and the quest for a chronometer, the perfect timepiece that will keep the home port time despite tropical heat, and polar cold, despite rolling seas and far away destinations. It's the story of the watch, told as you could never expect it, with intrique, determination, and fiery opposition to conventional wisdom. It's said that the final prize, John Harrison's H-4, helped create the British Empire by giving her control of the seas... by accurately determining longitude. A small book packed with excitement and facts about our natural world and 18th century England-- a must read! Four stars out of four.
Monday, May 05, 2008
We finished up the latest issue of PEN, and for the feature I focused on branding and advertising by the pharmaceutical industry. While researching this topic, the importance of company and product names kept coming up. What a company calls itself or its products is extremely important for recognition. The new product "Xyntha" by Wyeth is causing a minor stir due in part to its very unusual and interesting name.
One suffix I encountered and was curious about was "Rx." We all now it means "prescription" but why? In our household we love words and love knowing the origins of words. Rx is used in the company names BioRx, PrecisionRx, and Med Pro Rx... all related to hemophilia services.
According to the book Who Put the Butter in Butterfly? "R" is the symbol of the Roman god Jupiter, the patron of medicines. Rx is also an abbreviation of "recipe," from the Latin recipere, to receive. R appeared on top of all prescriptions, denoting "to take": directions then followed. Even the English word recipe originally referred to medical prescriptions. Over time the word was also used for cooking--not unusual, as many of the same herbs and spices in cooking were being used in prescriptions at the time! I guess flavored medicine has been a round longer than we think!
Great Book I Just Read: Ultramarathon Man, by Dean Karnazes. After meeting with Steve Petty two weeks ago, just before he ran the Boston Marathon (and did very well!), I was inspired to read this marvelous book again. Dean Karnazes tells the story of how he came to be one of the top ultramarathoners, those obsessive runners who think nothing of running 15 miles to a marathon as a warm up and then run the marathon, and then "relax" by going windsurfing all afternoon! His story is amazing: running in 120 degree heat for 100 miles, shoes melting; running 199 miles, without stopping, to raise money for a dying girl's treatment; running a marathon to the South Pole! This is a quick read, and may do for you what it did for me: inspire one to get up and get moving! Dean makes you feel as though nothing is impossible. As much as he has accomplished so much, he tells his tale plainly and humbly. I hear he is a very nice guy. After all, he "let" Steve beat him in a race a few years ago! (Just kidding Steve!) Four stars.
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