Mother’s Day

A Mother’s Day Reflection

While flower gifs and happy photos abound today on Mother’s Day, and hemophilia moms wish one another a happy day, a couple of thoughtful mothers on Facebook remind us with kind words that it’s not that kind of celebratory day for many mothers. There are mothers who have lost their children to hemophilia, or HIV; some to suicide. I know one mother who lost her young man with a bleeding disorder in the Thousand Oaks mass shooting in California. And there is just the loss of babyhood… our children have grown up, moved away, no longer “need” us. Loss is loss.

I recall this wonderful essay from years ago, from Anna Quindlen, Newsweek columnist and author. It’s a great essay to remind us to enjoy the journey while we can. Tomorrow may be too late. And it’s never too late to enjoy now!

Anna Quindlen, from Loud and Clear, Ballantine Books; Reprint edition, March 29, 2005.

“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.”

Mother’s Day Thought: Sacrifice

Today while attending church with my mother and family, I heard the priest give a homily about what mothers sacrifice in raising children. It starts before mothers raise children, with pregnancy and birth. We give up so much freedom: freedom from having our youthful body, from worry-free nights, and with hemophilia-moms, freedom from worry about our child’s future. Sacrifices of time, money, of the heart. Love is a risk. The biggest risk ever.

Some of the greatest mothers you can ever imagine are those of children with chronic disorders, especially those who live in developing countries. Today, while walking Oslo-dog, I remembered a most remarkable mom of a son with hemophilia. She lived in Nepal.

Sanu Maiya Kapali

Nepal is Save One Life’s second partner country. I had first visited Nepal in 1999 and 2000, and saw the dedication and hard work of the then newly born Nepal Hemophilia Society. I believed in the staff, and trusted them. My gut instinct proved correct: they have implemented the program to perfection.

My third visit was just six months after the devastating earthquake of April 25, 2015. I was curious to know how it affected them; what had happened. I wanted to hear their story and assess their needs. On Saturday, April 25, at noon, the tectonic plates under the Himalaya shifted, triggering a massive earthquake registering 7.9 on the Richter scale. For 50 some minutes—an eternity for an earthquake—homes crumbled, buildings collapsed, people were crushed.

More than 9,000 people were killed, and more than 23,000 injured. Continued aftershocks occurred throughout Nepal at intervals of 15–20 minutes, with one shock reaching a magnitude of 6.7 on 26 April.

Eventually everyone, including hemophilia families, lived in tents supplied by the government and relief agencies for months. More than three-quarters of the buildings in Nepal’s capital, Kathmandu, were uninhabitable or unsafe. There were 15 other earthquakes, and a recorded 386 aftershocks as of September 2, 2015, including one during my visit, that very night.

The tally of destruction of the hemophilia community was sobering: out of their known 500 members, 63 homes collapsed. Two mothers dead. One eight-year-old sister dead.

The story that saddened them and me the most was of Sanu Maiya Kapali, mother of a child with hemophilia. Sanu had volunteered at NHS for 10 years, at the care center, helping the children, and consoling the young men in pain.

She was a mother-figure to all.

She was conducting a blood donation camp at a hospital. Blood donations are often done right on the sidewalks, in front of hospitals. This sounds unsanitary and unsafe, but it’s fast and works for advertising as the hospitals are typically clogged with patients, doctors and visitors—all walking by the beds and blood collecting operations. Sanu was outside, collecting blood to help boost the supply of plasma and cryo for the blood bank. Huge slabs of concrete fell from the building during the earthquake. She was killed instantly from falling rubble, along with the two donors she was ministering to. Her photo shows a beautiful woman with a flawless porcelain complexion, dignified smile, gleaming white teeth, arched eyebrows. Aristocratic, kind. She left behind two children, one with hemophilia. Everyone knew her, and her death seems to have left a gaping hole in the strong spirit of the NHS. It was the ultimate motherly sacrifice.

Hemophilia family home destroyed

It was Nepal’s second more devastating earthquake in 100 years. Barun confirmed: “You’re the first person from the hemophilia community to visit Nepal. Thank you.”

My small sacrifice in visiting meant a lot to them, but paled in comparison to Sanu. She is a profile in courage and sacrifice, something to think about this Mother’s Day.

Help for hemophilia in Nepal eventually arrived: a factor donation from the WFH, Sweden and Project SHARE. The Mary Gooley Center (twinned with the Bir Hospital) donated $45,000, and Save One Life raised about $15,000, mostly though Facebook.

A Mother’s Journey

Today is Mother’s Day, a special day for mothers of children with chronic disorders, like hemophilia. The sacrifices and suffering they endure creates women of strength and compassion, and they deserve to be celebrated. Me? I was treated to “The Avengers” by my three children, with an extra large popcorn and soda. Perfect way to celebrate!

And a perfect book to read this week is Journey, by Robert K. and Suzanne Massie, first published in 1973. The intimate story of a young couple facing the diagnosis of hemophilia in their infant son, Journey has become a classic in hemophilia. It is, arguably, the first book written about hemophilia. It slowly unveiled the suffering and disruption hemophilia causes, and what life with hemophilia was like before the advent of clotting factor. The story is written in alternating chapters by Robert and then Suzanne. They each have distinctive styles. Robert shares the history of hemophilia, the genetics, the science behind it and the treatment. He also delves into the blood banking industry, and the shocking policies and politics of blood. Suzanne shares the family’s story, day to day, and the exquisite pain a mother experiences while watching her son suffer through the night.

But these are not ordinary parents. Robert K. Massie is a Pulitzer prize winning author, and having a son with hemophilia and being a writer at Newsweek, led him to research and eventually write Nicolas and Alexandra, the captivating masterpiece about the last Tsar of Russia, whose son also had hemophilia. It reads at once like a great historical novel, highlighting the tragic love story between the two royals, and postulates how hemophilia might have contributed to the downfall of the empire and the take-over by the Bolsheviks. Suzanne helped research and edit the book extensively, and in time, became an expert on Russian culture and history. The family gained notoriety when the book was published and then made into a Hollywood movie.

The story concludes when their son Bobby is 18. Later editions included an update: Bobby survived, contracted HIV and hepatitis C, attended Ivy Leagues colleges and became an Episcopalian minister. He also became a social activist (most notably against South Africa’s apartheid system) and a politician, running for Lieutenant Governor of Massachusetts, and later, the US Senate. He has dedicated his life to public service and has accomplished so much.
Suzanne, his mother, became an author in her own right, on Russia, and later became President Ronald Regan’s advisor on Russia during the Cold War! She could never have seen where her journey as a young mother of a child with hemophilia could have taken her.
As mothers of children with hemophilia, we know the limitations our sons can sometimes face. Reading Journey makes you appreciate what is possible, how much we as women can endure as mothers, and gives hope that despite the suffering, crippling, hospitalizations, pain and days or weeks lost from school or work, all things are possible. Suzanne is an extraordinary mother who raised an extraordinary son. 
I am very proud to say that we will be honoring this mother and her son at our second annual spring gala for Save One Life this Thursday in Topsfield, Massachusetts. This is another story to add to their journey. Suzanne is now 81, lives in Maine, and is still writing! Bob has just published his memories (which I will review in a future blog) and Suzanne hopes to publish her story on being Regan’s advisor.  It is an honor to know this mother and to celebrate her life and accomplishments on Thursday.
Happy Mother’s Day to all those with children with hemophilia!
You can order used copies of Journey through Amazon.com; the book is out of print and new copies are not available.

For Mothers of Children with Hemophilia

Mother and child

 

Here in America it’s Mother’s Day, and I’ve been enjoying the good wishes that have been emailed to me from friends in hemophilia around the globe. I received a great gift: my luggage! It went missing for three days following my return from Africa a few days ago. 

My trip to Kenya was wonderful, full of rugged rides into the countryside to visit the mothers and sons, families with hemophilia. In Kenya, as in most developing countries I have studied, it’s often the mothers who are the primary caretakers of those with hemophilia. Actually, it’s true of any country I have studied. For whatever reason, culture, biology or psychology, mothers are deeply connected to their sons with hemophilia. They also become the primary advocates, and often the hemophilia leaders in their communities, and sadly, the self-promoted whipping post for when things go wrong.

I thought about our roles as mothers while in Morocco. I landed there a week ago, around midnight, and promptly started feeling grinding pain of some sort of parasite. Lovely. I missed most of Morocco, though I was there for three days. At least one thing was very memorable: a visit from a young man with hemophilia, Mohammad.

He traveled four hours by train to see me, and to pick up a donation of factor I had for him. We sat and chatted for over an hour, and shared green tea, which was delicious and strong. Mohammad is soft-spoken, respectful, and highly intelligent. He speaks three languages fluently, and studied physics but had to drop out of the PhD program when he missed two months of school due to a psoas bleed. Actually, he only mentioned “a bleed,” and when I think of what bleed could possibly keep you out of school that long, I knew it was a psoas bleed. A knee bleed you can hobble around on crutches; an elbow bleed, you can still walk. Shoulder bleeds are terribly painful, but again, you can walk. A psoas bleed means you cannot move. So he laid in bed for two months, trying not to move, with no factor. His professor thought he was lazy or lying, and no longer allowed him in the program.

Mohammad is the first in his family with hemophilia. He was diagnosed at age 2. His father was a miner, now retired. His mother never worked. At age 12 he had his first factor infusion… and then nothing until Project SHARE sent him his second infusion one month ago.

Mohammad was having an elbow bleed as we spoke. I thought maybe he should take a dose of the 14,000 IUs I brought him, but no; he would tough it out. “This will last me about a year,” he said smiling, holding the bag of factor.

Such simple gratitude, for an amount of factor that would last us two months, and the average adult US patient on prophy with hemophilia a week.

I thought of his mother today. What it must be like to see your only son suffer so much, giving up his academic dreams, knowing how intelligent he is, being able to do nothing to control his pain. So many young men with hemophilia are stoic, because for them the pain of seeing their empathic mothers suffer is greater than the pain of the bleed. They learn to mask it. Indeed, Mohammad was limping but hid it well, from many years of practice. I wondered if his mother was as stoic? She has done a marvelous job, because despite the odds, he has survived, without complaint, without bitterness, and with so much respect for his parents.

This Mother’s Day we can think of all those mothers worldwide who suffer so much when their child has no medicine, like those in most countries of Africa. We can honor them today as heroes, empathic fountains of love and strength for their children, and soldiers in the war against poverty and pain when there is no factor.

Great Book I Just Read
The Africans by David Lamb
This in-depth and comprehensive book about the Dark Continent was banned in several African countries when it was published, for its no-holds-barred look at the culture, politics, history and development of Africa. Lamb spent four years traversing the continent, speaking with people on the streets as well as presidents. Lamb successfully weaves fascinating stories in with geopolitics and economics: this is no travelogue. It’s a serious piece of journalism that mostly leaves his own story out, and focuses on the subject. Skillfully told, you will admire the resilience of the African people, who have survived the Arab slave trade, the invasion of colonialists, the dividing up of their continent by Europeans, their own tribalism which eats at them like a cancer, idealogical battles about Marxism vs democracy, and lastly, their own corrupt leaders. You admire the Africans, and pity what they have endured, and come away fascinated with the complexities of this amazingly beautiful land and its beautiful people. Published in the 1980s, it does stand the test of time, but you’ll need to read more about Africa to get caught up, as much has happened in the 20 years this was written–both positive and negative. Four stars.

Mother’s Day Words of Wisdom

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 have I learned in 20 years of mothering and having a child development degree on top of it, studying children, and enjoying other people’s children? 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 daughters, 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 off 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 intrigue, 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.

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