Letter to school re: coronavirus

This week we, like many other families, have taken our children out of school. While in much of  Europe schools have been closed for more than a week, the British government has been slow to act -- which has put families who are concerned about the spread of the coronavirus in a difficult position. 

I copy here the email I wrote to the principal of Asa's school on Monday, which lays out why we feel withdrawing children from school is the right thing to do.

Dear Principal,

Thank you for your letter of yesterday clarifying the school’s position regarding the CoViD-19 outbreak. I’m aware that in keeping our son home yesterday, my family is in breach of the school’s instructions — and we may be in breach of the law. I would like to take this opportunity to explain why we are doing this. There are three reasons, and they have to do with our responsibilities to our children, to the school, and to the wider community.

The first reason is that we are concerned about Asa being exposed to the virus at school. It is possible that the virus is circulating among students already, even if few are showing symptoms. in the absence of testing, we can only speculate. It is our duty as parents to be cautious and to act in his interest. 

The second reason is that Asa might expose others in the school to the virus. Currently his mother and his 3-year-old sister have respiratory infections. We pray that their symptoms are due to common colds, but were they in fact carrying CoViD-19, then Asa would inevitably be exposed too, and if he were to attend school he could transmit it to his classmates. In keeping him home under these circumstances, we feel we are acting in the best interest of the school.

The third reason is that we are concerned about the implications for the wider community. We would like to minimise the risk both of transmitting the virus to others, and of taking medical resources from those who need it more. The connection between non-attendance at school and this set of concerns is more indirect, but it is no less real.

My employer, Durham University, has suspended all face-to-face teaching this week on the grounds that large gatherings of students in classrooms and cafeterias provide ideal conditions for the virus to spread. The young people who make up the majority of the student body are not at high risk of complications if they contract the virus — they are for the most part fit and healthy; they have fairly robust immune systems. Were many of them to become infected, however (as is inevitable if business-as-usual were to continue) they would require medical help, and this would place additional strain on the local health services at the same time as they are needed by other members of our community — the elderly and infirm — who are equally at risk of contracting the virus and at much higher risk of dying from it. 

The same set of issues is relevant for schools. School-children themselves are not at high risk of complications from the virus, but if they had breathing difficulties they would compete for attention from our health services with the more frail. It follows that by keeping children home from school, whether or not they or their immediate family already show signs of infection, we are acting in the interest of the wider community. 

Asa  was  reluctant to stay away from school yesterday. He misses his friends. In the coming days and weeks I hope we may find ways to practice social distancing without social isolation — and to protect our families and our communities from the danger the epidemic poses, without sacrificing other things that matter.

Instead of a blanket instruction for children without symptoms to continue to attend school until further notice, I  encourage the school to support those families who choose to practice social distancing.

Yours sincerely,

J.S.

  

 

New worlds

ISLANDIA lies off the east coast of Africa, near Madagascar. Tourists visit the island to stroll in its forests and periwinkle meadows, and to watch games in the Olympic stadium and sports complex. The country’s main export are periwinkle flowers — both the raw petals and, in processed form, the chemotherapy drug carboplatin. They also manufacture high-speed trains for Japan.

This is part of a dream of Asa’s, inspired by a book called Weslandia, which he read at school last year. The idea of different worlds appeals to him.

In the past year our world has changed. In the summer we moved from London to Durham, trading a flat in a big city for a townhouse in a small one.

There’s also another change that has occurred more gradually but which deserves to be celebrated. Asa is now almost 4 years post-treatment. The tumours in his eyes have been in remission since he was 5. He’s under observation at a hospital in Newcastle, with an appointment every 6 months.

Since we moved North, Asa has adapted to a new school and circle of friends. He’s still into cars, but less into football, and more into computers.

He turns 9 this week.

Afterlife

Spring. Bulbs and buds burst into flower. Things come back to life.

Ayya's namesake Anne was born in Spring, in Nashville, Tennessee, on March 25^th (also known as Lady Day, or the Annunciation), the day when people in Medieval Europe thought the world began.

Anne with her mother, Jessie (Kay) Stevenson (nee Keller)

What threads connect Anne to Ayya? What affinities, beyond a name, and a fraction of shared genetic material?

As a young woman, Anne lived in Africa for five years. She had just married a Frenchman, Jean-Paul, and accompanied him to Cameroon, where he was to work as a teacher in lieu of military service. She was a new mother at the time (she carried my cousin Miriam with her), and it was there that she gave birth to her second child, Eric.

One of my favourite works of anthropology is a study of infancy in West Africa. Among the Beng of Cote d’Ivoire, children are understood to come from the Afterlife. In their way of thinking, people’s spirits enter a sort of limbo when they die. When babies are born, they gain passage back into life. Babies are welcomed home, cared for and venerated partly because they are recognized as the reincarnations of dead ancestors. [1]

Ayya on blanket from Cameroon, given to my parents by Anne & Jean-Paul

There’s truth in the Beng way of thinking, because in a real sense children are the reincarnations of ancestors. Scrolling through Anne’s Facebook-feed for photos to illustrate this blog post, I sometimes had the strange feeling of not knowing whether it was Miriam or her mom I was looking at. Sometimes I get myself and my cousin Eric confused.

 

OK not in this photo. Definitely Anne with a dog.

“Ticky-tacky, wicky-wacky stuff”

Anne died six years ago, shortly before Asa was born. My step-dad Clive died last year, shortly before Ayya was born.

Neither of them were religious in a conventional sense: Anne subscribed to no particular system of belief; Clive was an atheist. But I believe both of them were comforted by the knowledge that family and friends survived them.

Not long before she died, Anne mused on what death meant for her. "Well, you know," she said, "where I'm going, I don't think it's going to be very far.... Not that I believe in all that ticky-tacky-wicky-wacky stuff.... But I just don't think I'm going to be very far."

 Photograph by Nikki Rudzik

There's comfort in the thought that, even after death, loved ones are still with us. And sometimes there's truth in it.

Reference

[1] Alma Gottlieb.The Afterlife Is Where We Come From. Chicago University Press (2004). There are some video clips here that accompany the book.

Cataract / VI

At about 4 o’clock this afternoon, Asa came around after being under anaesthetic for a cataract operation. It was the first time he’d had surgery – indeed, anything but routine eye exams – for more than a year.

Selam and I felt more anxious than we’d expected to be about this operation. It brought back memories of difficult times. Times – there had been dozens of them – when we waited, with a mixture of fear and hope, for news of how the procedure had gone. There had been a few times when we’d felt we we were close to losing him – like that time when he was on second-line chemo, and I was in Congo, and Selam told me over the phone that his Hickman line was infected. Or that time, during the third course of chemotherapy, when he went into anaphylactic shock.

Compared to those occasions, this cataract operation was low-risk. And, thank goodness, it went smoothly.

As Asa gradually regained consciousness, he put his fingers to the plastic shield taped over his right eye to protect it. Selam sat at the foot of the bed, with one hand on Asa’s leg; every now and then she reached over to the pram in which baby Ayya lay, and rocked her.

“I want to take it off,” Asa said.

“Not yet,” Selam said. “Tomorrow morning, when the doctor’s checked your eye.”  

Visual Impairment

Within the last few weeks Asa has for the first time started to talk confidently about how he sees, and to acknowledge that he is visually impaired. For years we tiptoed around the topic. We wanted him to enjoy childhood like any other boy. His certification (Severely Visually Impaired) ensured he got extra help in nursery and primary school, but we didn’t want him to feel labelled. To feel deficient.

Now that he’s had a few years of special treatment – Braille lessons, homework assignments printed in larger font than the other children get, and experience with a variety of visual aids like magnifying glasses – he recognizes that he’s different.

What impresses us most of all is that he doesn’t complain. He speaks of it matter-of-factly.

 

When Asa gets up from the hospital bed, he asks us to tie a blindfold partway round his head to keep light from the sensitive eye. We walk back to the hotel where we’ll spend the night before the post-op check in the morning.

The promise of the cataract operation is that Asa will see better out of his right eye. Not necessarily better than he did before the cataract developed, but better than he has for the last few months. More importantly, it improves the view the doctors get of the back of his eye when they examine him, so they can keep tabs on the tumours on his retina.

In the hotel room, Asa spreads out his Lego on the carpet. And, in that special way of children at play, he seems to forget about everything else in the world.

Rebirth

Six years ago, I wrote the first post on this blog, in anticipation of the arrival of our son, Asa.

In addition to the excitement of impending fatherhood, I was inspired by two members of my family who’d blogged.

Seth, a cousin, had written a blog about his son Tofu. When Seth died midway through Tofu’s second year of life, the blog became a sort of message in a bottle, a testament of his love for his child. 

The other inspiration was my aunt Anne. Her blog helped her friends and family – spread quite widely across the world – stay informed about her battle with cancer.

This month we welcomed into our family a baby girl, whom we’ve named after Anne.

Anne (nickname Ayya) at 3 weeks old, on Christmas Day

At birth baby Anne weighed in at just over 3 kilos (6 lb, 7 oz). She's a small package. But she changes the balance of our family, shifts the fulcrum. From being two adults and a child (adults holding the majority), we now have equal representation from children.

Asa and I, as males, are preparing ourselves for the impacts of a second female in the house.

Resolution

She also represents a challenge for this blog, which began as a vehicle for my wonder at Asa’s presence in the world. The blog then morphed into a kind of cancer diary; and hasn’t known quite what to do with itself since.

I’m way overdue, for example, in relating the transition we’ve made from the days when Asa was in hospital every 3 weeks, and getting treated every time … to the current regime of 2-monthly exams, the purpose of which is mainly to check we’re still in remission. It’s a very different place.

Maybe it would have been a challenge to keep the blog going anyhow. As children move from toddlerhood to school age ... life gets complicated. At least it did for us. 

Then again, we've only ever done this once.

But -- Anne, here I'm talking to you -- we feel you've arrived at a good time. Asa and the rest of us are ready to do our kindred duties.

As part of mine (I must admit the more practical matters rest largely on Selam’s shoulders) I want to enlarge and revive this blog.

Just as you are enlarging our family, and giving us new life.

Happy new year / Melkam addis amet

Trains

Maybe it's all the to-and-fro'ing we've done on the trains between London and Birmingham for his eye exams, or maybe it's due to some kind of innate fascination with large moving things, but Asa loves trains.

I post these drawings of his partly to cheer myself up. It's been a pretty rough week, watching the US elect a con man as President.

Asa is an American citizen, and in 13 years time he'll be eligible to vote. I'm grateful that he's healthy, and that he stands an excellent chance of living a full life. But I worry about the world that he and his generation will inherit.

Let us pray for wisdom in our leaders, and for strength and resolve for those who resist them in the cause of the greater good.

Further update

Last week Asa’s medical exam again yielded an all-clear: No tumour activity; no treatment needed.

That’s the second time in a row.

Yee-ha!

In other news: Asa has now lost two of his baby teeth (and is 40-pence richer).

Asa minus his first deciduous tooth

We are kicking back and listening to some music...*

wearing jazz specs.

* This link takes you to a list of tunes we're listening to at the moment -- on Jed's blog.