15 March 2006


My 'net mate' from 20six, Al from The Alan Benefit Diaries (which you should definitely read if you appreciate fine writing talent - and start from >>the beginning) turned me on to this link from the Independent on the impact the internet has on people going through soul-shattering trials and crises. In this article, the writer gains solace from a group of parents experiencing the same ordeal with their children; however, the premise this story is based on applies and is pertinent to many different situations an individual goes through in this life. Whereas formerly we might have viewed ourselves as lost and lonely in a universe of indifference, the net has the tendency to globalise our experience and prove to us that we are not alone and that we don't have to suffer by ourselves.

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Click to view - Map of the Internet from The Opte Project

Internet 'families' provide support for parents with sick children

By Niki Shisler
14 March 2006
The Independent

Sometimes, when you're least expecting it, life throws you a curve-ball. A little under eight years ago, after a period of peaceful stability, my own life somersaulted into chaos. I had been in recovery from alcoholism for a couple of years and, after great effort, had finally got my life back on to an even keel. My son Joey was 11; I was newly married to my soulmate, Danny; we had bought our first house together and, best of all, I had a new daughter, Evie, who was turning out to be a dream baby. My alcoholic rock bottom had been as grim as these things usually are, so having turned my life around so spectacularly felt like a real achievement. After years of misery and darkness I was, at last, standing in the sunlight.

Then, with Evie just three months old, I fell pregnant again - this time with twins. It is safe to say that the idea of having three babies in a year didn't exactly fill me with delight. Suddenly this perfect little life that I'd struggled so hard to build was in danger of being shattered. I was still locked into the intense love affair with Evie that a mother has with her newborn; these two new babies felt like intruders, stealing me away from their sister before either of us was ready.

As the weeks passed I became increasingly alarmed by this sudden expansion of my family. How would my body cope? How would I be able to go out alone with three babies? Did they even make triple buggies? I worried about our finances, and I worried that my sweet little Evie would be permanently scarred by the inevitable battle for attention with her siblings. No matter how hard I tried to remain positive, nothing seemed to help.

In the end it was Danny who found the solution. He went online and signed me up for a support group, Twins List. That night, I sat and poured all the weight in my heart out into the ether.

I don't know what I expected the result to be, but I woke to find dozens of e-mails from women all around the world telling me that they understood. I was astonished; letter after letter recounted experiences that paralleled my own. I learnt that my fears, misgivings, guilt and even anger were " normal"; even some of those who had conceived after years of heartbreaking fertility treatment found themselves shocked by a wave of negative feelings. Most importantly, each letter, without exception, promised me that these fears would pass; and that, by the time my babies were born, I would be more than ready to love them.

I soon slipped into the daily banter of the group. Virtual communities are similar to physical ones in many ways; they have in-crowds and popularity queens, wise "elders", try-hards, eccentrics and clowns; they also have rules, both explicit and implicit; in-jokes and, inevitably, conflict. There were also, I found, real parallels with the 12-step groups I had been involved in: the principle of anonymity in both kinds of groups allowed for a degree of intimacy to develop that was unmatched in most real-world communities. At a time when we are less likely to know our actual neighbours, these virtual communities have blossomed, as though fulfilling some fundamental need for casual friendships and group identity. As my pregnancy advanced and I became unimaginably vast, my anxieties about the twins melted away, just as I had been told they would, and I began to prepare for the birth with mounting excitement.

On 12 April 1999, Theo William Shisler and Felix Samuel Shisler arrived and suddenly everything changed. The twins were born with a mystery illness and, instead of the mountains of nappies and sleeplessness I was expecting, I found myself catapulted into the twilight zone of the neonatal intensive care unit. It is not unusual for twins to need a bit of extra help in the early days, usually due to prematurity (which was clearly not the issue for my full-term babies), and my virtual friends were quick to offer support and reassurance that we would all be home together soon enough. But, as days grew into weeks and then months, Felix and Theo looked no closer to being discharged. Danny and I were almost numb with shock; it felt as though we had been accidentally dropped into the wrong life, surreal.

To call the next few months a roller-coaster in no way does justice to the nausea-inducing highs and lows of the ride. The boys were ferried between University College Hospital (where they had been born) and Great Ormond Street, where they underwent a bewildering array of tests and treatments (including having feeding tubes inserted when it became apparent they were unable to swallow). I focused on putting one foot in front of the other, coping with one day at a time, and at night I would sit at the computer and pour out my frustration and fear to the mothers who, despite the fact that I had never met them, felt by now like dear and trusted friends. Around the world, thousands of strangers shared our triumphs, struggled with our setbacks, and did what friends do - they were there for us. Each day I would awake to find another batch of e-mails offering encouragement, reassurance and love; and each day I drew enormous strength from them. After one particularly rough patch, the group secretly clubbed together and bought me a rocking-chair "to rock the babies in" when I finally brought them home. I was overwhelmed with love and gratitude.

The babies themselves were gorgeous, though, and, despite my misgivings at the start of the pregnancy, I was utterly won over by their charm. Their physical similarity was startling - even I had difficulty telling them apart on occasions - but their personalities could not have been more different. Felix, the younger by two minutes, was a feisty little thing and incredibly sociable. He was also strong-willed, and you could see in his eyes that he was a fighter. Theo, on the other hand, was an altogether more peaceful soul. He had an air of serenity about him that everyone noticed and, while Felix liked to be in the thick of the action, Theo was happy to watch from the sidelines. Separately they were charming; together they were completely irresistible. They slept together in one big hospital cot, snuggled up and holding hands and I was glad that they had each other for the times when I couldn't be with them.

Felix and Theo had been beset by chest infections and various bugs since day one but, seven months after their birth, both boys picked up a particularly vicious virus and Theo, always the weaker of the two, was finally beaten. He died at 5am one Saturday morning aged seven months and one day. At the hospital I held his still-warm, silent little body in my arms, trying to find a way to say goodbye to my son; and I felt, really felt, my heart break.

Back at home I sat at the computer and tried to find words to tell the world that Theo had gone. It had been so unexpected; we knew there was a problem with the twins, but we had never really considered the idea that they might not make it. Denial, I suppose, and probably not a bad thing either, but it all added to the sense of bewilderment.

The response to this terrible news was extraordinary: I received hundreds of e-mails within the space of a few hours. The shock was palpable. All around the world, people who had never met my son sat at their computers and wept. Felix and Theo's story had unfolded so publicly; many told me that reading the daily update on the babies was the first thing they did each morning. Danny opened a condolences book online and, over the next few days, the messages poured in. Though nothing could ease the pain of our loss, knowing that Theo's short life had touched so many people, that he had mattered in the world, made that pain a little easier to bear. As we held his funeral in London, my online community took their own children out and released white balloons into the sky, so that "Theo would have something to play with in heaven".

I stayed around the twins list for a while. I felt so bonded to the group and, naturally, they were still keen to follow Felix's progress. I promised that I would stay until we got him home, while silently praying that he would make it. At nine months he was diagnosed with a severe form of nemaline myopathy, a rare neuromuscular disorder. Though cognitively normal, Felix's muscles were weak; swallowing, breathing, sitting and moving would be a struggle for him. He was given a tracheostomy in preparation for a life on a ventilator.

Once we had a diagnosis, we turned a corner and started to plan the system that would support Felix at home. He was finally discharged from hospital aged 18 months.

Leaving the group felt like another loss, another step away from Theo and " the twins". My virtual friends told me I was welcome to stay, but it was time to move on. I had, by now, connected with some other groups online for nemaline myopathy and disability parenting.

What I experienced on the twins list was almost miraculous. Everyone who was there was profoundly affected by it; the public unfolding of our story became a part of the story itself. There was an intimacy that was incredibly powerful even though very few of the participants had ever met. Despite the trauma Danny and I went through, there was something magnificent about the humanity we saw. People, strangers, reaching out with love and compassion; a thousand tiny lights, shining in the darkness.

Helpful sites


A discussion site covering all aspects of twins and multiple births, from pregnancy through to the realities of life as an adult twin. Includes information and mailing lists on multiple pregnancy and on bereavement after the loss of one or more twin.


The website of the Twins and Multiple Births Association and based in the UK (unlike Twins List). Support, resources, information and discussion, including an e-mail group for parents of children with special needs.


A site for those who have lost a baby, with e-mail support groups (including one for loss in multiple birth), chat sessions, memorials and grief resources.


A UK-based site for families who have lost a child, including lots of advice and resources and also the invaluable Families' Discussion Forum.


Covering all aspects of parenting a disabled child, offering advice and resources. Run by parents who, between them, have a wealth of experience and knowledge, it also has a very supportive e-mail group.


A support and resources website for anyone seeking information on nemaline myopathy, the rare neuromuscular disorder that affected Felix and Theo Shisler.

Fragile by Niki Shisler is published by Ebury Press, £14.99. To order your copy at the special price of £13.99 plus free p&p call Independent Books Direct on 08700 798 897, or order online at www.independentbooksdirect.co.uk

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