The final protocol was for him to be rendered entirely unconscious and put on a ventilator. Once this happened there was no guarantee he would regain consciousness. While we came close at times, we never reached this stage.
We learned a lot about navigating the system to try to get the best for your child. When dealing with epileptic seizures in the A&E department, watch out for the four-hour waiting target: there is a danger of an entirely unnecessary hospital admission. (Once you get close to the deadline the staff, quite understandably, want to shunt you onto a ward, whereas it may be that after just a few more minutes in A&E things will be good enough for you to go home.)
Once your child is in a hospital ward, try to order your next batch of drugs hours before you’re due to leave, as they take forever to come. (I used to joke that hospitals were easy to get into, but impossible to get out of.)
When the doctors begin their ward rounds, never leave your child’s bedside; it is the only time you have a real chance to find out what on earth is going on.
Nowhere was parental navigation more essential than in the highly charged world of special-needs education. I had already seen as a constituency MP that special schools were struggling, partly because of their high costs, but principally because of the doctrine of inclusion. At its most extreme, this held that all children, whatever their needs, whatever their disability, should be taught in mainstream schools. Of course it is right that children with special needs who can be integrated into mainstream schools should be able to be, but some children are undoubtedly better off in a special school. In any event, parents should be able to make informed choices. Far too often they simply weren’t being told about what was available. Even though I had seen this happen to others, I rather irrationally didn’t see it coming. But of course it did.
We had heard about an amazing special school called the Cheyne Day Centre, attached to the Chelsea and Westminster Hospital. But when the education adviser from the council came around to talk about Ivan’s schooling they failed to mention it. We then began a battle to get him in; and once he was, we found ourselves having to fight another battle to keep it open. For a time we were successful, and he received the best possible start. Care, stimulation, therapy and education, all in a place where we knew he was safe and where the staff could cope.
After his fifth birthday Ivan needed to move on. While we had fought valiantly, the cost of Cheyne was too great, and a new special school was being built next to Queen’s Park Rangers’ Loftus Road ground, which was near where we lived. We accepted the inevitable and agreed to a place at this school, Jack Tizard, which in the end turned out well.
My friends say that the experience of having Ivan and helping to care for him changed me a lot. I am sure they are right. A world in which things had always previously gone right for me suddenly gave me an immense shock and challenge. I tried to rise to it, but am very conscious of the ways in which I failed. I was always there for the emergencies, good at the technical things, never one to hold back when nappies needed changing or drugs delivered. And I loved Ivan with all my heart. I adored bathtime, bedtime, walks, wheeling him everywhere and nowhere. As he got older I would throw him over my shoulder and make sure he was part of everything we did together as a family. But I know that I lacked the real patience and selflessness that are required to be a truly great carer. And that is the truth about accidental carers: we are not perfect, and there is a lot of muddling through. No wonder so many marriages break down when challenges like this come along.
Yet perhaps that was the greatest discovery of all. While I can think of ways in which I failed, I cannot think of a single way Samantha did. I still marvel when I think of how she managed and cared and loved and coped, not just with Ivan but with the rest of our growing family.
The end is almost too painful to relate, even to recall.
We had had some scares and close shaves. Seizures that never seemed to end. Chest infections that he would struggle to shake off. And then one night, 24 February 2009, Shree woke us to say that Ivan’s stomach had become badly swollen and he was in terrible pain.
This time Sam said she would take him to hospital, and I should stay with the other children. I will never forget holding Ivan in my arms in the cold night air as Sam threw some clothes and blankets on the back seat and started the car.
As soon as they were gone, I started worrying that this time it was different. So I too dashed to the hospital. When I got there the situation had deteriorated badly. A team was standing over Ivan in the emergency room, working desperately to resuscitate him. But he had gone. Adrenalin injections. Defibrillator pads. Nothing worked. He had suffered a massive organ failure. Sam and I were left holding him as the team, visibly moved, backed away to give us some space. We had always known this might happen, but nothing, absolutely nothing, can prepare you for the reality of losing your darling boy in this way.
It was as if the world stopped turning. Explaining what had happened to the children was so hard, because they were so young. And I had to call Gita, who was visiting her family in Nepal; she was desperate to be there with the child she loved so deeply. I called Ed Llewellyn and told him what had happened and that I would be staying at home. I was leader of the opposition at this point and, as it was a Wednesday morning, I was meant to be at Prime Minister’s Questions. What happened later, when Gordon Brown led tributes and the House adjourned for the day, meant a lot to us. It was much more than I had expected, and it showed the real warmth and humanity of Gordon Brown, who had of course suffered in a similar way with his daughter Jennifer Jane, who died shortly after she was born.
The next few days before the funeral were a blur. At least we had to focus on the songs and poems we wanted to remember him by. A friend of Sam’s called Damian Katkhuda, who had a band called Obi, sang and played his guitar in St Nicholas church, Chadlington. It was a beautiful service, with our closest friends and family around us. But there was nothing but darkness for us.
You never fully recover from the loss of a child. But you can steadily learn to cope. I threw myself back into my work as a way of trying to manage. When I look back, I realise that I started working again too quickly. For a while I was too fragile and not in the right state of mind to make decisions. Nothing else seemed to matter alongside what we had lost.
But what is often said about grief I found to be true. While at first you think the gloom will never lift, there comes a time – and for me it was many months later – when some of the happy memories start to break through and you remember what you had, not only what you have lost.
And having Ivan taught us so much. About unconditional love. About our total devotion to each other. About the extraordinary compassion in our health service and the lengths that people go to in order to help. We learned about our strengths, but also our limitations.
Ivan lies buried opposite the church in Chadlington. We take the children there, and tell him how things are going and how much we still miss him. Sam found an inscription from Wordsworth for the headstone that sums up so much of what we feel.
I loved the Boy with the utmost love of which my soul is capable, and he is taken from me – yet in the agony of my spirit in surrendering such a treasure I feel a thousand times richer than if I had never possessed it.
8
At the time, Michael Howard’s 2005 general election campaign was seen as slick and professional. But it was also too right-wing and rather mean-spirited, putting people off rather than turning them towards us. It resulted in another disastrous defeat for the Tories.
I had been responsible for policy coordination, writing the manifesto and acting as one of the party’s principal spokesmen around the country. I saw the campaign close-up. Yet just a few weeks after it was over, I was planning an aggressive leadership campaign in favour of a more modern and liberal Conservative message.
How does all that make sense?
The short answer is that in modern