GETTING your children ready for school in the morning can be a bit of an obstacle course.
Rousing sleepy heads from their beds, making sure there's something inside their stomachs before they're catapulted into the cold, stopping to check that they've actually got all the right kit in their book bag – and all the while knowing that you a
re running late yourself, with the mobile pinging reproachfully in the background as another urgent text from the office goes unanswered.
For David and Samantha Cameron the morning assault course was always strewn with some pretty formidable obstacles. As well as getting their wee boy ready for nursery and their daughter up to speed for school they had to prepare their eldest son for his day ahead – knowing that day, like every day, would be punctuated by pain and the night ahead would bring scant rest.
Ivan needed regular medication which, like all his food, was administered abdominally. His condition meant that he had no control over his limbs so he had to be lifted, carried and taken by special wheelchair everywhere. He could be subject to seizures at any point which were difficult in themselves and might be the prelude to a rapid deterioration in his condition. He needed constant supervision and any journey could only be made in a specially adapted vehicle.
The reality of Ivan's daily routine was draining, physically and emotionally. Many of us will know friends or family who have severely disabled children and the huge demands of caring for them can wrench lives out of place. But, like so many other parents, who face such difficulties, David and Samantha were determined to provide all of their children with as normal a life as possible.
And that meant no fuss, no fanfare. David was straightforward and down to earth when planning "the logistics" around Ivan's life. It wasn't easy. He had to negotiate his way through the complex bureaucracy around Ivan's education, juggle the increasingly hectic demands of political leadership and plan the family timetable with painstaking attention to ensure there was always time for his youngest two. But while there was a massive weight – constantly – on his own mind he never burdened others. This meant that few knew the extent to which caring for Ivan shaped so much.
Ivan's condition – Ohtahara syndrome – is a cruel disease. It not only severely impairs the quality of its victims' lives, it also cuts them off tragically, and without warning. Children with Ohtahara syndrome have a fore-shortened life expectancy, their embattled systems are uniquely vulnerable. The seizures which grip a victim's body can subside after a while, or may presage something far, far more terrible. David and Samantha have lived every day of Ivan's life knowing that they might lose him at any point.
And throughout Ivan's six years, David and Samantha have had to get used to rushed admissions to A&E, anxious hours waiting for doctors to ameliorate the worst of the condition, and then long nights beside their child in his hospital bed. There have been several occasions beforehand when the Camerons have feared the worst, but thanks to the intervention of the professionals they have come to count as friends, they have been able to take Ivan home to sleep in his own bed again.
But not this week. And the hole that leaves in the Camerons' lives is enormous.
It wasn't easy, but Ivan was fully and completely integrated into everything the family did. He joined his younger brother and sister on country walks, hatted and scarved in his wheelchair, when they went to feed the neighbour's pigs. He joined them when they went to Sunday school, or to the park round the corner from their London home. The younger children played with their friends in the same room as him. Family life, in every sense, revolved around Ivan. His parents would cradle him and chat to him while entertaining their own friends and neighbours, everyone recognising that looking after Ivan was a natural, if never easy, part of the Camerons' lives.
We are all shaped by our relationships. Our attitudes, priorities and values are all influenced, more than we sometimes know it, by the texture of our family lives, the conversations we have with those we love and trust the most. And there is no doubt that the impact of Ivan on David and Samantha has been profound. It is impossible to count all the ways in which his life has changed theirs. But it is certainly clear that David's public life, the stances he has taken as a politician and the fights he has embarked on, have been influenced in all sorts of ways, by Ivan.
David grew up in a family where the idea of public service was taken seriously. It was a comfortable upbringing certainly, but there was a strong sense that good fortune generated expectations – your energies, time and talents were never better directed than when helping others. David's decision to enter politics was influenced by that sense, and one of the aspects of the job he clearly still enjoys the most is the constituency work which allows him, like any MP, to help those without time, money or any advantage in life, to secure justice or a better deal from the bureaucracy.
Because David has an innate belief in public service and appreciates the special pull it has on individuals he's always been instinctively supportive of the NHS, and sympathetic to the position of professionals in the health service. He's always thought that viewing their work purely through the prism of management targets or trying to impose simplistic business models on healthcare is a misunderstanding of what motivates people within the NHS.
That feeling has been powerfully reinforced by the experience of caring for Ivan. Seeing doctors, nurses and care workers, at the end of an exhausting shift, pouring all their efforts into easing Ivan's pain has given an extra dimension to David's appreciation of what the public service ethos means. It has fired his anger at the way he feels NHS professionals have been shabbily treated in the past.
Beyond a deeper appreciation of the sacrifices so willingly made by those who work in our hospitals, David has also developed a stronger than ever dislike of the bureaucracy which has grown like bindweed across the public sector.
As a confident, articulate Oxbridge graduate with the time and back-up to hammer through the bureaucratic maze David has still, nevertheless, often felt frustrated beyond words by the way special educational needs are assessed, the rules which restrict access to special schools for children with disabilities and the way in which officials can respond with blank insensitivity to deep human anguish. If, he has confessed, he finds it so frustrating, what must it be like for those who don't have the opportunities or advantages he has. It has been anger on their behalf – on behalf of the parents of countless numbers of disabled children let down by the current system – that has fired his determination to simplify the process of getting a statement and securing a place in a suitable school for every disabled child.
There are specific political instincts which have been reinforced and specific policy stances, like support for stem cell research, which have been lent urgency by the experience of the last six years. But there is also something deeper.
Becoming a husband, David has said, is the moment when me becomes we. Becoming a parent is the moment when the love a couple have shared as an exclusive joy grows into something at once richer and more complex. Life is no longer about learning how to mould yourself gently to fit comfortably into another adult's existence. Suddenly it's all about putting someone demanding and dependent on you first and last in all your thoughts. And the experience of caring for a severely disabled child is an intensification of that change none of us who have been through it can properly understand. The demands are greater, the dependence total, the intrusion of another's needs into your thoughts ever present and haunting.
But anyone who's been a parent also knows that the concern and worry generated by caring for a vulnerable new life are more than matched by the feelings of love, of joy, of hope which a child brings, which are unlike any other emotion in their power. David and Samantha have lived with those emotions at their most intense. They have felt that love, experienced that joy when Ivan has smiled at the end of another difficult day, dared to hope when he's returned, better for a time, from hospital. And the intensity and power of emotions that strong leave an indelible impression on the human character. Friends will notice it in reactions to news of another's suffering, in thoughtful silence, in awareness of another's pain.
This weekend David and Samantha have to live with a loss they always anticipated but which is still, after all the joy they shared, shattering in its impact. Their friends will be praying for them.
Donations in memory of Ivan Cameron can be sent to Mencap (123 Golden Lane, London, EC1Y 0RT; 020 7454 0454) or Friends of St Mary's Hospital, Paddington (Acrow Building, St Mary's Hospital, Praed Street, London W2 1NY; 020 7886 6586).
Michael Gove is Shadow Secretary of State for Children, Families and Schools. He has donated his fee for this article to Mencap
