I wept as I learned about the loss of five-year-old Sam Puttick along with his parents, Kazumi and Neil. The Beachy Head tragedy last weekend brought back memories of my own disabled child's death three years earlier. Sophie too died during an idyllic spell of warm summer weather and I recalled the feelings of despair and impotence; of not knowing how I would cope without her. Losing a child is heartbreaking and I couldn't help but see parallels in our families' lives.
Like us, the Puttick family was mixed race with a healthy child who, through misfortune, became quadriplegic and paralysed. And like us, Kazumi and Neil had survived the struggle of caring for their disabled child only to face a second tragedy of pneumococcal meningitis. There was no hope of recovery, and Sam died last Friday. People with limited mobility are more at risk from infection and although Sophie died from an acute form of pneumonia, the same type of bacteria was responsible for both deaths.
Looking at Sam's photos on a family website, he was obviously a beautiful and engaging little boy despite his severe physical disabilities following a car accident four years ago. The pictures show a permanent tracheotomy to aid breathing, arm splints to ease spasticity and a brace to hold his head up. Caring for a child with such extensive problems is exhausting, both physically and emotionally, even if good support services are in place. With no other children, I imagine that Neil and Kazumi put their own lives on hold after the accident to do the best for their son.
And, given the poor prognosis for his future, I wonder if they sometimes questioned the validity of Sam's life. But I know that even if that were the case, they loved him as much as any parent can and would have been devastated last week when doctors told them that Sam was dying. Despite their continual devotion, they would have felt that they had failed as parents.
Driving through the blossoming hedgerows last Friday to the delightful area of Wiltshire where they lived, what would they have been thinking as the sun shone on the surrounding beauty? I'm sure they would have been struck by the irony that during this season of growth, they were taking their little boy home to die. Although, I'm also sure they were right to make that journey, and for their last hours together to be in their own surroundings. I have always been grateful that Sophie died at home.
However, this is where the parallels in our families end, and is why I can sit here and still enjoy the sound of birdsong and the beautiful early summer of southern England whereas Kazumi can't. I have other children and even at my lowest moments, throughout Sophie's illness and when she died, I knew that I was still needed. There remained a purpose to my life even if I couldn't always see it.
When you look after a highly dependent person for a long time, it is no exaggeration to say that your life revolves around them. When that person dies, not only must you adjust to the emotional loss, but also to the whole routine of your life abruptly disappearing with nothing to replace it.
Life after caring is tough and while losing a child is heartbreaking, having others around can make all the difference. Perhaps the difference between life and death for parents.
• Judith Cameron is a writer and former Society Guardian columnist.
