Life without Grace

A father's story.

A year after young Grace Boxall’s death from a brain haemorrhage, her father, Peter reveals his daily struggle to cope with the loss. You can read his touching blog below. It was a wonderful concert at Grace's school last night: music, singing, sketches. Sadly, it was in our daughter's memory. Grace lost her fight against cancer a year ago. I am drafting this in one of her redundant exercise books with her fountain pen – just two of the thousands of mementos left by such an inspirational person. A year has passed, and it is one I would not wish upon anyone. Seven years ago, when she was 10 years old, Grace was diagnosed with a brain tumour. Surgery, chemotherapy and radiotherapy followed, all supposedly successful. Grace was deemed to be in remission. But in July 2012, she suffered a brain haemorrhage, just weeks after the all-clear from an MRI scan. This left her severely disabled. Again, with the determination shown throughout, she recovered to the point that she returned to school last September. Just for a week, though: another bleed, and one from which she never recovered.

Days of reflection and a complete void

They removed her life support at 4pm on September 26. Grace passed away in my and my wife's arms at 4.30pm in the intensive care unit at Great Ormond Street Hospital. As Grace's primary carer and a house husband, my life all but ended. Thankfully, I have had Karen, my wife of more than 30 years, for support – and most certainly without her, it would indeed have ended. There were difficult days of reflection before the funeral. Grace was just days away from her 16th birthday when she passed away. Her school and friends marked the occasion by releasing 600 purple balloons. There were so many messages to deal with. While in remission, our daughter had formed a charity, Smiles With Grace. Donations flooded in. In relative terms, when the day of the funeral arrived, it was as good as it could have been, with hundreds attending a service of celebration. But that was it: Grace was no longer with us. The local press gave such wonderful, compassionate coverage of it all. She was an inspiration to so many. The previous six years had at times been extremely difficult, but Grace was always there with us. Now there was a complete void. Our house, with so many memories, was cold to the core. Immediately after the funeral, we embarked on a trip, a distraction: a few nights away visiting relatives, attempting to clear the mind. In reality, it achieved little. The floods of tears continued.

Reminders of Grace 

At the family home we had the guinea pigs' hutch glaring at us from outside the conservatory. Grace's two pets had both died while she was in the multitude of hospitals and at the wonderful Children's Trust in Tadworth. Gingerly, decisions had to be made, the hutch dismantled and disposed of, through more tears. Nobody knew what to do or say. My wife and I went for walks, met with friends; I drank too much.
The house had to change without eroding Grace's memory. The large, cosy sofa on which the three of us snuggled up was sold on eBay. Her single bed, on which the paramedics and air ambulance crew worked so hard to keep her alive, was got rid of. Her room, which she so wonderfully designed, remains intact, now with a double bed, but gone is the desk at which she had toiled, gaining a scholarship the week after ending her initial chemo back in 2008. Grace was amazing.

All distractions were welcome

Last November, my wife went back to work in Canary Wharf – not easy, but she was immediately busy, so it helped. Being home along, though, I found extremely painful. What was the reason to get up? Our alarm engineer came for the annual service. He had lost his daughter in a car crash seven years earlier. His best advice was, "Don't be alone" – which was exactly where I was. Along with my wife, friends were so important, keeping me somewhere near the straight and narrow. During Grace's final months, I kept a diary observing the efforts of the NHS to keep her alive, which for me was therapy of sorts. After her death, all distractions were welcome. Birthdays were muted to the point of being virtually silent. A drive to Brighton, with sausage and chips on the seafront, proved to be the perfect antidote to Christmas, while The Mousetrap on Boxing Day helped keep our mind off things. Six months on, life was still extremely difficult. We needed a break, so took a trip to South Africa in February, which also covered our 31st wedding anniversary. 

Nobody can tell you how best to come to terms with a death

Having the charity to channel our energies was good, too. However, dealing with the wonderful fundraising initiatives can be emotionally draining – as have been the continual good wishes. That sounds so selfish, but sympathy is a very hard emotion to deal with. Small talk with strangers became impossible. We appointed many of Grace's friends as patrons of her charity – a morale-booster most of the time, but awkward at GCSE time. What grades would Grace have achieved? A semi-anonymous donor pledged money for a memorial bench. We gave an award at Grace's school for the student who did most for charity. We rejigged Grace's room and invited friends from Dublin to stay – but it was all too raw for me. The friends ended up at the local Premier Inn, and I got through the school's award-giving ceremony and the unveiling of the bench (an absolutely beautiful bespoke design) in a bit of a drunken haze. Nobody can tell you how best to come to terms with a death, especially that of your child. How an individual reacts is an unknown. Circumstances change in every case. For us, stress has come in bundles. While Grace was in remission, my father died, Alzheimer's and prostate cancer an ugly cocktail that resulted in him being sectioned in his final months. A year before that, a friend in his early fifties passed away in Thailand. Both would have been difficult enough to deal with without the added complications of caring for and saying goodbye to Grace. My wife and I are accustomed to battling on. Grace's first operation was in 2007. To have your 10-year-old daughter endure a 12-hour-plus brain operation so complicated that it required a change of shifts mid-operation was an unbelievable experience. To go through this once was bad enough. Grace endured another three operations. On one occasion, the neurosurgeon said he had been advised by his colleagues, eminent brain surgeons at GOSH, not to go ahead. To be in intensive care once is unthinkable; to keep returning was something surreal. The past seven years have seen my wife and I deal with stress by the bucketload. When you read in the media that we are all suffering from stress, you wonder if many of us really know what stress is. Take a visit to the parents' room in the intensive care unit at Great Ormond Street. There, you will witness what it really is. For us, it was being told that your daughter's life support is to be removed.

Rebuilding our lives and remembering Grace

This summer, my wife decided that corporate life had become too great an emotional drain and called it a day, ending a 30-plus-year career in the City. This has proved to be an extremely positive step; no longer do I wake up alone – selfish, perhaps – and we are slowly making plans for the future. Life has to be rebuilt, but the foundations have been removed. The anniversary of Grace's death has passed, marked with a sponsored walk, with about 200 people taking part. A £58,000 project at Great Ormond Street and supported by the Smiles charitable foundation that will help children with spinal lipoma has been finalised. My wife and I hope to sit on an NHS advisory panel to improve the patient's hospital experience. Grace's 17th birthday has also passed. The concert in her memory raised thousands, not just for our charity but also for Haven House, our local children's hospice. We raised a healthy sum in an auction of the Olympic torch that Grace never got to carry (on the day, my wife stood in for her). Our house is still empty, though. Grace will never be forgotten, and life for this redundant house husband/carer will never be the same.
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