Open Writing

We're late. I misjudged the traffic and forgot to allow time to locate a parking place in this unfamiliar corner of Leeds. Nowhere is flat in the Pennines and in my smart shoes and skirt I half run uphill, beside James, to the church. He can move very quickly on his crutches but his skin is flushed, as mine must be, in the May heat.

The hearse is just pulling up and we're able to slip into the cool dark of a pew near the back. The chill I feel goes deeper than the damp film on my skin. The church is full. Almost half are teenaged pupils from Foluso's school. Today they are children, bewildered and hurt. I glance at James. His face is grim. Hard set, it is a man's face.

The coffin seems too small. Foluso's name is spelt in flowers along the top. A smiling school photo looks out at us. He would have been fifteen today.
Agnes comes in surrounded by her family and my heart breaks. The words of the service wash over me, my thoughts circle and crash. Her shoes are too close and even the idea of being in them has my insides kicking and screaming.

It takes some time for us all to file out of the church. Each person offers a word or a touch to the family standing outside the doors. The similarity with a wedding reception line strikes me as grotesque, yet we need this opportunity to share a burden of pain, as much as sharing the gift of joy, with those who care.

Waiting my turn to speak, I can see Agnes and admire her strength. Stepping forward, she is suddenly in my arms and I can feel the grief thrashing her soul, as she sobs. Agnes needs to talk. She tells me about the final stages of Foluso's illness.

Thankfully, his father had been allowed to fly home, when it became clear that there wasn't much time left. The whole family was usually by Foluso's bedside and when the pain became unbearable, he would calmly ask them to please go home while he had some rest, not wanting them to see him suffer. The week before he died, Agnes, sensing the time was near, requested that he be discharged. Foluso suggested it be the following Monday. On that day, he quietly passed on. It was as if Faluso wanted to spare his family the physical details of his care.

This doesn't surprise me. Foluso had been an exceptional person, with a quiet wisdom and peace beyond his years. You had a sense that God was walking alongside him eveiy step of the way. He was always more concerned about the needs of others than his own and endured the pain and humiliations of cancer without complaint. Agnes confided that one night, early on in his treatment, he had come into her room, knowing she wouldn't be asleep. He told her not to worry, he wasn't afraid of death. He also told her he loved her very much and she'd been a wonderful mother to him.

I'm aware that Agnes is needed and I've had more of her time than many others. She's swept away and James and I silently return to the car.
The beautiful May sunshine at the funeral feels wrong today, how dare we enjoy such light and hope when a young boy's body lies in darkness? It's a stark contrast to my mother's burial, when I was a teenager. At her graveside, the wind wailed and icy sleet stung exposed bits of skin; appropriate for the way I felt inside. I remember wearing my mother's new black shoes and thinking how grown up and pretty they were, hoping Mom would be pleased that I was looking marginally fashionable. We'd always battled over clothes and shoes. She was determined to buy me what she thought was the latest gear, where I only wanted conservative, blend-into-the-background things.

My grandmother had wanted an open casket at the funeral but, having been denied the opportunity to see my mother whilst she was still alive, I vehemently refused. I had only ever seen a dead body once before and that was an elderly uncle. He was like wax, creepy and nothing like the man I'd known. I didn't want that kind of memory of my mother. The last time I'd seen her she'd been the vibrant, caring Mom I loved. Despite dire warnings that I would regret it later in life (I haven't), my family respected my wishes.

I sobbed on the verge of hysteria throughout my mother's service but was deeply moved and comforted by the enormous turnout. People had to stand out in the street; there were so many mourners. There was solace in knowing that my mother had lived her life fully, with energy, joy and enthusiasm and had touched the lives of so many people. I hope Foluso's family will find comfort in the packed church this afternoon.

Over the months spent in the teenage cancer unit, we became friendly with several children and their families. Some of them seemed to be putting their lives back together and the Candlelighters' magazine featured reports on many who have survived childhood cancers of all sorts. But we also knew children who didn't make it.

We learned about a local teenager who had succumbed to four rare cancers around the time James was diagnosed. Her mother, with the support of her family, had set up the Laura Crane Trust to fund research into the rare cancers that affect people aged 15 to 25 years old. She had given up her full-time teaching career to devote herself to this cause, desperate that other families should not have to go through what they had. Cancers affecting this age group are often unusual and aggressive and the needs of the patients are different from those of either younger children or older adults.

We offered to help the charity and have spent a few hours standing in various supermarket collections. Then we decided to try the Three Peaks walk in the Yorkshire Dales to see if we could raise some more money. It's a 24-mile walk up and down three very tall peaks. We did it in ten hours and managed to collect just over £400 between us. Half of it went to the Parkinson's disease charity, which organised the walk, and the rest to the Laura Crane Trust.

We were amazed at the number of people doing the walk; there were buses full from all over. By the third peak, Howard's knees were agony and I wasn't much help, as I felt I had to run the last four to five miles. I couldn't wait to finish and had to do a different kind of movement other than walking. It was tough getting out of the car, at home, and we were worried what we'd be like the next day but, apart from a little stiffness, we were fine.