Jonah was a very good first baby, laid back and tolerant; interested and lively but not excessively demanding. He slept and ate as he should, grew and learned remarkably fast. He could sort blocks by colour at 12 months and developed a fascination for running toy trains along different surfaces at eye level. Plump and cute, this was the boy who laughed for hours at a daffodil and could stand tall with both feet in one of his father’s outstretched hands.
It was Jonah’s20-month check up, where the health visitor weighs and measures the child, then plots their growth on a centile chart. I told her that he’d been seen by 3 doctors in the last 2 weeks – they’d all given him antibiotics for a suspected ear infection. He’d seen his own family doctor just a week ago. Jenny was calm and efficient. She assessed him with tests that children are rarely given. She called in the practice’s pediatrician who had a personal letter of referral in my hand in ten minutes and had someone excursion us to the hospital closest. We asked to see Dr Houston, the pediatric specialist in our local crummy children’s ward. He performed a selection of physical tests on Jonah and booked a CAT examine for the next day. The taxi brought us home just as our friends were arriving for dinner and I had nothing prepared.
When a consultant asks you – no, tells you, to sit down you know there’s something meaningful coming. When the nurses in the room both grab your hands, you know you’re either about to be sedated or there’s one mighty emotional shockwave about to burst. Jonah had a brain tumour and it was, his voice truly faultered, it was enormous – the biggest he’d ever encountered. What do I want to do?… I want to go home, I don’t want any more tests, I want to take him home already if he’s going to die. How long? DAYS.
In fact, I think the man was just as shocked. Imagine having to break that news, what a specialized. He made a call to a colleague who was keen to have Jonah transferred into his care. He was a paediatric neurosurgeon, Mr Hayward, and gave instructions to withdraw his sedation and start him on what was a exceptional measure of steroids in an attempt to reduce the swelling, in case surgery did turn out to be an option. I remember the daffodils in Regent’s Park viewed by the ambulance window. The height of the 6-storey terraces and the squeal of the siren as we passed by intersections. This child is dying. I can’t leave him. I’ll sleep underneath his bed, in that chair, I won’t sleep. I just can’t leave him. I’m his mum.
Across the large intensive care bay, there was an incubator. A woman in a muted dress, with long dark hair, watched us from the chair beside it. When the doctors and family had left me, she came over. She said someone had told her this story and it had helped her to cope:
“There was to be a special family dinner and the mother had been working hard to prepare all the favourite dishes and desserts”. The woman had a heavy accent but a natural lilt which was oddly soothing in the sterile ward. She continued, “She had ironed her best table cloth and laid it on a large tressle table in the garden, under an old olive tree. Placemats and cutlery, polished glasses and napkins in rings. Everything was ready. She had chosen her Grandmother’s crystal bowl to make her specialty dessert. When the time came, who should she choose to carry this precious piece from her kitchen to the table, in the garden? Should she ask her eldest daughter or should she ask her youngest?” She waited for me to respond, the eldest, I thought. “She chose the youngest because she knew that child had the skills required. God gave you this child because he knew that you, of all people, had exactly the skills needed to help him.” We looked at Jonah. She left me and her story slowly nurtured an inner strength. I am not ‘religious’, rather a more free-thinking spiritual person. Her son, Yacob, had been born with an under-developed brain. He died before we left the hospital.
I spent about a month, in all, living in wards and around hospitals. I retold that story to new mums coming in and watched their hope sustain. Jonah survived one basic night, hour by hour, registrar at his side, and was operated on for over 4 hours the next morning. His surgeon noticed the book I was reading, Jonathon Livingstone Seagull, from his own collection of Richard Bach. The doctors openly explained Jonah’s medical condition and needs, procedures and choices. He survived, their biggest tumour, and had MRI appointments every few months thereafter.
Jonah came home a different child. His whole personality had changed. Doubtless, he was coping with a level of background pain, but reacted so differently that I had to get to know him all over again.
I now had a 2 year old boy who could not sit up, swallow solids, stand or walk. I got on with the intensive, daily physiotherapy and took a year off my degree to rehabilitate him. His physio was easily turned into games – throwing, catching, reaching, picking up, putting in mouth, using a walking frame. Later on, wheelbarrow races and push-ups, swimming and karate. The benefits were obvious as improvements were slow but steady from week to week.
Living with a silent disease closed our future – we were incapable of planning ahead, beyond the next MRI results. Thoughts of his future, our developments in career, his future education, a distant holiday were out of reach, for fear of a recurrence. There was a recurrence. He underwent another surgery at the age of 4. As parents it was almost unbearably frightening, as we knew the procedure. However, we did it all again and by the age of 10 he received information of his release. I wrestled with this, information of mouth, comment. I had to have it in writing – and when the letter from Professor Hayward came, it had the magic information, ‘cured’. I’m not one for hoarding but that’s one piece of paper I will keep. Jonah nevertheless writes to that Professor and usually sends him his latest drawings; he has our talent for draughtsmanship.