Gratitude Is the Attitude

As a parent, one of the worse things you can have to deal with is the illness of your child.

When one of my children was diagnosed with a rare and serious brain disorder at the age of four-years-old, I felt as if I had been picked up by the legs, swung around, and flung onto another planet. I spent a good few days writing out questions for doctors, who couldn’t answer them, drinking large amounts of wine after the children had gone to bed, and researching everything I possibly could about this illness that had suddenly cast a dark shadow over our lives.

I would have done anything to have taken the illness from her, had it myself, anything just so that my daughter didn’t have to go through this and could live the normal carefree life we had imagined, a cheeky, happy, mischievous child with more than a little daredevil in her who was suddenly restricted by the constraints of her diagnosis. It felt as if her every move had to be watched and she could no longer join in with the laughing children on bouncy castles and trampolines, nor could she continue with horse riding. Gym activities were curtailed and nothing at all could happen to injure or jolt her back, neck, or head.

She underwent regular MRI scans and saw a neurosurgeon who monitored her progress, the fear being paralysis could be the result of the illness if it was left untreated, but the operation they perform is of high risk. Therefore, they wait until the risk of the operation does not outweigh the risk of the illness itself. One December, her surgeon announced that he had presented her case at a conference of neurosurgeons in Paris who had all agreed that it was time to operate. We were to wait for the call.

It was like living on a knife edge; my daughter, now six, had some awareness of the issue but obviously had been given a limited and child-friendly explanation. Her older sister was worried and her younger brother too young to be aware but it affected us all. It was a relief as well as a cause of panic when the following February we were called and told to come in immediately as there was a bed available in the neurosurgery ward at our local children’s hospital. I will never forget the sheer dread and fear as I took her in that day, having arranged care for my other children and rang my parents who were on their way to Devon, only to turn around and come back to add their support. It felt as if this was the worst thing in the world that could be happening.

I was taken into an office and given a seemingly endless list of things that could go wrong; every possibility was discussed so I knew all of the dangers of the brain surgery prior to signing my agreement to the procedure. Teary and with a shaking hand, I signed the form and went back out to the ward.

Opposite my daughter was a young man who had a cage on his head; every so often the nurses would appear to turn something on the contraption, causing him to make a noise akin to a parrot. On our right was a lovely young boy who had gone blind due to a cancer not being caught in time. On our left was a toddler who seemed never to have gone home. He was fed by tube, required oxygen, and had webbed hands and feet. It was observing these children, and others on the ward, that made me suddenly realise that whilst a terrifying thing was happening, actually we had a lot to be grafteul for and I approached the situation with a change of attitude.

My daughter, who we were told could be in hospital for three weeks to three months, came out of her ten-hour operation and was walking after two days and going home in five! Lucky indeed. I felt very grateful that that was all that we had to face.