Perspective: The new normal

By Claire Halford

Everybody hopes for a healthy baby when expecting a child. When asked, “What are you having?”, expectant mums and dads respond, “Oh, we don’t mind, as long as it’s healthy.”

I remember the first-trimester milestone with my firstborn son, Owen: I told the midwife that I had stopped smoking and drinking, ate a healthy diet, exercised moderately and felt pretty good about carrying a child. “That’s great,” she said in a reassuring tone. “After all, what can go wrong with a healthy female in a first-world country in professional medical care?” Little did I know that in about six months I would find out exactly what could go wrong.

My son’s birth, at full term, was incredibly traumatic. When he finally entered the world, he could not breathe. His brain was deprived of oxygen. He was resuscitated and ventilated, and for two weeks he was swapped between intensive care and special care. He had his first seizure at 1 day old. Until he was 2 years old, epilepsy invaded our lives all day, every day.

My son was diagnosed with cerebral palsy (CP) at 5 months. Cerebral palsy is a broad term describing a brain injury that can occur in utero, during birth or in early childhood. In Australia, CP is the most common cause of physical disability in childhood, and it is a disability that affects children in all countries whether they are affluent or poor. The condition mostly affects movement and muscle tone. Owen has severe CP: He cannot sit, roll, walk or speak.

Following his diagnosis, correspondence from doctors arrived in the post on an almost weekly basis. Initial letters delivered brutal realities, using medical-speak like ‘spastic quadriplegic’, ‘cortical visual impairment’ and ‘globally developmentally delayed’ – terms that were completely foreign. Every online search ended in ‘prognosis poor’.

In those early days, the only shining light in all this shocking darkness was Owen’s beautiful personality, infectious laugh, obvious engagement with the world around him and emerging handsome looks.

The first year was very hard. Anger – no, rage – and disappointment, devastation, loneliness and disbelief lurked at every corner. As the midwife had suggested, this wasn’t supposed to happen to me, to him, to us – this was a mistake! Friends and family could say or do nothing right, so I sought out others who were in a similar position, through support groups in my area and on the Internet.

Around the time of Owen’s diagnosis, I received a phone call from the university at which I had once worked, asking if I’d like to return to teach life drawing and design part-time. This job was to have been my ticket out of employment in retail; it was to have been something meaningful I could sink my teeth into. I declined. I had new work: Now I was a full-time caregiver.

It turned out that Owen had intractable seizures that did not respond to epilepsy medication. So we started 2-year-old Owen on a medical diet for epilepsy. The ketogenic diet is an incredibly strict, high-fat, low-carbohydrate diet. In a bizarre, unexpected stroke of grace, it worked. My poor suffering son went from having up to 200 seizures a day to almost none in the first three months. He has been virtually seizure-free since.

My partner and I have since had another son, a healthy toddler whom we love as dearly as we do Owen. He has brought us another perspective on life. Our family life has come to define us. The connection we have makes us stronger – to us, our lifestyle is normal; we carry on. It’s normal to drive all over town to do physical therapy many times a week; it’s normal to haul heavy equipment like standing frames and bath chairs from room to room every day. We know the children’s hospital like the backs of our hands and are familiar with many of the top specialists in various fields of paediatric medicine.

I call myself my son’s ‘personal assistant’ because he has a never-ending stream of paperwork, funding applications, doctor’s appointments, therapy sessions, check-ups and blood tests. I do most of his personal care, such as feeding and bathing. My partner helps when he can, but he works very long hours to keep us all afloat financially – so that I can care for Owen and we can have a comfortable life. We try to keep busy on the weekends, doing family things like visiting the farmer’s market, going out for Vietnamese food or checking out a kids’ show. Owen has a pretty fun and busy life for a 5-year-old. Yet no matter how good things can be, he has a long and difficult journey ahead of him.

We are hoping to place Owen in a mainstream primary school with the support of the Cerebral Palsy Education Centre, an early intervention programme. Owen has shown vast improvement in communication and movement since he started going there. He also attends activities at the Riding for the Disabled Association, which we both love. Over the years we have spent so much money and time on therapies and services – some of them good, others not that helpful. We’re learning as we go, and we’re getting better at making practical rather than emotional decisions. It’s still hard for us, though; I’m always fighting or waiting for something he desperately needs, sometimes for years.

The hardest battles have to do with people’s perceptions of Owen. I just want him to be treated and spoken to like a regular kid – but I also want him to receive special attention, and for people to be more patient. I want my friends and family to help him and engage with him more. Many of them tend to focus on how I am doing or on something else that’s less challenging than Owen’s very real problems. It’s hard for them, too – with everything he has going on, I sometimes think he should come with an instruction manual.

I’ve often feared that the things that defined me before I became a caregiver – work, creative interests and a social life – have been lost down a well of grief and exhaustion. More often than not, however, I feel like my life before Owen was born was comparatively superficial. Becoming a caregiver for my own child has been an overwhelmingly profound and joyful experience. We celebrate small accomplishments feverishly, and my expectations of what success entails have been smashed and rebuilt into something beautifully simple: Owen sitting unaided for five seconds, or, as he watches the Paralympics on television, hearing the words ‘cerebral palsy’ and ‘champion’ in the same sentence. I have grown through caring for Owen – above all, perhaps, in my ability to empathize.

I have learned that no matter what a child can’t do, she or he will still always have an identity and a character that will leave a distinctive brushstroke on this world. If we want to be an enlightened society, our job is to believe and encourage. Only then can children who have such difficult limitations grow. And then we can all come to see that things that ‘go wrong’ are sometimes just different – and often amazing.

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