In December 1996, when my son Zac was six months old, I noticed something wasn’t right. He would play with toys on his left side and in front of him with his left arm, but it was as if his right side wasn’t there. When I took him to see the baby nurse a few weeks later, she did her best to hide her alarm but suggested I see a paediatrician as soon as possible. What was wrong with my gorgeous blue-eyed handsome boy? I thought.
For the next six months Zac and I endured countless visits to the physiotherapist and paediatrician – he screamed and I tried desperately to keep it all together.
Then, at 12 months, Zac had a CT scan to see what was going on. The scan results were conclusive – my beautiful boy had hemiplegic cerebral palsy. I was stunned. I didn’t even ask the doctor what cerebral palsy was, and he didn’t pause to explain. Driving home my brain screamed a million questions: what did this mean? Would he walk and talk? Was it my fault? What do we do now?
This wasn’t what I had planned for my baby. I’d planned football in the park, fun holidays, water skiing up the river and siblings. All this seemed so far away from what we were now faced with, whatever that was.
I quickly learned that cerebral palsy is a disorder that affects muscle control. The scan showed scarring on the left side of Zac’s brain that was caused by a stroke when he was in utero. Zac’s entire right side was affected. His muscles and bones were smaller and weaker on his right. His reaction times were slower, and his balance was affected, but most concerning was the limited function of his right hand.
Soon after that first CT, his paediatrician put us in touch with an organisation that provides children’s disability and developmental services. So began what would be years of occupational, physio and speech therapists, hydrotherapy, playgroups and many hours of assisted activities to encourage Zac to use his hand. He has endured hand splints and uncomfortable leg orthotics, Botox and serial casting and surgeries on both his hand and leg.
But, ever so gradually, Zac began to set his own pace. When he was 11 months old, he began to crawl by propelling himself along with his right leg dragging behind. He walked at 19 or 20 months, and even though his gait was uneven and one foot was turned, it never stopped him doing anything. Milestones were reached and we celebrated each one. Our hope grew more and more confident. Through all of it Zac continued to smile, laugh, charm his therapists and rarely complain.
I made a vow to stand back and not become over-protective of Zac. Instead I would treat him the same as I would any child. I watched as he battled more falls, cut open knees and knocked out teeth because of his tricky balance issues, and felt proud as he learnt to not let these falls hold him back. Along the way he sorted out ways to cope and became a wiz at solving his own problems. Zac was clever at working out ways to use his right hand to support objects so he could get tasks done. I learnt never to assume he couldn’t do something.
All my fears and worries for my baby were of no consequence. Instead of shrinking our world, it has expanded it to include experiences I never could have imagined were possible. I controlled my fear of him getting hurt playing sport and let him follow his passions. He played football when he was eight, before starting athletics at 11, where he found his talent. He especially excelled in long jump and the 100m, 200m and 800m sprints. As a para-athlete he has even represented his state six times at a national level. Then in 2011, he became the Australian long jump record holder in the under-13 division. Today Zac’s passion is cycling, where he is in training with the South Australian para-cycling squad at the Super-Drome in Adelaide for the 2020 Paralympics in Japan. If I had been too afraid to let him play sport, he would never have had the chance to travel, compete and meet amazing people from all over the world.
In June, Zac will turn 19. Earlier this year, he started a Bachelor of Mathematical Sciences (Honours) at Flinders University. He has taught me about open-mindedness, determination, perseverance, and love. He inspires our family and I am thankful for the unique journey we have shared together. My parenting journey with Zac wasn’t what I expected, but I am so grateful he chose me to be his mum. He is my most incredible gift.
Catherine Whelan is a 44-year-old magazine editor and mother of three. In her spare time she enjoys holidaying in her caravan with a large stack of books.
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