Life can often be described as a bittersweet symphony. Tragedy and comedy. Swings and roundabouts. The rough with the smooth...
Between 1987 and 1991, I had three sons. Christopher was born on 18 April 1987. A feisty and cranky little premature scrap of humanity, he survived crisis after crisis before succumbing on 5 June on that year. Never leaving Neonates at the Children's' Hospital (then PMH), he fought so hard to stay alive. Some babies die.
Devastation doesn't even come close to what I perceived as failure. I desperately sought redemption to carry and deliver a healthy baby to hold and cherish.
Getting pregnant was never an issue for me. Within two months of Christopher's death, I was carrying identical twins. Unfortunately, my stars in the night sky, Zoe and Melanie were both stillborn in January 1988. My self-belief was once again severely shaken. I felt that God had totally deserted me. To try again or not? We decided to have one last roll of the dice.
After an emotionally traumatic and difficult pregnancy, Callum Timothy was born - prematurely of course - on 14 April 1989. Noel French, our superb and caring Neonatologist, fought to keep Callum from being ventilated during his first twelve hours of life. This complication would have led to Callum being transferred to the Children's Hospital, and Noel, knowing my history, was determined not to separate Callum from me. He won. Callum was pink, roaring and he lived.
He became the happiest baby, thriving after a slightly dodgy start. He smiled with his whole body, always delighting in our presence. Callum provided me with the unconditional love that I needed, just by being himself. I absolutely adored him from his birth. Callum's personality and development were both ridiculously routine, which gave me endless hope as his very anxious mother.
Alex Christopher, named after his brother, was born on 11 April 1991. Whilst in utero, Alex was diagnosed with a very complex heart defect, similar to Christopher's right sided heart lesion. If Alex had been born twenty years earlier, his survival would have been very unlikely. With advances in paediatric cardiology, babies who may have had a terminal diagnosis were living - not just only into childhood but into adulthood.
Tricuspid Atresia, previously a killer of infants, was subdued by a Fontan Procedure, essentially a palliative surgery that bypasses the right side of Alex's heart. This was a three stage operative sequence beginning when Alex was eight weeks old and culminating just after he turned three. Alex became The Boy Who Lived.
An undiagnosed stroke after the second stage of the Fontan Procedure, plus his Autism diagnosis defined his early childhood. All the tubes inside Alex's head were narrow, resulting in multiple surgical interventions to remedy those issues. These were often very traumatic events as Alex was non-verbal until he was four years old. His Acquired Brain Injury (only confirmed by MRI when he was thirty years old) added processing and language deficits to those that he was already experiencing through his Autism Spectrum Disorder. He also developed physical disabilities as a result of the stroke - right sided weakness, low muscle tone, scoliosis and foot abnormalities.
Alex is our Autistic Superstar. He turned thirty - three ten days ago. He approaches his life with optimism, cheerfulness and gusto. He attends a gym with physiotherapy support and has an active social life. He is surrounded by an excellent allied health team and his Support Co-ordinator at Alinea, which also manages the Paraquad Cafe, Alex's workplace three days every week. He has fantastic specialists who monitor his asthma and ENT (Ear, Nose and Throat) issues. He has been with the same GP since he was six years old. His neurologist may not have the greatest of bedside manners, but he has provided us with significant information about Alex's ABI. He is under the care of the Adult Congenital Heart Disease Unit for his long-term cardiac monitoring. I am so bloody proud of my lad.
Callum's life has not been handed to him on a plate either. A bright and inquisitive child, he blossomed at daycare, which was just as well as he spent much of his early years there whilst Alex was attending appointments with me or in hospital. Junior primary school still met his needs. However, upper primary and high school were both incredibly tough for him. He was harassed by bullies, so much so that I became beyond exasperated with the private Catholic school he attended until Year 10. The public school that I chose to move him was not totally ideal - just somewhat better. What saved Callum's well-being was his ballroom dancing family - ever constant and non-judgmental. Then, at university, he rediscovered his social status.
Fast forward to 2024. Callum turned thirty-five on 14 April. He is a Performing Arts Specialist teacher at a large northern suburbs primary school. Happily married to the gorgeous Bronwyn, they are the parents of our two divine granddaughters - Imogen and Violet. Immy started kindy this year. Violet has just turned one. These four members of our immediate family are just so adored. We are very lucky to have this wonderful foursome in our orbit.
My two boys fill me with delight and pride. They have both overcome immense challenges to prosper as themselves. I could not be happier as they continue forging their lives with confidence and enthusiasm.
How lucky am I...
