Simon was born with a tracheoesophageal fistula, a congenital abnormality – known in medical terms as ‘a TOF’! Although surgically repaired at 7 hours old, there were other complications including severe laringomalacia (sloppy trachea), and we subsequently lived through some nightmarish months during which we revived Simon over 30 times by mouth to mouth resuscitation! At 5 months old, tracheostomy surgery offered a simple solution to a very complex and diagnostically difficult problem, basically a ‘sloppy’ area in his trachea, and ‘we’ lived with this for approximately 8 years. It was only during the later stages of this period that surgery involving teflon implantation became available, and it was only during this surgery that the specialists were finally able to diagnose the total absence of 4 or 5 cartilaginous rings in the trachea – a further complication of his original congenital impairment.
Fortunately, the nature of the problem meant that Simon was able to pass some air through the larynx/pharynx, and although unable to vocalise normally from 5 – 12 months old, he certainly then made up for lost time! With much determination, that Simon, and the family would have a ‘normal’ and holistic lifestyle, I endeavoured to develop and integrate a wide variety of opportunities for him, minimising a medical focus and any associated hospitalisation. I advocated for and achieved integration into mainstream kindergarten and school, despite numerous obstacles – at this time in the late ‘70’s integration and normalisation were not recognised concepts. And there were no Carer Respite Centres!!!.
Family, friends and teachers were encouraged and facilitated to support us in numerous main goals, and were superb, many taking quite unsolicited initiatives to assist in achieving the balance between sufficing crucial medical needs and ‘usual’ childhood experiences. For a long period, we did not know what the future might be, and Simon was encouraged to develop a variety of interests such as music, puzzles and chess, along with good listening skills and concentration. As the issue of swimming loomed large, we initiated swimming lessons with the assistance of skilled swimmers, kick boards and floaties – and to Simons joy as a six year old, and also that of the crowd, he won the ‘cork scramble’ when a teacher piled many of the corks onto his floating mat.
As much as possible, decisions about or for Simon were always made inclusive of Simon. He was encouraged to identify his own needs, to make choices and decisions and to be responsible for the consequences. He developed an acute and quirky sense of humour, continually maintained an outward and easy personality, and to our knowledge, never used his tracheotomy as an excuse for not participating in life. He gained excellent school results, played clarinet to Grade 5, was Vice Captain of the school Cross Country team and in the Associated Schools winning Cross Country team 1993, and cycled for pleasure.
Simon graduated with Honours from University of New South Wales as a Computer Engineer, and is highly regarded worldwide particularly in Linux computer circles for his contributions, papers and creative thinking. Through his work Simon lived in the USA for 2 years, and then Japan for 15 years. He is married to Chizu and they have 2 beautiful children Hikari and Hana. Amazingly, he was 40 last November 2015.
This is a positive portrait of a story that shares much heartache including my divorce, choosing to remain living in Sydney for all the right reasons but always longing to return to Melbourne for all the other right reasons. Simon’s younger brother Michael once commented that ‘ no-one ever asked me what it is like to have a brother with a tracheostomy’! True, but we all worked together as family, never thinking about our caring roles. Only now I think – I was a carer, female, divorced, out of the workforce and a career for 10 years.
Reflections have at different times brought intense relief, vindication and even elation, occasionally heartfelt sorrow and regret. Several months after Simon’s major repair surgery (at 8 years), a nursing friend who had known the family all this time, and who had on many occasions been involved in assisting with care, asked Simon what it was like to ‘no longer have a trachy’. She was somewhat amazed when he replied “ Not much different really”. I can assure you it was quite a different story for his mother!!
At Simon’s wedding I said a few words – ‘I want to say my thanks for all the pleasures, laughs and good times, the tough times and the challenges. For all you have taught me about life and how to prioritize what really matters. For your tenacity to achieve your best with great style, especially in times of adversity’. Mostly through the lessons learnt during Simon’s early years, I believe I have gained a greater affinity for what it might be like to personally cope with a major impairment; and certainly I have valuable life experience because I cared.
Revised August 2016 from previous notes dated 1999, 2006.