Our beautiful boy Rhys
It’s hard to know where to begin to tell Rhys’ story, especially because each and every day he warms our hearts and makes us feel like he has been around forever! Rhys will turn six in December which just blows my mind; my gorgeous little boy on the precipice of being in Grade 1. He is such a heart-warmingly happy boy who is loved and adored by our entire family, not least of all by his two beautiful sisters, Kiera aged 8 and Ellie, 2. He started school this year, attending Glenroy Specialist School, and has really come a long way in his socialisation and is known as the ‘cheeky boy’ by his teachers and teacher aides. Although he is non-verbal, he can tell you so much purely with his smile and the raise of his eyebrows.
He was born at 38 weeks because his growth ‘in utero’ had stunted though the placenta was still functioning. What began with a failed hearing test soon saw us in the office of a paediatrician who had noticed his low tone, and inability to “fix and follow” visually. As I’m sure many of you can relate to, his first year is quite a blur, with constant appointments with varying specialists as well as juggling a household and his big sister. Throughout the maze of doctors, specialists, physios, OT’s, speech, and thousands of dollars out of pocket spent on various genetic tests, we were advised that Rhys is most likely suffering an ‘unknown recessive genetic disorder’ and the risk of it happening again to further children came in at 1 in 4. It took four years for us to feel ‘ready’ to take that risk, as we had always wanted three children, and we were overjoyed to welcome the arrival of a healthy girl named Ellie, in 2012.
Rhys’ main challenges are both physical (profound hypotonia, low vision and a mild hearing loss) and cognitive, being that he is non-verbal and requires caregivers to interpret his wants and needs. He is now PEG fed and is on numerous meds to make life a little more comfortable. He has a really cool wheelchair that has made such a difference in our lives, in that it allowed him some element of ‘independence’ by being able to travel to school via bus, without his mum; a period of adjustment that was much harder on me than him! He really enjoys school and interacting with his fellow classmates and is the social butterfly of his class, flirting with all the teachers and teacher aides! He loves swimming and is lucky to be attending school at Glenroy where there is a hydropool on site that forms part of the curriculum for two terms a year. Music is another favourite; any percussion instrument he can get his hands on will form entertainment for him for ages!
I can now tell his story without crying, which has taken quite some time I have to say! I have learnt a lot about myself and how true friends and family can really help you through the tough times. I have also met some great people (who have become lifelong friends) at a playgroup I founded back when Rhys was 2, called Able Hearts. We meet weekly to let our kids play and get to swap stories, have a laugh (or sometimes a cry, if you need it!) and just chill out, and I still attend each week with Ellie, despite Rhys being at school, as the other families now feel like part of my ‘family’. So this is not only the story of my beautiful little boy, this is a shout out to any families in Moonee Valley that would love to join a playgroup, with like-minded people and kids; please please drop me a line, I would love to hear from you!
Melissa Paterson – 2014