Running For An Angel | Chapter 3: Josh
“Aunty Heidi! Guess what?!”
My nephew Josh ran up to me, beaming from ear to ear.
“What is it Josh?” I asked in anticipation to hear the good news. Being naturally more withdrawn, seeing Josh so outwardly enthusiastic was a rare occurrence that took me by surprise.
“I have a new sister called Lilli, and she doesn’t have Angelman Syndrome!” he cried out.
“Why does this make you so happy Josh?” I asked, bending down to give him a big, congratulatory hug.
“Because when she’s older, she can play with me!” he replied, throwing his arms in the air with wild excitement.
As Josh celebrated with interpretive dance, his mother, Di appeared holding her newborn daughter. It was no secret that Lilli was breathtakingly beautiful. Like a doll, she had big round eyes, rosy cheeks and plush lips.
While everyone circled around Lilli in admiration, I found myself impacted more so, by the beauty of Josh’s happiness. The healthy birth of Lilli meant the world to Josh, because she would one day satisfy his deep longing for relationship and child’s play.
Josh was only two years old when Tim was born. In the early years, he was oblivious to the impact that Angelman Syndrome (AS) would have on his family and childhood. As Tim grew older, and as his special needs became more apparent, Josh had to learn to accept the pressures that AS would place on the family dynamic.
The exclusive attention that Josh once received, would now have to be shared with a brother that couldn’t walk, talk or feed himself. While Tim would receive praise for the most basic skills, Josh would be measured and disciplined by different standards.
When Josh was six, his school hosted a ‘Grandparents & Special Friends Day’. As Josh’s grandparents were unavailable, my husband and I took the day off work to attend the function as Josh’s ‘special friends’. When it was lunch time, we asked Josh to introduce us to some of his friends, but he preferred to sit alone with us, on the school yard bench.
“Do you like going to school, Josh?” I asked.
“No,” he replied quietly, busying himself with the contents of his lunch box.
Surrounded by the laughter and noise of children interacting in the playground, we sat with Josh in silence. It crushed me to see him like this. What was he thinking? Was he upset that his grandparents were unavailable? Was he being teased at school? Was he simply tired of caring for Tim, and in need desperate need of respite?
From a young age, Josh had to mature beyond his years in order to help his family care for Tim. He learned to handle regular house chores such as cleaning, unloading the dishwasher and taking out the garbage. Being his brother’s keeper, it’s been ingrained in Josh to keep a very close eye on Tim at all times. If Tim leaves the room, Josh is the first to automatically follow.
When his dad has to travel for work, Josh steps up to be his mother’s primary helper, doing everything he can to make her life easier. A memorable moment for the Backhouse family was when Tim did a poo that leaked all over the living room floor. While his mum took Tim to the shower, Josh swiftly wiped up the mess without complaining or being asked.
In spite of the daily challenges, Josh demonstrates to me, a child’s capacity for love and compassion. I love the way Josh has learned to forgive Tim whenever he pulls a little too hard on Josh’s hair. I love the way Josh slows down to include Tim in play, a trait that isn’t easy for a young boy with such a competitive and high-achieving spirit! Most of all, I love the way Josh respects and honours his brother, and in doing so, teaches others to do the same.
When speaking about the challenges of having a special needs brother, Josh emphasises that what makes him the most sad is not the additional responsibilities he has to bear, but the fact that he has to watch his younger brother suffer:
“It makes me the most sad when Tim seizures, because he might die.”
Over the years, Josh has witnessed multiple seizures, an event that is highly traumatic for a young child to watch. When Josh was only in year 1, Tim had a seizure on the footpath near Josh’s school. The episode delayed Josh’s pick-up time by 20 minutes, causing him to believe that his mum had forgotten about him. While Josh wears a brave face in public, he still gets anxious every time mum is late for pick-ups.
I often find myself feeling guilty at family dinners, because I am unable to give Josh my full attention. Despite my best efforts to acknowledge him at the dinner table, the needs of his siblings often override his longing for quality time. Our communication is often made up of half sentences and unfinished stories:
“How was school today Josh?”
“It was good! We built houses…”
“Mummy I don’t like this!”
“…a lot of the houses got blew over by the wind….”
“Tim you’ve already eaten. It’s time to play iPad!”
“…but mine didn’t fall down because…”
“Lilli STOP crying and finish your dinner!”
“…wrapped around a tree…”
“LILLI SIT DOWN NOW!”
As Lilli burst out crying in frustration, Josh quietly left the dinner table and returned with a cup of water for his little sister.
Josh describes any one-on-one time with loved ones as his ‘best day ever’. His happiest memories include afternoon tea with mum, rock-climbing with dad, and a ski-trip with his grandparents. We recently asked him what he would like to do if he had a whole day with just his parents:
“If I had a whole day with mum and dad, I would like to go out and have dinner!”
It’s clear that for the eldest child of a special needs family, enjoying an undistracted meal with mum and dad, is a luxury that you never take for granted.
The Backhouse Family Is Running For A Cure!
My nephew Tim was born with Angelman Syndrome (AS), a rare neurological disorder characterised by intellectual disability, delayed speech or no speech at all, seizures, a jerky walking style and a happy demeanour. Currently there is no cure.
The good news is that the Foundation for Angelman Syndrome Therapeutics (FAST) is working hard at finding a cure. There are currently 5 treatments in the pipeline to help cure AS. We believe that treatment could be possible in Tim’s lifetime.
In 2017, Di and Ed along with Ed’s sister, Jo and parents, Boyd and Mathilde, ran a half marathon and raised $16,725.17 for the work of FAST. As of today, they are still hoping for a cure and are requesting donations to be made to FAST here: https://cureangelman.org.au/
