Running For An Angel | Chapter 5: Ed
“Tim! No touch!”
The house was filled with Ed’s friends who had gathered to celebrate his birthday. Every surface was covered in food, drinks and sweet desserts that would not go well for Tim’s allergies. As he charged towards the kitchen bench with arms outreached, I quickly intercepted.
“Tim! You can’t eat that!”
Shrugging me off, he proceeded to another table where there was a fruit bowl filled with dragon fruit and bananas.
“TIM! NO TOUCH!”
He launched, and before I could stop him, managed to squeeze a banana open. He looked up at me, and burst out in laughter. Like most children his age, Tim knows how to push a boundary, and his hearing can sometimes be shamelessly selective.
“No more! This is the last one ok?” I replied in defeat, rubbing his thick mop of hair.
For Ed’s birthday that year, our family took turns being on ‘Tim Duty’ which required supervised play so that he wouldn’t hurt himself. This gave Diana the space to host the party, and Ed the opportunity to socialise with his friends.
“Tim, what do you want to do now?” I asked.
Tim took my hand and led me into the backyard where his father, Ed was doing layups with his friends.
“You want to watch dad play basketball?”
Tim flapped his arms and nodded his head. I took his hand and led him towards the courts. As we watched Ed and his older brother, Josh, play basketball with all of Ed’s friends, I couldn’t help but wonder what Tim was thinking and feeling.
Did he feel left out?
Was he jealous that he wasn’t like his brother Josh?
Did he long to participate with all the other men at the party?
“Hey Tim! Watch this!” Ed shouted, while nailing a reverse layup to the claps and cheers of his friends.
Although Tim stood silent on the sidelines, his giant grin said it all. His dad was his hero. With child-like anticipation, Tim broke free of my grip and launched towards the courts for a reassuring cuddle from his dad.
If there was an explanation for Tim’s perseverance and determination in life, I would have to pin point it to the example of his father. In the eight years that i’ve known Ed, I am always surprised by his endless abundance of zest and energy. Despite tackling the daily challenges of AS, Ed loves life, and has an infectious ability to inspire gratitude in the hearts of all who meet him.
According to his friend Ben Jeffries, Ed’s unique bond with Tim has the power to redefine happiness and success:
“I played basketball with Ed for 3 years, and when Tim came to watch, it would lift Ed’s game to another level. I remember a game that was very physical with both teams beating the crap out of each other for almost an hour. At the end of the game, both teams were walking off, but Tim came across the court with a massive smile on his face. The entire mood of the night changed as we all stopped to watch Ed and Tim embrace.”
“Win, lose, or draw it doesn’t matter because at the end when Tim comes across the court with his infectious smile and gives Dad a cuddle no one cares about the game. Ed’s effort not just for basketball, but for life, family, faith and Tim is inspirational.”
Although Ed is known for his positive nature, like every special needs father, he grieved over Tim for many months when he received the initial diagnosis:
“It hit me like a tonne of bricks. I expected Tim to be just like his big brother; healthy, strong, and able to walk, run and grow up into a full and capable man who had a typical job, wife and kids.”
After the initial processing of grief, Ed has been able to readjust his expectations for Tim, and has channelled all his energy into maximising his son’s quality of life, one step at a time.
“Diana and I plan to help Tim experience anything that’s possible for him. He’s been cycling, running, swimming, and I plan to take him skiing in the next couple of years. We’ve thought hard about putting him into a mainstream school, and are investigating sports he could sign up to in the local community.”
“I take him on runs in the pram and read him books. On weekends he loves going on train rides to Southbank. We’ve done a sunset running race together and broke 53 minutes on the 10km.”
One year, the Backhouse family went on an overseas holiday and Ed had to change Tim’s nappy on the plane. Being six-foot tall, Ed had to squeeze both him and a toddler-sized Tim into a tiny cubicle. As Tim wriggled and struggled on a change table sized for newborns, poo went flying everywhere.
When I first heard this story, I thought that Di and Ed were crazy for even trying to travel with Tim. Flying with children is never easy, but their determination to maximise Tim’s life, epitomises the cost of sacrificial, parental love. They do ‘crazy things’ because they don’t want to put limits on what he can achieve:
“We’ve explored Taiwan, Japan, Hong Kong and the US with Tim so he can experience those foods, sights, smells, and cultures. These trips were not easy due to lack of sleep, physical challenges and very tough plane flights, but it was important to us that Tim experiences them fully.”
Besides being a special needs father to Tim, Ed works full-time, is an active member of his local church and volunteers on the board of the Foundation of Angelman Therapeutics, Australia. Although Tim is 7 years old this year, Di and Ed still wake for him 2 or 3 times a night before marathon training at sunrise. How he manages to do it all is a mystery to most people, but he gives credit to the hope and strength he finds in Jesus:
“I was not always hopeful about life. I was quite the opposite and was always focused on me and what I could get out of life individually. During my late teens when I was figuring out what life is all about and whether “God” is real, I looked at all the multi-religion evidence and decided to take a punt that Jesus is real, and the Christian bible is true.”
“Now as someone who knows and follows Jesus, I have been given a new perspective on life and a real sense of hope. It doesn’t mean everything will always go well, and it doesn’t mean I won’t struggle and feel pain, but it does mean in the good times and the bad I can rely on God to get through life and unlike humans, he won’t let me down and will always be there for me.”
Being a special needs father has come with extreme challenges including life-threatening medical situations, frequent hospital trips, and physical work which causes deep weariness. This fatigue can be a source of conflict and increased arguments in marriage, but over the past 7 years, I’ve seen their marriage flourish as they have learned to love one another with more patience and forgiveness, inspired by their mutual faith in Jesus.
As someone who gets to observe the Backhouse family in the day-to-day, I have come to appreciate the transparency of their lives. In a world that is so exhaustingly filtered, the Backhouses have shown me that real-life can be messy, and that’s ok. It’s ok if your house is not always clean. It’s ok if your marriage isn’t always picture perfect. It’s ok if your kids don’t meet your expectations. In the messiness of life, we can have peace because according to Ed, God is forgiving and in control:
“Jesus has taught me a lot about patience, suffering, forgiveness, hope and love in ways that help me try to model this as a dad. I’m not perfect and sometimes I get frustrated or angry, mostly due to exhaustion, but I can be transparent before God and others in my mistakes and in my wins. Because I am forgiven by God, I am released to live life to the full without baggage and with nothing to hide.”
I often tell people that God knew what He was doing when he gifted the Backhouse family with Tim. Their family has inspired me to be more inclusive and compassionate. Tim’s determination to conquer the ‘impossible tasks’ of walking, feeding and using a toilet, motivates me to wake up every morning and to give every opportunity my best shot. Their love for life, fosters gratitude in mine.
When I recently asked Ed what he’s learned from being a father to Tim, he said:
“Definitely unconditional love. When I walk through the door from work, he’s the first to greet me with great enthusiasm. He has also humbled me when I see him achieve wonderful things despite the obvious challenges. I’m not perfect but he’s my #1 advocate.”
Ed Is Running For A Cure This Sunday!
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/
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Feature image supplied by Rachel Spearitt and modelling Multiculti Co fair trade clothes from Senegal.
