Running For An Angel | Chapter 1: Tim
“Hey Tim! How are you? Did you have a good day at school?”
My nephew looked up from his iPad, and showed off his cheeky wide grin.
“Can I get a cuddle?”
Bouncing up and down on the couch, Tim indicated to me with flapping arms that he recognised who I was, and was ready for a loving squeeze from Aunty Heidi. As I went in for a cuddle, I tripped on the edge of the carpet, and he burst out in laughter, spraying my face with soggy, half-eaten banana.
As his relentless giggles echoed across the entire house, I couldn’t help but laugh along. My nephew has the best and quirkiest sense of humour.
He grabbed my hand and led me to the kitchen where his mum was preparing dinner.
“Are you hungry Tim?” I asked.
He nodded and flapped his arms.
“Well you have to wait. How about a drink of water instead?”
I brought over a cup of water which he received with steady hands. He lifted the cup to his mouth and finished its contents without spilling a drop.
“Amazing job Tim! You’re so clever!” I gasped, as I watched him quench his thirst, independent of my help. Only three years ago, Tim was still learning to walk and balance on his own. His jerky movements were the cause of many falls and busted lips during family dinners.
“Dinner is ready Tim!”
Tim’s mother, Di popped a plate of steamed ginger salmon and stir-fry veggies onto the table. She carefully hid an anti-seizure tablet in a piece of pumpkin. I marvelled at my sister in law’s culinary skills. Despite being allergic to almost everything we enjoy, Di always manages to whip up a creative and delicious anti-inflammatory, gluten and dairy-free meal for Tim.
“I hate that he doesn’t get to eat what the rest of us are eating, I don’t want him to miss out!” she would always say, lovingly and protectively.
I watched Tim intently as he used every ounce of concentration to hold a spoon, and to guide dinner into his mouth. Seeing him exhaust himself to do something so simple, is always so humbling. While I give up on things so easily, Tim works so hard, every day to achieve ‘impossible things’.
Although on face value, Tim appears different to other boys, in many ways he’s very similar. He’s just another young boy who loves trains, buses, going to the playground, swinging on his hammock and watching videos on his iPad. He just takes a little longer to process things, but those who are patient enough to spend time with him, always walk away inspired.
In our culture that is so time poor, Tim has taught me to slow down, to laugh a little, and to delight in simple things. In our world that measures human worth by performance, Tim reminds me that in the eyes of God, every human has worth and dignity.
—
“Hello everyone!”
The front door opened and Tim’s dad, Ed walked in. As always Ed was beaming from head to toe, despite a long day of work on barely any sleep. While Tim’s siblings remained glued to the couch with eyes fixed on the TV, Tim let out a cry of joy, and rushed towards his dad with open arms.
“Hey buddy! Wow you’re getting so heavy!” cried Ed, as he picked up his six-year-old son, wary not to pull his back for the hundredth time. The highlight of every family dinner is watching Tim embrace Ed with exuberant joy. I am yet to meet a child who is more appreciative of their relationship with their dad.
Although Tim cannot speak, I know that he is a boy who feels things immensely. He knows when he is being left-out and when people show him love. I see the frustration on his face when he is dismissed or misunderstood.
As a writer, I can’t imagine a life where I couldn’t use words as a means of expression. Words give me the ability to make friends and share stories. I use words to communicate my interests, preferences and mood. I use words for prayer, for texts, and for cracking jokes. My words are a means for connection, which is why Tim inspires me with his perseverance to express love and gratitude using non-verbal cues.
—
As Tim finished up his food, we asked him to sit to the side with his iPad, while the rest of the family gathered for dinner. He complied, but every now and again he would wistfully look up, as though to check that his loved ones were still around. As the rest of the family tucked into our dinner, we suddenly heard a ferocious gurgling.
“WHERE’S TIM!?”
We rushed towards the couch to find Tim convulsing on the floor. His eyes had rolled to the back of his head. Despite being on medication, Tim was having a seizure. After what felt like the longest 2 minutes of our lives, Tim settled and stirred, clutching his head.
“Tim are you ok?! Are you in pain?! What do you need!?” we all asked.
He looked up at his family with helpless eyes, but couldn’t respond.
While Ed called the ambulance, Di clutched her son, courageously trying to hold back tears. What did Tim need? Did he eat something that he wasn’t supposed to? Did he feel unwell that morning? Did he know that a seizure was coming and had tried to let us know?
In amongst the chaos and confusion, the ambulance came and took Tim away.
—
Di & Ed Are 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/
