Here are some of the highlights from the team sheets:
Team Fontan: A special netball team
We have many different people on our teams. These are the people who help us to rebound.
We’ve got a pretty strong coaching staff. These are the people who we’ve learnt the most from.
Our grandparents, mums and dads are there in the coaches’ box.
And our doctors are there too.
Most of the time we hear encouragement from the coaches’ box. Occasionally, though, coaches tell you off. For instance, my doctor told me off about my piercings and tattoos!
We’ve also learned from other people we have met along the way, other people’s parents, other patients.
‘My cousin Angus has been through multiple operations. He’s like a coach with inspirational words to me. He taught me self-confidence’
Some of us named people who we remember as our coaches:
‘One of my best friends who passed away is a coach for me. Her name was Bethany. She was here in the hospital for a long time. Throughout the years I never saw her upset. She was always caring for everyone else. Throughout my illness I take a lot from her and the book her mum wrote which is called ‘Be blessings’.
‘My brother Patrick is still a coach to me. I have a tattoo of his name.’
And one of us placed her dog, Flinders, in the coaching box:
‘Flinders is the sweetest creature ever, with really short legs (cross between a collie and a sausage dog!)’
And someone mentioned a very special fish who is an inspiration because this fish managed to survive when all his buddies didn’t, after Mum cleaned the fish tank with bleach!
Some of us coach ourselves.
And we learn from the internet, teachers, and particular books like ‘The book thief’.
I told you we have a strong coaching staff!
Our defensive unit helps to protect us. First thing we mentioned were our treatments. They are pretty important!
We have different people who are guarding our goals, who are protecting our dreams. There are doctors, surgeons, psychologists and coordinators like Ann who are there for us whenever we have a problem, who will make sure we get the best treatment.
Some of us use music as a form of defence, different music to protect different dreams. We reckon songs can change the way you think. My guitar is definitely in there.
We acknowledged our parents and stepparents. And our siblings, even if they are younger than us, they might say ‘I’ve got your back’.
In the end, though, you also have to protect your own dreams. It’s up to us to say yes or no, to make the final decisions.
Your midfielders carry your team in the premiership quarter. They are wherever the ball is. Our mums are often right here. They carry our teams.
Sometimes dads do too.
Some of us put our dogs or cats in the midfield too: ‘My dog knows the situations I am in. He jumps onto the bed or looks from afar. He understands’.
It’s important to have people who help us to score goals and move forward:
‘My best friend encourages me. If I have to have a blood test she forces me!’
‘My brother, Matt, he helps me to laugh at everything’
There are also people who are no longer alive who mean a lot to us.
‘Our friends in heaven help too. My friend who passed away, I think, if she can do it, I can do it and then I take the next step’.
‘Matt Robinson was an Australian para-Olympian: He took me under his wing. He helped me look at things differently and got my confidence up heaps. I’ll always remember him’.
And one of us spoke about Margaret Drury.
‘Margaret Drury was an Irish convict. Her ship sunk and she was one of only six survivors. She was my great, great, great, great grandmother. There’s a long history of strong women survivors in my family.’
We decided that food and sleep are two crucial team members. We decided they needed to be everywhere over the field!
Speaking of food, we wanted to acknowledge the sweet ladies who bring in the food when we are hospital.
Sometimes life is like a baseball game
Sometimes life is like a baseball game. If you have a chronic health condition, it’s like a curve ball.
Having an invisible disability can also be like a screw ball.
And people’s expectations of you, they’re like a fast ball or a knuckle ball.
Where do we have home-ground advantage?
There are different places where we feel most ‘at home’: From our bedrooms, to the MCG, to sitting at my piano, or wherever there is wifi!
There are other places too:
- The minute I walk in the door here at the RCH everything goes away. I feel really welcome here. In the ward, people remember me by name. It’s somewhere I feel safe.
- The fridge
- My bed: a couple of us agreed with this one … in fact one of us said ‘My bed is my everything!’
- At my grandparents’ house
- Wherever there are beanbags
- On my motorbike – WR250
- For me, it’s being in the bush
- Whenever I am with my specialist (she’s beautiful)
- When we go to the snow at Mt Bulla
- Wherever my nephews and nieces are … the oldest is six and the youngest not even one.
- Or being behind the computer or the console screen: ‘When I am sitting on my bed, beating someone at a game when they are sitting on their bed in some other part of the city’.
- The local Macas (MacDonalds) also got a mention!
Fans in the stadium
There are many people who are cheering our team on:
- My grandmother is my number one fan and my best friend. She is always there and always feeding me!
- Our friends … they are all important
- Our neighbours
- And SOME teachers. (We were going to say teachers in general, except that one team member poked her tongue out when teachers were mentioned …)
There are many organisations that also support us, including Donate Life, Heart Kids, Starlight, Kidney Care and Film Life (one of us actually just directed and starred in their own film!).
- Some boyfriends were mentioned too.
- And other people’s parents
Other kids who are also going through this are cheering us on. But also, maybe we are giving them encouragement too. If we can do this, others can. I want there to be a cure for my two blood disorders because if they can cure mine they can cure it for other kids.
We named the nurses and social workers and the rainbow dog.
One of us mentioned the nice guy who works in the coffee shop. And the clown doctors. And CHiPS (this is a youth organisation involving children with chronic health conditions).
There are a lot of people around here who cheer for us.
First aid kit
On the hardest days, we have to turn to our first aid kits.
- We turn to our friends: One of us said they just talk in person, face-to-face. Others said they use the phone, Facebook, Twitter, Tumblr, Snapchat, or Craigslist if you are desperate!
- Some of us play games, Ps3 or Xbox. When you are away from your mates, multi-play games can be great. Some of us plays Sims too … creating a virtual family and running their lives.
- Ice-cream, water, fruit & nut bars.
- Hibernating … with sleep and chocolate!
- Working on my car, Bruce, it’s a ute with a manly name!
- Getting out and heading to open space
- Coming into the RCH just for a visit (when you’re not sick)
- I guess we should mention medications too. When I go to the pharmacy they know me by name!
- Your favourite subject can bring relief. It’s like it’s peaceful when you do it. Some of us like media where we analyse movies and make productions. Or literature. Some of us like history.
- Playing and listening to music
We also talked about how TV shows are part of our first aid. These shows are perfect for ‘when you need to get out of your life for a while’:
- Pretty Little Liars (one of us if up to Season 5)
- Grey’s Anatomy (one of us is up to Season 10)
And hospital reality shows too, like RPA or One born every minute.
When I’m watching Grey’s Anatomy suddenly I’m like ‘I’ve seen that!’ or maybe, ‘I’ve had that!’.
And one of us spoke about playing with their siblings: ‘I have a two year old sister. If I have a tough time, to see her face of happiness … it makes a difference.’
There are some days when we just need a bit of space. Days when it seems everyone wants to know how you are. They want to know because they care, but sometimes we need crowd control. Someone who can say to the others ‘look, not today’ she just needs to rest. Or someone to help us to know when it’d be better not to go out with friends and just to have an early night. For some of us, our dads are good at crowd control. Others of us said we are going to try to hire a crowd controller.
Who are the people who tell the best stories about our life? For some of us, this might be a family member or friend or a worker who knows us well. One person said ‘My grandfather because he never let the truth get in the way of a good story!’
But one of us said, ‘I’m the best commentator for my life. I can talk it up. I can tell the stories in different ways depending on the situation.’
What do our teams stand for?
When we think about what our teams stand for, there are many things that are important to us. We want our team to gel together, to work together. And there is something else that we believe in:
This team believes in not having prejudices. As we spend a lot of time in the health system, we’ve learned that people might look pretty healthy, but you don’t know what they are going through. We try to take this knowledge out into the real world. We have an increased awareness when we’re talking to someone that they might not be all that they seem. There might be something special about any person that we meet. So we believe in not making prejudgements, not having prejudices and in making connections. We remember that there might be something special about anyone we are talking to.
We have three mottos:
‘You miss 100% of the shots you don’t take’
‘Life’s a garden, dig it’.
And finally, ‘hustle’. This is what teammates say to each other on the basketball court. It means work hard. That’s what we do.
Our theme songs
We have pretty diverse theme songs – different groups talked about:
‘Stronger’ by Kelly Clarkson – What doesn’t kill you makes you stronger
‘Brave’ by Sara Bareilles
‘Living on a prayer’
‘Don’t Phunk with my Heart’ by the Black-Eyed Peas
‘Not giving in’ by Rudimental.
But others talked of Chopin, Beethoven, the Collingwood theme song, One Direction, Eminem, and Delta Goodrem.
I tell you, we have pretty diverse theme songs!
Melbourne Heart (young people with heart conditions)