for young people with childhood heart disease.

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I know so much now I wish I knew then …

30 October 2015  |  Sean Griffin  |  3 Comments

When I was at high school I’d sit there watching my mates and twin brother tearing around playing footy, slam dunking a basket and wonder: “What’s wrong with me, why can’t my body do that?”

Growing up and watching everyone around me play around like crazy was a little depressing and then there is the scarring and the bullying not to mention feelings of uncertainty, sadness and difference.

Man, the fact is that some days, it felt like being a teen with a heart problem was almost as tough to sort out as having a heart problem in the first place.

If you’re at high school and thinking you’ll never find anyone who gets you or anyone who knows what you’re going through let me say – I’ve been there, I’ve felt that.

Thank goodness for cricket – which sustained me and was my true joy through primary and high school.

Thank goodness also, that life is full of surprises and people do come along who get you, who accept you and who make you feel happiness that doesn’t necessarily feel possible right now.

In lots of ways that’s the end of my story so let’s backtrack to 1988 – I’m born not only with a heart problem, or to be specific Tetralogy of Fallot, but also very premmie with severe lung disease and so, the fighting to survive, the medications, the hospital visits and treatments start pretty much the minute air hits my body.

I’ve been to hell and back with the operations and treatments I’ve had. There have been shunts, corrections to my open heart surgery, artery corrections and openings and I was one of the first kids in Australia to get a pig’s valve put in back in the early 2000’s. You guys know the drill – it’s vital and life-saving but pretty much no fun.

Then there are the glimmers of hope. I remember sitting in hospital and striking up a conversation with a dad who was scared his son might not make it through his heart surgery. I shared my story with him and explained to him that his son would be okay and that he would be a happier kid, to be able to run and play and I saw him relax and understand the opportunities this would give his boy.

So, cricket was my passion at school it’s been great to discover in my 20s that cricket is certainly excellent but there is a world of amazing people and things like poetry and photography out there just waiting to be discovered and explored.

The first part of moving on to a happier place for me was tackling my depression head on. Through my GP I was able to gain information and get help by seeing a psychologist. My psychologist has worked with me to overcome a lot of fears. It is so important to reach out to the right professionals if you’re experiencing any kind of depression.

When I was 16 at work, I met Duke who has really helped me fit in. Duke was a funny older bloke who said to me: “Sean, you know what, you’re doing great when it comes to this job and it doesn’t matter what you’ve been through - you are tough and we all see that.” Suddenly, it wasn’t just my parents telling me I was special and wonderful but a whole new crowd of people.

Studying at TAFE was a wonderful new start too. I found different people with different abilities and interests and connected with a group of friends who’ve banded together to form the Tech Help Group. This group offers low cost or free technical support to other students and community members who may have a disability or be from a disadvantaged group. Founded by our mate Russell, the group has the support of local community organisations and puts us in the unique position of not just being leaders on technical advice around different communities and for our clients it’s also a chance to learn together as a team and help others who might be struggling with a wide range of technology issues. This group was like the start of a new chapter in my life that showed that I could do anything regardless of my heart conditon.Suddenly, life seemed awesome and I felt accepted and alive. In reality – life had been awesome for a long time. Imagine being one of the first people to try a new technology and have a chance at life because of that, imagine having parents who fight daily to make sure you have the best care and believe with all their heart that you are special. So much of what is exhausting about being a heart kid is also what is wonderful.

It’s not just that things change but we meet new people and understand old things in new ways. Someone asked me once to write down the things that were bothering me – let’s just say it was a long list. I then had to circle all the things that would matter in five years – nothing on my list was circled. That was perhaps the start of me getting perspective, a sense of control and order within my life.

What I know now is:

  • Growing up is tough for everyone – even for that cool kid, or smart kid or super-fast, sporty kid.  
  • It gets better, always!
  • Some of your greatest challenges are also your greatest triumphs.
  • If it won’t matter in five years it probably shouldn’t matter too much now.
  • Everyone, um yes, everyone! Will find a place where they belong and people who get them.

If you’re a young person who finds living with your heart problem hard – talk to someone who can help, know that it gets better and remember you don’t have to do it alone. HeartKids and a range of other organisations are with you every step of the way.

Don’t be afraid to share things with others, to express yourself to challenge yourself and above all believe in yourself.

If you’re looking for support in your state talk to HeartKids 

About the Author: Sean Griffin

Sean Griffin
Sean Griffin is 26 and has lived with Tetralogy of Fallot (ToF) all his life. Through the course of his 26 years he has gone through some tough... Read more

Have your Say

Comments (3)

Sean Griffin said on the 6th November 2015

It has been a long road to get this article to paper for me.
Lots of emotional thoughts and feelings.

Shal thank you for praise but without Sharon Hogan it wouldn’t have happened either.

Well that is awesome to see that a heart kid like Beau representing Australia in test cricket that was my dream when I was young but unfortunately my lungs let me down but my brain is something I am using to help others solve computing problems and loving it.

If there is anything more I can do for the heart kids I’d love to know about continuing working with the organisation

Shirley Guzman said on the 3rd November 2015

Wow!  Now I know so much more about the young ‘nerd’ (said affectionately) who is a big part of the Tech Help Group, I feel an incredible respect for what you have achieved and what you are doing now.  What an awesome guy!

Keep up the good work as you plug away at your goals, enjoy what you do, or find something you will enjoy and find meaningful. 

Thank you so much for sharing your story.

Shal (siteadmin) said on the 30th October 2015

Inspiring story Sean! I think you’re absolutely right when you say that you don’t have to go through it alone… and to always believe in yourself.
(BTW speaking of Cricket, if you aren’t aware of it, Beau Casson, a heart kid, represented Australia in Test Cricket, which goes to show we should never give up on our cricket dreams! - you can read more on his story here:

The most difficult thing is the decision to act, the rest is merely tenacity. Amelia Earhart