Dan (Crescent City, California, USA)

I have a highly complex congenital heart defect called transposition of the great arteries (d-TGA). I had open heart surgery at 17 days old. The doctors did an atrial switch called Senning repair. It’s a cut and fold origami style surgery where a baffle is made in the septum between the atria. This causes my heart to function differently, specifically the ventricles. My right ventricle does the hard work that the left ventricle should be doing. Growing up I had developmental problems. I was very clumsy, had a speech impediment and very poor fine motor skills. My hand eye coordination was pretty much nonexistent. On top of normal school I had to take special vision training courses and speech therapy. After years of work progress definitely showed. I could now say the letter “r” without too much of a problem, my penmanship got much neater, and I was far less clumsy. I still had a long way to go but it was a start. As I grew older I was still a bit clumsy but my fine motor skills had improved significantly.

When I was 16 years old I saw my dad’s friend spin fire poi. I knew I had to try it. At 17 years old, just after I ordered my first set of juggling clubs, I found out I needed a pacemaker. The Senning surgery caused scar tissue around my sino arial node which prevented my heart from receiving the signals it needed to beat. Eventually it got to the point that my heart was beating 22-23 bpm when I slept so the doctor scheduled a pacemaker surgery for my 18th birthday. After a month of healing I picked my flow arts journey up where I left off. Now after 16 years of flow arts I’m far less clumsy and my hand eye coordination is better than ever. If you get discouraged just remember it’s all about taking baby steps, all those little victories will get you where you want to be.

– Dan Betlejewski
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