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Until the recent demands of three young children caused a temporary lapse in my hyper-organised state, I would have considered myself a very well prepared type of person. Organised almost to the point of being a Scout. Note however that I find the whole scout thing generally rather odd. It seems almost cultish, never mind the scarves and all those knots…

Being prepared for Ted’s Fontan surgery has posed a stumbling block for me not just because we are facing the 20% cancellation rate that unfortunately affects all patients in Australian public hospitals. Also we have the added consideration that if Ted has even a slight sniffle he will be deemed unfit for surgery.
So here I find myself juggling my inherent desire for everything to fit nicely into place and the reality that it could all be postponed at the last minute. I am still struggling to find suitable care for my 7yr old and 18 month old during Ted’s hospitalisation. Not knowing if he faces 3 weeks in hospital or 13 weeks make it very difficult to find a temporary nanny.

Preparing my precious boy is another issue entirely. Ted is incredibly sensitive and suffers with anxiety and phobias of needles and medical gloves. To deal with this I have been taking him out to the hospital for weekly sessions with a wonderful ‘Child Life Therapist’ who aims to give Ted coping strategies through play. While play therapy is a lot of fun for Ted with his truly wonderful therapist, for me the sessions are particularly upsetting. Watching Teddy learn through play that he will be subjected to countless painful procedures is crushing. He plays with the multi coloured tourniquet they call “a funny arm seatbelt” and he cracks jokes and smiles as he puts it on the dolly. While it is all laughs for poor little Ted in these sessions it breaks my heart because I know how much it will hurt in reality and I hate so much that this has to be his reality.

When I was 13 I remember being awarded an amusing prize after a ballet performance for ‘best stage smile’. Still to this day I reckon I could hold a cheesy smile for about as long as it would take Ted to walk a kilometre. That’s a very long time. This brilliant skill has come in very handy since we were dealt the blow of HLHS. Holding Ted and making jokes as he fights the anaesthetist placing the mask onto his face before surgery is always a struggle. Not crying in front of Ted is sadly very important.

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