When asked what you’d like people to be aware of about your Heart child, this is what our families said…
‘That every journey is different. Some children have greater needs than others (even with a similar diagnosis) and it’s good to ask questions. We like to tell (parts of) our story….not to be dramatic but to celebrate our children’s lives and to continually help us process the ongoing impact on us all!!
‘I would love people to treat my daughter just like any other child. Yes she has limitations but at the end of the day she is just a little girl. One experience was her best friend was having a sleep over for her birthday. My daughters friend told her that her mum said she couldn’t come because of her heart. It made my daughter so sad’.
‘For us we would like people to understand the seriousness of CHD particulary when it is invisable. ‘He looks so well is he better now’ really gets us to the core every time. as I’m sure we all wish that to be the case but like others have already said its life long. But also that things can change in a blink of an eye. It’s a rollercoaster and every journey is different’.