I have 3 children with long term, serious medical conditions. Life long, genetic conditions that won't go away, but are hidden from the world.
My children endure blood tests, operations and a shit future.
Generally day to day life is normal. My children do well at school and appear normal.
They take daily medication which is now normal.
The shock wore off and I decided I wanted them to get on with their lives and make A small deal out of their conditions.
But they have appointment minimum every 6 months. Every small illness becomes a huge worry! And at appointment times I find things hard and very lonely, because we do t to about the future or the illness.
My older children are having counselling but still waiting .