We are very lucky to have some people around us who have been absolutely amazing. They have looked after us, brought us food, kept us sane and messaged/spoken to us most days. One Pearl of wisdom I would pass on is, don’t expect help from the people you would expect it from, help will come from far and wide and in many forms. We are hugely thankful and grateful to these people and they know who they are.
Also don’t expect everyone to understand, we have had a lot of people say ‘I know so and so down the road, they had a hole in their heart too…’ we have taken to replying with ‘our daughter only has half a heart…’. People who you thought of as close will distance themselves from you, because they don’t know what to say or how to act. Give them space and they will come around in time, it is not their fault they don’t understand the gravitas of the situation you are going through.
Just focus on your little family.
Florence’s journey continues and I will continue to update you when it is appropriate. Should you wish to follow further you can follow Florence on Instagram @florence_and_the_heart_machine
Thank you for all your kind words and comments on these posts they have really helped us. 🙏
Leicester Royal InfirmaryKeepthebeatHeart LinkTiny Tickers “The Tiny Hearts Charity”Little Hearts MatterEast midlands Congenital Heart CentreBritish Heart Foundation