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In the past week I have had a door of hope re opened. 

I have taken master four for a cardiac cath and have just found out that his heart pressures are good and there is a window of opportunity open to go have his next surgery. 

Yes Woohoo!!!!! 

Even if the procedure/ operation is a variant to the full one I’m so happy. This means hopefully if things go well he will have more energy and be able to breath better. And the biggest thing will be having more certainty his life will be longer. 

I had built myself up to expect bad news as the cardiologist had prepared us for many years to expect the worse. And since my son is so blue and puffed all the time it wouldn’t of surprised me if it was another bout of bad news. But this shocked me. I felt like saying to the doctor “are you sure you have the right family ?” 

An amazing feeling when you don’t have to follow through on the next plan or steps you have made for the what if’s. 

I have spoken to a few people about the results and sadly they think this means he will become normal and ok like other kids. But no sorry he won’t. We are happy because it’s a slice of hope that we thought was long gone. It doesn’t mean he won’t be at huge risk during surgery or grant him a life at the end it’s still so unknown but a glimmer of hope brings sunshine to our lives and a hop in our step. 

Embrace the good moment now as the days slip away 

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I'm a mum of four who loves my kids but juggles some amazingly hard battles with disability and illness with two of my children. Sleep deprivation, time and being Homebound you will hear about many issues I face daily but mostly with a positive view. I just need somewhere to vent So thanks in advance if you even bother to read my mumble jumble

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