Guardians Of The Precious

I have found being a parent the most amazing experience of my life thus far, although my children are still very young I am enjoying the journey. I am so amazed when I meet parents whose children are much older than mine, and I begin to imagine the future, how will my children look? What kind of people will they be? What profession will they choose? Will we have a good relationship? I wonder away but pull myself back to reality to enjoy the here and now. When I was dealing with my son’s vein of Galen, this was not my thought process at all. When I was told all the things that might occur with him being born with this condition and the dangerous situations that might follow, I had decided in my mind that I would not have any more children. Already as a parent when you have children, it opens up an entire world of worry, whether you’re with them or whether they’re in school etc. You worry so much, about what they think and feel, about their safety, so imagine having to...

One of the hardest situations I had to deal with during my son’s vein of Galen journey, was being separated from my first-born son who was three at the time. He had to stay with family members most of the time, which he did enjoy, but after a while he just wanted to be back home with his mum, dad and baby brother. He often came to visit us at the hospital and it was awesome that GOSH had so many activities to keep him entertained. He loved coming there as he took this as play time and he obviously got to see his family, but it did start to affect him negatively.   He was sad, although he understood that his brother had to be looked after, he didn’t understand why we couldn’t all be together. We had accommodation whilst our son was admitted but some of these accommodations did not facilitate children. It was always hard to say goodbye to him and one night, he sent me a voice note from his Dad’s phone telling me ‘My heart is broken because I miss my mummy so much’.  ...