Oliver and Bee - Living Life With An Extra-Ordinary Chromosome

As time creeps closer to 21st of March, (World Down Syndrome day.) I find myself reflecting on this time last year and the motions I was experiencing after a diagnosis of down syndrome for my son. I had decided to overcome the fear of Oliver's diagnosis and felt I could do this by sharing with people that he in fact had Down Syndrome. I felt I was holding something back by hiding it from people. I felt like down syndrome was a burden on my shoulder and I didnt know how to overcome it. I made the decision to share with friends, family, and work colleagues, and the parents and children at my work what was in store for us. And let me tell you it was the best thing I did. The support I recieved was unimaginable. The love and strength I felt was amazing and down syndrome no longer felt like something to be ashamed of. I was bloody proud and I wanted EVERYONE to know it! It makes me sad now to think of the feelings I felt during that time and how unsure and afraid I was. But o

After what was another set back for Oliver, needing to go back onto Hi-flow for the extra support. The team of baby doctors had consulted with each other and decided it was time. Oliver was 3kg and at this point it was more of a risk not to do the surgery. He was in heart failure and he was struggling, he had fluid on his lungs which was managed with lasix. (A medicine that helps to drain the fluid, he literally weed it out.) And he was exhausted, his little heart was working over time to do the job it was supposed to do and it just wasn't cutting it anymore. We moved over from The Woman's Hospital to The Royal Children's Hospital. It was a strange move, very surreal. We had been at The Woman's 11 weeks and as strange is it is, it felt like our home. We knew the nurses, the doctors, our way around the hospital, it was comfortable. Moving to The Children's was daunting, we didn't know the doctors, we hadn't met the surgeons. It was a new social worker and a