It’s the life in the years, not the years in the life.

When I was about 18 weeks pregnant we lost a very dear colleague. It was just awful and heartbreaking for everyone at work. Theatres really are family, everyone has to trust, rely and get on with one another in order to deliver great care.

Dr Jonny Ball was a kind, generous man and an amazing doctor. I first remember meeting him as a student. He was so calm and collected. When I got talking to him I was amazed and inspired by his life. He was in the military and shared his time between the RAF and the NHS. He had just finished a tour as a medic in Afganistan, he had worked on the front line and on the military air hospitals that bring back injured service personal. He was also an avid marathon runner, but not just your bog standard road marathons, he ran in deserts in Africa, or back to back marathons, once with a broken ankle by all accounts! When I say he was an amazing doctor I really mean it… if he attended an emergency you could literally feel the room become calm just by the sight of him. He was really inspirational and lived his life to the full. It was a massive shock to loose him.

I attended his funeral a couple of days before my 20 week scan. It was bursting to the brim with people all wanting to pay their respect to an extraordinary man whose life had been cruely cut short. One thing that was a common theme of conversation that day about him was that he had pack more into the one life he had than many could pack into 10 lives. He is the definition of the ‘life in the years, not the years in life.’

I mention him because one of the things we found worst to deal with was the prospect of our child having a shorter life. A life that might end before our own. Because the procedures used to help our baby would only prolong his life, they would never fix him, have only been preformed in the the last 30 years. There is very little data on life expectancy. So they tell you 25-30 years.

I’ll give you a moment to let that sink in.

50% of the people that had those operations 20-30 years ago are still alive today. This was the worst thing about it. Initially we thought, ok, yes something is wrong, we’ll fix it. But that’s not the way this works. Our child will receive palliative care. His life will be shorter.

In a strange way Jonny’s death helped me to come to terms with this. Not because he had died but because of how he had lived.

I promise to encourage my son to live the fullest life he can. I know in my teens and early 20s I didn’t. I struggled with my identity. I didn’t really know who I was or what it was I suppose to do and I suppose I was little afraid of life in general. I hated school, I had a good set of friends so I knew it wasn’t that, but I hated it. I was a decidedly average student, that is the best way to describe me. And I didn’t try much and didn’t have to to get the average grades I needed to keep the teachers off my back. When I was doing my GSCEs I read more Harry Potter than actually revising. God only knows how I passed (mostly Bs). I went to a different school for 6th form, thinking a different school and a fresh start might be what I needed, but I struggled even more. I was walking into established friend groups, and although I was welcomed and made friends, it was never going to be the same. Plus the step up from GSCSE and A level is massive and I wasn’t able to coast the way I had done before. I left after 18 months and got an admin job. 6 months after that I went to do a vocational health care course. This I loved, and I excelled! It was the first time I really put my heart and soul into something, I think it helped that I was slightly older too. My last placement was in theatres and I loved it. I remember saying to my mum I could do this forever. But I went to university to study criminology, cause that’s what I had decided to do at the beginning of the academic year. I went, I graduated, but it wasn’t necessarily the experience or didn’t reap on the job front what I thought it would. I felt even more unsure of what I was going to do than ever. I took a job as a teaching assistant to tie me over. After Christmas I contacted Huddersfiled university about the operating department practitioner course to qualify to work in theatres. Less than a week later I’d had an interview and received a place on the course. It was the start of me actually knowing who I was and what I was supposed to be doing with my life I haven’t looked back. it was definitely the right move for me. I’ve been lucky enough to have a lot of second chances and redo’s and I’ve been able to take my time. Because I knew that I had time (we all think we’ve got time). But what if I hadn’t of had time? What if something had happened to cut my time short, would I have been satisfied with my life? No, definitely not.

I don’t want my son to be afraid to live the life he wants and I will always encourage him. It might not happen, he might live a normal life span. But I want him to have quality of life in the years he lives, no matter how long they may be.

What those couple of weeks, with Jonny’s death and our diagnosis, made one think became abdunatley clear. None us are walking around with our number in our back pockets, none of us know. So live your life to the full, make it count!