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2 Years on – the Good, the Bad and the Ugly – Sunday June 19th 2016

From the very beginning I knew that I needed to write. Not for a blog but for David and I and for Holly and Oscar. For us because the thought of feeling the way we did in those early weeks for the rest of our lives was unbearable and inconceivable and yet we could not imagine feeling any other way. I wanted to write down the journey so that when we were having a dark day 2 years, 5 years, 10 years down the line, maybe we would be able to see for ourselves that we were in a different place even if we didn’t feel that that was the case. I needed to write for the sake of Holly so that she would know that she was the rock, the constant that is in our life even when she’s being a teenager before her time. I needed to write it for Oscar because I needed a place to catch my thoughts. Now maybe it’s for Barney too to understand more about the brother he never met.

On the first anniversary after Oscar died I looked back at my book and as I did it I couldn’t really say that anything much had changed. Now I would probably see things a bit differently. On the one hand I no longer feel the permanent sense of terror which resided in my body for months after Oscar died. That feeling you might get for the split second that you think you’ve lost your child in the supermarket or when you’ve convinced yourself that there’s an intruder in the house. When I pour a glass of wine or eat a nice meal my taste buds know that it’s good whereas to start with food seemed to get stuck in my mouth. At the beginning days were endless and all exactly the same. Most people tend to look forward to the weekend whereas for us a day was just a day and a weekend day was longer. We just concentrated on getting to nine in the morning, past midday, through the afternoon and then to sunset. We would stay up as late as we possibly could and only go to bed when we thought we might be able to lay our heads on our pillows, close our eyes and make ourselves sleep before our minds wandered for a moment. So that permanent nausea has gone.

On the other hand the passing of time has left us no less heartbroken, no less baffled, no less devastated for Oscar, that we don’t get to spend our lives together. Now on the day of Oscar’s 2nd anniversary we have been talking a lot about how our life has changed and what we think about that. There’s a mixture of good, bad and ugly.

The Good:

There is a huge amount of good stuff happening in our lives right now not least that Barney has been born, making his own mark on our world. But I noticed it quite early on.. that so many aspects of our life, apart from the immeasurably enormous Oscar element, are richer than they were before. We seem to notice the detail of life more and appreciate the world around us. The charity that we founded in Oscar’s name has raised funds and is beginning to deliver benefits so it has become a reality not just an aspiration. The mission of the charity is to improve the experiences of children and their families whilst in hospital care. That will be a long journey and it will take time to affect change in the NHS but we have at least made a start. The other important outcome of Thinking of Oscar is that it encourages all of us to try experiences which are outside of our comfort zones. For me there is only one problem that I am unable to solve. Everything else is probably fixable with time or money. I think David and I have become much braver in the day to day decisions that we are making in our life. Because our parameters of fear and risk have dramatically shifted. So what seemed unachievable or too hard before Oscar died is no longer tricky at all.

As a result there is a lot going on. We meet fascinating, generous people and have interesting conversations. One thing we are definitely not is stuck in a rut or bored. It’s not just our own lives that Oscar’s life has changed but the lives of some others too and that’s so important for us. Oscar inspires people to try something new or alters their perspectives and we really appreciate that.

The Bad:

There’s not too much to write here. We’re only two years in after all. We met a lovely family through our counsellor and one of the things that the mother said was ‘I wish I could take these early years away for you but I can’t and you just have to go through all this’. That was such a helpful thing for me to hear because she obviously knew that ‘drowning in sadness’ feeling. Now the feeling isn’t that intense fear and nausea. Mostly these days my grief feels very numb. Like you could stick pins in me and I would not blink. Despite being surrounded by an amazing family and network of friends it is an incredibly isolating place to be. The lightness and frivolity of life is gone and although we do laugh I do recognise I am probably quite an intense person to be with now. The milestones seem to go on and on. 1st Christmas, 1st New Year, 1st Mother’s Day, 1st Father’s Day, the first of any of our birthdays, 1st anniversary of Oscar dying, 2nd Christmas, 2nd New year, the day he should have started preschool…. They all pass by with the relentless tick tock of time. And even as we learn new tricks to deal with them (generally that is make sure we are together and preferably outside) they don’t ever pass us by.

Then there’s the shadow. We still see it. I look at Holly and Barney doing something and imagine what it would be like if Oscar was there too. Or just the other morning I was chatting to a peer of Oscar’s and I was thinking how grown up she was now and I tried to imagine Oscar chatting just as much as her. At the end of the day Oscar, or the fact that we have lost Oscar, completely defines us. Apart from living in the same house everything else that we do, every decision that we make is because of Oscar. And because of this he is always in our thoughts.

The Ugly:

Where to start. I find it hard to join in with casual conversations. I can’t get worked up about the weather, about sleepless nights, the cost of fuel, anything that has happened on the tele. I just don’t care. Whilst I probably have a much deeper empathy for people who have their own struggles in life I am not very good at sympathising with people getting worked up on issues that I don’t consider to be important. I need to keep having words with myself on this one because David and I have realised that we have to make ourselves fit in with the world in order to feel a part of it.

I was never great at doing not much and I am worse now. Whilst it is true that life is busy looking after two small children, working, running a charity, training and so on actually we find stopping much harder than keeping going.

Then there are celebrations. Although we are both committed to living life to the full – which felt like an absolute impossibility from the outset but which we have always known we have to do, for the sakes of Holly and Barney, never mind ourselves – actually celebrating ourselves is much harder to do. I haven’t bought David a single gift in the last two years. I can’t think of anything apart from the obvious that I would want to give him. Today being Father’s Day as well as Oscar’s anniversary makes it all double bubble. There’s no uniquely engraved keyring or similarly meaningful and beautiful gift. But DC will get cards from Holly and Barney that they make ‘themselves’ and we will spend the day together and that feels to me to be what works for us. There will be funny moments and sad ones. Then we’ll put our heads on our pillows at the end of the day and another milestone will have passed.

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