It has been a while since I put pen to paper. Often times, now that some of what I write ends up on the Thinking of Oscar website, I hesitate writing down how I am feeling because there is nothing new. What am I meant to say when someone asks me how I am? I got caught out the other Friday by the guy at the petrol station who asked me if I was all finished now for the weekend and I looked at him completely blankly. Then I realised that David and I don’t really differentiate between a week day and the weekend in the same way that holidays are no longer special days either. A day is just a day. We start it, live it and finish it. [···]
Had a new experience today. David pointed out a cut that Barney has behind his ear. Just one of those cracks that you get if you don’t dry properly. I imagine if it were Holly at the same age we might have fretted a bit – it is quite a deep crack – and we wouldn’t have known what to do. With Oscar we had realised that these things come and go, that children’s skin heals quickly and just put a blob of cream on. He did have exactly the same kind of crack behind an ear one time. Today with Barney has been different again. This is because Oscar’s Osteomylitis was likely contracted by an airborne bug, getting into his body through some broken skin; a crack behind the ear or perhaps the little patch of eczema on his jawline. So I’ve spent the rest of today staring at Barney horribly aware of how vulnerable he is. How vulnerable life is. Except the odds of something happening are miniscule. Tiredness is probably not helping – it has been a busy weekend. [···]
Barney Arthur Cole was born on Tuesday 26th May. He was born at home at 06:19, seconds before Holly emerged from her room, so she met him very soon afterwards. The whole experience was very surreal and very calm. Home has become an extra safe place for us since Oscar died and doesn’t hold the same connotations that the hospital does and that was why it made sense to us for Barney to start life at home. I had been worried that when we held him in our arms for the very first time that we would be overwhelmed with sadness and grief for not having Oscar in our life but actually, for me at least, it was all about him. I guess that is self preservation for you. For sure it is how it should be. We had realised a few months ago that it would be really important for him not to live his life in Oscar’s shadow and now that he is here I can see that it will be easy for us to ensure that that does not happen. During the course of my pregnancy with Barney I had said that this was not our Plan A, that we thought that we had already completed our family but now that Barney has been born I see it slightly differently, that we were meant to have three children we just didn’t know it until now.
After the blur of the first couple of weeks our minds leveled out and the thoughts that we have daily about Oscar are now intertwined with Barney too. It is amazing getting to know the little man, who is a very relaxed chap, but his existence gives us a whole new set of triggers to get used to. I catch myself thinking how nice it is to hold him in my arms and then flash back to the last time that I held Oscar. He looks me in the eyes and I think he must know how much I love him and then I wonder when was the last time that Oscar knew that he was truly loved by us because in the last days of his life we now realise that he was slowly drifting away. As I feel the breathe of Barney on my face the same thing happens. It’s not that either of us wish that Barney was Oscar and it certainly does not dilute the pleasure of getting to know him. Our new life that now includes Barney is infinitely better than the one that we’ve experienced over the past 12 months, but it does nothing to fill the void that Oscar has left behind. One of the things I am enjoying most is watching Holly’s smile. Perhaps I’ve been over thinking it but I have felt that at times she has looked quite a lonely figure and that has been upsetting to watch. Whilst she continues to talk about Oscar on a daily basis she has added Barney immediately into her family hierarchy and seeing the delight on her face when she plants the most gentle of kisses on him or when he turns to smile at her is delicious to watch.
The other recurrent feeling over the past six weeks since Barney was born has been one of excitement as we realise what we can achieve through Thinking of Oscar. Whilst the provision of children’s toys and books, and then the vein finder devices that we are funding does meet our charitable objectives of improving the quality of life of young children whilst in hospital care, for me that is not enough. Oscar’s legacy is all about changing lives, not only of the patients themselves but also people around us. We have talked before about how radically our perspective of life has dramatically shifted. It is not so much different looking inward. That is to say, I don’t imagine that we love our children any more than anybody else but how we look outside of our family is completely different. In our old life we spent our time working, saving up for something, enjoying socialising with a wide circle of friends. We had a good idea of what we thought the next five or more years might involve. In the evenings we talked about where to go on holiday next , what we were going to do about Holly’s latest temper tantrum, who we wanted to win the X Factor….. now we spend our evenings talking about where we might take the charity next. We don’t spend any time worrying about any problem that doesn’t need addressing right now. Admittedly we aren’t that great at relaxing. That’s not something that was ever my strong point but now it is hard for both of us because it’s not possible just to sit down and watch a movie or listen to music – there are just too many references for us to pick up on when we let our minds wander. I’m sure over the years we will work out a new way of being able to let our minds rest. But in the meantime it is interesting. We’re learning all of the time and meeting new people whom we would not otherwise have had the opportunity to meet. And through Thinking of Oscar, along with many other people, we are all able to contribute more to the world around us than we would otherwise have done.
Today marks one year since Oscar died. On the one hand we cannot believe we have survived without him for this long yet on the other hand it’s hard to imagine our old life and how simple that was.
It’s strange to say because I would not wish what we are going through on anybody, and we did not find our life boring before, but it has become much more interesting now. Before Oscar died we might bump into an old friend whom we had not seen in a couple of years and I would have been able to summarise what we’d been up to in 5 minutes maximum. Now, quite apart from the events surrounding losing Oscar, we have so much going on. [···]
We’ve had some interesting conversations with Holly over the past few days which are different to conversations that we’ve had before. The first one happened on Saturday afternoon. We’d put some Disney clips on the tele and one of them was from Dumbo. The clip that they were showing was of Dumbo and his mum being separated and the image was their trunks intertwined and then losing grip as the truck containing his mother drove away. Holly asked what was happening and David explained that Dumbo had been teased for being different and his mother had been protecting him. There had been a bit of a mix up and the two of them were being separated but that they got back together in the end. [···]
In the very first weeks after Oscar died David and I talked a lot about the impact of his death on Holly. I remember the feeling that went through my body as we were told the news by the doctors. It was literally like getting knocked down by a high speed train. And then seconds later we both got hit again as the realisation began to sink in. Oscar is gone….. how can we go on?….. and then… what on earth will become of Holly’s life? How can she survive this experience? We had never intended for her to be an only child. We always wanted her to have a sibling to share her childhood with but also as a friend for life. Holly and Oscar were only a couple of years apart, had developed a very close bond and made one another laugh more than anyone else. It was a very easy decision for David and I to see if it would be possible to have another child. Our point of view was that it would give Holly huge happiness as she already knew how amazing it felt to love someone. Later on in our thought processes we realised that it would also help us in our quest to carve out a new life for ourselves, one that is unrecognisable from the past. [···]
Eight months down the line I am thinking about how we survive. The first thing that I always cling onto is the hope that you cannot imagine your future. By which I mean for David and I our lives were completely different eleven years ago – we hadn’t met yet. They were unrecognisable from now five years ago as Holly was not born yet. And of course a year ago we were a very content complete foursome. My hope is that our lives are similarly entirely different in one year, five years and eleven years into the future. It’s not that we will have a new content complete because that is now impossible but if we work hard it could be something new. [···]
On reflection our trip to Singapore to participate in the round the island ride that you may have read about was a positive one. We had spent some time together, just the three of us, during the first week. With a constant awareness of Oscar’s absence we were hit time and again with pangs of sadness and at times Holly looked very alone and deep in her own thoughts. She misses her playmate and that is painful for us to see. Fortunately after a couple of days another family arrived with a little girl of a similar age and the two had a lovely time together. We overheard Holly talking about Oscar to the little girl several times in the first afternoon and afterwards David asked her if she had told her friend that Oscar had died. Holly’s reply was no she hadn’t because she felt it wasn’t kind to tell someone that someone else had died. [···]
We have learnt a lot about ourselves and about life since Oscar died. The latest lesson that we learned is that positivity only gets you so far. There is a range of emotions we are unaffected by. We don’t feel sorry for ourselves. We don’t feel angry. We’re not particularly confused. We try really hard to take positive choices in our new life as not taking that approach makes us feel even worse and being positive sometimes helps. That was the thinking behind our Christmas campaign. We understand from our counselor that families in a situation like ours often dread Christmas and that when it arrives it is not so bad. We were the other way round. Our point of view was that Christmas could not be tougher than any other day. Why would be it worse not having him at breakfast on Christmas day than on any other day of the week? It turns out that Christmas was much, much harder. Perhaps it is the poignance of the occasion; that it is meant to be a magical time for children, that it is a family oriented time and that it is very easy to compare how you felt and what you were doing last year compared to this. Whatever the reason the Christmas and New Year period were pretty brutal and we probably haven’t quite bounced back yet. But we have learned something. So, for what would have been Oscar’s 2nd birthday on Friday February 6th we made sure we were better prepared. We had a plan of how to occupy our time in order to get through the day but this time we realised that however meaningful our plan was, to some extent all we had to do was to allow the day to pass by. The passage of time is something that we were not so aware of previously. A seemingly harmless ‘oh doesn’t time fly’ feels different now because, like it or not, day becomes night becomes day. It is like the beat of a drum and is so relentless you can almost hear it. And every single beat takes us further away from Oscar. [···]