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Well we survived another Christmas and New Year. We were dreading them this year more than last year as we knew how tough they would be. In the event, contrary to the year before it wasn’t as bad as expected. Not because it was any easier going through Christmas without Oscar. It wasn’t even one tiny bit easier. It was just the same as last year. But the feeling was not a new feeling. We knew what Christmas without Oscar felt like. So when it came we recognised it. As usual Holly and Barney helped too. Holly because she was so very excited and Barney, too young to even grasp present opening, but helpful just by being him. [···]

This evening over dinner Holly managed to spill some food down herself. She paused for a moment… it hadn’t been an easy day. David is away for a week with work, Holly had woken me, and therefore also Barney, a couple of times in the night as she had had a bad dream. Actually she has woken me every night for the past five nights which is not normal as she is a great sleeper. Barney is teething, there’s about four teeth going to break through any day now, so the night had been pretty interrupted anyway and although I don’t have any expectations of an unbroken nights sleep and I really don’t mind being a bit tired, when I lose track of how many times I got up then I am undeniably very, very grumpy. So when Holly spilt her dinner down herself I suspect she was unsure of the reaction that she was going to get from me. [···]

Sat in a traffic jam on the M25 today gave me a chance to reflect on what is about to be our second Christmas without Oscar. People do say that Christmas is a difficult time of year for those without loved ones and I understand that more deeply now. For me that is because Christmas is all about time together with family. Both David and I share childhood memories of cosy family times at Christmas and having a sense that everything is just fine and that is a sense that he and I won’t experience again. [···]

Today is ‪#‎GivingTuesday‬ around the world and in just 6 weeks Hannah Cole has put together and published the Thinking of Oscar Cookbook: Made With Love which will officially launch TODAY – and it’s AMAZING!

Hannah has literally spent every spare second that she has had over the last 6 weeks, chasing recipes, cooking recipes, proof reading, editing, project managing, taking photos, negotiating and more to get our book ready for tomorrow. She has of course had a band of amazing supporters around her. However she has also had to do this whilst looking after a 5 month old, gorgeous baby boy, his big sister and me! [···]

Thank you to all of you who contributed your favourite family recipes to our cookbook. The response that we received was overwhelming. It was simply intended to be a collection of recipes from friends, family and neighbours. To include the kinds of meals that were delivered to our doorstep in the weeks and months after Oscar died. This happened, albeit in much greater volume than we might have imagined, but we also began to receive contributions from professional chefs who had heard about the campaign and wanted to become involved. Raymond Blanc, Tom Kerridge, The Hairy Bikers, Gizzi Erskine and many more.

With just a 6 week turn around time, the books went to print on Tuesday and arrived today! We are really excited and a little bit proud about the book that we have created as a result and can’t wait to share it with all of you.  Due to the generosity of our friend Kate and her business partner Cat who edited the book, their friend and business contact Lauren who designed it and Paul the printer, it’s also an extremely professional and beautiful book. [···]

I stopped by Oscar’s Grave today. It’s not something we do daily or even every single week because it doesn’t get any less devastating to be there but every now and then we feel compelled to come here so here I am. I was struck by this plant which is in a planter that we had left there. We don’t replenish it often enough but here in the cloudy grey morning light in the graveyard sits this bright blue and yellow plant. [···]

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. [···]