Sunday, 3 January 2016

Hello 2016!

So Christmas is all packed up, over for another year. Our belts are tighter, time for all those new year resolutions, more exercise, less booze etc, etc! 
I hate saying 'happy new year' it seems trite. 
For the majority of us a year will be filled with ups and downs of different degrees, none of us know what is around the corner. I remember entering 2014, knowing Harry was unlikely to make it to the next year, that year in particular seemed so very strange hearing people wish us a 'happy new year'. We had no idea on 1.1.14 that only 19 days later Harry would be paralysed from the waist down, by the viciousness that cancer is. Then we lived through some of the very worst weeks of our lives, weeks that still haunt me, weeks, where I felt so totally out of control, helpless, so vulnerable, but weeks where I had to summon the greatest strength ever to get the support needed for Harry from health and social care and strength to go on caring for Harry and I did my best for Callum too. 
Who knows what 2016 has in store, we shall see. I will turn 40, that I do know! A decade ago we were a childless couple, going on many a city break, hoping to conceive, but enjoying life, whilst no children were on the scene. I don't feel 40 is old, I just feel me. Life still has a lot of twists and turns and opportunities to be grasped. I am certainly open to doors being opened and very much a believer in being in the right place at the right time. I have no grand plan. I guess I am acutely aware that the best laid plans have to be changed. I never envisaged having my first born die and so already my grand plans have been altered and now I feel the need to go with the moment, see what is on the horizon and what I should invest my energies in.
I feel a sense of relief that Christmas is over. I don't hate Christmas, but I did feel so very emotionally exhausted by it. Christmas so acutely reminds us of those missing from our families and increases our MISS of our loved ones hugely. I know I have come along way since last Christmas, where we escaped to Whitby for 5 nights. This Christmas Paul had to work Christmas Eve night shift, so we had no choice but to be at home, however we did escape for 3 nights just before Christmas to Hutton le Hole in North Yorkshire in our caravan. This was straight after school broke up and gave me the space to get away from some of the festiveness to brave the full on throttle of the week ahead. 
I couldn't face the Christingle Service, I remember taking Harry and him wriggling when he was only months old, or running after him in subsequent years. I knew going would have reduced me to tears, the memories, the sadness, when it should be a happy service. I couldn't go and ruin it for everyone else. Instead I met Janey up with Callum and we exchanged Christmas presents. Callum and I then went bowling with Monica (Harry's classmate) and her mum Laura. We went to Shipley, the first and last time we had bowled there was with Harry in 2014, he was in his wheelchair, but in good spirits, it was a fun afternoon and felt like an achievement. Returning on Christmas Eve, was actually ok and we had a really lovely, fun time. We then had tea with friends, which then meant Callum was suitable tired and after leaving Santa and Rudolph their treats, he fell asleep surprisingly quickly! 
There is so much pressure on the build up to Christmas, people say it's just one day, but it isn't anymore, there is the school production; the buying of presents; the decorations; the buying of food (though I didn't have to do much of that this year!); the work party; etc, etc! It is lovely, but at the same time exhausting. I would see things that Harry would have liked, fleetingly you contemplate buying them, then reality hits. In all honesty, the weeks before Christmas become a blur, they become weeks to survive, a mountain to climb. The climb did feel a little easier this time, though there were days when the fog would set in, the ground would feel muddy and the effort to get through would be greater, taking its toll. 
I know family want to make plans for Christmas, overall this felt hard to commit to, particularly before Christmas, as said the mountain still needed to be climbed. Once Christmas had passed, it seemed easier to get through, the pressure gone, then the floods came to disrupt plans!  
We went to a friend's house party on the Sunday after Christmas. Many of Callum's friends were there whom he's known since he was a baby. However, Callum didn't want to watch 'Descipable Me', which is one of his favourite films, instead he chose to write a letter to Harry, he did not let me read it, but sealed it in an envelope and asked me to look after it. Another gulping moment, parralel feelings of happy and sad, I love the fact that Callum remembers his brother, but at the same time, tears sting my eyes and for a moment I don't know whether to cry. Callum however joins his friends and starts to play and I take a leaf out of his book, live in the moment and join my friends. 
So the letter joins a Christmas card, which Callum made at school for Harry. In it, Callum writes that he hopes Harry is having a merry time! I asked Callum what he wanted to do with the card, to which Callum said he wanted to attach the card to a balloon and send it to Harry. However, when given the chance to do this, Callum has chosen to keep the card.

I had a dream about Harry the other morning, I never dream about Harry. I can count on one hand how many times I have dreamt about him since he died. Having had trouble getting to sleep several nights in a row, I was in deep slumber at 8 am. I was having the best dream. It was windy and dark and I looked out of the spie whole in the front door and saw a dark figure in the distance, then a boy appeared, it was Harry, he ran to the door and I let him in. He was wearing shorts and a T-shirt and looked how he did in the summer before he died. He sat on my lap in the doorway and I cuddled him, something I couldn't do the weeks before he died, because he was in far too much pain. I cherished this cuddle. Harry was really happy, I asked him how he was and what heaven was like, to which he said it was good. I was so happy that he was happy! I knew he had to go back to heaven. Whilst he was with me I wanted to check his bottom, where he had, had several grade 5 pressure sores. Since he was running I assumed his bottom had healed, however he still had dressings on it, I was about to redress them as I told him I still had all the equipment and thought he could pop down and see me each time they needed changing! Then, Callum entered the room and I awoke! I really felt Harry was telling me that he was happy and ok. It did make me feel ok too! Later that day I told Callum that I had dreamt about Harry and how happy he was! I think this helped Callum too!

So, we made it through 2015. It was the year of the caravan! The caravan has enabled us to take off, without too much planning and periodically enjoy a few days together. To regroup as a a 3. To try and find our new 'normal'. With Paul working shifts, family time is special and a rarity. We also managed a trip abroad to Turkey and all inclusive was just the ticket, no planning, no decisions re restaurants etc. it was laid on a plate! Perfect! 

We will always feel a whole in our hearts. Time helps you learn to live with the pain. I belong to a closed facebook group for bereaved parents whom have lost kids to cancer. This group has members who are new to loss and those whom children died 10 plus years ago. What is evident is that, that MISS never goes. For some it actually gets worse. We will be approaching Harry's second anniversary of his passing soon. With regards many around us and for example work, allowances are no longer made. It is chin up and get on with it. This can be hard, as in terms of dealing with loss we are still in the early days of coming to terms with our loss of Harry; regrouping as a 3; redefining our lives and working out where we are going. Grief is a journey in itself, on top of life itself. Whatever highs and lows there are, grief is always lurking in the background, like a sudden gush of cold air. Happiness does come, laughter does happen, but equally that cold air is sneaky and can cause sudden unexpected shivers, enough to take the edge off and for reality to hit, maybe for brief seconds, sometimes longer. Sometimes it feels like an out of body experience, when these shivers happen and I look down at myself having fun and suddenly feel like I don't belong, suddenly I want to be home, alone, lost in my grief. We are learning to pull ourselves through, take the fun times and roll with it. However, it's a journey and always will be. So hello 2016, what have you got in store...... 

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