I don’t really like Christmas. I never particularly have. Try saying this to people, and the automatic response is a shocked expression, followed by “but WHY?!”. Normally, I just explain that growing up as a Vicar’s Kid means Christmas is about work, stress, being ‘on show’ to everyone who stumbles drunkenly into the church between last minute shopping trips, and never seeing one’s actual family. People get that.

But actually, being a Vicar’s kid is ok. I like having approximately 50 surrogate grandparents all living in the same town. I like having a house always full of people. I like knowing that whatever befalls us, there will be a crowd of well-wishers ready with a schedule of casseroles and cakes on the doorstep, desperate to help. I can’t imagine anything else, and at one point considered the priesthood simply because I wanted my kids to know that kind of love and support too. (Let’s all breathe a huge sigh of relief that I am not responsible for the spiritual wellbeing of hundreds).

So why do I hate Christmas? So far, I have spent 3 Christmases with a sibling in Intensive Care. Two different siblings, to be precise. The first was straight after Gareth’s heart transplant. 3 days earlier, my other brother Harry and I had spent a night watching Shrek and overdosing on Diet Coke, praying G would make it through the op. He did, and the rest of us experienced our first NHS Christmas lunch. G was off his face on Morphine, swearing at everyone who came near, (except the Chaplain. Our upbringing was THAT bred in).

The second was when Baby Theo had yet another stay in thanks to Pneumonia. He made it out, but not for long. He died a few weeks later, aged 22 months. When we realised that he wasn’t going to pull through this one, I left the room and phoned the one and only Emily, because I simply had no other clue of what to do. At 23, death is not something you really should have to understand. Grandparents and other old people die. Not young people. Not siblings. Emily was incredible. More on her wonderousness in a bit.

The third was Christmas 2013. We’d all convinced ourselves that Gareth was going to pull through like he always did. He’d been ill for a decade, and we knew the hospital drill. But when a consultant phones you on Christmas Day evening, you know things are decidedly not going to plan. Suddenly, I was a medical translator, being told things quickly in technical speak that I could pass on to the rest of the family because we all wanted the medics with him and not looking after us. I have worked in NICU, but I have never seen such a big team move as quickly and as well as they did that night. I know they tried everything. They tried things that they probably shouldn’t have, that were only going to confirm our worst fears whilst costing a small fortune, but they did them because we all needed to know that everything that could be tried was. Losing a sick 22 month old with Down’s Syndrome had once been the worst thing that could ever have happened to me. Losing my gobby, cantankerous, generous, loving 24 year old who simply had crappy genes took that record. Frankly, dear reader, Death is a bitch.

Losing Gareth taught me many things, some of which have no doubt shaped me for life.

Even at the darkest times, when you can’t speak, sleep, cry, breathe or think, when your insides genuinely feel like they’ve been torn out, and all you can manage is to lie and stare, you will survive. Someone will take you by the hand, drag you off the sofa and make you carry on. My godmother was my someone. I have no idea how she did it, but she made me speak for the first time in days. She made me look forwards and see that I now had to live for both of us.

Grief, however, takes time, and doesn’t keep office hours. If you haven’t seen it yet, check out the “Ball in the Box” analogy of grief. Your life is a box. In that box is a pain button. Whenever the button is hit, you experience pain just as fresh and awful. Your grief, or loss is a ball. Initially, the ball is huge, nearly filling the box. It hits the pain button almost constantly. The ball will never leave you, but it will get smaller while it bounces around. As such, it will hit the button less frequently, often when you don’t expect it. But occasionally that button will be hit by your grief, and you will experience the pain all over again.

People cope in very different ways. I don’t consider it an achievement when people kindly tell me how amazed they are at how much I do and manage ‘considering everything’. To me, doing lots of crazy and varied things is not an achievement, it’s a coping mechanism. If you don’t know the Frank Turner song, ‘Long Live The Queen’, listen to it. I have lived to dance another day, and now I have to dance for the three of us. Other people curl up and are able to cry for days, or weeks or months. I envy that, but I’m just not that expressive emotionally. I need to keep going, outrunning the feelings, then have an occasional burnout. It might not be ‘healthy’ for some, but it’s the best I can do.

Finally, the people you reach for when you need help are not necessarily who you expect, but your subconscious tends to choose the best. That’s where Emily comes in. I phoned Emily from Intensive Care, knowing that my brother was dying, because I had to speak to someone, and convinced myself that it was because I was worried about the effect that would have on Live Life Then Give Life, the charity I was a trustee of, and that Emily founded and ran. That was frankly bollocks. It was nothing to do with the charity. I needed someone who understood death, hospitals, loss and fear and who knew what to say and do when the world fell apart. Emily was a big sister figure to me from the day I met her, and having CF, had more knowledge of such loss and fear than most people I knew. She calmed me down, told me to stop being so silly about the charity stuff, and to hug my family close. She then promptly phoned the incredible Oli and Kati, who dropped everything, drove up the country that day and somehow kept our whole family functioning when the bottom dropped out of our world.

Emily has been written about by many people in the last few weeks, and I don’t think I can really add much to all the incredible people who have gone before me, but here goes. She knew people as soon as she met them, and interacted with them in such a way that they always felt special, loved and understood. The transplant community, while remarkable, is also not always the most diplomatic, and yet Emily managed to soar over all the in-fighting and stress, while somehow making everyone feel valued and important. There are few people in this world who make me want to be just like them, but I find myself making a concerted effort to be more like Emily. I want everyone who walks into a room to feel like the most valuable. I want everyone to leave walking that little bit taller. I want everyone to feel like they have a little piece of me that no one else has. When I was applying for medical school, Emily was right behind me, constantly reassuring. She wrote the kindest and most generous letter on behalf of the charity, which I still treasure. She didn’t just say the right things, but she was the change she wanted to see in the world, and has inspired many others to get up and do something about issues that were important to them.

A few months after she died, we received an organ donation leaflet in the post along with a blood donor form. On the front was Emily, post-lung transplant, jumping high in the air like the Fairy Queen she always emulated, leaving the leaflet’s recipient in little doubt of the difference organ donation makes. I was so proud to be able to say ‘that’s my friend Emily. She’s amazing’. Never were truer words spoken.

To me, Christmas will always be, to a sizeable degree, about loss. Theo, Gareth, and now Emily, who died a few weeks ago, leaving an incredible family and a gorgeous legacy, not least in the existence of her beautiful little girl, Sophia. I think I have religion (this feeling changes on an almost daily basis, regardless of the years of theological study), and if I have, then Christmas is also about birth, and life, and love. Theo, Gareth and Emily between them taught me more about these three themes than any book or film or counsellor. And they would all be royally cheesed off if I didn’t keep ‘doing Christmas’. So I shall, for them. And I may even grow to love it.

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