A Christmas Carol

My name is Michael Caine, and you Sir, are a muppet. It’s all a bit neat, a Christmas Carol. Here we are with our very own Tiny Tim, who occasionally has the greenish hue of Kermit. A Dickensian tale which I have watched over and over again in its muppet incarnation, and as the advent calendar counts down I wish I could be the puppet master over the Ghosts. Those ones popping into my vision long before Christmas Eve, reminding me of Christmas Past. Hoping for a different Christmas Present. Urging me to look at Christmas Future over the parapet.

First, my visit from Christmas Past. Up until 2010 Christmases were as they should be, brilliant. Twinkly lit against the early darkness. Family buffoonery. Bright walks in the fresh air. The lull of the middle of the day. A cacophony of smells; toe curlingly comforting roast turkey and the trimmings, the tang of pine and holly, deliciously smoky from candles and puddings on fire, undernoted by the farty after effects. Wherever it was spent, it was just a little magical.

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Christmas 2010 is all the more memorable by it’s stark contrast to this. Hauntingly unfamiliar. We’d expected, and been told, he would be spending his first Christmas in this little slice of magic but as December ticked away, this dream faded away with him. Our little goose wasn’t getting fat enough. We tried to bring the festive cheer to him, a little advent calendar in his cot, a toy train with his name on it but they couldn’t silence the beeps of the machines, the glare of flourescent lighting. The hospital tried their best, the nurses were brilliant, but it wasn’t right. This countdown felt ominous.

There was however some good news, some respite. There was talk that maybe, just maybe, Rufus could come home for a few hours on Christmas day. Stable enough for a few hours. Says it all really. In the end they felt he wasn’t quite up to it, too frail, too at risk of catching more than festive cheer but came up with an alternative. Attached to the neonatal unit were family rooms- windowless boxes devoid of soul. We could spend Christmas Eve in one, with Rufus and without his army of bleeping robots. I would have happily cuddled him all day in a (sanitised) wheely bin for this opportunity, so suddenly these soulless voids would become a happy family room. The Cratchetts are a resourceful lot aren’t they? We also had other news, which seemed naively stuffed with promise. At some point, one of the country’s leading nephrologists would come and speak to us. Give his opinion on what was going on. Assistance in a plan of action, get our boy better. Hope and Joy, very Christmassy.

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We were completely cocooned in our magnolia cell. We were parents at last. Nobody over our shoulder, they popped in from time to time, but our Tiny Tim was that. Ours. We were scared of responsibility for the first time. Those hours felt more than magical, time disappeared. We knew we hadn’t had the visit, but surely that was going to top off this glorious day. We were going to make a path through the snow so that this could be our everyday. The Doctor arrived, I wonder what he saw when he walked in. It was late, he no doubt had his own family to get back to, carols and mince pies on his mind. He told us facts, no lies. But we wanted a Miracle on 34th Street in Manchester.

Rufus was small. Look at that picture. He was nearly three months old. He was on another bout of weaning off TPN (Total Parental Nutrition- IV feeding for those who cannot tolerate food at all). I’ve lost count on what attempt this was, but we’d only ever got so far before. The blood would strangely appear in his gut, his feed would explode out of both ends. We now knew he had Congenital Nephrotic Syndrome but seemed to be bucking the trend and the albumin infusions had stopped. A wait and see, but, if he continued to not thrive, it didn’t look good. More than likely his kidneys would fail and he would be too small for transplant. I mean, looking back, you can see where he was coming from. Faced with growth charts and facts around CNS I wouldn’t have taken a flutter on him coming home. Or seeing another Christmas. Rufus was crying (unrelated), I was crying (related). I asked for some hope where there appeared to be none. All he could pull from Father Christmas’s sack was that we were lucky to have known and faced all of this from the beginning of our child’s life rather than have a potentially fatal disease to deal with as a ‘surprise’ later in childhood. Yes, that in some ways is correct. Bah humbug to you too.

We spent the latter half of Christmas Eve back in our wipe clean room, Rufus returned to his robots and his TPN. We woke heavily on Christmas morning, shared some time with our boy before returning to the family fold and the Christmases that we knew. Everything the same and different. We felt a little of that magic, and it helped to know that life was going on fairly normally. Grief hit me hard on Boxing Day, a well placed punch to the heart by Mike Tyson. Arriving at the hospital again, as I lifted my boy to cuddle him a wave of vomit drenched me. He started to scream, I crumbled to the floor with him in my arms. Crying so hard no sound came out. An amazing nurse sat with us, she managed to stop both of us crying. She couldn’t promise everything would be OK, but she’d help work with us. Listen to our concerns, get the right doctors to talk to us. She reached out with her words and with an embrace.

And then there was last Christmas, I think I gave you my heart?! Sorry. But the anticipation, the build up. The promise that it would be different to the one before. And yes it was different, the week before when it looked like another nasty winter bug was coming our way had been managed and kept minimal. We were going to make it to Christmas day, and really enjoy it. But the problem with big hopes is when they’re brought down around you they crash so loudly they’re aftershocks linger. A sleepless Christmas Eve punctuated by screaming and sickness, calpol not touching the side. A top tooth on top of his malaise that was so aggravating he bit through his own lip. Merry Christmas one and all.

Knock knock comes the Ghost of Christmas Present. This one’s pretty creepy, so I’m avoiding it’s gaze directly. Our boy has just not been himself the last few weeks. I joked about that greenish kermit hue earlier, but something is Just Not Right. He’s become more introverted again, the head banging has worsened. Nappies are toxic, reflux is causing him to twist and writhe. So rather than trim the tree, or get in the festive spirit, I’m chasing blood results and specialists whilst stuffing my face with mince pies. But there’s also the other part about Christmas, last year I’d hoped THIS one would be better, Rufus may have caught up more. And in November it looked like that was happening, he was so happy, he was developing. Maybe he would be well enough not to know what Christmas is per say, but enjoy the assault on his senses. Again, high hopes that seem to be wearing concrete shoes. One advent calendar door at a time… My hope may be fading but it’s still there. And it’s Dulcie’s first Christmas, and she is growing up too fast. So, I will make like Mrs Cratchett and produce Christmas cheer from somewhere. Just maybe only for one day though.

So to the spookiest one of all, the Ghost of Christmas Future. She is still pregnant with hope, a couple of dreams and aspirations. It’s a multiple pregnancy, and they are infamous for being a little risky. I hope that one day Christmas won’t come with a sense of the twelve days of mourning what once was, and that will not be the same again. Of remembering Christmas Eve 2010. That it will develop it’s own magic, free from bad news and illness. That both my children enjoy it and grow up to think of it as magical. That one of my children will one day recognise that it is Christmas despite last week being referred to the eye hospital as they suspect he has Cortical Visual Impairment. His brain doesn’t understand what his eyes tell him fully. So I hope they enjoy the twinkly lights. I hope his ears enjoy the carols, the rustle of paper, the sound of ours, and his, laughter. I hope he enjoys the touch on his face of the crisp, cold air. The warmth from the fire when we get home. The smells… Well, just maybe save him the farty after effects of the sprouts. I want to know that this Christmas, and every one ahead I give them my heart. And one day for one of them, I’ll give him my kidney too.

And I’ll also turn to others and their warm words and remember for what we are truly grateful. And if I’ve been too glib, never fear, for when I talk of family buffoonery, remember this is the face my children will come to be haunted and embarrassed by at this very special time of year.

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2 thoughts on “A Christmas Carol

  1. ALWAYS love reading your blog. What a your family is on. Poor little Rufus I sure hope things turn for a better Christmas here very shortly! Give the kidlets a cuddle from Canada! Juels

  2. i dont cry easily……..but you have an amazing gift for making the reader ‘feel’ your angst, worry, joy and love for your family……….you take ‘we’ the readers on an emotional rollercoaster with you……..and like the real thing at blackpool…….ive read this……..and now feel slightly sick and very tearfull……i wish you and your family a ‘hopeful and positive’ new year…x

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