It’s Christmaaaas… etc

I’m SO BLOODY excited about Christmas this year.

Last year was a bit of a write off. Yes, we were incredibly fortunate to be home for it, and we had a nice enough time, but the reality of Hugo’s diagnosis, his recovery, and what it meant for us was still sinking in. It certainly wasn’t how we envisaged our first Christmas with our boy. This year, however, we’re well and truly going for it. We’re (just about) getting a firm grip back on our world after that horrid blip that gave me a big wallop to the stomach in November. Our fridge is now stocked with wine (yum), cheese (yummer) and sprouts (yuk), and our Christmas jumpers are dusted off ready to be unleashed. We’ve taken a great amount of pleasure in spoiling Hugo rotten this year, with a mound of pressies wrapped and ready for him under the tree – which he is pretty obsessed with, by the way. He’s just fascinated by all the lights and the baubles. I took him to visit Father Christmas for the first time with my sister and his cousin; one of the ‘normal’ things we’ve now ticked off the list that I wasn’t sure I’d ever have the opportunity, or confidence, to do (and yes, Hugo and Violet are both officially on the Nice list – phew!) We’re also hosting Christmas dinner for the first time ever, so I’ve been practicing and perfecting my roasties for the fam, who all happen to be bloody good cooks. No pressure then!

Looking back over this year, as we all tend to do at this time of year, it kind of goes without saying that it was beyond tough. It certainly wasn’t a year we thought we’d ever have to endure. But here’s the thing: we did endure it. 2015 tried to destroy us, but we fought – hard – and we won. So rather than feeling sad, or lost, or scared about what my family has been through in the last 12 months (and as I felt this time last year), looking back now I feel strong, proud and extremely, extremely lucky. And ready to move forwards into 2016 with my best foot forward.

It feels bizarre to say that we’re amongst the lucky ones, given all the trauma and stress we’ve lived through, but we are. Because Hugo made it. We faced the shitty hand he was dealt, and we got through it. Yes, we’ve had blips since his transplant – and we’ll probably continue to have blips into 2016 – but we’re finishing the year stronger and happier than we started it, and we’re together. At home. Healthy. And as cheesy as it may seem, that’s the best thing I could have ever wished for, because I know it’s not the case for so many out there; it was never a given. The meaning of Christmas has changed so much for us this year (as I’m sure it does when you become a parent, anyway). The festivities, family fun, presents, pigs in blankets and glasses of prosecco – they all have a place, absolutely. And I’m certainly looking forward to all of that. But I’m no longer taking it for granted; if those pieces of Christmas didn’t happen, and we still had Hugo at home, it would still be perfect.

As we’ve been building up to Christmas, I just feel so grateful that we are able to enjoy it at home with the boy, playing lots of Christmassy films and tunes, and watching him play, laugh and discover. I’m not going to lie; once or twice (ok, several times) I’ve found myself getting completely and utterly overwhelmed and shedding a few (happy) tears at the most seemingly insignificant situations – just sitting playing a game or reading a book with Hugo when one of my fave festive songs comes on, for instance. Goodness knows what I’ll do when Christmas day comes; waterproof mascara, I guess.

And then on top of all of that, Hugo is doing really well at the moment. He’s had a happy, fun-filled month, and we’ve both been able to relax and do a bit more for ourselves; taking that invaluable step back to be us rather than ‘just’ parents, from time to time. His bloods last week were perfect again (barring his EBV level which has crept up – but I’m trying to put that to one side until the repeat next week before freaking out again). His cognitive and physical development is incredible; the physiotherapists were blown away by him last week. He is learning new tricks at impressive speed, and is well on his way to standing up on his own – he is so determined. Actually the main things concerning us at the moment are ‘normal’ baby things. Like him not sleeping. As comforting as it is that these are our only current worries, we’d really like him to go back to sleeping soundly at night soon, please!

It’s safe to say that all of that makes me feel pretty lucky.

So this year, while I’ll be most certainly be holding those who are forced to spend the day in hospital or without their loved ones in my thoughts, I’ll also be making the most of every sleep-deprived second at home with my boys and my family. Hopefully with the best roast potatoes ever.

Merry Christmas and Happy New Year, everyone! Wherever you are, whoever you spend it with, I hope it’s magical.

Days 110 – 176: excuses and reflections

Well. This is a bit awkward. I seem to have taken an unplanned and unintentional two months off from blogging. I feel as if I owe everyone a bit of an explanation.

The last couple of months have been a bit of everything and nothing. Of course, things have been happening (mostly good with some bad), but as the weeks have passed by nothing has really felt blogworthy. Each time I sat down to write, I faltered. I started questioning whether or not I wanted to continue with it. I’ve been back and forth on it so much, I’m sure Ross and my mum are both sick of me debating with myself over it. Essentially, because this blog means so much to me, I don’t want to ruin it by carrying it on when it’s run its natural course. I’m not sure what its natural end would be, but after Hugo’s birthday, with little on the horizon apart from just being his mum, I wondered whether I’d reached it. Although it’s entitled ‘Life of a Liver Mum’, it is totally centered around Hugo, so when there wasn’t much to say about him I worried that the next post would be bland and boring, and I’d end up ruining something quite special, so I put it off. I worried that starting to write about something other than Hugo might turn it into just another generic mummy blog. Don’t get me wrong, I follow a few of these blogs, and I find them amusing, if a bit ‘trendy’; I just don’t want my blog to trip over and fall unwittingly into that category.

Then there’s the flip side. I truly love writing it. It’s become really precious to me; it’s given me such a source of comfort, an outlet for everything that’s happened this year, and it’s been such a positive thing for me. I know I’ve helped others by sharing our experience; being contacted by other liver mums (or their families) to say thank you has been incredibly touching and humbling. I’ve been contacted, too, by mums who are years further down the line than we are to reassure me that we’ll get there, it’s normal to feel the way we do, everything will be ok. It’s also heart-warming to know that there are so many people (friends, family, nurses and total strangers) invested in Hugo, who encourage me to keep going. And all of that spurs me on to keep doing it.

Even though I haven’t quite decided what to do in the long run, one thing I have decided is that I wouldn’t want to stop writing without actually telling people these reasons. I would want to explain. I’m hoping that I’ve achieved that today. But right now, I’m still not ready to wrap it up for good, so you can take this as a precursory explanation, for when the time does come. It’s quite likely, though, that even if I’m carrying on with the blog, I won’t be posting as much as I have done this year. I have, however, set up a Facebook page to support the blog. Please feel free to find it and follow 🙂

It probably goes without saying that the time I’ve spent away from the keyboard has been a bit up and down. To start with, it was very up. In fact, very little was happening that was worth sharing – which is another excuse for not keeping it up to date. Hugo was making the most of being at home, and I was getting on with being his mum; we were just living our lives. It felt quite normal, and not blogging felt like a part of that. We had our longest ever stretch out of hospital (four glorious months with nothing but scheduled check ups). We had our first holiday with Hugo; a wonderful few days spent in the New Forest with my family. Hugo has come on in absolute leaps and bounds, being a little treasure and giving us so much joy. I may be a tad biased, but I have to say he’s pretty clever. He’s building an increasing repertoire of animal sounds – so far he’s nailed monkey (obvs) cow, snake, lion and, most recently, sheep. He’s becoming increasingly independent – and bossy! He definitely knows how to tell us what he wants. I can only guess who he gets that from… He’s become even more funny and cheeky, if that were even possible. He’s finally sprouted his first teeth. And he crawls! Forwards, not just backwards (as he did for a few weeks). He’s bloody good at it, too, and it fills us with so much happiness seeing him scurry across the floor. My little Mr speedy. Major physical and developmental milestone: smashed. The fact that he decided the perfect time to start crawling was the day before we were due to take him to be admitted back onto Rays of Sunshine ward just made us laugh; his timing, as ever, is impeccable.

Even though we’ve had a great bit chunk of positive and happy in the last two months, the last few weeks have had their fair share of stress and upset. Hugo has been getting really miserable when going to the toilet, something we’re trying (and so far failing) to help him with; even a strong dose of laxative at hospital as part of his bowel prep for a procedure last week hasn’t really helped. It’s really affecting his moods, which is in turn upsetting for us. Thankfully, we’re still getting good glimpses of his happy, cheeky self. It just feels like an unnecessary discomfort for him. Then there’s the blip we’re currently navigating. We spent five days last week admitted on Rays of Sunshine (although it felt like a LOT longer), where Hugo was nil by mouth for four consecutive days for three procedures (MRI, endoscopy and colonoscopy, and a CT scan, all of which involved either a sedative or a general anaesthetic) to look into possible PTLD (as his EBV level shot up to 7 million) and an issue with his portal vein that was picked up at his last clinic appointment at the end of October, as well as a blood transfusion. As much as it was a shock to the system being back in the nursery, it didn’t take long to settle back into it, and it was really lovely to see Gill, Justine, all of the nurses and the rest of the team on the ward. We were also lucky to catch up with some of our liver family friends from our previous stays on the ward. Everyone was so surprised at how big Hugo was, how amazing he looked and how much he’d progressed, so even though I was really bummed to be up there again, I also felt buoyed up by them. I will always feel lucky to have the friendships and trust we’ve built up there.

Despite the week being more stressful that it needed to be, right now things are starting to look up. We heard last night that Hugo’s EBV is now down to about 134,000 (still a high reading, but MUCH improved), and the consultant is happy that he isn’t developing PTLD. It goes without saying this is a HUGE relief; having a potential cancer developing after everything Hugo has been through was really taking it’s toll. We still don’t know what is happening with the vein; it might need intervention or just more close monitoring. This blip isn’t quite over, but we’re feeling on a steadier foot, and I’ve started to see the light at the end of the tunnel. I’ve really struggled with this blip, which seems odd as Hugo’s been much, much poorlier in the past, but I guess I’ve felt the effect of that rug being whipped out from beneath us even harder after such a long and happy stint at home. Hugo still isn’t quite right, but he’s getting there – he’s sleeping better (which in turn makes us much happier), his appetite is picking up, and he’s getting happier. And, very importantly, his liver function is – and I quote – “remarkable”. It all helps.

This week, apart from spending pretty much the whole week glued to the phone waiting to hear Hugo’s results, I’ve been reflecting a lot. It was a year ago today that we found out that our two-month-old baby had Biliary Atresia. At the time it was, without a doubt, the worst day of our lives; since then, we’ve had our worst day time and time again. It would be so easy to spend today focusing on the fact that a year ago we essentially lost our healthy baby; a year ago, he became chronically ill. I’ve spent so much time over the last year mourning his health, him being ‘normal’, and not knowing whether he would survive, and it’s made me tired. Instead, I’m going to spend today being thankful for the fact that he’s still here, and in the grand scheme of things, he’s very well. I want to celebrate how far he’s come; how far we’ve come. Celebrate what makes him special – and there is so much that does. The fact he has his daddy’s liver – there aren’t many people out there lucky enough to share something so magical. The fact that he’s proved time and time again that he’s strong, and that he’s made us strong. The fact that he hasn’t been defined by his illness; instead, he’s defined himself with his strength and courage. The fact that a year ago, we suddenly couldn’t see into his future, and now we are living life as we should have been all year. The fact that he’s learning and developing as he should be, in spite of all the obstacles he’s faced. The fact that it’s taken a bloody long time to get to where we are, and it’s still not a smooth ride, but we’re happy.

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My gorgeous family, a year on from diagnosis 🙂

I think all of that is well worth celebrating. Here’s to Hugo – my hero.

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