Days 381–588: just ‘normal’

So, 2016 flew past a bit, didn’t it? It genuinely doesn’t feel like seven months since I last sat down to write and update on Hugo… but apparently, it has been. It seems we’ve been too busy working, buying and doing up our new family home and generally just enjoying life to find the time to write anything. Awkward. Sorry about that.

Of course, the real reason for not writing for such a long time is that there has been very little to say. Thankfully. Life has been… well, just ‘normal’. When I started this blog, it was very much a diary and means of sharing our liver journey with the world, and ‘normal’ isn’t very easy to write about. I know, though, that when I was searching the web just over two years ago for something to give me a real, honest account of living with BA, to give me hope in a devastating situation, I would have loved to know that there was a chance of life just being normal again. Something that went beyond the really intense, hospital-bound months pre and post transplant. So here we are.

Happily, we are starting the year on a positive step in terms of Hugo’s health. We’ve gone nearly a full year without a single admission and no trips to hospital aside from routine blood tests and clinic appointments. His blood results have been consistently stable, and he seems to be doing well – touching wood – on few medications. The blood tests themselves are still totally horrendous without the Hickman line, but we’re slowly finding coping mechanisms as we go; ice cream for breakfast and cuddles with his Be Brave Bear worked a treat last time! And even though they’re tough, they’re currently only every six weeks, and the change in life in general since losing the Hickman more than makes up for it – even if Hugo doesn’t quite understand that just yet. He hasn’t had a full review at King’s since July – his next one is tomorrow, and we’re hoping that all the signs from the last few months mean we won’t have anything to worry about; of course, I’m not taking this for granted, and I’ll still be travelling to London with an overnight bag packed!

I’ve been brave – cuddles with his Dino after a blood test

PUDDLES!

 

In all honesty, I’m a bit taken aback at how quiet things have been on the liver front. It was something that we’d always hoped we’d achieve one day; a semblance of ‘normality’ for Hugo, less of the nasty stuff that inherently comes with liver disease. But I never expected for us to get there so quickly. At risk of sounding like a broken record, I know how incredibly lucky we are that he has done so well since transplant, and that his blips have, so far, been just that – blips. I have to pinch myself quite regularly. I’m also acutely aware that none of this is a given, and that even the slightest thing could tip the balance for him and pull the rug out from under out feet once again. But we just try to manage that knowledge and make the right decisions to allow him to live as full and normal a life as possible while keeping him as protected as possible. It’s a tightrope, but one we’re accustomed to, and one that has worked – so far, anyway. And although we have loosened the reigns quite substantially over the last few months, there is still a way to go.

One of the things I’ve learned in the last few months is that I’ve never really realised of just how serious my approach to life has become. I think it’s pretty understandable and natural, really, for that to have happened, and I also think I’ve done a pretty good job of letting go of the stress and anxiety that comes hand in hand with being the mum of a poorly child – to a point. But last year I got a bit of a wake up call. While it was a good year for us, 2016 also hurt a lot of people. Our liver family lost several children over the year, and one of my school friends also lost her baby girl while waiting for a new heart. I spent much of October and November in a daze, feeling numb after the quick passing of four children, and not really knowing how to process how there could be that much pain inflicted on so many beautiful, innocent children and their families. I also felt guilty about how lucky we are; that Hugo got his gift and is well, and that we now, touch wood, have the freedom and ability to really enjoy life. And even though I know we have been making the most of every day with Hugo, and I genuinely do count my blessings every day, I realised then that in the months we’ve had with Hugo in good health, I haven’t really felt totally free from the prison that the liver disease created for us. Life was just still very serious, when it needn’t have been. It’s not that I’m not happy – I truly am very happy – but more that I’ve forgotten how to ‘be’ happy. If that even makes sense. How to relax, how to laugh. How to enjoy. I’ve decided that it needs to change. No more dwelling, no more letting the ‘what ifs’ rule. No more being serious – when it’s not needed, anyway. Just more letting go, more laughing, more silliness, more variety – more fun.

Monkey finding!

My boys.

Leaves!

Away from the liver side of life, Hugo has just gone from strength to strength. At his one-year review with the health visitor, he was behind on nearly every single milestone. At age two, he was hitting or ahead of his all but one of his targets. No-one would have been surprised if he was still a bit behind, given the start he had to life and the mountains he’s had to climb… but no. There seems to be no stopping him.

His cognitive development has always been pretty strong; one of our strategies during the hospital months was to keep reading to him and playing with him constantly, and generally give him as much mental stimulation as was suitable, and that has paid dividends when it comes to his understanding and ability to learn. Physically, he’s now doing exactly what he should be; he runs, he jumps (mainly in puddles, given half a chance), he dances, he climbs, he kicks balls, he falls over. There was one area, though, that was still worrying me – his speech.

Water play

He loves helping daddy work

Christmas happy face!

When Hugo turned two in September, he didn’t really talk. He could make distinctive sounds, say a few words, and we knew he could understand us, but that was about it. Since then, his speech has exploded at an unbelievable pace. I can’t keep up with what he can say, and he genuinely surprises me every day. He can copy nearly everything we say (cue me having to start censoring my sometimes spectacular potty mouth, especially in the car – ‘you f**king idiot’ has been replaced with ‘oh, silly driver’). He can string logical sentences together, and we can now have proper conversations with him. He loves singing, and most of his songs are now recognisable (and unbelievably sweet), although when he sings the alphabet he invariably skips from HIJ to QRS (and his W is the cutest – ‘double-ooo’), and his current preferred method of counting to ten is ‘one – three – two – TEN’! He’s just so chatty, and he comes out with so many funny and adorable little things every day; my absolute favourite is ‘love you so much’ (‘hello mate’ is a close second). The best part of this is that he’s at that stage where not many people other than Ross and me can understand him. It feels like we’ve got our own secret language. It’s heaven.

There is, of course, a downside to his newfound talkativeness. His attitude. He has well and truly turned into a ‘terrible’ two year old. Major Meltdown Mode has become a regular feature of life, his tantrums can border on the insane, and he’s started having a go at the in-public kicking, screaming and hitting parties. ‘No’ is his go-to answer for pretty much anything and everything you could ask him, and when you offer him something you know he really wants (normally chocolate, the iPad, or anything related to Thomas and his bloody Friends), his answer is a very unenthusiastic and underwhelming ‘OK’ – he may as well just shrug his shoulders. Probably my least favourite thing is his current automatic response when I walk into a room – he just shouts ‘NO! BYE BYE MUMMY’ and pushes me from the room. I know he doesn’t mean it, but still – ouch. And although at the moment I am struggling with how to cope with this new and difficult side to him, I know that it is normal. It’s not us doing anything wrong. And as cheesy as it sounds, even when I’m stressed to the eyeballs by his behaviour I’m still (mostly) grateful that he has the fight in him to behave this way, that he has a strong and independent streak in him. Of course, it’s not all the time – in the grand scheme of things, he is by no means a badly behaved toddler, and even when he is being a little terror he can still somehow make us smile. It doesn’t stop me wanting it to be a short-lived phase, though.

Having a toddle on the pier

Hugo’s second birthday!

So that, in a nutshell, is that. Life is going on, and we’re just getting on with it. Normal.

Only this year, with bigger smiles on our faces.