Days 589–770: close enough to perfect

I’ve never been great at New Year’s resolutions. I know how useless I am at sticking to them, so I generally don’t bother. Last year, however, I decided that I would make some resolutions. They were mostly little things – the standard pledge to keep in shape (miserably failed here), remembering to take my make-up off every night before bed (awful habit I know, but now I mostly remember) – but one was to start writing more regularly again.

Well, that didn’t go very well, did it?

The truth is that all the while Hugo is doing so well, I feel a bit conflicted about keeping the blog going. It is tied so intrinsically to the torment of his first year that it almost feels farcical to keep it going. Some people agree with me – it should be left in the past, and life should move on. But more people tell me that there are so many reasons to keep it going, when I can. The biggest reason, aside from the help that I know it gives to other families who are on the same path as us (some wonderful families from the other side of the world have reached out to me to thank me for giving them something to hold on to when they staring to the same abyss at the start of their BA journey, which makes it all very worthwhile), is what it will give Hugo when he grows up. Ross is one of my biggest supporters here – he wants me to keep documenting our journey so that one day, when he is old enough, Hugo will be able to find the answers to the questions he will have. Answers that he will deeply need. And that, frankly, is more than enough of a reason to keep it going.

So far, I haven’t really done a huge amount of processing about how everything he has already been through, and will continue to go through, will affect him as he grows up. Both Ross and myself are extremely conscious that it’s not going to be easy (at least to start with) for him to process, and for us to help him understand it all. He’s already aware that he has to take medicine every day, and that when we go to the hospital he has to sit still and be brave for the doctor, and that he’ll have a plaster (or sometimes four) on his arm after. But when will he realise that this isn’t ‘normal’? At what age will he start to ask questions about this – and how do we answer them?! How do we start to explain to a child the reality of why he has the scars he does, what his medicines mean, why he has to take them when most other kids he knows don’t? When do we even attempt to try and explain to him that he has a piece of his daddy’s liver in his belly? How do we give him the confidence to be proud of what makes him different, and protect him from those who suggest otherwise, who might make him feel ashamed? How do we make decisions for him that we know could potentially put him in harms way, but that we don’t have much of a choice over – primary schools, for instance; do we send him to a tiny school which could offer better short term protection against the risks he faces, or do we send him to a larger school, knowing that he could well be at greater risk here, but equally knowing that socially it would be preferable, and that it will probably ease the risks longer term? It’s still a couple of years until we need to answer that particular question, but as you might be able to tell, I’m already borderline obsessing about it – and I have no idea how we’re going to find the right answer.

That’s what worries me about looking to the future – there is no easy answer, just a lot of conflicting possibilities; protecting his health vs living life to the full. Sure, they’re not mutually exclusive, but they clash. Regularly. We’ve just got to find a way to make the right choices for him, and teach him to do the same for himself, when the time comes. We’re much better at balancing the risks now; he’s been regularly going to a playgroup since April (which tested my nerves but was so worth it; he LOVES it), but I still can’t quite bring myself to take him to a soft play centre. I hope I’ll be brave enough to, one day, but as much as I desperately want to just be able to let him go off and do all these things without a second thought, it simply doesn’t work like that. It’s something we’ve got to figure out as each decision comes along, all the while hoping that he continues to beast the hell out of being a post-transplant patient and confound the doctors who treat him.

My last blog was posted the day before Hugo’s last routine clinic at King’s in January (incidentally – this post is going up just a few days before his next one). Thankfully, it went incredibly well; the consultant we saw actually called him a miracle! He explained that Hugo is a bit of a rare case; they don’t expect to see a child of his age, so soon post transplant, doing so well on so little medication. Somehow, his body seems to have balanced itself beautifully (for now – TOUCHING WOOD ALWAYS). Ross thinks it’s because the liver is so genetically close to his own DNA. Whatever the reason, he gives the professionals the jitters a bit, and they seemed genuinely amazed at how well he was doing. All of his blood tests since then have been perfect; he is doing SO well (see above disclaimer). And we couldn’t be happier about it. We’re just keeping all things crossed that next week brings the same results.

Away from liver life, Hugo’s continued to develop, learn and grow (literally – the boy is SO tall) at the rate of knots. Honestly, he is like a sponge; I can’t even begin to list the new things he can do, say or sing now. All I can say is he makes us burst with pride at every turn. I just love being able to have proper conversations with him now – my current favourite is when he asks to “build a plan” in the morning so he knows what we’re doing that day, and then when he races to the door when Ross gets home from work so he can tell his daddy what we did. Barring the odd mishap here and there, he is pretty much potty trained. And even though he still has his moments (yep, the tantrums are still hanging around. Ugh), he is just so sweet and loving that he can almost get away with them.

With nothing in the liver world preoccupying us in the last six months, we’ve managed to fit in quite a lot. Most of the time has been taken up renovating our new house; a total top-to-bottom overhaul in eight months was not an easy feat, and not one I intend on repeating any time soon (if ever), but one that has been totally worth it to create our perfect family home in time to relax and enjoy summer. Hugo had his second liver birthday on June 5th, which was lovely and low-key. Ross graduated with his NEBOSH diploma – given that he started his studies after we found out I was pregnant with Hugo, and everything that has happened since then, it’s an understatement to say this is an amazing achievement, and we are all beyond proud of him. I took a group of colleagues to volunteer at the Ronald McDonald house at King’s, which was awesome in every way possible. We’ve just made some wonderful memories with Hugo, our family and friends; we’ve even fitted in a couple of cheeky child-free nights just to add to the sense of ‘normal’, something I genuinely thought at one stage I’d never feel comfortable doing.

Even with all of the many positives of the last six months, I still face internal battles about so much on a daily basis that can sometimes put a downer on how I see things; that stop things being perfect. Barring sharing the odd Facebook post, I try to keep them private; they can be hard to talk about without coming across as a sympathy-seeker (or so it feels) – but if I ignored them here, it wouldn’t be true. One of my biggest struggles is whether people judge me, judge us, for the decisions we’ve made about Hugo. Decisions which, I have to say, we believe are what’s allowed him to thrive and stay well enough to the point where we can relax the rules and live life with more of a carefree attitude now. I certainly don’t feel like we should apologise for the fact that we’ve taken the time to ‘normalise’ Hugo’s life slowly, at his (and sometimes our) pace. I also know that what other people say or think doesn’t matter – we know the truth and reality of it, and those who get it don’t question it – but it still upsets me. I just need more confidence, to have courage in my convictions and stop second-guessing myself, particularly when it’s not needed, because I know these battles aren’t going anywhere. I’m working on it.

Looking forward to the next few weeks, we’ve got lots to be excited about. Thankfully, we’re rather good at keeping busy so I don’t have too much time to overthink these things (although I’m sure Ross would disagree!); some much needed work-free family time, weddings, a trip to the New Forest, a new baby due in the family (not ours, I hasten to add), plus lots of picnics, hours splashing in the paddling pool, riding scooters along the seafront and hunting for goblins in the woods… just lots of memories to be made. Me, my handsome, healthy boys, and our wonderful family and friends.

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My handsome boys. My world.

Who needs perfect when you’ve got that?

 

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.