It’s a strange thing, having a poorly baby.
In the time immediately after Hugo’s diagnosis it was near impossible to see beyond his illness; it will, after all, be with him (and us) for life. Our conversations about him centered around his liver, his colour, his treatment and whether we think he needs a transplant, rather than ‘normal’ baby talk. It took a while for me to really start to see him as my baby boy again – that feels really strange to say, but it’s true. Because of course he’s still our baby. Yes, he has a chronic liver disease, but that’s only one part of him. And if it wasn’t for the (currently few) physical signs – the scar, the swollen belly, the jaundice, the medicine – you wouldn’t know he was poorly.
He doesn’t act poorly. He acts in exactly the same way he did before he started being poked and prodded by the doctors on a weekly basis. It’s amazing. If it were me going through what he is going through, I would probably (definitely) be feeling more than a bit sorry for myself, and would probably be a massive pain in the arse because of it.
But not Hugo. He’s got such an awesome little character coming through now, there are times where I genuinely forget that he’s so poorly, which is a blessing in itself. I’m sure every parent reading this will understand that feeling of bursting with love for your baby; you think you couldn’t possibly love them any more, but every day you do.
So I thought, before the blog progresses into more difficult, sometimes serious topics, I’d share with you what makes him into the funny, brave little boy he is.
He’s strong. He bounces back from the physical pain he goes through at an incredible rate. The day after his operation, he did a big sneeze. Ross and I froze, worried that he would have really hurt himself (I was in so much pain after my c-section I couldn’t even laugh. Sneezing would have been agony. But we don’t need to go into what a wimp I am…) But Hugo didn’t even flinch. He just carried on like nothing had happened. And even though he’s had so many blood tests we’ve lost count, he just takes them in his stride – at his last one, he didn’t make a sound. He let the doctor get what he needed, and he carried on playing. I admire him so much for that.
Despite all of the fluid on his belly, he is still loves a bit of tummy time. As insignificant as this may seem, it makes me very proud.
He’s awesome at playing. He really loves monkeys – give him a monkey toy to play with and he’ll happily smoosh it into his face for hours at a time. But more than anything, he just likes to have toys on his head. We regularly wake up to find him sleeping soundly with his Mickey Mouse teddy lying somewhat inappropriately on his head; goodness knows what poor Mickey goes through each night to get there.
He loves The Simpsons. We think he probably feels an affinity for them and their yellow skin…
He sleeps. Seems simple, but it’s something that eludes many of my mummy friends. Sure, some nights we need to help him settle every hour, but those nights are becoming the exception rather than the rule. Most nights, he’ll stir, do a cough and a fart, and go back to sleep. He’s such a boy. It genuinely makes my day.
He is a little chatterbox. He used to talk to us by poking his tongue out, but he’s now found his voice, and boy does he use it! It is the most perfect sound I’ve ever heard – it makes me melt every day.
And last, but most definitely not least, he always greets us in the morning with a whopping big smile. On the days where I wake up feeling like I can’t do it, I can’t cope with what lies ahead, he gets me through it, and manages to put a smile on my face and a spring in my step.
That’s the thing about Hugo. Despite everything he has to go through, he remains a thoroughly happy little boy. For every tear I’ve shed, he gives me a thousand more smiles; for every time I’ve felt helpless, upset or angry about his illness, how it will affect all of our lives and just how bloody unfair it is, he makes me feel ten times happier that I get to be the one to share all of this with him. Yes, being the mum of a baby with a liver disease is difficult, and completely heartbreaking at times, but the thing is that even through that, he makes me feel so lucky. I’m just so unbelievably proud of him.