It’s been a week of ups and downs. Freya has been doing well, getting cheekier by day and bossing us about like only this pint-sized dictator can. The main event of the week has been the cancellation of Frey Frey’s jaw distraction operation due to there being no bed available at the paediatric intensive care unit (the best place to go after an op for a medically complex kiddo). So as I spent most of the beginning of the week getting myself ready for the operation and dealing with the myriad of emotions that come with it I wanted to write about fear and how it features in our lives.
I don’t think I ever really considered myself as a particularly fearful person. I suppose with age I developed a better sense of risk management, and like any young(ish) woman I nurtured my fair share of anxieties. Nothing significant, I would moan about, drink some wine and get on with my life.
How I feel fear changed very much after Freya came. I presume having a child does this to people anyhow, though the fears and anxieties that come with a child with a life threatening condition probably qualifies one to a different ball park of stomach churning dread.
There is the fear of your child’s health deteriorating. Freya’s pulled some pretty impressive crashes leading us straight into the resus room. There is the fear when your child is ill that they will never recover. There is the fear that something will just go wrong – whether it’s a sudden crash or one of those calculated risks you take to improve your child’s life (with operation under general anaesthetic number five for year 2016 in the pipeline I can tell you it does get a little easier, but you can never get used to it). As a parent of a chronically ill child you have to trust your child’s life and wellbeing in hands of others all the time. And every time you leave them behind you cannot help but fear that something goes wrong, or that the person you are leaving your precious child does not do their job properly (like the carer I found asleep in middle of her shift couple weeks ago).
Fair enough. These fears all sound very reasonable, after all, we are biologically designed to fear so that we can avoid getting hurt in situations that may pose danger to us. But there are more complex fears that arise with a sick child. The fear that you are not enough. That you miss something – signs of an infection creeping in, an incompetent carer, medication / therapy / operation that exists – and could benefit your child – but is not brought to your attention by your kid’s medical team for one reason another. There are the nightmares and the panic-y reactions to certain triggers that bring you back to the most stressful days you have lived (PTSD is a widely suffered condition amongst parents of medically complex children). There is the absolute feeling of sadness and dread when you hear that one of children you know – whether in person or through online support groups – loses their fight. You cannot but despair for the parents, because they are living through what you fear the most.
And then there are fears more of a selfish nature – will our lives ever get back to “normal” again? I haven’t left London since Freya was born. In fact, I think I have only managed to cross the river to the south side four times (though as a dedicated north Londoner one might consider this one as an advantage). Will we ever be able to travel, holiday, unwind? I’ve had to give up my career I’ve been building for the best part of two decades. Will I be able to return to work? Will I be able to have a career? And fears of practical nature: how will we survive on just one salary?
So there are little fears. Big ones. Ones that have grounding in reality, and some that are more fanciful in nature. How can we live with all of this hanging over our heads?
You do because you have to. It is as simple as that. You need to be able to breath in, breath out… And let go. You need to prepare, minimise risk, be alert. And you need to accept that some of these fears just simply will be there, quietly sitting in the corner of the room and you will just have to get used to it lurking in the background.
One thing I have learnt is that once you accept that the worst thing you can imagine can happen and there is nothing you can do to prevent that possibility existing you feel quite liberated. The fear is there, it is real, you need to feel it and let go. Once I accepted that that many things that used to scare me don’t anymore. Having had to accept that there is a real chance that we will lose Freya has made me a stronger person in so many ways – I don’t think I ever was a pushover but these days I do not shy away from a fight if a fight is needed to get us what my little family deserves. I’m less occupied by what other people think of me. And in a kind of a funny way the benefit of actually having something to worry about allows you let go of some of those less meaningful anxieties. A bit of “if you can fix it, fix it. If not, suck it up and stop worrying about it” approach to one’s life.
So we live our lives, day in, day out. And we live in awe of Freya, who seems not be afraid of anything (except the neighbour’s little white dog).
P.s. I was wondering what picture to post with this blog. I ended up with this one as Freya dressed up as a fox just because it’s so cute that it makes me smile every time I see it.
Posted in: Living with a chronically ill child