I have been thinking about being a parent as a role parenthood as a concept a lot lately. Firstly, as it was mother’s day here in the UK quite recently and secondly, as my own parents are visiting after months of having been on a flying ban due to my mum having had a hip replacement.
It is a given that being a parent tends to be a big deal for most people. It can change your perspective, it can make you grow up. It can make you able to deal with all these disgusting bodily fluids of these little people in a way that makes your former, childfree self gag in disgust (if you told me to try to catch someone’s vomit with my bare hands few years back I would have told you to F off. Now I reckon Freya and I could enter into some sort of a championships as serious contenders).
As it often is, our expectations of how it would be differ from what is actually has been like. Our journey as parents has been a million miles from what we expected, but I think happens to those with medically typical kids too.
The joys of parenthood often are portrayed as this “love at first sight ever lasting devotion” type of thing and people feel quite pressurised to have this experience, even if your own feelings inside do not match the ideal. For example, with me, when Freya was born I mainly felt confused and completely knackered (it had been a long process to evict her from my belly). She was whisked away, no one really knew what was going on (or at least told me) and I was dumped in the maternity ward in middle of these new mums with their babies. At which point, I felt confused, knackered and more profoundly miserable than I ever had before.
In the following weeks we got into a weird routine of having a baby in hospital, not being able to take her out, feed her or even to hold her when we wanted. It was a period of intense emotional turmoil, feeling of constantly being not only pushed beyond comfort zones, but scarily close to breaking point. And I can now admit it – it was hard to bond with her, when I felt that my world was crumbling around me.
I know most new parents are scared of breaking their new baby, but when you have a seriously ill child the anxiety caused by having to perform life saving medical procedures on your own child is petrifying. It seemed as our lives were becoming endless parade of bad news, various professionals and heavily medicalised existance whether we were at home or at hospital. For me, I think in many ways in the early days Freya often felt like a job rather than my child. One very demanding, snotty job that liked pooing a lot and riding around in ambulances. But slowly the balance started shifting.
I now realise, whether your kid is medically complex or not, that the bond you develop with them builds up over time. For some it’s created the moment your baby is born, for others it takes time. For some it never happens, and for others that bond will be broken later. Most are just too embarassed to admit that it’s not as simple as we are all made to believe.
Being a parent is a lot harder than it looks. I think this is something most parents admit. It is universal truth, albeit not as often admitted aloud, that majority of kids are little shits. They are unreasonably demanding and have some really stupid ideas. Us as parents have to live with this, partly because we have to and partly because it’s mesmerising and highly addictive seeing glimpses of yourself grow up in front of you in this little tyrant. So you persist, enjoy their folly and hope one day they grow up to be somewhat reasonable human beings.
Being a parent to a medically complex kid has its additional challenges, main one being keeping them alive – and learning to live with knowledge that there is a higher chance than you’d like that you will outlive your child. And that is where the real challenge lies – learning to live and love however precarious the future may seem to you. It is impossible not to dwell on the unfairness of your child being seriously ill, but you have to try to push past it. Being a medical parent is hard- a bit like being in a very long boxing match with multiple opponents – but you need to breath a bit between rounds or your life simply becomes unbearable.
Lessons learnt? To be flexible and kind to yourself. Often things don’t turn out as you think in your head and you should not punish yourself for it. Don’t impose a strict regime of achievement for your family – it’s just going to make everyone’s life a lot less fun. In our house we have some “non-negotiables”, like breathing, but it is a lot less important to us whether Freya meets her developmental milestones in a textbook timetable. We know she will get there, it might just take her a little longer. Try to get a healthy balance in your life. People sometimes get completely swallowed up by being a parent and seem that their whole identity is about being one. As having a medically complex child is so all-consuming it does take over every aspect of your life. But try to find time to enjoy grown-up stuff too and enjoys yourself. Being a parent may be the most important job of your life, but we are all other things too. Enjoy! Kids are crazy little beings that can really open your eyes to the world in many ways. Whether you kids are medically typical or not you are likely to have up and downs and even if all goes well they grow up so quickly- so enjoy them!
P.S. Freya update. We had a couple of days at hospital to have her jaw distractors out. The op went well, but the surgeon thought it would not be useful to add on any further distractors in. The distraction has worked well to an extent but we are still miles off having a reasonable airway. So, it’s back to the drawing board and hopefully our surgeon will come up with a good plan how we can further work on Freya’s mouth opening. In the meantime we have been discharged and Freya is enjoying driving her little moped around the garden!