When you have children you’ll often hear the phrase “it takes a village to raise a child” and that sentiment is 100% true when it comes to paediatric oncology.
When Aurora was first diagnosed I wrote a long, emotional statement about what had happened, which was shared on Facebook and did the rounds around not only our small community, but the world. I subsequently started blogging, then began my whole social media journey, but throughout it all, one thing has remained, and that has been the support we’ve received throughout our journey.
Aurora was diagnosed during lockdown which meant that we were unable to physically see anyone, so my whole experience is very different to other parents who may now be experiencing what we did, or those who experienced an oncology journey prior to lockdown.
I think one thing is true for every person though, regardless of when their child’s diagnosis was, support is so important. The emotional, physical, mental and financial strain on families going through a cancer journey is unpredictable, and often not spoken about enough. I’m sure a lot of my followers are cancer parents or families themselves, and they will often tell you it’s hard, but they don’t say how hard.
It’s hard to explain everything in one blog post, I’m not very good at condensing stuff down because I could talk forever. Im torn between what I should write about, because there’s a whole different story to when Aurora was here, and now that she’s gone.
Finding out your child is seriously ill is one of the worst things you will ever have to endure, but it’s not as painful as watching them get sicker to get better, and it’s a hard burden to bare, because you would rather be anywhere else in the world, but wouldn’t leave them for anything. Instead, we have to lean on others to help us bear the burden of everything we’ve been thrown. We can’t sit and confide in our children that we feel lost, and lonely, because firstly, that’s not their burden to bear, and secondly, who are we to complain when their bodies are slowly being poisoned in order to cure them.
Instead, we project our feeling outwards onto those we love, but also those who know what we are feeling. People want to help, although sometimes their intended intentions aren’t as pure as you’d like to think, anyway, I digress.
Supporting a family through a cancer journey is no small feat, but there’s plenty of ways to do it. I always appreciated that my friends would research medical jargon that I’d put in messages, or ask me questions so they understood better, because it made me feel like they actually cared enough about what was going on to spend time looking into it. It’s easy to feel like nobody cares when you’re in the stick of it because, life keeps going on for other people, but it feels like the world is stood still for you.
Our gofundme page paid our rent for over a year when we were out of work and unable to earn a living. Having to worry about how the bills are going to be paid and how you’re going to keep a roof over your head is the last thing you want to worry about, but it’s another stress that’s added to the pile. Many parents have to go back to work so that they can support their family financially, even when they’re in complete crisis. I always say that it costs nothing to share, or raise awareness but it’s priceless to families who are desperate for that support. No family wants to beg strangers for money as a way to save their child, but if I had to sit on the street and do so I would.
I also found that this journey makes people feel entitled in someway, like they have bragging rights as to how close they were to us as a family, but I feel like that’s a blog for another day. (A big old fucking blog because I realised that some people will always imply that their loss of your child is somehow worse…. Weirdos)
I’ve gone completely off topic. My point is, that it’s really fucking hard to do this by yourself and tensions run so high that it’s easy to shut people out, when you need them the most. Ethan was my rock throughout our journey, but it wasn’t easy.
It’s hard to accept help and offers when you’re in a pit of sadness and loneliness because people and their sympathy make you feel less than. Less than capable of taking care of your family, less than capable of being strong, less than capable of carrying the weight of everything, but nobody can be strong forever… Sometimes we’ve got to be weak just so we know what strength is, and we have to talk and unload everything that weighs is down. It’s imperative, because nobody could do this journey completely alone.
I met some of the most incredible people I’ll ever meet throughout Aurora’s time in The Marsden. Other parents, nurses, doctors, social workers, therapists… and each of them saw a different side of me, each of them were there to support I’m completely different ways whether it be sharing knowledge, talking me down off the ledge, making me admit I was struggling, or just being a shoulder to cry on… They were there.
And we can’t expect that from everyone, we don’t expect that in fact, but it doesn’t mean we don’t resent it. To us, there’s nobody in the world that’s going through worse shit than we are so it’s easy to become malicious or bitter about people not being interested… but all I’ll say is that the ones you need the most will show up, those that don’t, aren’t needed.
Growing Pains and Paper Planes 