Please be kind with an oncology parent.
This honest post is from me to you; it is for every oncology parent I’ve met this year, for everyone of you that wants their friends and family to know what it’s like for you and for anyone invested in our journey.
There is no crisis here, no mental break down, no rocking back and forth or inability to get out of bed; there is just that low-level, consistent hum of existing in a vacuum of paediatric oncology treatment which in turn forms the backdrop during these all important childhood years. It’s is boring, lonely, all-consuming, painful and full of decisions, unwanted procedures and waiting.
Please be kind with me as my broken heart is still fragile. Christmas and the ticking of a clock into a new year doesn’t change that. Under the strength you see is a parent who on somedays is learning to surf the waves and on others is trying not to drown out at sea in the pouring rain.
My heart is broken; not into a few pieces. It is scattered and sometimes angry, sometimes sad. I carry it with me, in pieces, everywhere. I pay it no attention because I need to focus on everyone else around me. For the time being my priorities are often urgent, to sustain life and to raise empathetic children. There is no respite. On the outside I often appear strong to you, however, scratch the surface and you’ll find an aged soul and a fragile heart, a tired body and a busy mind longing for a better journey.
It’s not a lie to say we almost got completely shitted on in the ‘sharing-out’ of ‘shit-situations’.
You say I’m “strong”. There are no prizes for being strong. I’d say I’m a fighter who won’t give up. It’s in me. I’d also say we have no choice. I can accept many things but giving up when there is a way through isn’t one of those.
From the beginning, I’ve wanted nothing more than for this to be over. Everything I have done is about staying strong and holding myself together for the children.
Somewhere along the line, slowly, slowly, I got tired and then broken. I’m adamant to find a path to heal. You can’t heal while you’re still in the storm. 2020 is going to be stormy but hopefully less so. 2020, if all goes well, is about hope and healing.
“You just keep giving”. It takes one to know one. I’ve felt hurt, I’ve felt sadness, I’ve felt fear. I’ve felt loneliness. Kindness and love are the two greatest healers. Time doesn’t heal. Over time you (may) develop the ability to heal. You develop an approach to survival. It’s important to me to be there for other families who are going through that awful time; that lonely and fear-filled time which we have already experienced.
“I’m feeling greedy. I’m hungry for new experiences”. I’m ready to leave the hospital behind, I’m not clinging on to our medical team as some sort of safety net. I want to walk away from all of this and let the children experience a life full of fun and freedom. And then, and only then will I be able to truly heal, with all three on the beach…I’m greedy for new experiences, long drives, new destinations, sandcastles, happy meals and healthy snacks, sing-a-longs and footprints in the sand…these, after all, should have been those years…
There is a life beyond this. I’m not holding on to anything. I’ve been holding out….for the right ending…for the corner that we can turn to a better life. You can’t do that when you’re stuck in an isolation room for over two years…
I’m grateful. I’m grateful to many people for many things. Im grateful to the universe for collaborating to get us to this point. There is no doubt that I’m completely and utterly drained by and fuckt off with our situation. However, I have learnt to live in the unpredictable storm. I’ve normalised this new life. I’ve become indoctrinated and accustomed. We make it look easy. He goes to work, where he has to deliver accurately and constantly, as well as dealing with all of this. I have an excessive number of appointments lined up for January 2020 already. I’m not happy about it. I’ll tolerate it. As with all things, life changes…
In actuality one spends everyday healing. That’s what resilience is. Believing that everything is temporary, is passing and that life can change.
I’m broken and tired. Yet, I am adamantly resilient.
More importantly, I have love and hope…