Hope & Healing

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…

Grieving

Last week, I was speaking with a wonderfully engaging and down-to-earth chap, let’s call him Scott. We were talking about Daya and paediatric cancer. At some point I said that ‘most people won’t ever see a child die in their lifetime, they may not even know of a family that has lost a child…’. He took it all in, reflected and nodded. It made me realise I was, sadly, correct.

I’ve seen too much. We have lost too many this year alone.

How did this become our reality? What a cruel world I live in…I’m thankful it’s not made me cold.

A friend lost her child on Christmas Eve. I went to see another child yesterday who is very, very dear to me. I love her. She’s relapsed and it is a very difficult space and place to be in for a parent and a child who is old enough to understand things. We had an awesome time together. I am not prepared to lose her.

If you are reading this and grieving, my words to you aren’t profound. They won’t change anything overnight.

There’s no right or wrong way to grieve. No strong or weak path. Take your time. Cope as best you can and break down when you need to. Surround yourself with people who love you. People you can talk freely to. People you can turn to on the cloudy, dark days. People who turn up. Love can be found in the most unknown and uncommon places. Open your heart and let love in. If you start building walls, they will prevent love from getting to you. Love heals. On the days you feel numb and empty, when all you can do is breath and go through the motions; On those days, know that you are enough. You are going through one of the worst possible experiences any human being can endure. Continue to go through it. You have been an amazing parent to a child who needed you. You gave everything. You were amazing. You were alert when fatigued. You cuddled when you wanted to cry. You gave comfort when no cure could be found. You gave love. You lost….love. You lost a part of your soul. You were enough. In the emptiness and the unbearable stillness, you will find that tears flow or loneliness and longing consume. That’s ok. It will feel awful. On the days you don’t want to get out of bed but you have to because you have other children, roll out, splash your face with some cold water and get dressed. Chin up, back straight. Fake it. The children are watching. You’ll be home soon enough after the school run or the day at work. You’ll engage with basic people who can’t handle their basic problems; this will have an impact on you. Rise above them. You will find a way through this. Again, as at the start, you have no choice. You’ll find a way through. Most importantly, you have loved and been loved. That. That, being with out that, that alone is what hurts the most.

A Child Loaned

I will lend you, for a little time, 
A child of mine, He said. 
For you to love the while he lives, 
And mourn for when he’s dead. 
It may be six or seven years, 
Or twenty-two or three. 
But will you, till I call him back, 
Take care of him for Me? 
He’ll bring his charms to gladden you, 
And should his stay be brief. 
You’ll have his lovely memories, 
As solace for your grief. 
I cannot promise he will stay, 
Since all from earth return. 
But there are lessons taught down there, 
I want this child to learn. 
I’ve looked the wide world over, 
In search for teachers true. 
And from the throngs that crowd life’s lanes, 
I have selected you. 
Now will you give him all your love, 
Nor think the labour vain. 
Nor hate me when I come 
To take him home again? 
I fancied that I heard them say, 
‘Dear Lord, Thy will be done!’ 
For all the joys Thy child shall bring, 
The risk of grief we’ll run. 
We’ll shelter him with tenderness, 
We’ll love him while we may, 
And for the happiness we’ve known, 
Forever grateful stay. 
But should the angels call for him, 
Much sooner than we’ve planned. 
We’ll brave the bitter grief that comes, 
And try to understand.

By Edgar Albert