There are 1,825 days in five calendar years. Did you know that? Does that seem like a lot of time to you? Or like less than you had imagined? Have you achieved all you wanted in the last five years? Do you wish you had achieved more, or spent more time doing something that sets your soul alight? Are you happy?
In the last 1,825 days I have gone from having one child to two. From being single to married. From healthy to sick. Life changed for us on a sixpence. The day my beautiful sunshine Isla was born, so to came the news that something was there that shouldn’t be. I then got four months with my new baby daughter before I became sick and she began to be largely cared for by others.
I spent three years as a proud member of the mummy and Olivia exclusive gang. Getting to know my oldest daughter, holding her, laughing and playing with her. I loved those three years. My beautiful daughter taught me far more about myself and my capacity to love than I taught her. Never have I known such a bright soul who puts smiles into peoples hearts like Olivia. She is kindness and love wrapped up in the most beautiful little person.
Once I was diagnosed I started to lose time. Hospital trips here, surgeries there that led onto chemo days, the beginning of endless feeling shit and more surgeries. With every complication and every stage of illness I faced so too came a loss of time. Further relinquishment of being mummy.
Throughout this journey the one thing that hurts me the most of all is losing time with them. When I would get sad about it, people would tell me that they were so young they won’t remember any of this, or that I was sacrificing now for later. Both statements felt so loaded and problematic to me.
The thing is, if we’re here for being totally honest? They are both bollocks.
None of what is to come is going to make up for the time I have lost during their formative years. Especially Isla. If none of this is going to be remembered then there was a high chance that neither would I be remembered if I lost my battle, and so my scant presence in their lives became even more important.
I didn’t get Olivia to 1,825 days old before she came out with “mummy, I’m scared you’ll go to hospital one day and die, and then you won’t come home and cuddle me”. Before she watched me and bawled her eyes out because I was being carried out of the house by paramedics.
Isla didn’t get to 365 days old wanting me. In fact, I don’t think I even got six months. She is firmly attached to grandpa. Am I forever thankful that grandpa was there and she formed secure attachments? Yes. Am I forever gutted that I’m not that attachment? Yes.
I imagined a childhood for my kids, the life I would give them. It didn’t include cancer before the age of five and the possibility of losing their mum. It didn’t include hospitals and endless needles and injections and drugs to prop me up. I imagined being a mum. I imagined bedtime stories and bath time madness and blowing bubbles and so much love. And, let’s face it, even when you imagine life’s ‘downs’, cancer isn’t one of them. It’s not a down, it’s a land mine.
Nothing is going to bring back the lost memories, the ruined first Christmas of Isla’s and the second one that was lost to morphine and benzodiazepines. Nothing is going to change the fact that my baby girl’s birth is tainted. Nothing will change the fact that I have become a novelty in my absence. The look on their faces when they accidentally hurt me or can’t have a cuddle that breaks a little bit more of my heart each time. These are all things that have happened, that still happen.
‘So change it, be there more. Be their mummy’
I can’t. I’m still not well enough. I have been bed bound for most of lockdown. I cannot be their mummy. There have been many moments where I’ve wondered if this is it, is this the moment that hurts the most. The diagnosis, the terminal prognosis, the agony of chemo, hearing Olivia scream for me as I’m carried out and being unable to go hug her. But, as it turns out this bit is the worst bit so far. Because mentally I’m ready, I’m there, my body however? Is not playing ball. So I’m watching as it all carries on.
So, don’t tell me not to focus on what’s lost because there is nothing worse than wanting nothing more but to change something so badly that you bled for it, that you suffered for it to change but it all stays the same. Day in, day out, week after week, month after month.
So, don’t tell me ‘it’s ok, they won’t remember this when they’re older’ because I will. I will remember every heartbroken face, every period of darkness in their lives where there should be light and joy.
Don’t tell me ‘you sacrificed then for now’ because some sacrifices feel too heavy to bare.
1,825 days. Five years. Nothing gives you perspective on the worth of time like being told that’s all you have left earth side. 1,825 days, it’s never going to be enough time with them.
Don’t tell me how to feel, or that I have to fight just one more battle, that I’m nearly there and to keep my head up, because I’m exhausted.