On mothering, and dying

I’ve thought a lot about whether to address this issue, and have decided that I will – but I will only do it once.

A couple of readers have bought it to my attention that they are concerned about my choices when it comes to parenting my children, whilst having a terminal illness. I have no interest in vilifying these people, I can only assume that the comments come from genuine concern, and we all have our opinions on range of issues, which we have a right to. I can also assume that if a couple of people express these things, then there must be a whole bunch of other people thinking it, who don’t say it.

So, here goes.

The very first thing I thought of, when the doctor said “I’m sorry, you have cancer” was my children. They are my first concern ALWAYS, and Gaz lags behind a tiny bit, as I do with him. They are for both of us first, always.

2014 was the year of hope. I found out that I might be eligible for a potentially curative liver resection, and even though the chances of it actually curing me were miniscule, I basically lived for that year like I wasn’t dying, because there was a tiny chance that I wouldn’t. That included how I parented. Around the ravages of treatment and major surgery, I kept things as real around here as I could. I cooked when I could, I cleaned when I could, I did all the school runs I could, I did the Saturday morning netball run..when I could. When I couldn’t, I drew my children as close to me as I could, into bed for snuggles and movies, whatever I could manage.

When the news came in January 2015 that the liver resection was a very dangerous prospect with a 50% mortality rate, things got distinctly abnormal. We explained to the children, in as simple terms as we could, the risks that mummy was taking to have this operation, but that it really was my only chance to be with them for a long time. The middle two seemed to take it quite well, but not my eldest, who declared her intention to lay down in front of the trolley and not allow them to wheel me into the operating theatre. She REALLY understood, and she was TERRIFIED. Yep, it was horrific, and further away from normal than you could ever imagine, but all we could do was be honest with them and all get through it as best we could.

2015 was the year of despair. On the last day of February I was wheeled out of the operating theatre only a couple of hours after I went in, with much more advanced cancer than they thought, and my last chance of a cure, gone. Only a few weeks before my oncologist had given me 6 – 9 months to live without a successful resection, so I knew what I was up against, I really was dying.

So, how should I parent now? Spend every second with them, make memories? This made sense, but to me (and ONLY to me, everyone elses decisions on how to tackle this have validity and I am sure are equally well thought out), it would also have them on constant alert about what was different….and what was coming. People in my circle did have opinions, and they did express them – that my life wasn’t my own any more, but all the time I have left to be given over to preparing Gaz to raise them on his own, and to filling memory boxes, writing them letters and reading them stories.

There is nothing whatsoever wrong with any of this, but I wasn’t READY. If there was anything I wanted, it was a “normal” regular every day family life for as long as I could have it – for them, AND for me. So, in the end, that is what I decided to do. I wrote about it in a blog post in March 2015, and I give you an excerpt here, as I think this explains it fairly succinctly.

“Someone said to me the other day that what was left of my time now was owed to those I will leave behind. To prepare them for the practicalities of life without a mother, to write my husband a long laundry list of the girls requirements, clothes and shoe sizes, where to order uniforms, how to get Georgia’s yearly nappy allowance. And to be honest, I will probably do that at some stage, but I won’t do it now.
Nope, for now, I am going to keep on teaching my girls how to hold onto that beautiful gift that is inherent in childhood, to be able to live the guts out of every day you have. I don’t want them to ever, ever lose that, not even when the harsh realities of adulthood try to seize it. I want to teach them to be resilient, to adapt with their changing world, but to do it without being bitter and cynical and looking for someone to blame for the way the cards were dealt. And most of all, I want to teach them to never, ever give up, to realise they have something of value to offer every single minute that their heart beats inside their chest. I want them to know if the great figures of history had known they were going to be felled early by a heart attack, cancer, or the bullet of an assassain, they might have done something differently, and the world would have been a lesser place. And the best way of teaching, is by doing.”

This time, NOW, is the only time I have to be a role model for my children. By the law of averages I won’t be here to see them through their teenage years, to have any influence on how they view the world. So, that is what I am doing. But do you know what. The passage taken from my blog / book above is actually the very essence of who I was BEFORE I was dying. I stayed home and raised my children until they went to school as that is what I wanted to do, but as Georgia was entering her second year of 4yo kinder, I started to get edgy. I wanted balance. I wanted to be a mother, but also re-define myself as a person. So, I went back to study, and there began a different and very happy chapter in my life. I felt no guilt that sometimes my children had to go to after school care, or someone had to pick them up. They were always well socialised and well adjusted children, so this didn’t bother them. Although I sometimes had to send them away when they wanted me, as I was on deadline for an essay or something, and I DID feel guilty about this, it was also an opportunity to explain to them that mummy had different responsibilities to different people, including HERSELF.

To stay sane, I always made a little time for myself. Nights out, girls weekends. Yep, I still do that now, too, even though it means spending time away from my children. It was good for me then, and it’s good for me now, it means I come back re-charged and ready to tackle life head on again. If I am to be honest, I need this now, more than ever. It also pays respect to my philosophy that what is left of my time on earth also belongs in part to ME.

Barring some miracle, there is a terrible day coming for my children, and for me. I dread it more than any day, even the one that I die. It’s the day that I come home from the oncologist and say to them that there is nothing else left to help mummy, and in a couple of months, mummy will die. But that time is not here yet, it doesn’t even feel close. I am not dying on anyones schedule, and at the time of writing this, I have been alive for 26 months from diagnosis. 26 months that I have had to enjoy my confident, well adjusted children. I had palliative care counsellors into them a couple of times, and after their second visit, I said to them, “what next”. And they said to me, this is when we withdraw from your children’s life – you are doing just fine, and so are they. That they were always there, always ready to come back, but the very best thing I could be doing for my children, I was already doing. That’s good enough for me, and a great place to end this particular discourse.

On a completely different note, today we celebrate 8 years with our littlest fairy. This day 8 years ago, I thought I was going to give birth to a completely different baby than the one I had. We were scared, but she turned out to be the perfect fit for our family, our very heart. She taught us how to live without fear of what is going to happen the next day, or even the next hour – as that is how she lives. She’s absolutely perfect – sometimes the universe just knows, eh? Happy birthday our gorgeous Georgia.

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Til’ next time.

13 Comments on “On mothering, and dying

  1. I’ve just been having a conversation with a friend who, typically, runs herself dry helping other people – her children, her ex-husband, friends and family – all of whom she puts ahead of herself. She’s running out of oomph – and she’s seriously ill with a chronic illness. But, well or ill, the way we BEST teach our children to be self sufficient and independent is to teach them how to look after themselves as well as others – and as with so much of parenting in the early years, that’s best done by example. I take my hat off to you, Julia, for having the good sense, in the midst of an emotional load I can’t even begin to imagine, to do just that, by committing to living well, looking after yourself with time for you, time for you and Gaz as a couple, as well as the time with your kids. It’s no one else’s business how you choose to manage a situation that is as unique as it must be horrendously difficult some days, but for what it’s worth, I think you’re amazing and those girls are damned lucky to have you for their mother!

  2. I don’t always comment but I do try to always read (now that I have belatedly found you!) and just wanted to say I applaud you in every way. I’m in awe and seriously, you have my highest respect. No one should be judging you on how you parent – especially in the face of adversity. I’ve got to say your fairies and fella are all the better for you doing what you do, in the way you do it. Bravo Julia xx

  3. Maybe I’m totally wrong, but I think it is a terribly cruel thing to have someone say that the remaining time you have (or that any of us have) belongs to others, that there’s a duty to live cramming every moment with insurmountably happy memories… to me that seems like a rock around anyone’s neck. As if you weren’t living for your family already…. ugh. Women do not exist solely for others. Why is that so frightening to people? A mother who works or goes away for a weekend with her friends? Oh for shame! Well, I say BULLSHIT to that.
    ❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️
    Big love to you lady, I honour your choices. Screw anyone who doesn’t get it. It’s not about them.

  4. Oh gosh I just can’t believe people can comment on such issues.
    Even think it.
    None of their africkin business ever.
    I think (for what it’s worth) you are doing a FABULOUS job parenting and living, while you are living.
    You are alive ,vibrant and free to do whatever you like.
    Awesomely, inspiring others to live each day as it comes and not preparing everyday for end of life. You are the best role model they can have right now.
    ” It also pays respect to my philosophy that what is left of my time on earth also belongs in part to ME. ”
    So it does and I see you considering your girls and Gaz at every turn.

  5. I would have hit the roof – you are a better person than me! Parenting under these circumstances is excruciatingly beautiful and painful. But life must go on and normality is a gift and a joy xxx

  6. How can anyone think that you are anything but an extraordinarily loving and amazing mother? Your children will know what strength and grace means and how to be their own person who doesn’t define themselves by their subservience to others. The rest of us can only dream of being such an amazing role model.

  7. What a beautiful child and what a fantastic mother you are! I have been following your rollercoaster life now for over a year and I am deeply moved by your wisdom and courage. Take care, Julia. Big hugs from France xxx

  8. Knowing you as I do, I don’t really understand how anyone that does know you would even think to comment on such a thing. You do what you can. You do what you want. Fuck the rest of them.

  9. I have never commented on a blog or any other social media post before, but I’ve been moved to this time.
    I read your book, and now your blog, because I am in remission from blood cancer, with young children as well. I needed to hear about other people’s experiences – what they did, how they managed – but am definitely not into group therapy, so your writing has been enormously helpful.
    But never, ever, ever, ever, has a friend, colleague, neighbour, passer-by, nurse, anyone, EVER tried to tell me how I should be living or dying, and how I should be doing that together with my family. People have definitely made mistakes, but no one has ever come close to that kind of violation. I would never have guessed such callous inappropriateness could happen.
    But as usual Julia you have dealt with it with charm, calm and kindness. You’ve also used it as an opportunity to educate us all a little more.
    And when they are grown women your daughters will have all of this material to look back on and read, and to be so proud, and just that little bit more aware of how much they too can achieve.
    All the best

  10. You are managing everything perfectly well.
    Your children are a blessing to you as you are to them.
    Hold your head high, breathe deeply and love muchly!

  11. You have the utmost grace and wisdom Jules – I applaud you in the face of your critics (of whom there simply can’t be many because most remotely sane and compassionate people would never find it in their hearts to criticize the incredible way you are moving through life right now). Your children are blessed to have you as their mum 💗. They are a testament to both you and Gaz. xx

  12. As someone who also has a terminal diagnosis i strongly agree with you. Doing life with my kids is so important. Sure we took some time to do a trip to the Gold Coast with my younger kids to make some memories but mostly just to have fun. Schooling Talitha during the day and reading her a bedtime story at night, listening to my son talk about his latest exploits at CIT, listening to my latest daughter talk about her life before she came to us and her hopes and dreams, spending family time with my married daughter and her husband, celebrating my Equestrian expert and her partner as they teach riding, train horses and win photography competitions and visiting my older daughter and her son and her fiance and rejoicing in their lives are all the things they will remember. I do it because it’s part of living life not because death is stalking me. Normal is very special. Love the day to day and appreciate the mundane. Xxx

  13. I have never posted a comment b4 and I feel a little anxious about posting this. My mum died 42 years ago when I was 10. From diagnoses to death was less than a year. We lived in a remote mining town in WA and mum spent a lot of that last year in a hospital in Perth, a thousand ks away, having treatments/surgeries. How I wish she could of had more joy in her last year because fuck me that woman loved to laugh. After her death I got a lot of solace, still do, looking at pics of her laughing and living joyfully. There is no “laundry list” that will make things any easier and no right way to go through what u r going through. Jules u get out and LIVE, leave lots of pics for your girls so they can laugh and remember that mum was ‘off the chain’.

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