I thought long and hard about what subject matter my first public post should be on. I have decided to follow the M.E.L.A.N.O.M.A pattern to give some order and plan but to start with “M”; should I start with “Melanoma and Me”, “Mortality”, “Mental Health”, “Menopause”….all very important subjects to talk about but instead I have chosen “Motherhood”. Why? It is probably the most important (and hardest) role I have ever had and it defines how I see my purpose. I also do not want melanoma to be the major factor in my life….Ruby is! Well, Ruby and Ryan are but Ryan will feature in later ramblings.
Ruby was not planned and in fact having a child was furthest from our minds at the time. I had only recently moved to NZ less than 18 months before I found out I was pregnant and Ryan and I weren’t even living together. However, the stars aligned and Ruby came along, defying the odds and perfectly slotting in before cancer and menopause took away any chance of further pregnancy (sorry Ruby I know you keep asking to be a big sister!).
I read once that cancer is tragic for anyone regardless of whether you have a young child or not. This is true; as a person suffering from this illness is always someone’s daughter, son, brother, sister, mother, father, husband or wife and are loved by someone. However, navigating cancer with a young child is difficult in a different way and tragic for what ,I feel, are slightly different reasons.
You do everything you can to protect your child from harm, pain and hurt yet this is something you cannot take away, you cannot hide and you cannot remove it from their world. I am trying to help her navigate the basic emotions that 5 year olds are normally exposed to – you know - hunger, tiredness, the peanut butter isn’t on the right side of the toast and the chip touched the tomato sauce when it wasn’t meant to….. 😊 all the whilst managing the biggest emotions known to humans myself, and worrying about how to explain it to her.
For me, the pain of knowing that Ruby could grow up without me is unbearable (I am not being negative - just being realistic and practical). I don’t just mean that I am upset that I will miss big events, like graduating school, her wedding, waving her off on her OE etc but not being there to guide and comfort her when she has a hard day at school or when her hormones take over and she wants to rage or cry (or both!) is heart breaking.
Knowing the pain she will go through, the grief of living without her mum kills me. I want to hold her, comfort her and tell her it will be ok and that I will be there with her always. Except, I won’t be and how I prepare her for that or cope with it myself, I have no idea!
Ryan and I have tried to bring Ruby up to be confident, happy, kind and anxiety free. Given what has been going on since before she was 3 that has not been easy. We are stressed, we are tired, we are frightened and anxious ourselves. So to not pass that on is tough. Very tough. But we have by and large achieved it (so far!). We are very proud of our strong willed, confident, happy girl who is so far not showing any signs of being anxious (but she is only 5!).
We try to shield her from what is happening whilst being honest with her. She asked me once “are you going to die mummy?”…..My stomach turned, my throat dried and tears sprang to my eyes but I managed to smile and say “we all die one day darling”. She looked at me, comforted and said “ok, that’s ok then” and then carried on talking about something else that was terribly important to her as a 4 year old (some toy I think!)! I was left a little shaken but also I was left with the realisation that if I stay calm, comforting and act as though it's no big deal she will react the same. Had I broken down, sobbed my eyes out and wailed that yes I would and that it would be awful, it would have frightened her.
In life, she will learn that shit happens but that reaction is EVERYTHING! How you react is the only thing you can control.
What is going on for us is shit but I am determined to be happy and to take a day at a time – this helps me cope and to live as if there is nothing wrong with me. This, I hope, I pass on to Ruby; I hope that beyond all else Ruby chooses happiness and positivity – it really does get you a long way.
My approach to Ruby has always been to see life through her eyes but also to think about how she will remember me. Do I want her to remember a stressed, busy, angry mum who is always hurrying her along and never giving her time to learn, play and experiment? – NO!
Don’t get me wrong, I am not a saint and she is a head strong 5 year old so the arguments are fierce at times but on the whole we try to make decisions and respond based on how she will remember me and her childhood. It adds a fresh perspective and although it seems obvious, it is amazing how often things I do automatically, I then change to make more child focused.
We try to give Ruby opportunities and experiences that will produce memories that will last a lifetime – this is hard when balancing paying for medications (see “E” for Expense!) especially when a lot of experiences cost $$$$ so we work full time and try to find a balance.
I really do hope she remembers the walks with me holding her hand, the kayaking when I sat behind her, the skiing when I waited at the bottom of the slope to catch her and the family time we have worked hard to provide for her. How I studied every night (after the bedtime battles- parents you know!) to requalify, to earn more, to provide more….but also to have more time.
Time with our families and our kids is precious. In those moments that my head wants to explode and I just want to have quiet time, I stare into space and remember that I want to hold her forever and cuddle her sleep for as many nights as I can. I want to see her smile and feel her small hand in mine for as many days, months or years as I can. I will remember when we need to get out of the door for school that instead of yelling “hurry up” I will bend down and take a moment to breathe and say “how can I help you?”.
There are times when I wish I could tell her that she may regret telling me she doesn’t like me ( because the ice-cream isn’t the right type and she’s tired) or that when she pushes my hugs away to be independent that one day she will dream of that hug, but I can’t. It isn’t fair – she needs to be a child and to have the innocence of childhood for as long as possible. I just remind her to be kind and to make the most of people when we are with them.
I grew up with an irrational fear of losing my Dad ( no idea why – he’s still here!) but I would (and still do) pace if I know he’s out at night – even when I am 12,000 miles away! I don’t want Ruby to carry this fear.
So at the end of this ramble, how is best to approach a parent’s illness and likely passing with a child without causing unnecessary or premature fears and anxiety – I have no idea!
I don’t have an answer and each child, family, situation is different. In time, the explanations we give Ruby will change as she does but I will always be honest and answer her questions.
Ruby, if you read this one day, my lasting advice to you will be:-
· Be kind ALWAYS
· Be humble
· Make your own way and don’t expect a free ride
· Follow your heart but use your head
· Know your own mind and trust your instincts
· No one else will fulfil you
· Growing up and getting old is a privilege
· I AM ALWAYS WITH YOU
· I AM FIGHTING SO BLOODY HARD
· I LOVE YOU!
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