I never knew that raising Ruari would prepare me for so much of what I’m dealing with now. I swam against the tide alongside him for so long & in doing so we both nearly drowned on several occasions. At the time it seemed so hard but I would do the same thing all over again because I know that he’s happy; he’s living his own story & that takes immense courage.
Pretty much every morning that Ruari left the house whilst he was at secondary school I would give him a hug & say “just play the game, please darling”, it was pointless & I very quickly realised that I had to help him negotiate an education that didn’t quite suit him. His goal was never to go to university; had it been I have absolutely no doubt that he’d be there now. He didn’t want to “play the game”, he wanted to do it his way. He steadfastly insisted on swimming against the tide every single day; he was a square peg being pushed into a round hole for the most part. People kept hammering but no matter how hard, that peg was never going to fit into the predetermined hole that his school & so many others had made for him. He wanted to challenge his own expectations, he wanted to reach his own milestones. He knew he needed school for that but he also wanted to challenge the preconceived notion that we should all move along the same path, in the same way, gaining similar pieces of paper with letters on which apparently show our worth & apparently make our future look brighter. I recently told him that I had an inbuilt determination to see him through school in the best way I could. I am very aware that society leaves little space for the law abiding non-conformist; it beats the life out those who don’t fit into those holes…but only if you let it.
Growing up my mother continually told me that I should be a doctor or a lawyer & that “only A’s & B’s will do”. The pressure was endless, I worked so hard to please her that I almost shut my eyes to my self. I didn’t want to swim in her blindly created wake; I wanted to live my own story, I wanted to be a designer. Needless to say we never got on; her ego was too big to see me as an individual & resentment has very deep roots.
I’m not here to push my children into society’s slipstream, I’m here to show them life; the sunshine as well as the rain. I’m here to guide them if they need me & to encourage their individual personalities so they feel able to step confidently onto whichever path they choose; happiness, independence & self sufficiency doesn’t just come from 12 A*s & an inability to use a washing machine by the time you’re 16. My purpose is plain & simple, it is to love them for who they are; not the idea of who society thinks they should be.
Ruari’s grit, determination & self-belief have served him well; he has learnt from making mistakes, each time picking himself back up & adjusting his sails all without losing sight of his goal. He had just started a new school for sixth form & little did he know that eighteen months before his senior education was set to end he would have to call on all of those qualities & more in order to develop in a way that no school lesson could ever teach him, because his little brother Dylan got cancer, aged six.
Now that I am bringing up a child with cancer I find myself swimming against slightly more than the tide; I’m trying to stay grounded through a relentless tsunami.
Since this term started at the beginning of September Dylan has managed a total of almost 17 days. He’s got four days left this week & then it’s half term; I’m managing my expectations.
Last week he attended school for five full days in a row for the first time since his gradual return in September 2017. It was this event that got me thinking about milestones & expectations because it sounds odd to say that going to school for a whole week aged seven is a milestone.
Paradoxically so many of us are given deliberate milestones & expectations before life begins; it seems we are hindered before we’re even born.
That little red book in which the health visitor plots & charts growth & weight, that percentile line, those home visits where your child is assessed at various stages & ages to see if they fit into the expected average socially acceptable norm; the fears we face when they don’t, the contentment we feel when they do & the ridiculous state of euphoria we feel when they surpass the average & hit a statistic straight out of the ball park all stem from predetermined expectations; it’s banal.
If we’re blessed with a modicum of wisdom we learn quickly to manage our expectations because the thing is, on the whole & if our children are fortunate enough to reach adulthood unscathed (I am acutely aware that some children don’t ever get the chance to take that journey) then those stats mean absolutely nothing on their own. The range of different influences we experience as life moves on is not always affected by whether we had a big head at birth or were deemed overweight at six months old. It makes very little difference if we could stack three building blocks one on top of the other at 18 months or whether we could write our name by the age of four because on the whole (& I know I’m generalising but for the sake of keeping this blog post shorter than War & Peace bear with me) most people can read & write by the time they leave school.
There is so much pressure once we enter the world to conform & to attain milestones. We are audited by our parents, reviewed by our caregivers & assessed by our teachers. The average, the above average, the below average; whichever realm we “fall” into we are scrutinised. Of course I know that childhood milestones serve some purpose in terms of picking up a myriad of different underlying developmental & medical issues, milestones are so far reaching & yet often so starkly limiting; there’s a lot to be said for the valour of true parental intuition.
According to the milestone charts I had two “normal” children, both Ruari & Dylan fell into the “above average” statistics. They were both a healthy weight at birth, they thrived & developed ticking all the boxes in their little red books. They walked “early”, talked “early” & learnt to read & write “early”. I knew how lucky we were…even with a square peg! Those charts are just the beginning of a lifelong surveillance. Dylan had got to 6 years old & then suddenly so many of those milestones were lost to chemotherapy induced regression & our expectations were instantly turned into a painful hope.
I still have two “normal” children it’s just that one very sadly has cancer & I realise that I have taken these seemingly simple milestones for granted; all of a sudden Dylan couldn’t walk up or down the stairs, he couldn’t hold a pencil properly, he couldn’t run, he couldn’t concentrate, he couldn’t go to school, he couldn’t climb trees in the park, he couldn’t ride a bike, he couldn’t go swimming, he lost “too much” weight, he gained “too much weight”. Developmental milestones turned into survival milestones; stark indications between life & death.
I want more than anything for Dylan to live long enough to be able to choose a path & then walk it. I have no expectations, just a burning hope. I hope he gets the chance to decide whether he does A levels or wants to go to university or neither. I hope he gets to reach his own milestones. Really, I just want him to be happy. I will never know how much happier we all might have been if cancer hadn’t got in the way & stamped all over the beginning of Dylan’s life; that is down to fate.
Watching him learn to ride a bike again, watching him be able to walk up & down stairs again, seeing him try so hard to hold a pencil properly whilst clumsily writing, listening to him read, watching him skip, brushing his hair again, watching him sleep…all of these things are milestones for the second time & for which I am eternally grateful. Miraculously Dylan’s still here & now everything he does is like he’s doing it all for the first time & watching him do all of these things make me very happy…in a very sad way.
I used to take it for granted that my children went to school everyday, now I marvel at the fact that Dylan’s still here to even go to school. It’s not “normal” to only be at school for 17 days in half a term but it is when you’re a child & you have cancer.
Cancer has made me realise that perhaps we all need to reapply ourselves because sadly we live in a world where “expected milestones” have been laid out before we even take our first breath.
Perhaps it’s time we take a step back & renegotiate life’s terms (I haven’t even touched on being born a certain race or religion or all the other historically crazily accepted preconceived notions about how we’re meant to traverse this tragic & beautiful planet).
Perhaps we all need to live our own story a bit more, to make our own milestones & help our children do the same.
Perhaps we need to reflect on who our children really are & to see their desires through their eyes & even if it feels like we’re trekking non-stop over the bloody Himalayas or swimming indeterminately through the roughest oceans we stay with them because we all only get one life.
Perhaps we should all be prepared to live on life’s terms & manage our expectations because absolutely nothing in this life is predetermined.
Perhaps we all need to remember that fate will always be larger than our expectations.