Something’s changed, I guess it had to & in all honesty I knew it would.
I have learnt that there is only so much you can take before you realise the path you’ve been crawling along up the never ending mountain for the last couple of years can only get you so far.
Along much of that uphill path I’ve been moving slowly on my hands & knees for fear of tripping over, although I’m pleased to say that I did eventually manage to walk a decent chunk of it on my actual feet. I already knew however, that it’s when you’re on your feet & the ground falls away from beneath you that it hurts the most as there is further to fall.
Just a few months ago whilst walking in the most upright position I felt I’d been in for a long time I fell on some very stony ground & it hurt a lot, not quite as much as the pain that Dylan’s cancer diagnosis has brought but an altogether different kind of pain. It was the kind of pain where you look at both of your children & your already broken heart breaks all over again & you find yourself wondering how on earth you’re going to navigate the path which has simultaneously morphed into a landslide of epic proportions whilst carrying both of them at the same time.
I just didn’t see it coming & I think that is the whole point…
I have learnt that living whilst waiting to get knocked down again is no way to exist, it’s just that sometimes when so much seems to keep coming at you it feels like the safest way to survive; but I have also learnt that whilst trying to navigate a landslide that consists purely of sharp stony gravel, every time you try to take a step further you slip backwards & that the only option is to stand still & let the ground settle. In turn, I have learnt that standing still does not delay progress, if anything it actually gives you the strength to get that bit further when you’re finally ready to restart the climb.
As I reflect over the last year (in fact the last two years since my then tiny six year old boy was diagnosed with cancer) I am able to see, feel & acknowledge the abject fear & the indescribable pain, all the while I have learnt that life continues albeit in a very altered state; we have dealt with the usual challenges that everyday life brings on top of dealing with the challenges that a paediatric cancer diagnosis brings.
It is hellish trying to navigate the constant obstacles that are suddenly thrown onto that path, often they simply appear & I find myself colliding with them with some force. I emerge altered yet again, stunned & dazed yet again. By the time I have come round from yet another blow I am forced to deal with even more. Each time I become more mechanical, more distant & more numb; I have learnt to recognise myself through these processes & I have learnt to let them take their course; panic is not a useful option.
Whilst on this path I have absolutely no clue as to the destination, I just know I’ve got to stay the journey as best I can. It’s not a case of following the light because quite simply there isn’t one.
That might sound defeatist but I can assure you it’s not; there is not an iota of certainty where cancer is involved.
Living with cancer is basically living in perpetual uncertainty; it is to all intents & purposes a black hole but I’ve learnt that as a family we have been able to create our own light within the darkness. I have learnt that where laughter was once painful it is now an essential form of self care & is no longer laced with guilt. I have learnt to accept that whilst I can still laugh & live it feels different to before; it is guarded & sullied by the shadows that cancer brings but it is laughter all the same & that in essence is light.
I have learnt not to rely on others to be a constant light source, it has to come from within & that means decluttering my mental & physical surroundings in order to make sure any light I manage to ignite shines on what is most important to me. I have learnt to save myself for the things & the people that really matter, the ones that make a positive difference & in doing so I have learnt to let go of those that don’t; I am not here to carry anyone other than my children. I have learnt that there are so few people who actually understand the light within this darkness; I have learnt that having a child with cancer can be a very lonely place but I have also learnt that I am not alone.
A few years ago I might have felt a bit savage going through such a process but then a few years ago I wasn’t in a situation that required such meticulous execution.
The clinical psychologist I started seeing at the beginning of November has given me the space to put my thoughts & fears in order. I know that I was actually doing pretty well…I’ve felt this shift before. After the most cathartic week-long summer holiday in West Wales, September was going to be my springboard. Sadly it didn’t work out that way as Dylan was struck with viruses, Ruari’s father was diagnosed with cancer just days before Ruari turned 19, Ruari broke his foot (again) & was struggling to deal with his “double cancer hit”, Dylan broke his foot, had copious amounts of chemotherapy & two lumbar punctures to list just a few things. From mid-September onwards my mind went into partial regression & took me to completely unfamiliar places. I struggled to find words, I struggled to move from the spot I was in & I struggled to absorb the catalogue of seemingly endless heartbreaking situations that arrived on top of the heartbreaking situation we were all already in.
After I completely broke down whilst sitting on the little red sofa in the psychologist’s office (I’ll write about that seminal moment another time), I knew I’d hit a new low but being brutally honest about how I was feeling was the beginning of my climb back up.
I have learnt that my feelings haven’t changed one bit; I would not wish this constant pain on anyone but I realise that I am learning to live with it. I have learnt how time has allowed me to evolve & to rewrite my needs as Dylan’s cancer journey unfolds. I have learnt a kind of patience that most won’t ever need to muster whilst simultaneously losing patience with things that most will never need to comprehend. I have learnt to breathe whilst being at the bottom of a pile of total & utter chaos & I have learnt that it’s absolutely fine to take your time to get back up & dust yourself off. I have learnt that absolutely nobody stays upright at all times (actually I already knew this), however it’s taken time for me to apply this to myself. I have learnt that despite this last year occasionally feeling a little bit like a period of self-sacrifice, it has actually been the most fulfilling period of consistently trying to be the best mother to both of my boys for different but equally earth shattering reasons.
It has been exhausting on every level & through it I have also learnt that I just cannot do it all.
At the end of 2016 & for the majority of 2017 I dipped in & out of being present; time would only allow so much as I was carried along on Dylan’s intensive cancer conveyer belt.
2018 has been a period of incredible progress for both Dylan & Ruari & they both still have a very long way to go on their own individual journeys. Little do they know that they have probably taught me some of life’s most valuable lessons & as such I have learnt to start walking a slightly different path; a path that they have both laid before me where beautiful flowers of sheer pride & gratitude bloom & blossom with every step I take.
As the new year approaches I am most certainly not about to jump on some sort of positivity bandwagon & neither will I be catching a ride on the negative one. Instead I will continue to do my best to remain balanced right in the middle of my reality, with openness & honesty about what it is like to be the mother of a child with cancer. I will continue to “walk the tightrope” because I knew from day one that the only way I would be able to climb this never ending mountain would be all about balance; my balance. Dylan & Ruari need my balance; this is something I have never needed to learn, this is something I have known since before they were born.
Two of the most useful things I have learnt so far are:
1. There is today.
2. Keep climbing.
This is what I will carry with me into 2019.