As a youngster my eldest son Ruari showed little interest in any type of make believe kingdom, he was the kind of child who knew Mickey Mouse wasn’t real from the day he was born, he detested Harry Potter & he hated any type of fairground ride with a passion beyond anything I could explain without using serious expletives. He basically just wanted to play with cars, Lego & kick a ball.
Dylan on the other hand truly thought that an adult dressed up as Emmet at Legoland was the real deal, is desperate to go to Disneyland, refuses to take a ball to the park & I am pretty sure he would make Thorpe Park’s Colossus look like the curly slide at our local playground.
So when Latch (the wonderful Welsh Children’s Cancer Charity for whom I shaved my head months ago) offered Dylan a trip to Build-a-Bear I knew that I would be taking him to build an actual bear.
Amongst a multitude of other incredible things, Latch arrange wonderful experiences for young cancer patients so that they get the chance to enjoy a little bit of normalcy. This was the third of three trips to Build-a-Bear they had organised that week, they had also invited siblings & generously threw in lunch at an Italian restaurant for us all.
Dylan & I arrive fashionably late due to an undeniable amount of reluctance on my part; I am anticipating a certain sense of awkward depression that we will all do our best to ignore. The place seems closed to the public & appears full of children with cancer & their parents.
Having spent a lot of time on the oncology ward I am used to seeing sick children; it is a bit of a bubble on the ward, not a pleasant colourful bubble but it is a bubble all the same.
So as we approach the entrance I am surprised by my shock at seeing so many children of different ages, with different types of cancer at different stages, all gathered together somewhere other than the hospital ward. Oncology children milling about somewhere other than the bubble; some in wheelchairs, some bald, some with a feeding tube up their nose, some looking like there is nothing wrong with them at all. I recognise most of the families but I don’t actually know them, we usually just pass each other on the ward, nod in solemn acknowledgement & shuffle on with life.
It’s striking, it’s surreal & in my mind it’s just a whole other level of crazy. The bubble bursts & I try hard to suppress the thought process I can feel rising. The thought process where I contemplate how many children in total have cancer right here, notwithstanding those who were here on the two previous days, or those who turned the offer down, or those too sick to make it, or those who are too old or too young to join in.
Despite my best efforts, I feel my eyes glaze over as I plaster on the same empty smile as the other parents.
There is no denying that my child is having fun & for this I truly am so very grateful. It is just that it is not the sort of fun I had imagined or intended for him when I brought him into this world; it feels tainted.
Instead it is fun in a world where fun has actually been stomped on with a big heavy boot & is superseded with pain & suffering. Where as a parent the bruising effect of such a small three letter word forces you exhaustedly to find ways & means of creating fun because for a plethora of different reasons, your child can no longer indulge in fun like he once did. As a parent fun is now damaged. In my mind I have to reconstruct its meaning whilst trying to ensure my child does not see or feel the monumental effort required to laugh along with him without crying at the enormity of the stark contradiction in terms.
The mental gymnastics required just to step over the threshold of a Build-a-Bear retail outlet is mind boggling. My heavy heart never lifts despite the fun & the laughter, if anything it feels heavier. The push-me-pull-me of our future is laid bare & I don’t know if I will ever smile without pain again.
Latch have allocated each of the children a generous amount to spend. Dylan makes a Darth Vader bear. He has its heart inserted into its torso & the Star Wars theme tune packed into its paw. The bear is filled with stuffing, stitched up & then handed over. I am so happy to see Dylan’s excitement, this is his kind of fun but at the same time I am weakened by the crushing sadness of how I really see this entire experience.
As the bears are given life & each issued with their birth certificate we leave & make our way to the Italian restaurant. There must be places set for about fifty people if not more.
A lady I recognise from daybeds a few months ago appears. Her son is not with her as they came with one of the other groups earlier in the week, instead she has volunteered to help the Latch staff & is busying herself ensuring things go smoothly & everyone has a drink. She comes to sit next to me & we chat. Our table starts to fill up & a family of three sit down in front of me. We make pleasantries & the food starts to arrive.
I cannot imagine that any of us actually want to talk about cancer & all it brings, but it is the big, fat elephant in the room & tentatively the conversation turns to our mutually shared subject matter.
These are the conversations I dread (which is partly why I have not yet felt ready to befriend anyone who is also going through this nightmare); two sets of parents I conversed with whilst on the ward for months, both lost their young children to this dreadful disease & it is basically a full stop that I struggle to contemplate.
So here I am, hell within hell & about to engage in the cancer chat.
The family who sat down opposite me are lovely, their son is thirteen. He had a brain tumour & then spent fifteen months in remission. His brain tumour has recently returned & he has just started radiotherapy & chemotherapy all over again. His teenage styled hair is starting to thin, he hardly eats anything & he’s pale.
What do I say, what do I say? Seriously though, what do I say to the parents, to the boy, to Dylan? I am acutely aware that often people struggle to know what to say to me, it is so difficult.
I am just not ready to fully face other parents of children with cancer, let alone those whose children have relapsed; I’m just not mentally prepared.
I know that they are probably some of the few people who understand exactly what I am going through but I can barely get my head around my own child’s diagnosis.
I say nothing, the boy sits quietly & his mother talks candidly about how she cannot believe they have got to go through it all again. Their double despair makes my own despair multiply for a myriad of different reasons. The dull, heavy threat of the unknown is perpetually accompanied by the piercing sting of the daily “wait & see”.
My mind is numb, I am literally surrounded by cancer & I feel as if I’m drowning in its toxicity.
Just as I start to formulate a response, the lovely volunteer (whose eight year old son is a year & a half into his maintenance plan) suddenly gets up to leave. His school has called to say that his temperature has spiked. Her son is being taken into hospital by his grandmother & so she leaves knowing the likelihood is that he will be admitted for a forty eight hour course of antibiotics.
By this point I am void of mental energy; I am drained & I wish that I had never come.
There is a box in my head where I store my demons & I struggle to even acknowledge its existence, but in spite of this there is always something or someone that prises off the lid & forces me to look inside, prompting me to face these stark life stopping realities.
So whilst the children loved Build-a-Bear & I love that my child loved it, the truth about Build-a-Bear is that I actually found the whole situation shattering.
I feel trapped in a cycle of constantly having to seek happiness whilst submerged in unfathomable sadness & it is soul destroying. All I want to do is scream about the unfairness of it all…but what would that change?
Mind you, not screaming about it doesn’t change anything either.