If you have not got children then just try to imagine the thing that is most precious to you being held precariously over a raging volcano whilst you watch helplessly knowing that there is absolutely nothing you can do to prevent the fall if it happens. Knowing that either way fall or no fall, everyone will get burnt to some degree.
After the birth of both of my children, I remember a sense of mild panic when it came to the moment that they were allowed home. I simply could not believe that we were just allowed to leave the hospital with these tiny humans, so vulnerable & reliant on us to basically keep them safe in this beautiful yet treacherous world; there is no manual & nothing can prepare you for the mountainous realm of parenting.
These precious little beings create dreams within a future that you can only watch unfold in real time. I would often dream about my children’s futures; how tall they might be, what they might look like when they become teenagers, what kind of job they might have, what interests they might have…it goes on.
I hoped without fully understanding the concept that they would both be fine, happy, healthy, self-sufficient human beings; within that concept of hope there is only so much that I will ever be able to influence.
For six years, one month & six days I had the privilege of entertaining those dreams & hopes for Dylan. The moment he was diagnosed with cancer my dreams became nightmares & my hopes became fears.
Today I often wonder what we would all be doing if Dylan had not been diagnosed with cancer. I do not think about it all the time but occasionally something will happen & I will be inadvertently reminded of a past event or how things once were.
I know that the question “What would have been?” is futile, but I am only human.
I lived a full six years, one month & six days having no idea that cancer would become Dylan’s future. I know the photograph on my phone which marks the turning point, it is a picture of Dylan with his cousin. I scroll down from this point & see the precancerous world in which I once lived. I know the exact time, place, smell & sound that marked the moment when my dreams ended & my cataclysmic nightmares began.
One year, four months & one day into life with a child with cancer & it is fairly clear to me that a desperate kind of hope has replaced my dreams but fear is the overriding factor that spells out my future. So “what would have been” is futile because what “is” is so far removed from anything I ever dreamt of.
In my precancerous world I would often lie on the sofa with Dylan & run my fingers through his silky long hair, then one day I found myself running my fingers through his hair only to have clumps of it come out in my hands. His hair has grown back well, it is a completely different texture & is also now developing into large curls; he looks amazing but I still find myself wondering what his hair would be like now, would it still be long or would he have wanted it cut short?
Dylan is a bright & imaginative boy & he loves being back at school (when he is able to go). Whilst I am not remotely worried about his academic prowess I still find myself wondering what his reading & writing would be like had he not had to spend the best part of a year in hospital or at home because of his intensive treatment & had that treatment not caused him issues with peripheral neuropathy. It will be sports day soon (Dylan missed last year’s) & I wonder how he will feel about taking part, I wonder if he will struggle to run as fast as he might like, I wonder whether he will feel frustration at that very notion, I wonder whether he will be exhausted; I wonder whether he will be well enough to actually be there.
I wonder whether who Dylan is today is who Dylan would have been without a cancer diagnosis. Although he is only seven I know that he is altered in some ways. I will never be able to tell how much he has altered as our course changed so dramatically. Through my eyes he has been robbed of the chance to have a normal childhood but I wonder whether he will grow to see it the same way; this nightmare has altered us all.
The steroids he takes every month affect his personality, they have also affected his physicality as they cause weight gain. He has not gained a lot but the consultants have warned us that now is the time that lots of children on this sort of maintenance plan start gaining too much weight so they have told us that we need to keep an eye on what he eats & how much. I wonder if how he looks now is how he was always going to look.
In many ways it is like having a new born baby all over again. Basically every achievement that Dylan has made since his diagnosis is like his first, partly because he was suddenly unable to do so much but mainly because we came so close to losing him. Everything he manages to do now is like watching a miracle; I thought he was a miracle before he had cancer.
Before he had cancer Dylan could ride a bike but once he was finally strong enough to give it a go after months of treatment he almost needed to learn the whole process over again, more psychologically than physically. He was so unsure that he could do it & it was so hard to watch his self doubt. He has managed it & it feels better than the first time, although he still gets tired & cannot go too far.
Dylan used to love swimming & I find myself wondering how much he might have progressed had his life not been turned upside down. Of course he had to stop having lessons because he had a Hickman line dangling from his chest for nearly a year & was just too ill; now that he has a port he is in theory able to start swimming again but we need to be careful that he does not pick up any germs (his neutrophils are often low so he is susceptible to picking up infections), catch a chill or get too tired all of which could land him back in hospital. There is a fair amount of unpredictability with cancer so booking a course of swimming lessons at the moment feels a little risky. I also wonder whether he will feel uneasy about getting back in the pool. He is a confident boy but has developed a noticeable lack of self belief in many areas & I wonder how this will impact him further down the line.
Guiding & helping him through the reality of cancer as as he gets older is not something that I am looking forward to. I wonder how he will deal with this reality as he grows up, I worry about the psychological impact all of this might have on him; I just have to wait & see.
Parenting is a mine field at the best of times but the added worries & fears that cancer brings are just endless…not least the silently nagging worry about how long he will actually live. I wonder about a lot about stuff that may not really matter because all that matters is that Dylan is alive; I still wonder though.
I made an Instagram story the other day, “A Short History of Dylan”. It helped me focus, I realise that in many ways Dylan is of course still Dylan. He has had to put a few things on hold on this journey, his path is by no means clear & he will probably continue to have to change pace & direction for a long time to come. His patience & psychological endurance have reached new heights as he has been poked & prodded so much it now appears normal. He is in many ways still the boy he was but of course I have no idea what he might be doing now had his course not been altered so dramatically.
He has learnt things that he may never have done; he has learnt things that most people will never understand in their lifetime.
I cannot allow myself to dwell on what might have been or I will send myself to the madhouse; we often have a pleasantly dreamt up predetermined “life” in our minds so when grave uncertainty is presented to us we have the potential to go crazy. Living with grave uncertainty day after day is a nightmare. I am not the same person I used to be, none of us are. I am a supercharged version of the person I once was, perhaps ironically in a spiritual way I am slightly better for it (that is a desperate hope because of course in my dreams this was never meant to happen).
The moment that I was abruptly forced to wake up from my dreams into a reality where I had to imagine that I might lose my child, the moment that I was staring at him lying in a hospital bed & was fiercely confronted by the shocking notion that he might not make it through the next minute because he appeared to be slipping away right in front of my eyes did something irreversible to me; I cannot unsee & I cannot unfeel.
My dreams stopped & my nightmares began; I can only hope that my worst nightmare does not come true.