Consistency: The Battle

For months after his diagnosis Dylan was inundated with gifts. We spent Christmas in hospital & before Christmas Day had even arrived his room looked like Santa’s grotto. Initially there was no time to consider the impact of a continual stream of presents & treats but it did not take long for me to realise that the effects of this situation were not remotely positive for anyone.

I try so hard to show my children the values in life both metaphysically & materialistically. They do not expect to just have things handed to them on a plate & when they do receive any gifts their levels of appreciation are most certainly genuine & heartfelt.

However, a real problem arises through having a seriously ill child; the immediate instinct is to hold them as close as you can without interruption then slowly you want to make sure they are as comfortable as possible…not just physically but also mentally. When your child is confined to a hospital bed through life threatening illness there is very little they can do, they do not have the energy & apart from anything else they are attached to tubes & machines so could not go far even if they wanted to. There are only so many books you can read, films you can watch & Lego sets you can build so iPads & computer games become the norm as does receiving an inordinate amount of presents from family, friends & various charities.

I understand that people just want to help & I’m pretty sure that nobody expects thanks; they just want to do something nice for Dylan.

I bring my children up to say thank you on receipt of other’s generosity; it just got way too much. It is difficult to explain why you want people to stop being so generous without sounding ungrateful but it just became so invasive & started to have the opposite effect than was intended. Although all of the gifts have been thoughtful & all undoubtedly have been given with the very best of intentions, they all simultaneously started to clog up the channels of discipline & genuine value that I hope for in my children. It became so normal for someone to send something or to drop something off that Dylan started to appear blind to it. In a way, I am glad he was blind to it because there really are only so many times you can say thank you without starting to sound & feel a little insincere.

Perhaps more poignantly from my perspective the painful irony in the sentences “Gosh, isn’t that lovely?” & “Aren’t you lucky?” is just too much to endure; in my mind he is anything but lucky.

I started to put the gifts into a box, there was little point in giving him more & more stuff & little point in me getting wound up psychologically by the whole scenario.

Dylan has been given incredible gifts from different children’s cancer charities; he has had a weekend trip to Legoland, an iPad, personalised painted converse boots, a trip to Build-a-Bear…it goes on. I would give absolutely anything for him to not be in a position to receive any of these things & yet there have been occasions where some have feigned envy or told me that their child will be so disappointed that they cannot do similar things; “Isn’t he lucky?”. I have at times had to hold my fists down by my sides in order not to react to what I perceive to be a sheer lack of empathy. My head would be screaming that the only reason he receives such “treats” is because he has cancer which means that amongst other things we cannot travel too far from hospitals or go abroad for years due to what seems like the longest treatment plan in the world & he cannot always partake in a lot of things that other children can. It is paradoxically devastating to receive such wonders through critical illness.

Most parents have their own method of discipline for their children & I am by no means extolling the virtues of what is right or wrong as it is entirely down to individual choice, but one thing I soon noticed on the ward was that some people dropped any form of discipline altogether. I kind of understand why; it is so hard knowing that your child is seriously ill & may not live to see their next birthday or Christmas but, on the occasion that I allow my mind to wander into some sort of future (long term or short term) I still want Dylan to have friends, to not become entitled & to understand the humility in his own & other people’s generous actions. He is seven & in my mind needs to be treated as close to any other seven year old child in order to feel as near to normal as he can. Finding the right balance between reward & overindulgence with a very ill child can at times feel virtually impossible. As parents of very ill children we are constantly trying to push away an unimaginable future in order to try to create a here & now that will make any possible future the best it could be.

My way with my children has been a kind of “three strikes & you’re out” method. This worked pretty well with Ruari (although I do remember putting him in the bath with his shoes on when he was little because he refused to take them off in some weird toddler fuelled power struggle…he never did it again though & fortunately his shoes survived). My point is, Dylan & Ruari need consistency (Dylan probably more so now he is ill). He knows how I operate although he has a slightly different approach to the three chance rule; he basically ignores it by trying to engage in what he clearly thinks is a reasonable argument even though I will have told him five times that he is not having popcorn for breakfast & that there is no way that he is playing Minecraft at 06.30. In stark contrast to his older brother’s acceptance to certain rules Dylan will attempt to grind me down & when I eventually lose my temper he will go away for fifteen minutes, return with his guitar & serenade me with a love song that he has made up in order to get himself out of the tight spot he quite clearly knew was coming. Basically he is a little charmer & was put on this earth to make people laugh & bring as much entertainment as he can possibly muster.

Every morning without fail before Dylan became ill, he would wake up in his own musical! From the tiniest age he would just lie in his bed & sing for as long as we left him, he never got out of bed before he heard anyone else get up; he just sang.

Once he became ill the singing stopped; he was so unwell & in so much discomfort that most mornings started with tears or a deafening silence. The psychological effects of this on me were so hard to deal with. I just wanted him to be happy but mostly I just wanted him to be healthy. As I could not have the latter I would have to take great strides not to overindulge him in material things that brought only fleeting moments of happiness.

For a while I would wake up in the newfound morning silence wondering if he was still alive. I had forced myself not to sleep in his room because the knock on effects of that would be bad for both of us. Sometimes if he was really feeling it we put him to sleep in our bed but within ten minutes he would ask to go back into his own room, I did not want to interrupt his approach to bedtime for the sake of my own mind; he needed & still needs consistency. Recently he has resumed his dawn chorus & I cannot tell you how much that makes my heart soar. I truly believe that in keeping our values & underlying principles consistent it has in turn helped Dylan & myself to realise that despite this vile illness taking hold of him, nothing within our sanctuary has changed. There is no confusion & there is no conflict. I have to remember that he is seven, I have to remember that children his age will act in certain ways & will get into trouble if they misbehave. On the whole though they do not expect a treat every time you visit the supermarket or someone pays them a visit; this is what was starting to happen with Dylan. He is strong enough & clever enough to know that he cannot always get his own way, that he needs to do things at school with his peers, that he can play outside at break times instead of sitting in the classroom, that he can brush his own teeth again, that he can get his own breakfast cereal in the morning. Despite having previously been able to do all of these things & much more, for months Dylan was unable to perform some of the simplest tasks once his treatment started; he does still genuinely struggle with some things but by reminding him that he is capable, by disciplining him when necessary, by not overindulging him on a whim & by being consistent Dylan can still be Dylan. All of these actions I believe have created an environment for him to feel safe & regain confidence in himself & his abilities. It is so easy to see why some people might do the opposite but I have hope for Dylan.

On the rare occasions that I dare to look into the future I want him to have friends, be thoughtful, kind & moreover happy. I do not want an entitled diva with no sense of value.

I have no idea of how long we will have to pursue this journey but I suspect the repercussions will be lifelong.

I do not know how else to bring perspective to childhood cancer other than by writing honestly about it. The elements of life that you would not even begin to imagine before a cancer diagnosis are pushed in your face with shocking clarity on a daily basis.

I am lucky that Dylan is alive but I will never know what would have been had he not been diagnosed with cancer. Alongside the overwhelming regime of nasty medication that he is set to take for the next two years, I can only hope that by remaining as consistent, fair & loving as is humanly possible that he has the chance to reach his full potential.

It is by no means normal to be on the receiving end of so much heartfelt generosity, it is not normal to be seven & have cancer & moreover it is not normal to keep finding ways to explain to your child that they are receiving so many treats because they have cancer; how do you explain it all to a child without banging on about the reasons whilst at the same time trying to maintain a sense of normality? Rewards for being ill are so difficult to steer. Of course I want to be able to distract my very ill child from the pain & discomfort that he is going through & of course I want to spoil him but as time continues I am ending up having to navigate an altogether different beast.

The battle for consistency is real & it is unimaginably hard but it is essential for giving my boy the tools he needs to navigate his way through this unexpected & difficult journey.

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