There is a vast network of cells within Dylan that basically started behaving abnormally & growing in an uncontrollable way. This network has created havoc within his body & consequently our lives.
One of the many dictionary definitions of the word network is “a group or system of interconnected people or things”.
Networks can be so powerful in so many ways; they can achieve greatness when they operate effectively but if certain elements within them stop working as they should then things can start to break down.
I know that some people find my blog helpful, I also know that some people find it hard to read. It is difficult to imagine the desolation; some people do not want to. Some may not be overly interested as it does not directly affect them & some people just find the honesty a bit too raw to digest.
I get it; I used to watch programmes like Children in Need from the comfort of my sofa & try my best to empathise. I would use the incredible network that was at my fingertips to pick up the phone & donate, I would buy merchandise for my kids perhaps raising a network of awareness along the way. I would also hug them that little bit tighter in total gratitude for them being unscathed by such horrors; but then horror struck & suddenly I find myself with a child in need.
The thing is that on the whole, until the shit really hits the fan in your life or in that of someone close to you, your awareness is limited & why without experience would it not be?
It is only by really looking at any difficult situation head on that we become aware & in our own way try to make a difference if we feel so compelled.
As a consequence of the shit hitting the fan in our life, I am now a mother in need. I need all the help I can get & I have learnt very fast over the past year to take any help that comes my way. It goes against my fiercely independent nature but of course my nature altered rather abruptly in December 2016.
After Dylan’s diagnosis I was unsure how to approach my own network; I was unsure how to be honest or even whether I should be. To begin with I did not have the time to be honest & more poignantly neither did I actually have the courage. I would carefully assess my captive audience to see who I thought could cope with the reality regarding the actual living hell I was witnessing on a daily basis. On occasion I would try to smile & insinuate that everything was going “ok”. I would often walk away from conversations having made myself feel totally numb by trying to spare the feelings of others. I also spent a lot of time trying to avoid a lot of people.
The difficulty comes with finding the courage to be honest within what is an already established network that is seemingly firing on all cylinders in a really good way; the difficulty comes with trying to keep a sense of balance. It is difficult to witness plain unadulterated honesty & it is difficult to hear it. Introducing such a shocking entity into a network that has been functioning just fine for years is risky. It scares people, they often feel uncomfortable in knowing that there is little they can do to change a situation; it certainly scares me & makes me feel uncomfortable wondering whether or not I should open up & talk candidly about Dylan’s cancer. I do not want to frighten people away but I have finally realised that it is not my problem if people cannot handle it. I realise that if they do not want to hear it they will make sure that they do not have to listen.
I now know that I need to be open, I now know that I need to admit how I feel & I now know that if I do not do that then I will drown.
There are so many elements of Dylan’s cancer diagnosis that have humbled me, not least having to succumb to the vulnerabilities this illness brings. In an ironic way it has brought a pleasant exchange of loving respect. The patience that I have felt from others & the desire from so many who want to help has lit my soul.
I have gained more than I ever imagined possible with the help of an incredible network. The unavoidable humility has enlightened my mind & given me perspective above & beyond what I thought was real before Dylan became ill. It is as I have said before, a defenseless position that I now find myself in but I believe that not acknowledging it would be damaging not only to myself & those around me but moreover to Dylan & Ruari.
At the beginning of all of this someone told me I might lose some friends & make some new ones “along the way”. I can safely say that as far as I am aware, the amount of friends I have lost to date is zero & the amount of friends I have made is the polar opposite.
Within my network I have my family; Nick, Abi & Jamie. This combination has always been precious but more so now than ever.
Included in my network is the NHS; the system they are just about managing to keep alive has basically in turn kept Dylan alive thus far. The staff are some of the most beautifully gentle caring beings I have ever met.
On top of that I really had no idea what a powerful network social media could be; the support I have had from people on platforms such as Instagram & Facebook has been enormous & there are so many of those people I have not met & perhaps never will.
For months on end a network of long standing, well established friends & the loving parents of the children in Dylan’s class supplied meals every week for us to keep in our freezer so that we did not have to think about cooking. I cannot begin to tell you how much of a difference this made to our lives. I am thankfully no longer in that situation & hope that it remains such. I still need help though as does Dylan & countless other children like him.
The reality is unchangeable & it is stark. It is both frightening & utterly overwhelming but thanks to this vast network I feel a little bit ok; I know that I am not alone & I feel in some small way that I am perhaps making a difference by bringing honesty to the table.
Cancer brings a whole set of other problems when it comes knocking at your door. For the carers it is an excruciating daily mental battle. For those suffering with cancer it is often the side effects that get the better of them; the side effects brought about by the incredibly gruelling treatment that they have to undergo. The need for blood transfusions, platelets transfusions, antibiotics due to exposure to unavoidable illnesses, the lack of a sustainable immune system all bring countless continuous concerns, medical intervention for reasons other than just cancer is all too common. Like so many children Dylan had chemotherapy in hospital on his birthday & again as it was for Dylan, many of them are in hospital for Christmas. None of this had ever dawned on me until it happened to us & why would it?
Last Sunday was World Cancer Day. The reality is that it is world cancer day everyday in my house.
I know that some of you have given blood. I know that some of you have worked tirelessly at fundraising. I know that many of you have put your spare change into a charity bucket. I know that a lot of you will have cooked a meal for someone like me. I know it did not directly change your life but it has changed mine for the better & helped indirectly to save my son & others like him.
Some very clever people are working extremely hard to ensure that the vast network of abnormal cells within Dylan’s body is brought under control; I am eternally grateful for their efforts.
I am also eternally grateful for the efforts of some other very clever people who have been working tirelessly to ensure that my network is filled with love, care & support.
By just taking the time to read these posts you are helping to create a network; by sharing these posts you are contributing to raising a network of awareness. Your awareness makes a difference to so many people & your actions due to your awareness may actually help to save a child’s life.
It sounds a bit dramatic doesn’t it? But it is true.
So thank you network.
Thank you for:
Not breaking down when I needed you most.
Always letting me cry on your shoulder.
Always letting me get drunk in your kitchen.
Always listening to me.
Always holding my hand.
All of your heartfelt support.
Your increasing awareness.
Letting me be honest.
But most of all, thank you for stopping by.
You will never know how grateful I am.
This network is a precious powerful collective & goes above & beyond every single day.
Follow more of our journey on Instagram @the_tightrope_walker