When you join any community the reason you are there is due to you having a particular characteristic in common, interest or in wider terms you live in the same area.
This can create a great sense of similarity, belonging, purpose and even fond likeness for others within the group.
That may under normal circumstances you wouldn’t have met, or even really known on a personal level.
I’ve always been a great believer that within life you come to many forks in the road within your life journey.
These forks may give you multiple options which need to be considered to make a choice.
Some of us may like the secure option, stay where you are and others may be risk takers, who can see there may be great gain from taking a chance.
But, in some journeys you don’t have a choice, the road has been granted with no way out.
When Billy was 18 days old, he was granted the third option.
A one-way ticket on a very new life journey that I can only describe as a bumpy rollercoaster ride where there was no way of getting off.
This one-way ticket was extended to both parents, extended family both blood and as I call them chosen family and our friends.
Everyone was touched by Billy’s diagnoses one way or another and this was extended over time to our large hospital family, acquaintances and people that I’ve never met/spoken too physically.
In Billy’s wisdom he entered us into three high risk category’s, liver failure, organ donation and cancer.
Within any community that holds so many vulnerable individuals together, there is going to be significant loss along the way.
Death is a tricky subject and becomes even more upsetting when you are talking about young children.
The thought that you may lose someone that hasn’t even lived life or fulfilled their dreams is soul destroying and can break the strongest of family units.
Over the last 6 years I’ve realised more than ever that there are people living similar lives’ as us.
A life of unpredictability, fear is a norm, hospital is like a second home, plans don’t exist and a place where you accept that your most prize procession is tortured regularly to save their life.
An interesting concept to get your head around unless you’ve lived it.
With this in mind you may not be surprised to hear that it is sometimes easier to talk to strangers in this community, rather than your nearest and dearest.
When Billy was born in 2017, I never thought I would gain so many new communities from online forums, charitable organisations, sports teams and a whole new family at our local hospital.
It’s funny how one small difference within your life can be so impactful and can make your current life change course so dramatically.
These new communities allow individuals like myself to express their deepest worries in a safe environment that most wouldn’t understand.
I have found that the unexpected is a horrible place to be and sometimes there is a need to prepare yourself for such experiences.
I have found parents of children with the same conditions have a wealth of personal experience that is better than any medical book you could ever read.
The quote ‘same situation, different time’ comes to mind.
I think it’s human nature to want to help others, even when you’re having a rubbish time yourself and that’s why forums are a great place for personal experience lead information.
For example, “What do I need to put in my hospital bag?”, a pair of ear plugs, hand cream, a thermos cup and a pair of slippers to name a few.
This information is like gold dust for a newbie and allows them to have a fighting chance of surviving their early days of hospital life.
I often wonder what life would have been like as a parent of a sick child before the online era occurred.
I think in some ways the internet and social forums saved me from becoming isolated from the world and allowed me to become better educated around Billy’s conditions.
But, on the flip side with most great gains there is always an element of risk.
This is no different when you open yourself up to an online world of self-education or forums.
There is always a risk of self-diagnosis which can be terrifying and along with this you could experience triggers from other people’s experiences which could turn your life upside down.
This can happen in seconds when you open your phone or computer to look on social media, you never know what you may find.
Most days the posts are around advice regarding the child’s conditions, latest out breaks of child hood illnesses and how to get the best support package for them.
But, quite often you are hit with a tragic loss that stops you within your tracks.
Unintentionally your heart can miss a beat, the world around you can close down and it feels like you’re descending into a dark pit known as your subconscious.
I have often found myself crying and completely overwhelmed by the news of another child gaining their wings.
At times I thought I maybe weak or oversensitive by having these outward emotions that can affect my everyday life about people I don’t even know.
But is it?
You could argue that the stories are similar to your own experiences?
Billy seemed to be a big believer in ticking all the boxes and this was no exception when it comes to getting many of the secondary problems that arise with being a transplant or cancer patient.
You can start to worry uncontrollable about the ‘What if’s’, is it a matter of time before it happens to us.
The fear is great and as I move forward in Billy’s journey, I realise that there is no end or cure for his condition.
It can rear its ugly head at any time and send a settled family into complete chaos.
I’m sure we will have many more difficult days with Billy, holding his hand and caring for him when he can’t look after himself.
The feeling of “that could have been us”, looms over you and makes you reflect on how lucky we are to still have him in our lives.
So, on my final note I would like to say, be kind to yourself and remember that outside influences can be challenging at times.
These influences can affect how you are feeling and how you can cope on any given day.
Some days you can take on the world and others you feel like curling up under a duvet in a dark room.
This is your inner compass helping you to survive.
Remember you may not feel strong but you are xxx
Remember you may not feel strong but you are.
Love
The Rose-Tinted Mum
The Rose Tinted mum 