When you are young, all you want, is to be the same as your friends.
There’s a great need to belong, to be accepted, to fit in and to be liked.
But for some individuals being the same is difficult.
Which can create opportunities to mask and hide their true selves.
But for some this is impossible, due to the underlying differences being something they cannot remove or mask easily.
These differences can create moments of isolation and loneliness.
Which can manifest into an outward expression of discomfort, or a withdrawn internal fight, or some just except it.
These feelings can leave lasting mental scars that can last a life time.
But sometimes you can overcome these moments of ‘I’m the only one’, by connecting with people that are similar to yourself.
This connection can alleviate and bring comfort when times are hard.
Before Billy had started school, he had already expressed the feeling of being different.
Most of these were emphasised due to his peers looking and acting differently to him.
By the end of nursery, Billy had worked out that he was small in stature, his gross motor skills where under developed and his spoken speech was limited.
These obvious differences created people to believe Billy was a lot younger than he was.
At times this created difficulties, as people would treat and act differently around him.
Especially, when it came to playing with the other children at nursery and school.
The first memory I have of this was when Billy was in nursery.
Billy loved the role play corner.
He often liked dressing up and playing with the other children.
Most of the role plays at this time consisted of nuclear families.
In the casting of the roles, Billy was often given the role of the baby due to his size and lack of speech.
He often didn’t mind this role as it gave him the opportunity to play with others.
Which was something he had lacked in his previous life as a hospital child.
But on this day, the role play corner didn’t end well for Billy.
Billy was clearly upset and was refusing to say sorry to the other child.
After a lot of hugs and some investigational work.
Billy expressed through sign and his communication tablet that he was disgruntled.
He couldn’t understand why he was in trouble after the other girl, that was playing mummy, had continued to push him into a toy car seat even when he expressed she was hurting him.
So, he bit her.
Not Billy’s finest moment, but an explanation all the same.
On this day we all learnt a valuable lesson, one being the power of investigation, two to embrace other people’s communication styles and three ‘SORRY’ is a powerful word.
Another time was when Billy was in year R.
The stories are very similar and it all started within the role play area.
The roles where being cast and Billy’s friends wanted him to be the baby, as this was his normal role.
Billy wanted a change and said he wanted to be the father figure.
His friends dismissed his suggestion and continued to cast him as the baby.
Over the coming months, Billy continued to express his desire to move roles.
But he continued to play the baby, which internally made him sad.
To the point he eventually spoke out, a brave move from the child that didn’t want to be noticed.
This open declaration which made him so transparent, created an opportunity for a conversation.
The question being, ‘Is it ok to be different and does the way you look determine what you do?
The school decided to run with these questions and opened a safe space to educate the children.
Even that Billy wasn’t highlighted, this conversation opened thought processes within the children.
Which in turn, allowed the door to be opened for Billy’s new role.
As time moves on, it feels like the worries have become more complex for Billy.
In some ways he has become more aware of the world around him and the predicament he has been delt.
Which has opened his eyes to the reality that his life will continue to look very different to the majority of the people around him.
This is due to his complex medical needs and the post-transplant restrictions that have been imposed on him, which are there to help his organ stay happy and helps limit rejection.
One of these restrictions being, the annual Flu Vaccine.
For children like Billy, Live vaccines are a no no.
‘The theory is their immune system is weakened by their immunosuppressive drugs they take after transplant, which increases the risk of a serve or fatal infection from the live vaccine.’
So, every year Billy must endure an injection rather than the less invasive nasal spray.
And every year Billy likes to talk about the injustice within this act.
The act that he gets hurt when others don’t.
For us as parents we understand the importance of listening to the worry monsters and then working through these together.
We also realise the importance of honesty within this.
This reflects Billy’s personality traits of a child that likes to be in the know.
He likes predictability which in turn brings him comfort.
But also, he needs to know why we cannot always change the outcome.
I’m not saying this approach is easy, but it does stop repercussions in the future.
But sometimes it is also good to have a backup plan.
A go to that helps you guide these conversations.
This is especially helpful, when your true love has opened up the emotional box and it is pouring out everywhere.
For Billy, the main struggle we have found, is he feels like the only one within the moment.
Which is true to some degree.
Let me explain a little.
Within the Biliary Atresia and Transplant world, it is very common for the children to feel alone.
Mainly due to their community being dispersed.
Which can make them feel very detached and isolated from the people that are like them.
Which in turn can make it hard to find similar people in an organic way.
So, there is sometimes a need to create opportunities to meet others.
For us we found the opportunity through the Kings Transplant Games Team back in 2022.
For both Billy and us, it was mind blowing to be surrounded by so many similar people.
Which gave us a layer of belonging we needed.
This community became the backbone of our Transplant Liver family and has become a safety net or go to conversational piece when times are hard.
Anyway, back to the story …
As Billy ends his barrage of injustice, he stared at me, waiting for the response.
His little eyes where full of sadness mixed with frustration.
I said ‘Billy do you remember Charles, Mason, Mali, Tilly and the rest of the team?’
Billy smiled ‘of course I do’
I smiled back and said ‘You know they have had a transplant like you right?’
‘Yes’ Billy said with an intriguing look.
I continued ‘these children are like you Billy, they have had the injection because they can’t have the nasal spray either’
Billy responded ‘really?’
‘Yes, love’ I replied.
Billy smiled and snuggled in for hug.
This short effective conversation gave Billy peace that he wasn’t alone.
It instilled that there was someone out there that understands what it feels like to be him.
Which in turn allowed him to belong.
Remember you may not feel strong but you are
Love
The Rose-Tinted Mum
The Rose Tinted mum 