Yesterday, I felt triumphant, smug and a little childish with the sentence
‘I told you so’
Over the years Clinic appointments have become a part time hobby for Billy and I.
With Billy having so many different teams, we have become regular social butterflies within the hospital.
To be honest, Billy has always been a celebrity, he is widely known by the hospital staff due to his colourful past as an inpatient and his infectious personality.
He’s quite often spotted by our hospital family and stopped for a quick chat on our commutes.
Or, a big smile and an enthusiastic wave as they rush around the hospital, with a quick ‘Hello,’ a glance at me, ‘he looks well’ uttered.
The sense of connection, the sense of belonging, the sense of love is real and needed to survive this surreal world.
A true ally, a true vision and one goal.
I have found if you worry too much about the pending future it stops you from living the here and now.
So, worrying about the ‘what ifs’ of clinics can over shadow the greater gain you can get from them.
I treat it like going for coffee with old friends, and believe it or not some of these medics have seen us more than our chosen friends over the last 6 years.
Like good friends, you know their areas of interest and you understand the areas you need to share.
Also, like most social occasions it has a predictable structure that is followed, but it has hints of personal touches which showcases the personality of the medic in charge.
These personalities and little quirks that they put on display, make clinic interesting to the client.
Billy and I always laugh and discuss the clinics on the way home.
Billy’s favourite subject is, if Mummy made the medics feel uncomfortable again.
At Billy’s tender age, his vision and understanding of the world is very black and white.
He has no concept of the grey areas and what is needed to rectify these conflicting points of view.
But I do try and reassure him that we are all friends, working together towards a bigger goal, which is a better outcome for him.
Over the years I have learnt that my preferred position is ‘on the front foot,’ prepared, informed, happy to question and formulate a plan that takes into consideration multiple theories.
Personally, I LOVE figuring out puzzles and sometimes figuring out Billy is the same.
He’s like a Rubik’s cube, and at times a broken one at that.
So, by knowing this I choose to research areas that may help Billy’s life journey.
I feel I’m best placed to help by understanding the process, as I am the keeper of his life story.
This helps by ruling in and out possible lines of investigations, treatments or new concerns.
But I have learnt at times even when you are prepared that surprises still sneak up on you.
Like my good old dad would have said ‘That’s thrown a spanner in the works’.
This is no surprise considering my background isn’t medical.
When I say surprise, sometimes these are amazing and sometimes these are devastating.
Either way, I have found the medics I admire the most are the ones that just say it how it is.
Delivering these messages are difficult at times and I appreciate the stress it can create for all involved, so you may as well make a positive out of a negative by putting the information to good use.
Like, discussing the treatment programmes or weening meds or trialling new things like eating orally.
Sometimes this information is lost due to the message becoming the focus of the clinic.
The word that comes to mind is momentum, you need this to control and lead the situation.
Sometimes stopping and allowing the emotion to set in means you can dwell on the situation, rather than running on the adrenaline to solve the problem.
Clinics can be at a premium at times and I have learnt by experience that sometimes the wait to the next is a hard one to swallow.
Like they say ‘seize the day’, your loved ones may thank you for it.
For some, this method may not be your cup of tea, but whatever method suits you, I would encourage you to lead if necessary, to get the security blanket you need.
I must admit, since having Billy I have become a crier.
This outward emotion can throw people, but what they don’t know is I cry at everything.
A good film, a school performance, a happy story or even when I see the first seedlings pop their heads through the soil in the spring.
So, I have learnt it is a release for me and its not always negative but can come up in most situations.
It feels like it is a need, so I can continue and after a few minutes it’s normally a forgotten memory.
Remember that medics are human, and want to help and sometimes they need the ok to continue.
So, I said earlier that I had a moment of ‘I told you so,’ so I suppose I better let you in on the secrete.
Since Billy was around 2-years-old, some medics have made the hypothesis that Billy was globally delayed or he had a neurological condition like cerebral palsy.
As other medics felt that Billy had an unfortunate start to his life which was created by lying flat for nearly a year with 3 years of prolonged illness would be enough to hinder hitting his milestones.
It was also suggested by one brave medic that Billys delays was created by his parents under stimulating him from birth.
All these notions came about due to Billy being significantly behind in his gross motor skills and spoken language.
Then on top of this Billy had a severe lung complaint, he was stunted in growth and he had a liver condition that they felt may have been wrongly diagnosed.
And to rub salt into the wound, he also wasn’t potty trained until he was 5 years old due to his unpredictable bowels, later at the age of 5 Billy was diagnosed with GORDs which explained a lot.
Global Developmental Delay (GDD) is usually defined by the child being diagnosed with having a lower intellectual functioning than what is perceived as ‘normal’ and this is usually accompanied by delays within their developmental milestones.
I struggled with this notion of GDD deeply as I knew Billy was bright and communicated amazingly through Makaton and intuitive sign with people he knew well.
My hypothesis was he didn’t start living until he was 3 years old and before then his body was completely malfunctioning due to illness, so he had 3 years of catching up to do as well as trying to keep up with current millstones.
Quite a big challenge for anyone, let alone a child that is still recovering from 2 major illnesses.
Also, in Billy’s short life he had undertaken a high number of developmental assessments and had always achieved and excelled in all areas except his gross motor and spoken word.
So, over the last couple of years there has been a high number of referrals, appointments, assessments, scans, and procedures undertaken to bolster some medics hypothesis.
But, I’m glad to say we have reached the end of this chapter of investigations and it is believed that Billy has no underlining GDD or a neurological condition.
I would say this has been a struggle for me, but in some ways I’m glad that the medics care enough to fight for him and investigate when they feel it is necessary.
Their actions to try and help him, haven’t gone unnoticed and I’m forever grateful for their endless care.
Remember you may not feel strong but you are.
Love
The Rose-Tinted Mum
The Rose Tinted mum 