For many the start of Advent is the first indication of Christmas.
This 4-week season represents love, hope, joy, thanks giving, and community.
For many this slow build up to the Christmas followed by New Year, allows for personal reflection.
In some ways this slow approach allows the mundane acts of life to be blown away, which in turn reveals the most precious elements of all.
For some there is a need to reevaluate and change to emphasize these precious elements.
As for others they continue to build and grow.
But, like most happy occasions there is always a flip side for some.
Were happiness has been tainted by bad fortune.
As I sit in front of my old faithful typing this message, I feel the shadow slowly immersing me.
The feeling of dread of what may occur, which is already drifting in and out of my thoughts.
As the days draw closer, the anticipation grows.
The thoughts loom, “will there be enough time or will it be too late?”
All questions grown on anxieties of times gone by.
Which makes the 11th hour of Christmas Eve more poignant.
As we wait, we hope it will be kind.
Wondering if this fear will ever go away?
Over the last 7 years of Billy’s life the run up to Christmas has been a challenge.
Even on a good year there have been scares, little wobbles that could turn into an earthquake.
These wobbles are like ticking time bombs.
Never knowing what may occur or where Christmas may be spent.
Timing is everything.
Early and you may be in and out or a late admission may create an alternative Christmas.
Over the years we have experienced a wide variety, 5-hours home release, discharged on Christmas Eve and admitted on Boxing Day.
Each one having its own unique story, that are often told to Billy at this time of year.
The one I remember the most was a routine MRPC scan.
MRCP is a type of MRI scan that you have in an MRI scanner.
I think this story sticks in my mind due to it being a routine scan rather than an emergency.
It should have been straight forward.
A couple of weeks before Christmas, I received a call from one of Billy’s doctors.
Explaining that they had just been offered a cancellation for Billy on the 23rd.
We discussed the need for sedation due to Billy’s age, he was 2 years old at the time.
This conversation led to Billy’s difficult history with being sedated, the pending holidays, but the reason why we needed the images.
With fingers crossed tightly, we agreed it needed to be done.
As predicted, Billy’s little body was fragile.
The anaesthetist team had difficulties with Billy desaturating in theatre and post operatively.
The team worked hard to stabilise him but he continued to have a decreased amount of oxygen within his blood.
This led to Billys heart beating faster to between 140 and 150, which made him Tachycardic.
Tachycardic is when the heart beat excessed 100 beats a minute which puts extreme stress on the body.
After a move from the day ward to the general ward it was a night of observations and IV fluids for Billy.
As Billy slept, I watched his tiny body fight as I drifted in and out of sleep.
As the night moved towards sunrise, a little laughter emerged from inside the cot, then a smiling face appeared.
Searching for a familiar face to engage with.
In an instance the night of worries evaporated and was replaced with instant happiness.
After final checks and a joyful send off from our hospital family, we made it home in time for Christmas Eve night celebrations.
As we move towards Billy’s 8th Christmas, his old rival or friend has reappeared,
Deranged Liver Numbers or Abnormal Liver Function Tests (LFT).
Or wonky bloods to the untrained mind.
As talks move towards possible liver biopsy to check for liver rejection.
We are once again reminded that there is no end to Billy’s condition.
Just endless monitoring and treatment.
As these words become more frequent within conversations, I sometimes think, is it better the devil you know or would it be easier to be clueless?
Today, I’m ok with the familiarity as the beast has been slayed before.
So, for now, 2 weekly bloods and reviews are needed.
Which sometimes end with more questions than answers and undoubtably with further bloods.
As I watch Billy endure this regime, I realise from the outside he looks no different.
Which is hard to comprehend and illogical to most.
His presentation and enthusiasm for life are present, so we continue and try to ignore the ‘What if’s’ within our lives.
Not easy at times, but needed for Billy.
So, over the last couple of weeks, we have been making the most of the Christmas celebrations.
With community tree light ups, Christmas parties, the annual Christmas Card run to the hospital and other festive fun.
And, I mustn’t forget the school Christmas Nativity.
Billy was a dancer and to my surprise he was center stage.
With a little help from his class teacher, who was at the back of the hall demonstrating, he managed to put on a sterling performance with his class mates.
As always, I cried happy grateful tears and thanked the universe for saving him.
Who would have thought he would be standing there today.
My little miracle.
This life style isn’t for the faint hearted, but has to be accepted to survive.
As I mull over my survival mechanisms, I realise I need to be prepared in the run up to Christmas.
Presents brought and wrapped, food in the freezer and cupboards, click and collect ordered complete, meds ordered and where possible seek opportunities on a whim.
Just in case, life sends us a wobble and plans must change.
Adapting is the key.
As I step into the final desent towards Christmas, I realise more than ever that I have no control over the fears I hold.
But I do have control over my actions.
So, for now, I will continue to care for Billy, make time for the people I love, offer thanks to the people that have helped me and ejoy the festive period as a family.
Whatever it may bring.
Merry Christmas everyone.
Remember you may not feel strong but you are
Love
The Rose-Tinted Mum
The Rose Tinted mum 