Christmas Day 2018
The house was quiet but not for long. Within minutes of waking, two excited children came thundering into our bedroom with stockings filled with treasures, and desperate to see whether Father Christmas had also left any surprises downstairs.
Tate and Nell skidded across the lounge carpet, eyes wide, searching for further clues. I was always one to leave such visuals as a muddy footprint or two, and snowy footprints on the front door mat so the children’s minds could carry off into images of the big man in red arriving in the silence of their dreams, using the magic key left for him to enter the house.
A half-eaten carrot lay beside the plate left out the eve before, an empty glass that was once filled to the brim with milk, and a scattering of chocolate chip cookie crumbs.
“He has been!” one of them shouted.
Wrapping paper exploded across the room. Boxes were opened with little regard for what they contained, and there were some big objects this year. Every new toy was the favourite toy… until the next one appeared.
It was exactly as Christmas morning should be.
Or so we thought.
Somewhere amongst the excitement, we noticed something. Tate wasn’t using his right arm as naturally as his left. Not dramatically. Not enough to spoil Christmas. Just… enough.
When he reached for pieces of a new car track that he was building with one of our friends, he favoured his left hand. When he picked things up with his right, his fingers seemed clumsy, almost as though they weren’t quite doing what he expected them to do.
It didn’t hurt him. If we asked him to use his right hand, he could.
But something felt different.
We caught each other’s eye more than once that morning. Neither of us said much.
Sometimes, as parents, you don’t need to.
You simply notice, and you store it away.
The next morning
The next morning nothing had changed. If anything, it was more obvious.
One call to NHS 111 confirmed what we were already thinking.
“Take him to A&E.”
So we packed a few things, bundled the children into the car and drove to Worthing Hospital.
Looking back, it’s strange how ordinary that journey felt. Stopping at traffic lights, taking our turn at roundabouts and keeping chat light with the children. Christmas decorations hanging from people’s houses. Families walking with children wobbling on new bikes and scooters.
The world carried on exactly as it always had.
We had absolutely no idea that our own world was quietly heading towards the biggest collision it would ever experience.
The signs before
When people ask if there were signs beforehand, the honest answer is… Yes.
But only when viewed through the gift of hindsight.
For around six weeks before Christmas we’d been back and forth to the GP. It started with sickness. Then high temperatures. Then came Slapped Cheek Syndrome.
After that, we noticed the right side of Tate’s mouth drooping slightly. We were told that viruses sometimes inflame facial nerves and Bell’s palsy can follow.
It sounded reasonable.
Doctors see these things every day. Parents want to believe doctors.
So we did.
A few days before Christmas Tate complained of headaches. Not normal little headaches. The sort that made us stop what we were doing and really look at him.
Then came sickness during the night.
Back to the GP.
Then an out-of-hours appointment.
Each time we left with another explanation. Each explanation sounded plausible.
Yet every time we drove home, Karen and I looked at one another and said almost the same thing.
“Something doesn’t quite feel right.”
I even said one day, “Do you think there’s something wrong with his brain?” but quickly the hugeness of this possibility was archived.
We’d both spent our careers working with children with additional needs. As managers, overseeing large teams of people, observation wasn’t something we switched on at work. It had become part of who we were.
Tiny changes.
Behaviour.
Expression.
Movement.
You notice them without even trying.
Still…
We trusted the professionals.
Just. Such a small word.
A&E felt strangely calm. A doctor examined Tate before quietly disappearing to speak to a consultant. He returned with a reassuring smile.
“We’d just like to do a CT scan, just to rule a few things out.”
Just.
Such a small word.
Within a couple of hours Tate had been scanned. Then we were moved to a ward.
Again, we thought very little of it. A&E was busy. People were waiting everywhere. It made sense to move us and lessen the pressure in the waiting room.
Or so we believed.
The four of us settled into a children’s playroom to wait.
The toys had clearly lived full lives. Cars missing wheels, jigsaws with half the pieces gone, plastic kitchens leaning slightly to one side on three legs, dolls missing limbs or eyes.
It looked as though every toy had fought its own little battle before ending up there.
Yet children didn’t seem to notice.
They never do.
Tate and Nell played happily together while Karen and I chatted quietly, trying to convince ourselves that we’d probably be home before long.
Time slowed into that strange hospital rhythm.
Waiting.
Watching.
Wondering.
Then…
I happened to turn around.
Everything around me disappeared. The chatter, the children, the playroom. All of it blurred into the background.
A group of medical staff were walking directly towards us.
Not running.
Not panicking.
Walking in a rhythmic, methodical pace in time with each other.
Exactly like those scenes you watch in hospital.
Just like on the telly.
There. That’s the room.
Their faces gave nothing away.
One nurse smiled gently. Another knelt beside the children.
Someone quietly said, “We’re just going to look after Tate and Nell while Mum and Dar come with us.”
Dar Dar is the name that my children call me, or Mama Dar.
My stomach dropped before a single explanation had been given.
Sometimes your body hears bad news before your ears do.
We followed them into a small consultation room. I’ve forgotten almost everything about that room.
Except where it is.
Years later, every time I walked past it in Worthing Hospital, I knew.
There.
That’s the room.
Funny how trauma leaves little pins in a map that only you can see, and how at times they get pushed into the board a little harder.
The consultant sat opposite us. She spoke gently.
They had found a large mass on Tate’s brain.
I don’t remember hearing the next few sentences. Only fragments. Words floating around the room without ever quite landing and processing.
Then she asked, “Would you like to see the scan?”
We both said yes.
Perhaps because neither of us actually believed what we’d just been told.
The image appeared.
Our beautiful little boy’s brain.
And sitting inside it…
A tumour.
Almost perfectly round.
About the size of a tennis ball, they said.
It reminded me of a satsuma. Even now, I don’t know why that’s the comparison my brain chose.
Perhaps because it was Christmas.
Perhaps because that’s how memories work.
Until suddenly… we can’t.
Then they left us alone.
Silence.
Then tears from next to me, Karen.
She cried in a way I’d only heard once before… the day her mum died.
A sense of fear took over me. My nervous system was thrown into a level of… unknown.
I had absolutely no idea how to make this better.
Known for my humour to help clamber out of any dire situation, this was Level Unknown.
I suddenly needed to be in four places at once with all of my strength. Be with Karen, run and squeeze Tate tightly, protect Nell, and for me to find someone to tell us it was all a mistake.
As parents, we spend our lives believing we can make things safe.
We fit stair gates, hold little hands crossing roads, nurse grazed knees and banged elbows, check temperatures through the night.
We fix things.
Until suddenly…
We can’t.
That feeling is impossible to describe. It’s as though the floor beneath your entire life simply disappears and you’re paddling around for something to push against and pedal your way out and onto a new floor.
A different story had begun
Then someone knocked on the door.
We had to go back.
Back into the playroom.
Back to our children.
We wiped our faces.
Took a breath.
Forced smiles that neither of us felt.
Because Tate and Nell were still just children. They didn’t know that a scan had divided their lives into before and after.
But we did.
In the space of one Boxing Day afternoon, our family of four crossed an invisible line.
The life we’d known that morning no longer existed.
A different story had begun.
One we never imagined we would have to tell.