Christmas every day
The decorations stay up year-round at our house for a very special reason
My little sister Ruby danced about my room, excited. ‘It’s Christmas!’ she sang in my ear. From my bed, I checked the time – it was 6am. ‘One more hour,’ I groaned.
Not a chance!
Ruby loved Christmas and wanted to get going on the events of the big day. It was 2004. Ruby was 7 years old, I was 8, and our little sister, Sapphire, now 14, was 2. Ruby and I were so close. We were typical sisters, squabbling one minute and playing happily the next. But this year had been a little different. I’d turned into an overprotective big sister, too. In May, Ruby had began having seizures, and was diagnosed with epilepsy. Seeing my baby sister going blue, her body convulsing, was so scary. ‘It’s happening again,’ Ruby would say as she ran in from playing outside. After a while, she could sense a seizure coming, and Mum and I would make sure she was safe. But it terrified me. ‘Why Ruby?’ I’d sob. I was so scared one day she wouldn’t wake up from one. Despite the diagnosis, we had a great Christmas that year.
It was always Ruby’s favourite time of year.
She was first on with the silly festive jumper, singing Christmas hits.
But, when New Year rolled round, Ruby started having up to 15 seizures a day. That really took its toll. ‘I’m so tired,’ she’d say. Doctors said one seizure used the same amount of energy as running a marathon.
Sometimes, of course, it happened at school.
‘Look, I’m Ruby!’ bullies would shout, shaking about, mocking one of her seizures. So cruel.
Despite everything, Ruby led a pretty normal life until she was 15.
But, in 2014 Mum and I noticed that Ruby seemed tired, was moving more slowly and had constant headaches. She was checked out. ‘We think she has a form of mitochondrial DNA depletion syndrome,’ said doctors.
Having this syndrome means that sufferers have less energy going to their organs and muscles.
But the doctors admitted they couldn’t be sure. So they tried giving Ruby more medication.
But her seizures only seemed to get worse.
In 2015, Ruby had further brain scans, muscle biopsies and more lumbar-puncture tests to try and determine what was wrong with her. Nobody knew. Finally in September last year, we got more information about her diagnosis.
‘Ruby has a rare progressive brain disease. It’s so rare, we don’t have a name for it,’ a doctor said. ‘She might only have two to five years to live.’
Ruby didn’t understand, but I can’t describe how heartbroken we were. Last November, through the Make-a-wish Foundation charity, I asked if she could meet her hero – the wrestler Chris Jericho from WWE.
‘Oh God, it’s really you!’ Ruby gasped.
It was one of the best days of her life.
After that, Ruby went downhill very quickly.
By Christmas, she was going in and out of hospital. That really stung. She should’ve been at home with us, wearing her daft jumpers and singing Mariah Carey at the top of her voice.
Instead, in January, Ruby had to go into Intensive Care because she couldn’t stop having seizures.
She also needed an operation so she could be fed through her stomach.
One of Ruby’s few pleasures
Seeing my baby sister convulsing and going blue was so scary
was eating, and she really loved her chocolate.
To take that joy away from her was painful.
I desperately wanted to cheer her up.
So, when Mum went to take down our Christmas lights a few days after Ruby’s op…
‘Let’s keep them up,’ I said. ‘For Ruby.’
She’d missed out on so many of the festivities. And she loved it so much.
As well as the lights that twinkled outside our home, the tree stayed up, decked out in its tinsel and baubles, waiting for Ruby to come home. And, when she did… ‘Wow!’ she said, coming through the door in March and finding Christmas was still well and truly alive.
It was so wonderful to watch her giggle along to Home Alone, her favourite Christmas film.
In April this year, I gave up my job as a hairdresser to look after Ruby, now 19, full-time.
She’s now lost her hearing and can barely walk.
She has bad days when she’ll be having seizures all the time.
On a good day, I’ll get her into my car and we’ll go out for an adventure.
As for our Christmas decorations, we’ve left them up.
Ruby loves them so much, I don’t see any reason to take them down.
The lights have kept on shining, all year round, just like my beautiful sister.
And they’re still there now, ready for Ruby to enjoy the real Christmas.
I’m determined every single one she has from now on will be a blast.
Though Ruby is constantly positive, the thought of losing my sister breaks my heart.
She can’t talk much now, but if she sees me looking sad, she’ll cross her wrists like Wonder Woman.
That’s our signal, meaning we’ve got to ‘stay strong’.
Ruby really is the strongest person I know.
She’s so brave and has been through so much.
She reminds me that every day is to be celebrated.