MUM Lena Pearce knows she hasn’t got long left as she suffers from motor neurone disease – a rare and incurable illness.
The nightmare diagnosis in September 2017 led to Lena, 42, from Nottinghamshire, creating her bucket list.
She arranged her own wake, planned trips with her girl Lexi, five, and even enjoyed nights out with a stripper thanks to her mates.
But, perhaps most importantly, she’s written cards for Lexi to open until she is 40.
She wants her girl to have her mum’s advice on all the things that matter – rubbish boys, driving tests and makeup – even if she isn’t physically there.
My beautiful daughter Lexi was born in April 2013. Shortly afterwards my then husband Ryan and I married and life was pretty much perfect.
The first sign I got of anything not being right was in September 2015 when I was crossing the road with Lexi and my legs just gave way beneath me.
I knew I had to see a doctor as I was actually the fittest I’ve ever been in my life. I was going to the gym four times a week and swimming 50 lengths a day. I assumed it must be some wear and tear from all my exercise.
I was sent for an MRI scan which showed torn cartilage in my right knee, and was told not much could be done, but was given high-strength painkillers.
The first time alarm bells started ringing was in March 2016 when I was trying to put a plug in a socket and couldn’t – all the strength in my right hand and arm was gone.
Shortly after that I was messing around with Lexi, fell off the sofa and couldn’t get up. I went back to my doctor who referred me back to hospital for MRI scans and blood tests.
I was told bluntly I had multiple sclerosis, which was horrific, but even then I felt something else was going on here.
By that point in a wheelchair, my illness prompted me to move from Kent, where we’d been living, to Nottingham, to be closer to my friends and family.
The stress of the illness led to Ryan and I separating. Life felt far from perfect on many fronts.
My mum had been a nurse and didn’t pull any punches when we spoke properly for the first time about my symptoms.
She said she’d lost two friends to motor neurone disease and thought I had it, too.
She was crying when she told me, saying how she prayed it wasn’t, but she wanted me to know and be prepared.
She explained it’s a rare and incurable degenerative condition that affects the brain and nerves, robbing you of your ability to move and speak.
I was petrified, hugging Lexi so hard at every single opportunity.
I suffered countless sleepless nights wondering what was going to happen.
My neurologist agreed something else might be going on, so I was referred for a spinal tap and nerve tests.
I felt then that I still had a small chance it might not be MND and I might live to see Lexi hit all her milestones – hug her when her first boyfriends turned out to be rubbish, watch her perform in plays and recitals, walk down the aisle…
She knew her mummy wasn’t well, but right then neither of us knew how unwell I was or what the future held.
On September 21 2017 I went in the Queens Medical Centre in Nottingham with my best friend Lisa to get the news.
When I saw the extra support nurse there, I had feeling this was going to bad news, but nothing actually prepares you for hearing the words you never want to hear.
The neurologist asked me if I’d googled my symptoms and what I thought this could be. I said I was worried it was MND, and he said yes, all the evidence points towards that.
All I can remember is breaking down, one hand held by Lisa and the other by the nurse.
Most people diagnosed with MND die within 12 to 18 months, and I should prepare myself for this, he said.
Ryan got the news that day and drove straight up to help me deal with things.
Over the next few weeks he brought me a takeaway and a glass of wine when I most needed it, and he was nothing short of amazing.
It took me the best part of two weeks for this news to properly sink in. All I could do was think about not seeing Lexi grow up.
Eventually I told her that mummy will have to go to heaven soon, but no child can understand death, what it really means until that massive hole has been left in their life.
But in the worst of times, you really find out who your friends are. I got countless messages from all my girlfriends in the coming weeks, who arranged a surprise visit to come and see me, despite my protests.
The four of us had all worked in Yates’ Wine Lodge 20 years previously and knew each other inside out.
They brought a couple of bottle of wine and we sat around my kitchen table, somehow managing to laugh about my predicament in a way that only best friends can.
Very soon they said I had to come up with the best ever bucket list, all the things I wanted to do or share with Lexi before I died.
On my iPhone we made a list – take Lexi to Hamilton Island in Australia, where I’d worked for one of the best years of my life, take her to Disneyland Paris; go and see my sister Clare in Delaware in the US, have my first ever stripper and take her to Lapland UK for Christmas, if I ever survived that long.
But as well as filling her with magical memories of her mum, I wanted to leave mementos and notes for her to have at key points in her future.
So, I’ve written out a birthday card for every one of her birthdays until her 40th, and I’ve also given her my sapphire and diamond eternity ring and the teddy bear my mum gave me on my wedding day to have on hers.
By focusing on lovely moments and her future I found I could somehow handle my own future better, that there was something to look forward to despite my impending early exit.
In April, for Lexi’s fifth birthday, we went to Disneyland Paris, and two months later we went to Australia. Writing all those cards was harder than I imagined because my hands don’t work anymore, so I’ve written them using my phone then amazing nurse at Nottinghamshire Hospice where I’m cared for has written them out for me, and I’ve signed each one ‘Mummy X’.
Thinking of her opening each one as when she’s 10, 12, 18, it breaks my heart, but I can’t let her forget me, the love burning inside me for her.
Ryan and I took Lexie to Lapland UK over Christmas and had a ‘pre-funeral’ party for the New Year with all my old friends and family.
We got drunk, laughed and danced in my memory, but with me there.
Of course, the longer I live the more I’ll add to my bucket list. Who knows, maybe I’ll make it to next Christmas, but I know the chances are tiny.
It’s been so hard trying to explain to Lexi that mummy might be gone soon.
She’s only five, and it’s impossible to know what she does and doesn’t understand.
One day after school she came home with a paper angel and proudly told me ‘This is you, mummy’. The tears rolling down my face, I then knew she understood.
But of course the reality of not having a mum in the coming years will hit her in waves, when all my cards and little presents will help keep her spirits up, reminding her that I’m looking down with love.
Lenea is a patient at Nottinghamshire Hospice, which provides end of life care and emotional support for people with a terminal diagnosis throughout Nottinghamshire. To find out more visit nottshospice.org or call 0115 910 1008