Christmas for Lene Pearce and her five-year-old daughter was, quite simply, magical. Yet there was a sharp poignancy to the scenes of excitement at their Nottingham home as an excited Lexi-Ann tore open her presents. For, heartbreakingly, it is likely to have been Lene’s last.
And although she is willing herself to survive for as long as possible, Lene has written her daughter a card for next Christmas — a message of comfort to her only child — just in case she does not make it.
‘Always know that I love you from the bottom of my heart and that I’ll be looking down over you,’ it reads. ‘Enjoy Christmas time with fun, laughter and family, and I will always be an angel alongside you. Forever in my heart and soul, love always Mum.’
At just 41, Lene is living on borrowed time. She has motor neurone disease (MND), a rare and incurable degenerative condition that affects the brain and nerves and is slowly robbing her of her ability to move and speak. Last September doctors told her she had about a year to live.
When Lene was told this would be her last Christmas, her first thoughts were for the little girl she’ll leave behind. Her inspiring solution? Poignant cards and letters to be opened for decades to come — in the ultimate legacy of love
Yet fierce maternal love is keeping her alive. ‘I wouldn’t be here if it wasn’t for Lexi,’ she says. ‘She gives me a reason to carry on.’
However, she is planning for her imminent death, for the years Lexi will spend without her, and has written birthday cards to take her daughter right up to the year 2053 — by which time she will have turned 40.
Too weak to hold a pen for any length of time, Lene spent hours dictating the messages to a carer, before laboriously signing a wobbly signature of ‘Mummy x’ for each one.
The messages in the cards are fond, tender and touching. Often funny and always affectionate, they chart a mother’s enduring love.
They anticipate her little girl’s progress through adolescence to adulthood — and their poignancy is sharpened because Lexi will be reading them long after her mum has gone.
Although Lene Pearce is willing herself to survive for as long as possible, Lene has written her daughter a card for next Christmas — a message of comfort to her only child — just in case she does not make it
For her daughter’s tenth birthday, Lene writes: ‘Enjoy your last year at primary school because next year the hard work begins! My love and thoughts are with you always. Hugs and kisses, Mummy.’
At 18, Lexi will receive a message — addressed like all the others to ‘my beautiful, gorgeous’ daughter — reminding her she is now allowed to have a drink.
‘And if you’re your mother’s daughter, you will. But if you’re your dad’s daughter, you won’t. But whichever it is, know I’m there with you to celebrate this special day.’
And when she opens her 21st birthday card, a photo of Lene at her daughter’s age will accompany her mum’s wish that Lexi seeks out adventures. ‘I hope you’re travelling the world,’ she writes.
On her wedding day, Lexi will open a parcel containing an eternity ring and a teddy bear — both wedding day gifts to Lene from her own mother, Ann-Marie, 67.
Lene is planning for her imminent death, for the years Lexi will spend without her
She has written birthday cards to take her daughter right up to the year 2053 — by which time she will have turned 40.
Then, at 40, in her final card Lene sends a hope that her daughter’s life will be happy and settled.
‘I can’t believe I’m sitting here writing your 40th birthday card,’ she tells her. ‘Have an extra special day and a glass of wine for me. I hope life has treated you well and still is. I hope you have everything you wanted — whatever that may be.’
Lene, a former nanny who later worked as an airport check-in agent, stopped her cards at 40 knowing there would be ‘a lot to look back on’ and hoping Lexi would by then be busy with her own children.
Today she and her daughter, a tornado of energy and animation, live in a specially adapted bungalow in Nottingham.
Lene’s strength lessens daily. She can no longer lift a cup, dress or feed herself, and her voice is slurred and faltering. But sparks of her old humour and zest for life remain.
Since her diagnosis last year she has crammed Lexi’s life with adventures — a trip to Australia in a campervan for three weeks in July was a highlight — and they marked her daughter’s fifth birthday in April with a visit to Disneyland, Paris.
These days Lene is confined to a wheelchair — she stands with difficulty and only for short periods — but just five years ago, when Lexi was born to her and husband, Ryan — from whom she is now separated — life could not have been better.
‘From day one, Lexi was the most beautiful, sparky, smiley little girl who lit up everyone around her with her infectiously positive personality. Life felt pretty much perfect,’ Lene says of the time when the family were living in Kent.
Just five years ago, when Lexi was born to Lene and husband, Ryan — from whom she is now separated — life could not have been better
But, less than 18 months later, although Lene felt healthy, a series of disquieting symptoms began.
‘I was going to the gym four times a week and swimming 50 lengths a day. I’d never been fitter,’ she recalls. ‘Then my knee started giving way, and I fell in the road while taking Lexi to playgroup. That fall prompted me to go to the doctor. I had a scan and they said I’d torn a cartilage and prescribed pain killers, but I continued to walk with a limp.
‘I went for blood tests and the nurse said: “Your gait doesn’t look right.” She got me an emergency appointment for the next day and they did some neurological tests and asked if there was multiple sclerosis (MS) in the family. There isn’t.’
Multiple sclerosis is a lifelong condition affecting the brain and spinal cord, causing problems with vision, movement and balance. Though MS can cause serious disability, unlike MND it is often treatable.
‘The nurse’s words jolted me,’ says Lene. ‘By then I’d begun to lose the use of my right arm. I struggled to put a plug in a socket.
‘Then I was fooling around with Lexi on the sofa and I fell off it. I hadn’t got the strength to get up. Next I had a series of falls at work. I loved my job as a check-in agent at Gatwick airport and it was a very worrying time. I’d smashed my face and damaged my leg and I was walking with a stick.
‘Another time I fell in front of a gate full of passengers. I felt blood on my face — I’d bitten my lip and had a black eye.
‘My best friend, Lisa, has MS, so I knew how tough that can be and I worried that I had it, too.’
Meanwhile, Ryan, 40, a diver with the Port of London Authority, struggled to cope with the disconcerting change in his wife, and could not bear to confront the fact that she could be grievously ill.
‘It was taking its toll on our relationship,’ Lene recalls. ‘I wanted to go back to Nottingham to be near my family and friends. Ryan loved his job and he didn’t want to leave it and come with me.
‘To my beautiful, gorgeous 17 year old… I hope those boys are treating you well! You’re not quite legal for everything yet!!!’
‘When I said I was going, he agreed that we should separate.’
In October 2015, Lene and Lexi moved to Nottingham, leaving Ryan behind. Lene got a job at East Midlands airport, but by February 2017 she recalls: ‘I kept falling. I fractured both my cheekbones and suffered a haematoma in my arm.’
By July she was too ill to work and two months later — after countless blood tests, a lumbar puncture and nerve conduction tests — she was called for a hospital consultation.
Although still clinging to the slender hope that she may have MS, Lene feared the worst — that, in fact, she had MND, a much rarer, terminal disease, for which there is no cure.
‘My mum is a retired Army nurse and had two friends who died of MND. She said she was afraid all the signs pointed to that.
‘She was crying when she told me, but wanted me to be prepared. I was petrified.
‘But I still felt I had a 5 per cent chance this 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, be there when she walked down the aisle; all those moments you can’t put a price on.
‘She knew her mummy wasn’t well, but neither of us knew what the future held.’
Finally, after years of worry and uncertainty, the doctors confirmed Lene’s worst fears.
‘Lisa was with me when I went to hospital last September. The consultant asked me what I thought it was. I told him MND, and he said: “Yes, all the signs point to that.” ’
Next, came the hardest question of all. ‘I asked: “How long have I got?” and he said: “Do you really want me to go into that today?” and I said I did, because I had a young daughter. Then he told me: “Most patients last a year from diagnosis, but I think you’ll be here a little bit longer.” I was heartbroken.’
She cries again at the memory. ‘I broke down. All I wanted to do was hug Lexi, but I didn’t want to go home and have to tell my mum,’ she sobs.
‘I know it will be hard this Christmas as I am not there to share it with you but always know I love you from the bottom of my heart and that I will be looking down over you’
‘And when I did, she just kept saying how sorry she was. She cried and cried and said if she could only take it from me and have it herself, she would.
‘It took the best part of two weeks for the news to properly sink in. All I could do was think about not seeing Lexi grow up. Then I rang Ryan. He was devastated.
‘He drove straight up to Nottingham to help me and Lexi deal with the diagnosis.’
But the hardest part — the almost impossible task — was framing the awful truth into words that Lexi might understand.
‘I hardly slept for nights on end. I cried in my room so Lexi didn’t see me in pieces. Eventually, I told her that I was very poorly and would be going to heaven soon.
‘She replied: “When I’m eight?” and I said it could be sooner, and she asked: “When I’m six?” No child her age can understand the finality of death, what it really means, until that massive hole has been left in their life.’
When I meet Lexi she is understandably more interested in rummaging through her dressing-up outfits than talking about Lene’s illness. If you could have one wish, what would it be? I ask. ‘That Mummy wasn’t poorly,’ she says.
And another? ‘That I had hair down to my bottom like Rapunzel,’ she says, pulling out a favourite doll from her toy box.
Do you get sad? I ask her. ‘I do, but I don’t like to talk about it,’ she replies briefly.
Grief has many different manifestations and Lexi is often angry. ‘It’s purely because I can’t do things other mums do,’ Lene explains. ‘Before we went to Disneyland, Lexi said: “You might not be able to come. You might be dead,” and that hurt me, of course.
‘She doesn’t say unkind things now, but when she’s angry she slams doors. She does lots of little helpful things for me, too, like putting my coat on, shutting doors, turning lights on and off and putting a blanket over me if I’m feeling cold. But I just want her to be a child.’
Carers attend throughout the day to help Lene wash, dress and eat, but this will soon be Ryan’s role. Though they have not been a couple for three years, he has taken a sabbatical from his job and is moving to Nottingham to be Lene’s carer: he will look after her in her final days and be with their daughter. ‘He has been a wonderful support to me and has never failed as a dad. I see him as a very close friend,’ says Lene.
‘When we took Lexi to Australia it was bittersweet because I knew I’d never go again. I saw my cousin Tracey, who lives there, and it was a heartbreaking goodbye because I knew it would be the last time I’d see her.
But Lexi had a wonderful time. She swam in a lagoon and loved sleeping in the roof of the van.
‘Ryan did pretty much everything for me. He lifted me into the campervan, washed me, dressed me and fed me. Nothing fazed him, so I know he’ll cope well as my carer. I asked him: “Will you come and look after me?” and he agreed. He hasn’t got anyone else in his life and he says he doesn’t think he ever will. But I hope he will.
‘All I’ve asked is that Lexi doesn’t call anyone else “Mum”. And he’s promised that would never happen. Because you only have one mum, don’t you?’
• Lene has also received care at Nottinghamshire Hospice https://www.nottshospice.org/