Christmas for Lene Pearce and her five-year-old daughter was, fairly merely, magical. But there was a pointy poignancy to the scenes of pleasure at their Nottingham residence as an excited Lexi-Ann tore open her presents. For, heartbreakingly, it’s prone to have been Lene’s final.
And though she is keen herself to outlive for so long as attainable, Lene has written her daughter a card for subsequent Christmas — a message of consolation to her solely little one — simply in case she doesn’t make it.
‘All the time know that I really like you from the underside of my coronary heart and that I’ll be wanting down over you,’ it reads. ‘Get pleasure from Christmas time with enjoyable, laughter and household, and I’ll all the time be an angel alongside you. Eternally in my coronary heart and soul, love all the time Mum.’
At simply 41, Lene resides on borrowed time. She has motor neurone illness (MND), a uncommon and incurable degenerative situation that impacts the mind and nerves and is slowly robbing her of her capacity to maneuver and converse. Final September medical doctors informed her she had a couple of yr to reside.
When Lene was informed this may be her final Christmas, her first ideas had been for the little woman she’ll depart behind. Her inspiring resolution? Poignant playing cards and letters to be opened for many years to come back — within the final legacy of affection
But fierce maternal love is holding her alive. ‘I wouldn’t be right here if it wasn’t for Lexi,’ she says. ‘She offers me a purpose to hold on.’
Nevertheless, she is planning for her imminent loss of life, for the years Lexi will spend with out her, and has written birthday playing cards to take her daughter proper as much as the yr 2053 — by which era she may have turned 40.
Too weak to carry a pen for any size of time, Lene spent hours dictating the messages to a carer, earlier than laboriously signing a wobbly signature of ‘Mummy x’ for each.
The messages within the playing cards are fond, tender and touching. Usually humorous and all the time affectionate, they chart a mom’s enduring love.
They anticipate her little woman’s progress by way of adolescence to maturity — and their poignancy is sharpened as a result of Lexi will likely be studying them lengthy after her mum has gone.
Though Lene Pearce is keen herself to outlive for so long as attainable, Lene has written her daughter a card for subsequent Christmas — a message of consolation to her solely little one — simply in case she doesn’t make it
For her daughter’s tenth birthday, Lene writes: ‘Get pleasure from your final yr at main faculty as a result of subsequent yr the laborious work begins! My love and ideas are with you all the time. Hugs and kisses, Mummy.’
At 18, Lexi will obtain a message — addressed like all of the others to ‘my lovely, beautiful’ daughter — reminding her she is now allowed to have a drink.
‘And when you’re your mom’s daughter, you’ll. However when you’re your dad’s daughter, you gained’t. However whichever it’s, know I’m there with you to have fun this special occasion.’
And when she opens her 21st birthday card, a photograph of Lene at her daughter’s age will accompany her mum’s want that Lexi seeks out adventures. ‘I hope you’re travelling the world,’ she writes.
On her wedding ceremony day, Lexi will open a parcel containing an eternity ring and a teddy bear — each wedding ceremony day presents to Lene from her personal mom, Ann-Marie, 67.
Lene is planning for her imminent loss of life, for the years Lexi will spend with out her
She has written birthday playing cards to take her daughter proper as much as the yr 2053 — by which era she may have turned 40.
Then, at 40, in her remaining card Lene sends a hope that her daughter’s life will likely be blissful and settled.
‘I can’t consider I’m sitting right here writing your 40th birthday card,’ she tells her. ‘Have an additional special occasion and a glass of wine for me. I hope life has handled you effectively and nonetheless is. I hope you could have all the things you wished — no matter that could be.’
Lene, a former nanny who later labored as an airport check-in agent, stopped her playing cards at 40 understanding there could be ‘so much to look again on’ and hoping Lexi would by then be busy together with her personal youngsters.
Right now she and her daughter, a twister of power and animation, reside in a specifically tailored bungalow in Nottingham.
Lene’s power lessens each day. She will not carry a cup, costume or feed herself, and her voice is slurred and faltering. However sparks of her outdated humour and zest for all times stay.
Since her analysis final yr she has crammed Lexi’s life with adventures — a visit to Australia in a campervan for 3 weeks in July was a spotlight — and so they marked her daughter’s fifth birthday in April with a go to to Disneyland, Paris.
Today Lene is confined to a wheelchair — she stands with issue and just for quick intervals — however simply 5 years in the past, when Lexi was born to her and husband, Ryan — from whom she is now separated — life couldn’t have been higher.
‘From day one, Lexi was probably the most lovely, sparky, smiley little woman who lit up everybody round her together with her infectiously optimistic persona. Life felt just about excellent,’ Lene says of the time when the household had been residing in Kent.
Simply 5 years in the past, when Lexi was born to Lene and husband, Ryan — from whom she is now separated — life couldn’t have been higher
However, lower than 18 months later, though Lene felt wholesome, a sequence of disquieting signs started.
‘I used to be going to the health club 4 occasions every week and swimming 50 lengths a day. I’d by no means been fitter,’ she recollects. ‘Then my knee began giving means, and I fell within the street whereas taking Lexi to playgroup. That fall prompted me to go to the physician. I had a scan and so they mentioned I’d torn a cartilage and prescribed ache killers, however I continued to stroll with a limp.
‘I went for blood assessments and the nurse mentioned: “Your gait doesn’t look proper.” She acquired me an emergency appointment for the following day and so they did some neurological assessments and requested if there was a number of sclerosis (MS) within the household. There isn’t.’
A number of sclerosis is a lifelong situation affecting the mind and spinal twine, inflicting issues with imaginative and prescient, motion and steadiness. Although MS could cause critical incapacity, not like MND it’s typically treatable.
‘The nurse’s phrases jolted me,’ says Lene. ‘By then I’d begun to lose the usage of my proper arm. I struggled to place a plug in a socket.
‘Then I used to be playing around with Lexi on the couch and I fell off it. I hadn’t acquired the power to rise up. Subsequent I had a sequence of falls at work. I liked my job as a check-in agent at Gatwick airport and it was a really worrying time. I’d smashed my face and broken my leg and I used to be strolling with a stick.
‘One other time I fell in entrance of a gate filled with passengers. I felt blood on my face — I’d bitten my lip and had a black eye.
‘My finest good friend, Lisa, has MS, so I knew how robust that may be and I fearful that I had it, too.’
In the meantime, Ryan, 40, a diver with the Port of London Authority, struggled to deal with the disconcerting change in his spouse, and couldn’t bear to confront the truth that she may very well be grievously sick.
‘It was taking its toll on our relationship,’ Lene recollects. ‘I wished to return to Nottingham to be close to my household and mates. Ryan liked his job and he didn’t wish to depart it and include me.
‘To my lovely, beautiful 17 yr outdated… I hope these boys are treating you effectively! You are not fairly authorized for all the things but!!!’
‘Once I mentioned I used to be going, he agreed that we must always separate.’
In October 2015, Lene and Lexi moved to Nottingham, leaving Ryan behind. Lene acquired a job at East Midlands airport, however by February 2017 she recollects: ‘I saved falling. I fractured each my cheekbones and suffered a haematoma in my arm.’
By July she was too sick to work and two months later — after numerous blood assessments, a lumbar puncture and nerve conduction assessments — she was referred to as for a hospital session.
Though nonetheless clinging to the slender hope that she might have MS, Lene feared the worst — that, in reality, she had MND, a a lot rarer, terminal illness, for which there isn’t a remedy.
‘My mum is a retired Military nurse and had two mates who died of MND. She mentioned she was afraid all of the indicators pointed to that.
‘She was crying when she informed me, however wished me to be ready. I used to be petrified.
‘However I nonetheless felt I had a 5 per cent probability this may not be MND and I would reside to see Lexi hit all her milestones — hug her when her first boyfriends turned out to be garbage, watch her carry out in performs and recitals, be there when she walked down the aisle; all these moments you’ll be able to’t put a value on.
‘She knew her mummy wasn’t effectively, however neither of us knew what the longer term held.’
Lastly, after years of fear and uncertainty, the medical doctors confirmed Lene’s worst fears.
‘Lisa was with me once I went to hospital final September. The advisor requested me what I believed it was. I informed him MND, and he mentioned: “Sure, all of the indicators level to that.” ’
Subsequent, got here the toughest query of all. ‘I requested: “How lengthy have I acquired?” and he mentioned: “Do you really need me to enter that at present?” and I mentioned I did, as a result of I had a younger daughter. Then he informed me: “Most sufferers final a yr from analysis, however I feel you’ll be right here slightly bit longer.” I used to be heartbroken.’
She cries once more on the reminiscence. ‘I broke down. All I wished to do was hug Lexi, however I didn’t wish to go residence and have to inform my mum,’ she sobs.
‘I do know will probably be laborious this Christmas as I’m not there to share it with you however all the time know I really like you from the underside of my coronary heart and that I will likely be wanting down over you’
‘And once I did, she simply saved saying how sorry she was. She cried and cried and mentioned if she might solely take it from me and have it herself, she would.
‘It took the perfect a part of two weeks for the information to correctly sink in. All I might do was take into consideration not seeing Lexi develop up. Then I rang Ryan. He was devastated.
‘He drove straight as much as Nottingham to assist me and Lexi cope with the analysis.’
However the hardest half — the just about unattainable activity — was framing the terrible fact into phrases that Lexi would possibly perceive.
‘I hardly slept for nights on finish. I cried in my room so Lexi didn’t see me in items. Ultimately, I informed her that I used to be very poorly and could be going to heaven quickly.
‘She replied: “Once I’m eight?” and I mentioned it may very well be sooner, and she or he requested: “Once I’m six?” No little one her age can perceive the finality of loss of life, what it actually means, till that large gap has been left of their life.’
Once I meet Lexi she is understandably extra excited about rummaging by way of her dressing-up outfits than speaking about Lene’s sickness. Should you might have one want, what wouldn’t it be? I ask. ‘That Mummy wasn’t poorly,’ she says.
And one other? ‘That I had hair all the way down to my backside like Rapunzel,’ she says, pulling out a favorite doll from her toy field.
Do you get unhappy? I ask her. ‘I do, however I don’t like to speak about it,’ she replies briefly.
Grief has many alternative manifestations and Lexi is usually offended. ‘It’s purely as a result of I can’t do issues different mums do,’ Lene explains. ‘Earlier than we went to Disneyland, Lexi mentioned: “You may not be capable of come. You could be useless,” and that harm me, after all.
‘She doesn’t say unkind issues now, however when she’s offended she slams doorways. She does a lot of little useful issues for me, too, like placing my coat on, shutting doorways, turning lights on and off and placing a blanket over me if I’m feeling chilly. However I simply need her to be a baby.’
Carers attend all through the day to assist Lene wash, costume and eat, however this may quickly be Ryan’s position. Although they haven’t been a pair for 3 years, he has taken a sabbatical from his job and is transferring to Nottingham to be Lene’s carer: he’ll take care of her in her remaining days and be with their daughter. ‘He has been a beautiful assist to me and has by no means failed as a dad. I see him as a really shut good friend,’ says Lene.
‘Once we took Lexi to Australia it was bittersweet as a result of I knew I’d by no means go once more. I noticed my cousin Tracey, who lives there, and it was a heartbreaking goodbye as a result of I knew it could be the final time I’d see her.
However Lexi had a beautiful time. She swam in a lagoon and liked sleeping within the roof of the van.
‘Ryan did just about all the things for me. He lifted me into the campervan, washed me, dressed me and fed me. Nothing fazed him, so I do know he’ll cope effectively as my carer. I requested him: “Will you come and take care of me?” and he agreed. He hasn’t acquired anybody else in his life and he says he doesn’t suppose he ever will. However I hope he’ll.
‘All I’ve requested is that Lexi doesn’t name anybody else “Mum”. And he’s promised that might by no means occur. Since you solely have one mum, don’t you?’
• Lene has additionally obtained care at Nottinghamshire Hospice https://www.nottshospice.org/