After her husband was diagnosed with Motor Neurone Disease, Lindsey Burrow had to share their journey with millions of people. In a new book, she opens up about the heartbreaking personal moments they faced.
On the Thursday night after Rob and Lindsey Burrow learned he was facing ‘the living death’ of Motor Neurone Disease with the likelihood of living just two more years, Lindsey found herself sitting alone in the spectator seats at a school swimming pool.
To all intents and purposes an ordinary mum on a routine day, but this day, normality was the survival mode that Lindsey would continue to endure for the months and years to come.
Reflecting on the morning of that day in a memoir she has written about her and Rob’s life together she writes, ‘Our lives will be blown apart today,’
They were given the heartbreaking diagnosis at The Nuffield Hospital in Leeds.
‘The doctor looks steadily at Rob, maintaining eye contact now and says the fateful words. He thinks Rob has MND.
Lindsey Burrow
‘Rob looks at him blankly because he has no idea of the severity of this sentence. It’s very different for me. As soon as I hear the words ‘motor neurone disease’, it’s as if a bomb has fallen from the sky and blown me wide apart. The bomb detonates deep inside me but rather than erupting in an explosion of fire and noise, it spreads a far more terrifying silence. I know instantly that our glorious life together is over.’
Many of us know something of what followed after that diagnosis. Few can fail to have been humbled by the high-profile and heroic fund-raising effort that came in the wake of Rob’s diagnosis and his refusal to give in to this awful disease.
Rob was loved as rugby league hero with Leeds Rhinos and lauded as sportsman by thousands but then we all came to know the rest of the beautiful Burrows family; little Jackson, now four, the youngest who turned one within days of his daddy’s diagnosis and golden-haired, wide-smiled Macy, 12, and Maya, eight, Rob’s much-loved daughters.
And Lindsey, now 42. Wife, mum, carer and confidant.
Gently spoken, Lindsey is a reluctant hero in all this, doing she says, what any partner and parent would do faced with her circumstances, then and now
We meet at the Burrow family home in Pontefract. It’s a handsome and imposing detached house, you might call it a ‘dream home’; one the couple had just moved to when that bomb went off in their lives.
Friends and family had noticed his changing speech patterns and this led to medical tests which were ultimately to determine the MND diagnosis after a battery of tests.
As an NHS physiotherapist, Lindsey was only too aware of the condition.
‘It was always in the back of my mind, and I know Rob had been googling it as well. We had had some positive test results, so we’d been quite reassured.
‘We went into the appointment quite optimistically – Rob was strong and healthy, really fit. But it was the most life-changing news to receive. I had an insight into the path ahead, but Rob just said he was glad it was him and not me or the children. That was Rob in a nutshell, he was just not thinking about himself.’
Lindsey says the first couple of weeks after diagnosis were especially hard; ‘We thought he only had a year or two to live and thoughts are ‘how to tell the children’. Simple things – I remember going to the bank and just could not remember my PIN number – I came home in floods of tears.’
The turning point was a meeting Rob and his pal Kevin Sinfield had with rugby union star Doddie Weir – at the time living with MND and campaigning for research.
‘Doddie just instilled so much hope into Rob that he came back and said ‘I am going to fight the prognosis, and we carry on’.
Rob had no regrets about his rugby days and whether the game contributed to his illness, says Lindsey.
‘’‘I wouldn’t change anything, I wouldn’t stop Jackson playing’’’ , he’d say.
The friendship, experiences and camaraderie of the game were cherished by Rob.
‘That was really comforting’, says Lindsey.
‘I think, what he achieved in those 41 years of life, people can only dream of achieving and that’s what we’ve got to focus on now, the legacy he leaves behind.
‘What kept him going was the children and he wanted to see their milestones. He wanted to see them grow up – that’s the hard part, the emotional part – MND has taken their dad.’
For Lindsey the hope is that Rob’s legacy is lasting.
‘I am proud of the way he opened the doors to show the world the brutal effects of MND. It takes a brave and courageous person to do that. I was quite shocked that Rob wanted to do that but, in the end, if he could help another person, he would do that.
‘It was never about the limelight but how MND affects not only the person but the whole family.’
Rob, Lindsey and the family often found themselves in the limelight however as Rob was recognised for his charity efforts. There were red carpet events, meetings with the Royal Family and star-studded ceremonies.
‘Of course, I would swap that in a heartbeat to have Rob back’, smiles Lindsey.
‘But I hope in years to come that the children will look back at nice memories and look at the difference Rob’s made and the hope he has given to people.
They do that by talking about him all the time or singing along to a Michael Jackson song that Rob loved.
Maya goes to sleep with a little heart that was given to her in hospital, Jackson has his ‘worry worm’. ‘a bit battered now’ and Macy a lock of Rob’s hair.
‘We did some hand-casting, some fingerprints with Rob – and of course the MND centre and Leeds Marathon – all these things keep his memory alive for them,’ says Lindsey.
In her new reality of life without Rob, Lindsey is keeping busy, ‘that’s just how I am’, she says.
She’s training for the London and Leeds marathons this month, fund-raising for MND and rugby charities. Yes, Rob’s legacy will be a lasting one.
Leedshospitalscharity.org.uk
In June last year Rob was admitted to Pinderfields Hospital in Wakefield. For weeks Lindsey had seen signs of his weakness and feared the worst.
A consultant confirms to Lindsey that Rob has reached the end.
Lindsey writes, ‘’Rob’ I say. ‘I know you’re really tired. His eyes fix on me in an unblinking stare. He hardly looks like Rob anymore. His trauma now seems unbearable and so I have to ask this question.
‘Rob’ I say as gently as I can, ‘have you had enough?’
There is silence in the room. And then clearly and unmistakably he looks to the left. (His way of communicating yes).
I want to cry but I need to make sure.
‘Rob,’ I say. ‘if you look to the left, you’re telling me you’ve had enough Is that what you really mean?
Rob looks to the left again.
I want him to feel he can let go now.’
Maya, Macy and Jackson spend their last hours with their dad gently painting Rob’s frail fingers bright red, yellow and green and he watches as they make prints for their memory books. The nurses give them knitted hearts and bears and they take photographs together. The palliative care consultant tells the children that Rob’s machine will be turned off and they understand what that means.
Lindsey writes, ‘The children are not frightened. Rob looks peaceful, his eyes closed and his breathing slow yet steady. I notice Rob’s chest is no longer moving and turn to the nurse.
‘Has he passed?’ ‘Yes’ she says.
‘I lean over and kiss Rob goodbye and then I turn to the children and open my arms. When they look at their dad, they all cry but they also do something beautiful. They open Rob’s hands. His fingers are still painted and then, telling him how much they love him, they take turns to pour the little knitted hearts from the night before on to his upturned palms. When they close his hands around their hearts it feels complete.
Lindsey is from a family Yorkshire people who have had to rally through the toughest of times.
When Lindsey was two, her parents would take her to ‘the cafe’ in Castleford. In reality, it was a soup kitchen operating during the miners’ strike of 1984.
Her dad was a blacksmith welder at Allerton Bywater colliery, working above ground. Mining was part of the family history.
Both of her granddads had suffered mining accidents.
Grandad Jimmy (her mum’s father), had a severe scar on his back. He was involved in a terrifying accident at Wheldrake Colliery in Castleford and buried beneath the body of a friend after a pit shaft collapsed. Three of the four men survived after being buried more than 12 hours.
‘For Nana Nancy, my mum, who was 12, and her sister Sue, the hours were full of torment’.
Jimmy suffered physical and mental torment afterwards.
Says Lindsey, ‘Having had Rob shackled by MND, I treasure life even more. I am given strength and hope by the remarkable positivity Rob always showed, even when he was buried inside his body, more harrowingly than Grandad Jimmy had been when trapped beneath his friend and a vast mountain of coal.’
We gaze at the sea of love for Rob. Twenty thousand people have turned out to line the streets. I remind the kids how their dad was admired, and even adored.
I am struck by all the different rugby shirts. Fans from Castleford, Featherstone, Wakefield and Leeds stand together as an ancient, bitter rivalry is cast aside in memory of Rob. No one would normally wear a Leeds shirt in Castleford but today there can be no enmity because of the love everyone felt for him.
The crowd is like an unending sea with wave after wave of people. Some place a flower on the hearse or simply touch the back of the car where the coffin is carried.
But Macy speaks for us all when softly she asks this question of Rob’s illness and death; ‘’Why did it have to be my dad’’
There is no answer to such a raw question and so I try to explain how much their dad did for so many people.
We see the coffin and the flowers, and it suddenly hits us with fresh force. I gather all three of my children around me and hold them close. Despite this devastation we will find a way. We will go on together. I feel this so clearly.
Even if we cry again about the loss of their cherished dad, and my beloved Rob, we won’t let him down. We will try and make sure that, if he could look down on Pontefract now, Rob would feel so proud of us. ‘
