Lindsey Burrow: I know Rob just wanted us to be happy

“It’s now that it’s starting to hit me more than ever,” admits the NHS physiotherapist, mother of their three children, who was his carer for four-and-a-half years after his diagnosis.

“It’s the little things. A family friend passed away not so long ago and my first instinct was to message Rob and tell him what had happened. Then suddenly there’s the realisation that he isn’t there.

“Or I’ll finish work and message Rob to say I’m going to be a bit late home. Or you just want a cuddle or you’ve had a bad day and you just want that person to have a moan at or to give you some advice. That’s what I’m starting to miss.”

Christmas was particularly tough, she recalls, the first when he wasn’t there.

“I think the first of everything is always going to be the hardest – first birthdays, first Christmas, but the children, very much like Rob, don’t feel sorry for themselves. They don’t look for self-pity.”

When the Leeds Rhinos legend was diagnosed, he focused on fundraising for MND, raising more than £15 million for charity to help MND patients and fund research into the disease through events including the Leeds Marathon with his former team-mate Kevin Sinfield, and stayed positive for his family throughout his illness.

Lindsey, 41, juggled her day job as a physiotherapist, with round-the-clock care for her husband, who as the disease progressed could neither move nor talk, communicating through eye movement alone, while she was also raising her young family and helping to campaign for MND awareness.

Now, she is hoping to shine a light on the work that carers do, through her memoir, Take Care, which she says Rob convinced her to write and which charts not only her husband’s battle with the disease but also their love story – they were childhood sweethearts – how she and her family have coped with their loss and to bring to attention the work of unpaid carers in this country.

“Carers keep the country going and they are the backbone of society, and that really put a spark in my belly to raise awareness, obviously with Rob’s backing.

“The book is for anyone who has experienced hard times, be it loss or the emotional toll of caring for a loved one. I know first-hand that caring can be so difficult but also so powerful and rewarding.

“I was Rob’s primary care-giver for four-and-a-half years, since his diagnosis in December 2019 and I really wanted to open up about the rollercoaster of emotions, raising three children, trying to juggle being an NHS physiotherapist and trying to be a good mum and a good wife.

“I wanted to paint a really honest and open picture of the challenges of living with somebody who has a terminal illness, but also to celebrate Rob’s legacy of what he achieved and what we’ve achieved together.”

There are still some bad days, she admits.

“You do have the days when you just want to pull the duvet back over your head, but I think of Rob and he inspires me to be the best version of myself that I can be.”

“Running is a big part of my escapism,” she continues, and plans to take part in two fundraising marathons this year. “It gives me the headspace to go out and put on my iPod and listen to music or a podcast and I think that’s my way of dealing with it and managing it.

“And life is still so busy with the children (Macy, 13, Maya, nine and Jackson, six). They keep me going and give me a reason to smile. I know Rob wanted us to be happy ultimately and I’m determined to keep that promise to him.”

Writing about the children and his really close relationship with them as his strength waned was hard, she says.

“That’s the hard part, knowing that MND has robbed the children of a wonderful dad who idolised them.

“He was such a family man, from changing nappies when they were little to going to play groups with them. He wasn’t bothered that he was the only dad in the mums playgroup.

“Throughout Rob’s illness, not being able to see Rob kick a ball with Jackson or to read the children a bedtime story, that was the hard part.

“He never moaned about it. He never said, ‘Why me?’ There was never any self-pity. But deep down my heart was breaking that he wasn’t able to do those things that I knew he so desperately wanted to do.”

Lindsey’s grit and stoicism may come from her upbringing in a Yorkshire coal-mining family (her father and grandfathers were miners) in Castleford. Her father was among the thousands of miners who went on strike against the pit closures in 1984.

“We struggled to make ends meet and had to go to soup kitchens to get food,” she recalls. It was in Castleford that she met young Rob Burrow, the boy who was to become her husband.

Halfway through writing her book, Rob died on June 2, 2024.

“But actually I found real solace and I feel that it’s helped me through the grieving process by reflecting on the incredible legacy that Rob had and how positive he was that [in] the face of adversity he didn’t feel sorry for himself. There was no self-pity.”

Losing such a positive and resilient partner has changed the way Lindsey lives her life.

“It puts life into perspective. So, if the house is untidy or I’m late for something or haven’t done something, as long as you’re happy and healthy, nothing else really matters.”

It’s also emphasised the importance of family and friends, particularly in difficult times. She mentions the incredible support she and the family have received from her wider family, the rugby community and from Rob’s friendship with Sinfield.

The Prince of Wales, whom she met in January 2024 when he awarded Burrow and Sinfield their CBEs on a surprise visit to Headingley in Leeds, has written the foreword to the book, praising her for sharing her story of “compassion, perseverance and love”.

As for her future, she says she wants to continue her husband’s legacy, is looking forward to the opening of The Rob Burrow Centre for Motor Neurone Disease in Leeds in the summer and will continue to fundraise for Leeds Hospitals Charity.

She also wants to continue spreading the message about unpaid carers.

“Carers need to be recognised and rewarded for what they do. Unpaid carers are saving the country £162 billion, which is the equivalent of a second NHS. But we need to do more to recognise them.

“If I can be a voice to help them get the recognition and the support that they so truly deserve, then I would see myself as a campaigner for carers.”

Take Care: A Memoir of Love, Family And Never Giving Up by Lindsey Burroughs is published by Century, priced £22. Available now

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