My second sister, Libby, had always been such an inspiration to me, ten years her junior – she was one to look up to, to seek advice from and to adore. She had always welcomed my massages when she was tense, like the morning of her wedding day, when she woke up, a ball of nerves. Her expectations of life and of herself were always so high, that tension in her shoulders was inevitable. Following a full body massage, she put on the unique, golden wedding dress she had designed herself. She looked resplendent and the day was as perfect as she had dared to hope, “I want sunshine with some clouds – enough to make the shadows on the Dales atmospheric.” And on the drive to Fountains Abbey for the reception, that is exactly what she got!

And yet now I found myself pushing her in a wheelchair to the dark and sterile room of a hospice…the architect and creator of all things beautiful, the one who envisaged the perfection that nobody else would dream up, who designed spaces with wellbeing in mind…now in a place of bewilderment. In 2012 Libby had become ill. She was diagnosed with cancer and she fought it so courageously, through aggressive liver and bowel surgery, a hysterectomy and chemo, whilst trying to maintain her research and teaching role as Professor at Warwick University. In February 2013 we believed her to be cancer-free, but then a scan in October found the cancer to be back and to be everywhere.

I can’t really describe what those next months were like, as we saw the cancer spreading, causing more pain, and limiting the good things that Libby was able to do. She had begun a course of chemo to delay what was becoming inevitable and the effects of the chemo on Libby were far worse than the cancer itself. Her three children had already been so strong through the illness, so ‘together’. This gave Libby strength (alongside the plethora of research she had found), knowing that the children would be fine; she had done already the important groundwork of helping them know who they are, establishing their values and letting them know how proud she and Bart were of them.

And then came a bigger test that autumn. One day as Libby was taxiing the children in her beloved Fiat 500, she became snappy with the three of them. She was more irritable than normal. Tadhg, her 14-year-old son, said, “Mum, is this the cancer or the chemo?” She answered him, “It’s the chemo.” And he made an instant choice, “Then you must stop, Mum.“ He knew, and so did his sisters, that they would rather have less time with their mum but that time be quality. At their young age, she had already made them wise.

In August 2014 Libby needed a surgical procedure, to reduce the pain. The procedure had not just numbed the pain; it had paralysed her – she had lost her independence. She was already struggling to retain dignity with a colostomy bag. Now she was facing new decisions about the rest of her care; in those days she realised that the quality of her surroundings was more important than instant access to a medical team. And so, she chose to go home to live downstairs, in her tasteful home, that she had so stylishly restored to its former glory. She chose to be surrounded by all the beautiful things she had chosen so painstakingly. She chose to end her days surrounded by her family. She chose to live well to the end.

Those months saw our mum become her carer. 24/7 Mum was in their home, supporting Bart in looking after Libby and ensuring the children had clean clothes, got to school each morning and ate each evening. There was nothing Mum would not do for her; as she had cared for her every need as a baby, so she did once again for her ‘big girl’, now 47. The quiet service Mum undertook in those final months, displayed our mother in a new light and I don’t think any of us have viewed her in the same way since.

Most Saturdays, Steve and I would drive over to Leamington with the children; yes, to visit Libby (but she was no longer up to visitors for more than a few minutes), but mainly to give Mum some reprieve (like Lois’ Tuesday and Friday visits to cook dinner and spend time with the children and the weekends when Julia and Helen came down). It was a majestic autumn that year and I do hold happy memories of hours in the park together. Mum forgot the unspeakable anguish inside those walls and for a few moments held hands with her grandchildren, pushed them on a swing or laughed with them as they played, basking in the autumnal sun. And we had to ‘be’ in that moment. Together. Just there. The soul of a mother cannot bear the torment of impending and inevitable loss every moment of every day. It is too much. There have to be pockets of joy. There have to be.

As winter drew in and November came, we longed for the end, for the anguish to be, not over for us, but over for her. Gosh, why are we all such fighters? Sometimes I wish we’d just give in some of the time! But we are resilient, us Burtons, we don’t know how to not fight.

On the 12^th in the afternoon, Mum was in the lounge with Tadhg and Libby, asleep. Mum was stroking her cheek and talking to her. She got up to finish her coffee and Tadhg said, “I think I’ll do what you were doing, Grandma,” and began stroking his mum’s cheek. Two or three minutes later he looked up and said, very calmly, “Grandma, I think that’s it.” And she had, so quietly, departed this mortal coil. Tadhg and his Grandma held each other, beside her in a prayer, and there was only peace in that moment. A prayer of love and of peace.

And as the weeks of grief passed for Steve and I, a thought kept returning, “Are we making this count?” Is our life worthy of the years we are blessed to have left – together and with our children? Is this life worthy of her? Would she wish our lives fuller or happier? As I read and re-read her blog posts, and watched and re-watched her legacy lecture, I knew deep down that she wished for us…something more.

https://www.youtube.com/watch?v=SzyPsg0RoyU

https://libbysheehan.wordpress.com/