Two weeks ago I was sat with my family, who were visiting for Easter, watching TV. As usual, Boo’s sleep had been atrocious in the days before and I was struggling to keep awake. So I did my favourite alternative to matchsticks and caffeine: I went on social media on my phone to see if screen time would do that thing sleep specialists tell us it does and keep me awake.
It worked. I saw some devastatingly sad news: a notification from the husband of Stacie Lewis – Mama Lewis to many of us – to say that she had died after a long few years of living with leukaemia.
No words, of course, are adequate to convey the unimaginable sadness and downright unfairness of this terrible news. My first thoughts were for Stacie’s husband, Gareth, and their beautiful children, May and Ieaun. I then remembered fondly all the exchanges that Stacie and I had on social media and those all-too-few meetings in person. But what I couldn’t shake afterwards was an awful sense of all that Stacie would no longer be able to do with her family and friends, in her writing career – she was such a good writer – and in her activism. Stacie changed lives through her words and actions regarding disability. I couldn’t believe that she was gone; her death is a loss in so very many ways.
I met Stacie for the first time a few years ago in Westminster at the Parliamentary Inquiry into Disabled Childcare. By that point I had been corresponding with her for some months on Twitter, direct messaging and text. But I had known of Stacie for many months even before that. Immediately after Boo’s premature birth in 2012, I frantically started scouring the internet devouring every web resource and blog I could in order to get informed, to track possibilities for, and come to terms with, the new normal of a life we hadn’t expected even the day before Boo’s arrival. In the first few hours of his life I started googling “28 weeks” and “life expectancy”. Within days my search terms changed to “meningitis” and “sepsis”. And then came “severe brain damage”. That’s when I found Mama Lewis.
Like all the best writing, though, I felt that Stacie’s blog had found me. In her fiercely intelligent, infinitely compassionate and brutally honest posts about May and about being part of a family with a disabled child I saw a reality that I knew, deep down, ours would soon resemble. It was a prospect that frightened me, if I am honest. But Mama Lewis made me realise we could live it.
When I eventually met Stacie after so many months of exchanging tweets about our respective blog posts and life’s daily shenanigans, I was feeling pretty nervous. I wasn’t nervous about being in Westminster or of having to talk about the difficulties of accessing childcare and education for our kids. Telling the truth is quite an easy thing to do. But I was nervous about standing up with a group of women whom I had come to admire enormously, but whom I had never met outside the bloggersphere. I didn’t want to let the side down. We had important work to do.
I recognised Stacie immediately as she came up the stairs to the panelled room we were waiting in. She was wearing a gorgeous striped dress and a short, pixie haircut, a legacy of her most recent and apparently successful leukaemia treatment. She was fatigued from walking up so many stairs but looked well. Actually she looked more than well. She looked committed, petite but fierce and ready to do business. While others were introducing themselves to each other, I stood back, for the first time embarrassed by my online anonymity. It sounded so daft to greet people by saying “I’m Mrboosmum”. But when it came to my turn, that’s what I said to Stacie. “I need to see pictures of Boo,” she said. And so I showed her pictures on my phone.
In my day job – a day job, incidentally, I have been able to cling onto in part because of Stacie’s help at a critical moment – I am lucky enough to be surrounded by very intelligent people who are extremely good with words. But honestly, I will never again be with a smarter or more eloquent group of people than the women who gave evidence at the Inquiry. Stacie’s testimony was utterly compelling. Everyone – MPs, fellow parent-carers, advocates – listened in wrapt attention and tears in their eyes. These were not tears of pity – in my experience one of the least welcome emotional responses parents of disabled children can elicit – but of recognition of the injustices May and her family faced and the simple truth that Stacie conveyed so powerfully: access to education, good care, and an inclusive society should not be aspirations; they should be the reality.
Stacie pursued this conviction in every campaign she supported and often led, in every blog post she wrote and every article she wrote for the national press. And her words made a material difference in Parliament and in supermarkets that introduced accessible trolley seating, to give just two examples. She was a brilliant advocate not just for May but for all children like her, like Boo, and their families.
I will miss Stacie dreadfully. Her loss, of course, is and will forever be most profoundly felt by her family and her many, many close friends. I cannot imagine what they are going through.
Selfishly, I regret that our always fun meetings with a mutual friend after the Parliamentary Inquiry were too infrequent. I regret that I didn’t get to know her better than I had time to. I regret that she was too unwell to come to my 40th birthday last year when we thought it might just work out. I would have loved to see her dance, something we heard a lot about at her celebratory funeral last week. I regret that I cannot call on her wisdom in the future. And I deeply, deeply regret the loss of her presence and voice in the world in which Boo is growing up.
But I also know that those words are not lost. Many people have been sharing Mama Lewis posts in the pasts two weeks, as well as her articles for the Guardian and Baby Centre. I urge you to re-read them. I have been doing so and I find them as powerful and necessary today as I did on first and second readings.
Her writing still advocates. And there are many of us still who feel more urgently than ever after her death the necessity of continuing her advocacy, even if few of us can do it half as well as she did and would have continued to do had her life been longer.
Stacie Lewis’s blog, Mama Lewis, can be found here.