SNJ note: Catriona wrote in March about the devastating passing of her beloved daughter, Amy, who had Rett syndrome, at age 17. Today she has written about the aftermath of losing a child whose care structures everything about your day and night.
The loss begins to hit at about 3.30pm on weekdays. That’s the time I would normally have been glancing at the clock, organising my work for her arrival home on the school bus at 4pm, making sure that I could pick it all up again later. But now I have all the time in the world.
It also hits in the morning, when we no longer have to have all her medicines and blended breakfast ready in a row of syringes by 7.30am, teeth brushed by 7.45am, dressed and positioned in her wheelchair by 8.10am, ready for the school bus at 8.30am. Now, we can sleep in if we want. Have breakfast without tube-feeding her alongside. There is so much time.
And it hits hard in the evening, as I tidy up and think about going to bed, and automatically head down the hall to her room to check she’s settled, switch on her feeding pump for the night and give her one last kiss. But her room is dark and empty.
The random pain of a thousand rememberings
It hits at other random times too. When we make tons of food for dinner, because we’ll blend the leftovers for her. When I over-buy milk and cereal and bananas and frozen blueberries because that’s what she had for breakfast every day. When I realise there’s a whole pile of new clothes in her wardrobe that I bought her for spring and she never wore and will never wear. When I look at her shampoo and scarves and pillowcases and they are totally hers and no one else’s. When it occurs to me that I haven’t seen or heard CBeebies for 31 days and find myself missing JoJo and GranGran.
And those are just the personal things. There’s all the impersonal, institutional stuff too. The emails from the local authority with subject-lines like “Final [direct payments] monitoring return” and “End of direct payments”. The date that Motability will send someone to collect the wheelchair-accessible car. The three separate dates the “leading provider of healthcare solutions” tell us they will be coming to collect her bed, bath seat and other equipment before they finally manage to do it.
The never-ending (s)admin
There’s so much (s)admin. The coroner’s office. (Will they need to do a postmortem? They decide they won’t.) The medical examiner. The registrar who asks how many death certificates I want. I have no idea. How many should I want? The hospital bereavement service. Do I want a debrief with the emergency department team who treated her the day her heart stopped and couldn’t be restarted? Yes, I think I do. They say I’m brave. They say I advocated so hard for her. I nod and thank them and wonder what the alternative even is. I tell myself not to think about those hours of questions from the police that routinely follow the unexpected death of a child.
And all the people to tell. Family, of course, and friends. Her beloved carer, whose heart I broke when I went to her door. Her school. The half-term holiday club she was due to attend two days after she died. The children’s hospice, where she was booked for respite care the day after that. Our employers and colleagues—we might need some time off. The team of community therapists who’d been part of our lives since she was a baby, after I first said, “She’s not okay”. The bus driver who took her to school every day. The wheelchair service, which had finally given us an appointment after six months of waiting and chasing. The specialist colleges we’d been in the process of applying to. The Department for Work and Pensions.
The comfort of planning a farewell to do Amy proud
And then, of course, the funeral. All the decisions to make about coffins and flowers and music and all the rest. But that’s where I found some calm and comfort, and even a little joy. I firmly believe funerals can be brilliant, and I was determined that Amy’s should be. Thinking about how to remember and honour her gave me a purpose.
Having found a wonderful funeral director, we decided to hold the funeral at an art gallery she enjoyed visiting near our home in south London, and to invite everyone who knew her and us. Her coffin of willow, covered in spring flowers and blossom, sat beneath Rembrandt’s ‘Girl at a window’. The sun shone. And people came: friends, family and colleagues from near and far, past and present. Staff, pupils and parents from both the special schools she’d attended. Therapists who had supported and sometimes annoyed her. Her wonderful community paediatrician, who had been there throughout Amy’s life, even as she got promoted to ever more senior roles, as often happened with people who worked with Amy and learned from her.
It felt weird and wrong to brief a third party about who Amy was and what she liked, so we did the funeral service ourselves – my husband, Eduardo, added ‘celebrant’ to his long list of talents. He and I, and our older daughter Abby, all spoke about the girl we knew and loved. We played Madness and Glenn Miller (for her) and Nanci Griffith and The Beautiful South (for me). We read The House at Pooh Corner (tiddely-pom), and The Owl and the Pussycat, and Maya Angelou’s Caged Bird. Then we went to the pub and stayed there for a long time.
Amy was way more than a collection of complex needs
Amy was 17 years old and had Rett syndrome and congenital heart disease. Her needs were numerous and complex, but she wasn’t expected to die when she did. But although her death was sudden, it wasn’t a mystery. Pneumonia is one of the most common causes of death in young people with neurodisability. This has been studied extensively and all health professionals should be well aware of it. The mundanity of her becoming another statistic for LeDeR feels outrageously at odds with the fierce and funny person she was.
Because Amy was, of course, so much more than a bundle of complex needs. She was a girl who had strong feelings about what (and who) she liked, and what (and who) she found tedious. She loved music, especially the piano, and greatly enjoyed the rudest swear words. She was disdainful of people who tried too hard to make her interested in things or who talked to her in a baby voice.
She was unable to talk, but she expressed herself perfectly when she laughed at song lyrics, gave us her special ‘wtf’ look when she had to get up on cold dark mornings, and beamed at her TikTok favourites, especially the nice young man who made sandwiches. No one ever found out why that was so appealing to her.
Her life was hard in so many ways because of the havoc Rett syndrome caused in her body and brain, but there was literally nothing better than seeing her smile. And she smiled at many things. Her sister being told off, for example. Someone getting punched in a film. Nude artwork—she loved that. Anyone with anything on their head. Arriving at the Evelina London Children’s Hospital—I think she liked the attention. Being admired and told that her clothes were nice. Realising that she was going to holiday club, which was her happiest place in the world and which our local authority spent years (unsuccessfully) trying to remove from her EHC plan.
Bad loss, good loss
And now, we are left with so many complicated feelings of love and loss, freedom and despair. Perhaps this is inevitable, in the circumstances. When your child dies, one of your feelings shouldn’t be relief that you no longer have to deal with your local authority any more than the average person who rolls their eyes at missed bin collections. But it wouldn’t be accurate to leave this out. While we have lost Amy, we’ve also lost the constant, all-consuming fear about her future, something that was becoming more acute with every week that passed, bringing us closer to the point at which school would finish and she would move on to…what?
Up until the day she died, when I thought about the year ahead, my head was full of college applications and paperwork, how we could assemble the necessary evidence that she should continue in education, how we would approach the inevitable SEND Tribunal appeal. My biggest fear was that we would fail her—that the education and social care systems would fail her. We feared she would end up isolated at home for too much of her adult life, without the therapies to help postpone further physical deterioration, the communication support to help her express herself, the social interaction that perked her up daily and made her life enjoyable and meaningful. I couldn’t bear the idea that the best years of her life were behind her, as she moved on from a brilliant school to a future full of uncertainty because our local authority wouldn’t engage in any forward planning.
The battle continues for thousands of other families
Those battles are now over for my family, but families all over the country continue to face them. We love our children immeasurably, but we are let down way too often by the public services that should work with us. Instead, they treat us with defensiveness at best, hostility at worst. We routinely see news headlines that say our children are ‘bankrupting’ local authorities. We are told that the modest financial support that keeps families of disabled people afloat is too much and will be cut. We are denied any kind of assurance that our children will get the help and support they need. We depend on local authorities, who act surprised that disabled children turn into disabled adults.
The death of a child is a loss beyond words. No one should have to talk about their child in the past tense. But talking about my daughter feels like the most important thing I can do. She mattered because she was here and she was exceptional. And behind every public policy problem is an uncountable number of human stories like ours. There is much talk about the ‘SEND crisis’, framed in a way that suggests the existence of our children is the crisis. But this is wrong. The real crisis is when our shared humanity is lost.
Read Catriona’s tribute about Amy
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When her younger daughter was diagnosed with Rett Syndrome in 2009 shortly before her second birthday, Catriona found herself dealing in practice with things she’d previously thought she understood in principle.
She juggles her work as policy manager for a national charity with caring and advocating for her daughter. She's passionate about improving the lives of disabled children and their families, and making the systems that should support them work more transparently and equitably.
Catriona writes for Special Needs Jungle in a personal capacity, and all views expressed are her own.
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