with Jessica Moxham
Today we're offering a free copy of a new book written by Jessica Moxham, a parent carer and architect who lives in South London with her husband and three children, in the house she redesigned to accommodate her son's access needs. The Cracks That Let the Light In is Jessica's book about what she has learned from being a mother to her son, Ben, who has cerebral palsy, over the last eleven years.
Jessica has written about her book for us and has offered a copy of The Cracks That Let the Light In to SNJ to give away to one lucky reader. Be sure to add your name to the form at the end if you want to be in with a chance to win it!
The Cracks That Let the Light In
I knew almost nothing about disability before Ben was born, so the shock of looking after him as a fragile baby was profound and the learning curve from there to now has been steep. The Cracks That Let the Light In is an account of how we got from barely surviving to thriving.
Early Days
The book starts with Ben’s early days when he was born very unwell and I needed to be his nurse as much as his mother. As my husband and I navigated being new parents with added medical challenges, we learnt how to care for him and were rewarded with him laughing. Ben’s early years were as much about my frustration in dealing with healthcare professionals as his delight in being read books.
As I got used to the implications of Ben’s disability, I realised how different my experience was to the mothers I saw around me but I also got annoyed at people who felt sorry for us. I avoided going to baby groups so I didn’t have to answer questions about Ben or see looks of pity when people noticed his feeding tube. At home looking after Ben felt normal and began to get easier.
As Ben got older, we got a little more sleep (though not much!) and found a nursery for him. We discovered how we could entertain him and started to help him communicate with us by looking. When my husband James returned from work one night, Ben was able to eye point to where we had put some chocolate as a present and they were both delighted.
Our second son, Max, was born when Ben was two and watching him feed and develop was extraordinary. My feelings about Ben’s disability changed as I accepted how his body worked and worried less about whether I was doing enough therapy with him. A few years later we had a third child and Ben became just one child in a busy, loud family. People often assume the relationships between my children are one way – that Ben is a grateful recipient of Max and Molly’s love – but actually they are both comforted by holding onto Ben’s wheelchair if they are worried, and want to share jokes and stories with him. Of course they also get annoyed with Ben not letting them watch the TV programmes they want, and Ben complains when Max is too noisy and when Molly won’t stop kissing him, as is the way with any siblings.
Ben now loves books and ice skating. He laughs easily and hates dogs. His cerebral palsy means he needs support to sit, move and communicate. We feed him through a tube and he needs constant support but has strong opinions about what programmes we watches, which music he listens to and whether he wants to be kissed by his sister.
Raising a Disabled Child
I want everyone to know that there are aspects of our lives that are difficult, but that is only sometimes because of Ben’s impairments. More often it’s because of the way places or people don’t help us in the way they could, or because of ignorance about disability, or because of bureaucracy and logistics. It’s only a problem that Ben uses a wheelchair when the place we want to visit is inaccessible. Otherwise, he’s perfectly happy and his wheelchair opens up possibilities like being pushed straight onto ice rinks or up skateboard ramps.
Disability, and having a disabled child, is often presented in a binary way – that it’s either disastrous and sad, or it’s a triumph over adversity. In my experience it’s mostly somewhere inbetween with highs and lows that are more subtle and hard to explain or answers that are more nuanced. When people ask whether Ben can eat the answer isn’t yes or no, because he cannot eat orally but we do feed him food through his feeding tube. We can’t answer the question ‘Can he talk?’ in a quick way because Ben doesn’t speak but he can look to answer yes or no to a question, can read words, and tell us exactly which book he wants to read. Very little is black and white.
Over the last decade I have shifted my view from seeing my job as minimising Ben’s disability, to accepting his impairments and fighting for what he needs and what disabled people deserve. I am one of many parents managing busy lives (with hundreds of appointments!) whilst trying to do my bit to make the world better. We are an invisible club of parents quietly learning from their children and then trying to change the world in ways big and small.
In many ways our family life is as chaotic and noisy as any other, and in other ways it is completely different. I want to represent a kind of mothering that isn’t often seen in the media, but is actually not unusual. I know lots of families are like ours. For a while I thought having a disabled child was bad luck, but it isn’t. Being Ben’s mother isn’t what I expected in some ways, and is exactly what I anticipated in others. For me, having a disabled child isn’t bad or sad, just different and often brilliant.
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Jessica Moxham writes a blog at www.son-stories.com and can be found on Instagram and Twitter at @jessmoxham, and on Facebook at Son Stories Blog.
The Cracks That Let the Light In – What I Learned From My Disabled Son by Jessica Moxham, published by Octopus Books. Available from Bookshop.org, Amazon and all other bookshops.
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Previously Renata has been at the forefront of successfully changing government policy so interventions are needs-led and no longer diagnosis-led, and creating the world’s first specialist nurse for undiagnosed children at Great Ormond Street Hospital.
She also helped establish and grow the first online support community for families of undiagnosed children and spearheaded the very first undiagnosed children’s awareness day, including producing information videos that were shown in parliament.
She is a regular speaker on TV and at events, is an RSA Fellow and the mother of three children with disabilities, two of whom have complex needs and one of whom also has complex medical needs.
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