Jessica Moxham: Don’t feel sorry for us just because we’re different

When Jessica Moxham’s first child was born with cerebral palsy she felt terrified and on the ‘fringe of mainstream family life’. Eleven years and two more children later, she shares the lessons she’s learnt about parenting, sibling love and why we need to value everyone.

I’m in the second day of labour when I am told my baby Ben is in distress and needs to be born immediately. His heart rate is low, they say. I feel a sharp pain and he is immediately cut from me. There is silence apart from low, urgent conversation between midwives and then doctors. Where there should be the sound of a baby crying there is nothing.

Jessica Moxham and family
Ben (centre) with his parents, sister Molly and brother Max. Image: Kate Borrill

Before I get the chance to see him, he is taken away to intensive care in a flurry of medics. I am told he had been born unresponsive but has been resuscitated. He now needs specialist help. My husband James holds my hand as a doctor explains, ‘At some point during your labour your baby didn’t get enough oxygen. He is very sick.’

Ben is sedated and covered in sensors and wires. We can’t hold him. All we can do is stroke the exposed areas of his skin and listen to the warning tones of monitors nearby while he remains silent and still. I stare at his face, imprinting his features on my memory. I am shocked to find myself here, grateful to hold my baby’s hand but overwhelmed by the surroundings and his apparent delicacy.

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We ended up staying in hospital for five weeks. After the first week, it became more likely Ben was going to live. His breathing support was reduced and some of the wires were removed. I was so thankful – that he was alive, that I could cuddle him and that I didn’t have to monitor every breath in case the next one didn’t come.

A few weeks later, we were taken into a small room with a neurologist, Dr M. He was gentle but factual, delivering bad news as kindly as he could. ‘It isn’t certain, but it is likely he will have cerebral palsy.’ It was a relief that my baby had survived but I was devastated that he was injured.

Our only hope of being allowed to leave hospital was to be able to give Ben milk through his feeding tube. There is nothing nice to be said about pushing a small, stiff but flexible tube into your son’s nose, past the resistance of the back of his throat and down his oesophagus. Keeping Ben fed required a certain toughness. It is in the same territory as forcing children to take horrible medicine, but it feels far more harsh and relentless. Mothering, it would seem, isn’t about making your child happy all the time. Sometimes it’s about making your child cry because there is no alternative and hoping that – surrounded by all the kissing, singing, cuddling and smiling – he will forgive you.

When Ben turned six months old it became clear that he wasn’t going to be able to drink or eat enough to keep himself alive. He underwent an operation to put in a gastrostomy, where a hole is made in the abdomen so a long-term feeding device can be fitted between skin and stomach. Rather than milk flowing via his nose, it could go straight into his stomach. We were shown how to feed Ben with this new tube and it was so wonderfully simple. We could just unclamp the tube, flush through a little water and then give him milk. Now aged 11, Ben’s good health is all down to his feeding tube. We blend food to a smooth purée and feed it to him through it.

During his first year, I could never work out how to talk about Ben’s disability in social situations. I tried to find a balance between the medical stuff and the baby things. In spite of the complexity of feeding, moving, sleeping, he was still just a baby. His milk teeth grew. He had chubby cheeks and curly hair; he was the most delicious baby I had ever seen. When strangers talked to Ben in his buggy he looked fairly typical and I could choose how much to tell them, at least until they tried to give him something and I had to explain that he couldn’t hold the toy they were offering.

We helped him to play with toys, putting a rattle into his hand which he shook until it dropped out. He could just about knock over a tower of bricks that we built. A friend gave us a musical book of ‘The Wheels on the Bus’; at the end of the story a series of teddies say goodbye to the bus and Ben gave a little chuckle each time we read it. I loved the predictability of it – that every day, if I liked, I could get him to make that little chuckle by reading that book. Even on bad days the book could at least raise a smile. And we began to be able to laugh ourselves.

After almost a year of keeping going, permanently tightly wound, wondering what might go wrong, when he might next wake, whether we had cleaned the syringes or if he was about to vomit, there was more light. A relaxing of our fraught bodies and minds made all of us feel a little less bewildered.

Ben Moxham
Ben aged three

We began to work on helping Ben to communicate in the absence of him being able to point or speak. A speech and language therapist suggested we teach him to look instead of point, which is called ‘eye pointing’, so I bought a menagerie of model animals and we practised him looking to show me where a particular animal was. I’d hold two toys up in front of him and ask, ‘Where is the cow?’ Ben learned to look at the cow and then back at me, to show me he was choosing the cow.

One day Ben and I walked down to the shop to buy James a bar of chocolate. When we returned home, I put it on the shelf opposite Ben’s chair. ‘You can show Daddy where his present is when he gets home,’ I said to Ben. When James returned, I told him Ben had a present for him.‘Do you, Ben? Did you buy me a present?’ James asked and Ben stared furiously at the place on the bookshelf where the bar of chocolate was propped up. James followed his gaze and picked it up. ‘Thank you, Ben, that’s my favourite,’ he said as he kissed Ben and Ben grinned. Those moments were precious.

The thought of getting pregnant again was unthinkable to me for a long time after Ben’s birth. I felt panicky just at the thought of it. But then the fear dissipated – I wanted Ben to be one of my babies, not my only one.

When Ben turned two, I discovered I was expecting another baby, and Max was born on my birthday. I was charmed by both my boys and loved spending time with them, but I was taken aback by the ease with which Max moved and controlled his body, even at that early stage. After two years of worrying about whether we were doing enough physiotherapy with Ben, it was a relief to realise that no amount of therapeutic input would have given him a body like Max’s.

Molly was born in 2015. I hoped that having a third child was a gesture of optimism. I felt like Ben’s life would only be enhanced by us building his gang, because in our family we’re not living in the shadow of Ben’s disability, we are open to the light and possibilities.

Having Max and Molly forced us to do things that most families do, which we had been avoiding. Like going to playgrounds, where we discovered Ben loves roundabouts. Before, it had felt like we were on the fringes of mainstream family life, but as ours grew we were able to see more similarities between Ben and other kids. Part of me wanted to rail against the idea that our experience with Ben wasn’t normal, because who defines normal? But part of me embraced our family now being less unusual.

Of course, the children would wind each other up: Ben used to get annoyed when Max was too noisy and Molly was climbing on him. But when Max went to a play scheme at Ben’s school he asked if he could be in the same group as Ben and when I left them in the classroom he was holding Ben’s hand. When I’m away, James tells me, ‘Molly misses you, but she says she is OK because she has her lovely brother Ben with her.’

Ben and brother Max
Ben, six, with bother Max, four, 2016.

Ben now attends a special needs school where he settled in quickly and is happy. Since he can’t talk, he uses an Eye Gaze computer and has a communication button which goes back and forth to school with prerecorded messages. When his sister was born, he used it to tell my parents, ‘This is my new sister. Her name is Molly.’ Ben is nonverbal, but that doesn’t mean he can’t communicate. He makes noises that are not words: there are different kinds of sounds for happy, sad, interested, annoyed. Even without the noises, I could tell you whether Ben is in pain, bored, excited or frustrated just from the way he moves his body.

When Ben was small, we had been fearful of him not walking, but now I see his wheelchair as essential. He is happy in it, and it opens up possibilities, like ice skating. Ice is an environment where, unlike the rest of us, Ben doesn’t have to change his footwear or risk falling over. We ice skate regularly in winter and have discovered that Ben likes to go as fast as possible and pretend to crash into people or barriers.

But I do notice people making assumptions about Ben: assuming he can’t do things, or won’t understand. When I first meet people and tell them I have a disabled son they often apologise or pity me. ‘Don’t be sorry,’ I say. ‘He’s great.’

I see our family within a society that consistently undervalues disabled people and sees them as individuals who need to be helped or improved. Ben has day-to-day problems which we want to fix, or minimise, to improve his quality of life, but I now see that he isn’t someone we are trying to fix, even if we could. We need to mitigate the inconveniences of his impairments, not least because he has 150 separate appointments a year with different professionals or clinics (therapists, consultants, doctors, nurses, a dietician, a social worker, etc).

I didn’t ask to have a family like mine. I had never given any thought to there being families like the one I found myself in. Having Ben made me different from most of the people around me and for a while I thought that was unlucky, but it isn’t. Being different is valuable. It may be complicated, but it isn’t inferior. I am a member of an invisible club – parents quietly learning from their disabled children and trying to change the world in ways big and small.

I am content, not despite Ben’s impairments, but with them. I’m not being heroic, I am just trying to help him stay healthy and do things he enjoys. To improve at skills which will help him get the best out of his days. To make sure he gets the opportunities and support he needs to have fun. To love and be loved.

This is an edited extract from Jessica’s book The Cracks That Let the Light In (Endeavour, £14.99*).

*To order a copy for £13.19 until 21 March go to mailshop.co.uk/books or call 0203 3308 9193. Free UK delivery on order over £20.