‘LOVE & LAUGHTER: WHAT WE’VE LEARNED FROM OUR DISABLED SON’
Jessica Moxham shares her inspiring story
My eldest son, Ben, is 11 years old. He loves stories, the author Michael Rosen and going as fast as possible on bike rides. He also has cerebral palsy, which means he uses a wheelchair to move and uses his eyes and facial expressions to communicate. He can’t talk, but he can laugh, and sometimes he giggles so much that he gives himself hiccups. Max and Molly, my younger children, love spending time with Ben and lean against his wheelchair while watching their favourite films together.
Before I had Ben, I knew almost nothing about disability. My husband, James, and I expected to carry on with life as it was before pregnancy once our first baby was born: living abroad and travelling a lot. The first sign of any problem was straight after birth, when midwives urgently summoned doctors and Ben was swept away before I could
hold him. James and I held hands as we realised our son was extremely unwell.
Ben was taken to a special care baby unit, where we spent long days holding his fingers – the one bit of him not covered in wires or tubes. When he was a week old, a nurse carefully lowered him on to a pillow on my lap, keeping the tubes out of the way, and I could finally feel the warm weight of my baby boy. With his dark hair and tiny crinkled fingers, he was beautiful. We were relieved to hear he would live. However, his brain had been damaged by not having enough oxygen during birth, and that would affect his control of his body.
I didn’t really know how a newborn was meant to move. Compared with the other babies in the neonatal unit, Ben was big and robust, but when I tried to breastfeed him, he barely sucked. James attempted to bottlefeed Ben, but he was being kept alive by a feeding tube in his nose. After a month of little progress with sucking, the nurses taught me and James to feed him through the tube and this meant we were able to finally leave the hospital.
LEARNING ACCEPTANCE
We were so pleased to be at home and to be able to bathe Ben ourselves rather than watch the nurses do it. We finally felt like proper parents. He was a gorgeous baby, with dark blue eyes and adorable fat cheeks. He loved being held close to my chest, with his head tucked under my chin, but he was upset a lot of the time. He had reflux, which made him cry in pain and feeding him through the tube was difficult. We were totally focused on just getting through each day, keeping him nourished and trying to soothe him. I knew Ben would be physically disabled, but I didn’t think about what that would really mean for his or our future. I learned how to replace the feeding tube, but his cheeks were always sore from the tape holding the tube in place. When he was six months old, Ben had a permanent feeding tube fitted in his tummy, which, once healed, improved everything. We could finally see all of his lovely face. In the early days, I couldn’t understand how we had ended up in a situation where we were tube-feeding our son, but over time, it has become normal.
When Ben was little, we did a lot of therapy with him and went to hundreds of appointments. We had been told that early intervention was critical to ensuring the best outcome, so we saw multiple therapists – some NHS, some private. Sometimes it felt like the more we did, the better parents we were. I thought the best we could do for him was to help him not be held back by his physical challenges, so I spent a lot of time helping him to be able to support his own body. I hadn’t quite accepted how disabled Ben would be and I thought we should be doing physio with him all the time.
I got annoyed with James when he didn’t do enough therapy with Ben, even though he was always cuddling him and making him laugh. Our day-to-day lives were relentless, as James had an intense job and we both got very little sleep. I returned to work part-time as an architect, but often had to take time off for Ben’s appointments or when he was sick. James and I argued and were sometimes resentful of each other, but
Some people seem to pity us for having a disabled child, but there truly is no need
we mainly supported one another and tried to concentrate on looking after Ben.
It was only after Max, our second son, was born two years later, that I realised how different my children’s bodies were. Max learned to feed, roll and sit without help. I started to see that no amount of therapy would turn Ben’s body into one like Max’s, and I began to accept Ben for who he was rather than trying to fix him. He would still need therapy to build strength, but I decided we would only go to appointments that clearly helped him. I tried to remember that, above all, he was a boy, not a patient, and to make more time for things he enjoyed doing, such as the Hokey Cokey, or being pushed on a swing. James was right – it was more important to sit hugging Ben on the sofa than to make him stand next to it. My career as an architect stalled because I couldn’t work full-time while caring for Ben and taking him to all of his appointments. I loved working part-time, thinking about things other than parenting, but it wasn’t sustainable. James worked long hours and often travelled abroad, so I kept things going at home. However, I was able to use my professional skills when we adapted our house to suit Ben’s needs. I designed our home to be elegant, fun and accessible.
Ben had been going to a local nursery since he was one and loved the staff and other children. As he got older, we went through the stressful process of applying for educational support and he started at a local special-needs school. He enjoyed school and, with the support of expert teachers he thrived, starting to learn letters and enjoy assemblies. However, even now he’s 11, I am asked by friends and strangers whether he goes to school. A lady waiting next to us in a clinic, who also used a wheelchair, once assumed Ben must be at home all the time. ‘It’s so hard for these children,’ she said, looking at Ben. ‘I feel so sorry for their families.’ I get so fed up with these kinds of interactions, particularly when people apologise to me for having a disabled son or assume his life is miserable.
JOYFUL TIMES
While things are more complicated because of Ben’s disability, we’re not sad. We accept Ben for who he is – lively, funny and an integral part of our family. However, a lot of people don’t understand this, which is why, in 2014, I started writing a blog to explain what
was difficult about Ben’s life – often not the things people imagine – and what was joyful. I tried to explain that it is more frustrating that we can’t get a wheelchair services appointment, or that there’s no lift at our local train station, than the fact that Ben can’t walk. Meanwhile, Ben enjoys trampolining club at school and yelps with delight every time he is bounced into the air. He laughs hysterically at the story of George’s Marvellous Medicine. No one should feel sorry for him for being disabled. He is just as able as anyone else to enjoy life and live it to the full. Having a child with a disability is about both accepting and adapting. While Ben can’t talk, he can still communicate. Ever since he was little, he would stick his bottom lip out when upset, which helps tell us what he does and doesn’t like. He will complain if he’s bored and shout if he’s awake at night. We have been slowly, methodically, helping him use his eyes to point instead of his hands. We stuck ‘yes’ and ‘no’ symbols to the arms of his wheelchair and he can now look at these to answer questions, as well as control a computer with an eyegaze tracker. Before I had Ben, I thought you needed to talk to communicate, but I’ve learned there are many alternatives to speaking, and Ben can now tell us if he doesn’t want to share his presents with his younger sister Molly, who is five. It’s not enough for me because I want to know about his hopes and dreams, but it is progress.
Having three children has forced us, as a family, to go to places we otherwise might not have. Max likes scooting and skateboarding, so we visit skateparks together and discovered that Ben loves being pushed up and down the ramps. As James runs up steep inclines with Ben, tipping his chair right back, we hear him squealing while Max and Molly zoom past.
Max and Molly have always had Ben around, and their approach towards disability is more nuanced and accepting than most adults. They talk about it freely. When Max makes friends with a boy at a skatepark, I will often overhear them discussing their older brothers. ‘My older brother is 11,’ Max says. ‘My dad pushes his wheelchair up the ramps when we go to the skatepark.’ ‘Oh cool,’ the boy inevitably replies. And that’s it. Ben’s disability is no big deal, until people are unfriendly, then Max and Molly are fiercely protective or upset and I see that their lack of self-consciousness is fragile.
Ben’s disability is as much about the people and places around us as it is about how Ben’s body works. Many of the issues are to do with attitudes and inaccessible buildings beyond our control. We have to find the places that work for us and one of the best is the ice rink. We can just glide Ben’s wheelchair straight on to the ice, and then we fight over who pushes him so we don’t fall! Often the skating guides offer to push him and they whizz around at top speed. When we glimpse Ben’s face, he’s always beaming.
GETTING EASIER
Ben is just as able as anyone else to enjoy life
People assume the relationships between my children are one way, but they’re not. Max and Molly support Ben, but they also find him funny and are comforted by him. Ben isn’t a burden, he’s at the very heart of our family. Being a mother of three is busy and I only manage to be any good at it because we have help for Ben and a house that is fully adapted for his needs. Without the support of family, friends and carers, none of us would be as happy as we are and I wouldn’t have been able to write a book about what I’ve learned from being Ben’s mother.
We still have the same number of appointments as we ever did – about 150 a year – but everything feels easier than it did when Ben was small. I don’t know if looking after him has become simpler or if we have just got used to it. Ben’s life is more complicated to manage than our other children’s, but the worry and love are no different. I feared our lives with Ben would be miserable, and there are difficult moments, but mainly he is a joy and we are a typical family. Some people seem to pity us for having a disabled child, but there truly is no need. We are so lucky to have one another.
The Cracks That Let
The Light In: What
I Learned From My
Disabled Son (Endeavour) by Jessica Moxham is out 4 March