Like so many of us, Jessica prepared for the birth of her first child with family advice, parenting books and classes. Her experience did not follow the predicted path, their son was born with cerebral palsy and it filled them with frightening uncertainty, exposed to all of the difficulty and unfairness of life. They were fighting to keep their son Ben alive. Jessica was fragile, lost without a clue of what the future may hold and my heart ached for her and their family. Rather than finding the demands of parenting impossible, it was the relentless demands that keep her going. Being held together by her love for Ben and the family’s love for her.
Jessica’s beautiful words and her intriguing honesty have given me a deeper understanding about embracing disability. Her drive for people to understand what their life is like and so many others living with disabilities is inspiring as it will create better support and possibilities. Without a doubt, her book will be extremely useful for my work with The Little Explorers Activity Club that supports families with special needs. Packed full of thought-provoking discussions, she learns to truly listen with deep respect and love.
Extract from Chapter 4
‘We get a train from the nearest village into Edinburgh where the festival is on. While James goes to a comedy show, I take Ben to a gallery of modern art. We see an exhibition of Hiroshi Sugimoto’s images of photographic plates being electrocuted. They are dark pictures with bright white explosions of light, what he calls ‘Lightning Fields’. He seems to have made the invisible visible in all its unpredictable, unique beauty. Perhaps this is what is going on in our bodies – microscopic crackles between synapses and cells that we don’t normally see. Maybe we all have little fizzing rivers of energy flowing from our brains to our muscles, but Ben’s are more like these bright cracks and unpredictable explosions of activity. I am hoping Ben will let me see the whole exhibition, wary that if he is unsettled or something goes wrong with his milk I don’t have James there to help me. But as I push Ben around the museum in his laden buggy he is calm, looking up at the flares of light. I buy a poster of one of these white lightning bolts frozen mid-strike, with the artist’s name in bold text above and the Edinburgh gallery written below. For the next two years, until we move house and the frame gets accidentally smashed, the print hangs above our bed. A little flash of inspiration.’
I’m inspired and will be recommending her book to parents as a testament of following your parenting instincts. Inclusion and environment is the key, Ben is included in all of the love and unique beauty a family can share. Eleven years on, with two siblings he jokes and laughs with them using the Alexa speaker from his eye gaze device, he listens to his father read Harry Potter and a great many other books from their ever-expanding library. Their story spreads an uplifting feeling of hope and I admire what she has achieved and how it will bring light and joy to other families.
Inclusion for Ben is at the heart of everything, so for parents who feel a little lost about where to start to revamp/re organise their homes I asked Jessica if there were any key factors, thoughts, ideas that she felt would be helpful to think about.
‘This is a huge topic. I had an enormous advantage in being an architect so I could tell when I looked round potential houses which would be appropriate for adaptation. I think the most important considerations are level floors and easy access in and out. It’s crucial to be able to get in and out of the house easily (we love having ramps rather than needing use any lifts) and then to have as large an area as possible on the ground floor without needing to push a wheelchair around sharp corners or bump over thresholds multiple times a day. Also, everything needs to be bigger than you think! I thought the landings and widened doorways were ridiculously large but now Ben is eleven I can see that we really need that much space (and still the walls are covered in marks from where we’ve bashed them). But also, good design is key. I feel passionately that designing a house to suit a disabled person doesn’t mean compromising on how it looks, it’s just that a lot of accessible design is bad. A fully accessible house can still be a beautiful house.’
After Jessica finished writing her book it should have been a time for celebration but the Pandemic has been very difficult for many of us for a variety of reasons. I can imagine it has put a huge strain emotionally on families with disabilities as the hospitals were filling up and unable to cope. I asked how she got through those dark moments of worry and what has helped her in these tough times.
‘We had a particularly difficult time at the beginning of the pandemic because I had an accident which meant I had to have major surgery on my ankle just before lockdown. Just as I was discharged from hospital, unable to walk, our daughter developed a cough and fever and so we not only all had to self-isolate at home, but we also had to separate her from Ben within the house. We have always encouraged Max and Molly to be very tactile and relaxed around Ben, and it was heartbreaking to ban her from touching him. At the same time I was reading reports of criteria for hospital treatment and it seemed like Ben’s ‘frailty’ would mean he might not be prioritised should he need hospital care, and we knew he was vulnerable to respiratory infections.
I coped with it by buying an oxygen saturation monitor in the hope that we could care for Ben at home as long as possible if we had to, and we barely left the house for months. We were lucky that some of Ben’s carers were still able to come, and as we headed into the summer last year I could walk again so it has all seemed easier since then. In fact, because we have been so cautious, Ben has been healthier than ever over the last year.
I have found parts of the last year incredibly difficult, as have so many people, but I’ve been lucky to have a husband to share the challenges with, and we are fortunate to have brilliant carers for Ben who have helped us enormously. Still, the pressure of needing to do and be everything to him (teacher, physio, speech therapist, nurse) has been a lot. I actually think the difficulties of Ben’s early years, and the ways in which we are used to our everyday lives being complicated, in some ways prepared us well for the pandemic. The past year has been hard, but we’ve had lots of hard periods over the last eleven years and so I think we have some experience in how to deal with difficult situations!’
Jessica’s book, ‘The Cracks that Let the Light In: What I learned from my disabled son’ was published by Endeavour and released this month.
