He has no future, they said. He will not survive the birth. He will be ‘life limited’. He will never walk, talk, or feed himself. He will always wear nappies. He will not know you. He will be blind. A drain on society. A burden.
Think of his future, they said. End-of-life plans, special schools, trust funds, care homes, ramps, wheelchair-adapted-vehicles, standing frames, IV ports, ugly shoes and endless daytime TV.
Think of his sisters’ future, they said. Young carers, disadvantaged, impoverished, missing out. Kissing their mother goodnight to find her gone in an ambulance by dawn. No holidays abroad, no going to the beach, no privacy with carers in and out of their home. Passing the wipes and holding syringes and comforting each other while you see to him. Making financial decisions on their brother’s behalf, when you are gone.
What about your future? They said. Forget your career, they said. Don’t put your life on hold, they said. Say goodbye to your retirement. You’ll be tied down, mired in paperwork, pushing a cumbersome wheelchair, changing nappies on grown man. Forget your relationship, they said. Marriages with disabled children don’t last.
Reclaim your future, they said. A simple, lethal injection. Deliver the body. Grieve for him. Resume where you left off.
We chose a future. His future. Our future.
We chose hope.
We chose lonely nights in hospital, torn between our children. Staying up late calculating childcare costs to claim a pittance of a carers’ allowance, or filling in forty-page benefit forms detailing every deficit they perceive my son to have. We chose fighting for equipment, education, care and support. We chose saving our own child’s life, night after night, armed only with a suction machine and a thin plastic catheter. We chose entrusting him to surgeons and anaesthetists, again and again, pacing miles as we waited to see if he would make it through this time. Waited in hope.
And we received. We were gifted a contended, gentle little boy with profound brown eyes and the cheekiest grin. A child who shows us the joy in rainfall, in birdsong, in stripy jumpers and shifting sunlight falling through leaves. In soft curls and fluffy socks and a room full of fairy lights. Precious smiles, little nuzzles, special noises. A gift to our family and our community. We received hope.
We embraced the future: his sisters dote on their brother; his bed is their favourite place to play; his cuddles, their most frequent demand. The highlight of their week is a Friday night disco in Benjamin’s room. Young carers by desire, not duty. An eight-year-old thinker who wants to be a nurse, and a four-year-old whirlwind who just wants to jump and jump and jump with excitement and love. Together, we discovered the calm release of a children’s hospice; the excitement of an adapted canoe; the joy of being a family. We grew hope.
We accepted our new future, with its shifted priorities. Thanks to Benjamin, I found new eyes and a new voice, to see and proclaim a hidden world of inequality. Far from losing a career, I gained a vocation fighting for access, inclusion, fairness and humanity. Our marriage has deepened as we encounter highs and lows on a weekly basis that most folks barely face in a lifetime. We joined a new tribe with endless lessons to teach us about the world, our son, and ourselves. We entered a community willing to open their arms, draw us in, and bear us up.
He is our future, and our future is hope.