Illuminate Your Path to Healing

My daughter April was born in 2007 with undiagnosed Down syndrome and a hole in her heart that required open heart surgery before she was even four months old. The days immediately following her birth were a whirlwind of thoughts and emotions.

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My daughter has Down syndrome. The words kept running through my mind — and I didn't know what they even meant. I tried asking questions of the hospital staff, but no one gave us any answers. Two days after her birth, a nurse and a social worker came to visit. They left us with an information packet that still didn't answer anything. Before they left, the social worker said, "There are people out there who adopt babies like yours." I've never forgotten that comment.

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April spent the first week or so of her life in an incubator. She was tiny and very unwell. I was scared to let myself love her — her survival was day to day, and I didn't know if I could cope with losing her if I allowed myself to get close. I fell in love with her anyway. And every time I thought about my resistance to that love, I hated myself for it. The shame and guilt were unbearable. I began to shut down emotionally.

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Eventually she was well enough to come home, but she struggled to eat — she couldn't figure out how to swallow. A feeding tube through her nose became the only way she could feed for the next couple of months. Her heart doctor told us she needed surgery soon or she wouldn't see her second birthday. The tube was the only way to build her up enough to survive the operation.

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She had her surgery in early March 2008. We spent five weeks in hospital before we could bring her home. Her recovery was slow, and there were times she became ill again and ended up back in hospital. I can't describe the fear I felt each time it happened. My love for her grew stronger every single day — and the more I loved her, the more terrifying the thought of losing her became.

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Before her first birthday, we moved from New Zealand to England after our visa extension applications were denied. That move marked the beginning of a downward spiral in my own mental health. I hung on by a thread, waiting — and waiting — for NHS therapy to begin. Sixteen months I waited. When I look back on that time, I sometimes don't know how I got through it.

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That sixteen-month wait has never left me. I was having suicidal thoughts and told my doctor — who said there was no way to get immediate help; the system was too backed up. My son was born during this period, and throughout my wife's pregnancy, one thought consumed me: what if this child has Down syndrome too? I won't be able to handle it. The self-loathing came back with full force. He was born with no complications and has grown into an awesome young man.

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Eventually, our marriage collapsed. Would it have survived if I'd been able to get help sooner? I honestly don't know. What I do know is that everything I went through — the fear, the grief, the long wait in the dark — has led me here.

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I have recently completed my training as a therapist. The NHS has improved over the years, but there is still a wait — and I know better than most what that wait can cost. My aim is to fill that gap. I currently offer a reduced rate for parents of SEND children, work locally in Southend-on-Sea, and offer online sessions for those who can't get out for an in-person appointment. My ultimate goal is to establish a Community Interest Company and secure funding to provide counselling to parents free of charge.

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If you or your partner are struggling, or simply need someone to talk to in a non-judgmental and empathetic space — please reach out. You are worth it!

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