‘The loss of his voice was the hardest thing to bear’

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A dad from Sandy has found his own unique way of coping with his son’s life-limiting illness.

As part of Children’s Hospice Week, Mark Campbell, 34, whose son Henry is cared for by Keech Hospice Care in Luton, has launched his debut novel, Footsteps in the Snow, to capture his thoughts, desires and the heartache that followed Henry’s brain injury.

“Henry, four, was born the stronger identical twin at 1,700 grams, with his brother Jasper weighing only 850 grams,” said Mark. “On his second day of life Henry held my finger. It was a wonderful moment in which we truly bonded. Tragically though, Henry had a seizure that night and he hasn’t been able to hold my finger the same way since.

“When we were told about Henry’s brain injury I was numb. I remember thinking I should cry, but no tears came, not until later. As the reality of Henry’s brain injury started to become clear, our future began to feel very unclear. Expectations of how I wanted life to be all started to crumble away. I wasn’t able to replace my dreams with an alternative vision so there was a feeling of helplessness.

When the realisation hit me that Henry would never be able to talk, it was the hardest thing to accept. The loss of his voice seemed to me far more significant than anything else. Ultimately, I was left with a lot of anger and had nowhere to direct it, except at myself”.

As Mark found himself struggling to come to terms with his son’s condition and his own depression, he sought support from places and in ways he thought he never would.

“I’m not ashamed to say, I wasn’t coping. I’d always considered myself a private person but I found myself forced to turn to others for support. We’d just moved to the area and I felt alone and extremely isolated. There was a sense to seek support would be an acknowledgement of our reality for which, at the time, there was still some denial.

“I admit, we went to Keech Hospice Care with apprehension. But Keech has given Henry opportunities he wouldn’t have been able to enjoy otherwise, including music therapy and the charity’s brilliant hydrotherapy pool. As a family, we’ve enjoyed overnight stays at Keech when our collective fatigue has become too much to bear. Importantly, Keech Hospice Care has also enabled us to form and nurture relationships with other families facing similar difficulties. Without Keech Hospice Care, I know it would just be the four of us alone at home.”

Mark took his need for support further still though and felt compelled to write publicly. As part of Children’s Hospice Week, he is launching his debut novel.

“Footsteps in the Snow is a metaphor for loss and grief. It reflects my own thoughts, desires and the heartache that followed Henry’s brain injury. It raises the question of what happens when your life as you expected it to be, is snatched away. Ultimately, it considers the possibility that even through a life altering event, when it might feel like the world has ended, if you pay attention to what’s important hope can emerge.

“The journey of writing Footsteps in the Snow has allowed me to consider my own path. Whatever happens now, I know even though I still face difficulties, I haven’t wallowed but have fought back and regained a sense of understanding in my life.

“Henry is an absolutely wonderful and charming, little boy. I couldn’t be more proud of him! When he was first diagnosed, I was told parents of disabled children often find the relationship with their child very rewarding. In my hurt and anger at the time I couldn’t understand what this meant, but I now see how true it actually is.”

Mark Campbell’s debut novel is available now to download on Amazon Kindle at £3.99.