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Because family life matters

Losing a child with additional needs

Two couples, Sue and Patrick, and Howard and Mary, reflect on what life is like when you care for, and lose a child with additional needs


  • “We all know that when our children are young they need us for our love, care, support and practical help – but a child with a disability will always be dependent.”
  • “Dressing, washing, bathing and brushing their teeth are all part of your normal life.”
  • “You have to find a carer so that you can have an evening out.”
  • “He was doubly incontinent and had fits most days.”
  • “We had to move house, as we needed somewhere with a downstairs bathroom and bedroom.”
  • … and how different life is without them

    • “I had often imagined what he would be like when he was in his forties.”
    • “We thought we knew what our future would be like. We were prepared for that and looked forward to it. When he died, it felt as though we had lost our future.”
    • “To suddenly find yourself without the person to whom you have dedicated your life 24/7, even into their adulthood, can leave you questioning who you are and your purpose in life.”
    • “We just hadn’t realised the level that we were living at until Jonathan suddenly wasn’t there.”
    • “I felt as if I was going mad – I couldn’t concentrate on anything for ages.”
    • “I made plans for his future after my death by writing a will and setting up a trust fund, but never imagined that I would spend any part of my life without him.”
    • “One of the things that has helped us most is to learn to appreciate and enjoy the simple things in life that Nathan enjoyed – whether it’s music or Thunderbirds or seeing a hot-air balloon in the sky. When the unbearable waves of pain return, we cry. It’s part of the process.”
    • “Try to picture and remember your child enjoying the simple things – be determined to honour your child by appreciating such things and keeping their memory alive.”