It is difficult to understand what it feels like when parents lose a child.
This little boy started life out like any other child and everything seemed perfect, however, his days were numbered. The parents began to notice physical difficulties that Ben was having and specific milestones that he did not seem to be meeting. Ben’s parents became concerned and after much testing and lengthy waiting periods the final diagnosis was Battens Disease.
Battens Disease is a rare progressive degenerative disease which causes blindness, seizures, loss of motor skills and is always fatal. Not only did his parents know their child would die but they were watching his death happen in stages before their eyes. There were a lot of community support services involved but when Huron Hospice services were offered the parents were forever changed.
As the volunteer coordinator I first visited with Ben’s mom when Ben was 3 years old. I discussed the services we could provide and how Hospice would be able to support her and her husband. There was virtually no other family member to support this couple.
Throughout the remainder of the Ben’s illness a hospice volunteer was able to be a part of the team that helped this family cope with an extremely unhappy situation. The hospice volunteer became a friend, especially for Mom. The volunteer had young children herself and even though this was a tough position for her it helped her identify with what Ben’s mother was going through.
Ben died a few months after his eighth birthday. When I visited the funeral home after the death of this child it was hard to believe that he had undergone such suffering. He looked at peace and all the signs of struggle were gone. The struggle will continue for the parents for years to come and the hospice volunteer will continue to be there to support them.
Life is different for all of us and death is also different for everyone but hospice palliative care volunteers help to make a difference during the dying process.
– Anonymous Testimonial from Huron Hospice
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