When a Child is Dying (written for Hospice of Michigan)
On good days, 5-year-old Peyton Unger smiles and laughs so that her dark eyes dance and dimples crease her smooth cheeks. On other days, she vomits frequently or has seizures that last for hours. When she cries, no one knows why. Peyton can’t talk. She can’t walk or even hold her head upright. She eats and drinks through a tube surgically implanted into her stomach.
Peyton, and her brother Patrick, Jr. (Patty), 2, of Canton, both suffer from Batten disease, a rare genetic disorder that causes the brain to atrophy. It is invariably fatal.
When Marcey and Patrick Unger learned their only children were dying, they turned to Hospice of Michigan for help.
As Peyton fought pneumonia in the hospital last January – her fifth hospitalization in a year – Marcy asked herself, “Who am I keeping them alive for? Them or me? Are they happy? Are they in pain? Would I want to live the way they’re living?” She signed a do-not-resuscitate order.
Hospice, she said, was “the right choice – the only choice.”
Hospice has provided aides and volunteers who can stay with the children so Marcey, their full-time caregiver, can take a break. Nurses are available around the clock to answer questions or respond in an emergency. A social worker helped her plan her babies’ funerals.
The Hospice staff, whom Marcey regards as surrogate family, bring a sense of normality into her life. Only 27, Marcey has been married for five years and has spent more than four of them caring for her seriously ill children. She has no family or close friends in Michigan. With the Hospice staff, she can laugh and gossip about the sports stars she admires.
The nurses and social worker have been encouraging her to get out with friends, and to think about what she will do with herself after her children are gone. She’s thinking of becoming a nurse or physician’s assistant so she can help other children in need.