The importance of respite for families

While some families of terminally ill children are able — and prefer — to care for them at home, the task is unrelenting and exhausting. Parents yearn to spend quality time with their kids instead of always tending to therapy and medical matters.

"It's important that these families get a break, because the kinds of conditions these children are living with are demanding and sometimes for 24 hours a day," said Ted Bowman, a Twin Cities area educator and consultant specializing in grief and loss.

In addition to hospice services, the mission of St. Louis Park nonprofit Crescent Cove is to provide weekends of respite, in which nurses care for gravely ill children so their parents can sleep, rest at home or even go on vacation.

Nobody knows the benefit of taking a break better than Jeannie Goodspeed, whose daughter, Ivy, died in 2014. Ivy had a host of medical complications, including cerebral palsy and a seizure disorder. Goodspeed spent months looking for someone who could watch Ivy every other weekend.

"The respite weekends were like a refreshing rest stop in the middle of a chaotic marathon," she said. "We had our house to ourselves, without another caregiver present. We had time to focus on our other two kids and time to focus on our marriage. We had time to miss Ivy, and then welcome her back into our arms, refreshed and ready to move forward."

Aimee Blanchette