When speaking with Suzanne Gwynn about ladybug house, the project she has worked for years to create, you get the impression that she has enough stories to last all day and all night. Yet as you listen to those stories, you realize that the true passion that motivates Ms. Gwynn was born from tragedies that are, in the English language, literally unspeakable.
At times during her years as a nurse, Ms. Gwynn was lost for words again. She struggles to describe how a family Pierce County watched one of their children die in their own home, because the county has no hospice policy. To access a funeral home they needed a death certificate. So they had to call the police, and then the police called the paramedics, who were legally mandated to attempt to revive the young child — four hours after the death.
There is no english word for a parent who has lost a child, no equivalent of ‘widow’ or ‘orphan.’ Apparently it’s too terrible to even consider. This linguistic taboo, along with the relative rarity of childhood cancer, causes the need for children’s palliative care to be overlooked in America. There are only two childhood palliative care center in the whole nation.
The idea began in the U.K., where there are now 54 children’s palliative care centers. Ms. Gwynn has visited them all. “It’s more about life support than end of life support,” she says. “No child waits to die. They’re biking through the halls with their IV machines, they’re making music and making art, and the whole family gets a chance to be together as a family. Right now, 80% of american children who die do so in a hospital.”
Ms. Gwynn worked as a nurse for 18 years before she finally decided that if nobody else was stepping up to advocate for a better option for families, then she would have to do so herself. Ladybug house is her personal labor of love. It’s lonely being the sole local champion of an unsung cause — luckily Ms. Gwynn’s passion is persuasive: hundreds of people have volunteered for the cause, which allows her to help one family per month to deal with a child’s terminal illness.
But the project needs more funding, more staff, in order to really come into its own. Ms. Gwynn’s vision is a large house with 12 suites where families can book time to stay, together, and receive care from nurses and child-life therapists. There are a few parcels of land around seattle where Ms. Gwynn could envision a real ladybug house: on the old weyerhauser campus, at the edge of discovery park, or on a piece in Laurelhurst, right near children’s hospital.
Two models inspire Ms. Gwynn’s vision for ladybug house. One is canuck place, a childhood palliative care center in Vancouver, B.C. that is entirely funded by private donations and hospital support. Another model is bloodworks northwest, the blood bank that a number of regional hospitals help to support, and then use its resources when they need to. Ladybug house would be a common resource for our entire regional health system.
Much more funding is needed for ladybug house to become a reality. Equally important, the community needs to take ownership of filling this crucial need in our healthcare system.
“That’s what’s so great about the glassybaby grants,” Ms. Gwynn says. “People in Israel, Australia, South Africa, Malawi, they’re sharing it and asking people to vote for ladybug house. It wasn’t the $3,000. It was giving me faith that there are people out there listening. Because it’s a lonely journey. But I don’t have the option of quitting. Because every day I get a family calling… Somebody saying “don’t quit, please.” And I’m tired. But I’m a stubborn old Polish Irish nurse.”
Keep up your great work, Ms. Gwynn. We at glassybaby are onboard, and we are here to help your cause.
learn more and donate to ladybug house here.
if you need even more inspiration to assist the cause of palliative care for children, then take 15 minutes to watch this ted talk.