Bravery is a response to fear, not the absence of it. It’s shining a light in dark corners or opening doors to see what’s on the other side. Bravery is knocking down walls and jumping over fences. Bravery is facing pain, even when it’s on your knees. Bravery is holding the hand of the one you love, and then letting go.
Bravery is a choice, but not one I think anyone should have to make. Regardless, I’m going to ask you to be brave. I’m going to ask you to look into a dark corner with me and shine a light. I’m going to ask you to listen to a sad story. I promise, there is a point.
It’s hard to remember all their names, though I wish I could. Suzanne Gwynn, an RN and the founder behind Ladybug House, does remember them. Whether they lived or they died, she remembers them all. I doubt she’ll ever forget. The memories of the children that she’s cared for, the life that they had, is a driving force behind her actions. Sick or well, a child is still a child. They still laugh and play. They make wishes to the stars seen outside their hospital window. They still dream of what they’ll be when they grow up. The little dimples in their fingers are just as sweet, and their smiles are just as genuine.
It can be difficult for the families of a sick child, as I’m sure you can imagine. It’s difficult to face the reality that all those hopes for the future are at stake. Hospitals are built for the sick, not for their families. Anyone who has ever visited a loved one in the hospital is aware of how uncomfortable an extended stay can be. Unless home is within 30 minutes, children are not able to go home in between treatments. Many children facing life-changing illness do not set foot outside of the hospital for more than a month over a two-year span. Families of the critically ill often camp out in the waiting room to be near the cries of their child in the night; to be present when the click of the doctor’s shoes resound down the hall bearing news.
Families are often separated for months at a time, taking the stay in the hospital in turns. Often husbands and wives only see each other in passing. One will care for their healthy children while the other is at the bedside of their sick child. Brothers and sisters take turns visiting their sibling, as there are only two visitors allowed in the ICU at a time. When parents do receive a life-changing prognosis, parents will often choose to continue to receive treatment until the very end (as I imagine we all would). Many children with life-changing illness meet their death in the hospital bed, surrounded by sterile machines. Death far from the warmth of their home, and the entirety of their family.
Parents do have the choice to take their child home after a life-changing prognosis, forfeiting treatment. However, there is no hospice care available for terminally ill children. That is a dignity and support that is reserved solely for adults. Parents are not only expected to figure out how to work the medical equipment on their own but are also dealt the heavy load of having to watch their child die.
Once they do pass, parents are then expected to understand the ensuing course after death. For example, a parent might call the funeral home soon after their child dies. They then learn that funeral homes only accept an announcement of death by a medical professional. Police are then called, who then advise the calling of paramedics. Paramedics only legally announce death after attempting resuscitation. Resuscitation on a child that has been dead for hours. Death is finally announced; only then will the funeral home take the child.
All these details were patiently explained and recited by Suzanne; making it all the more apparent the ignorance that I, and many of us have, when faced with such a truly heart-wrenching subject. A subject that goes unheard and unserved simply because of the human tendency to divert from pain. Thankfully there are people like Suzanne who don’t turn away. They do not shut down. They weep. Then they get up and do something about it. This is true bravery.
Suzanne Gwynn has a dream. That dream is Ladybug House. Currently, it’s an organization that offers bereavement support. Bereavement support is a broad term meant to describe a variety of activities. For instance, it could mean calling for an air-quality test for a child terminally ill with lung cancer. It could mean buying Christmas gifts. Bereavement support covers everything from a listening ear to connecting parents to social workers.
However, Suzanne is looking to make Ladybug House into something more. She wants to make the nonprofit into a brick and mortar location; a place of respite. A place where terminally ill children can come and rest outside of the hospital. A place where the whole family can experience a sense of normalcy and emotional well-being—together.
She hopes to build a home for children who are in need of critical or terminal care. A house where parents can choose to continue to receive medical care for their children, even to the point of death, so that the child dies surrounded by the people who love them. A nonprofit that aims to lighten the load that parents bear when facing the life-changing illnesses of their children.
There will be two options when booking a room at the Ladybug house; both options provide full medical support. Families have the option to spend the time booked together; they can spend that time eating dinner together or talking. Maybe play some board games. The second option is for the sick child only to spend some time in a home-like setting while their caregivers take some time to recharge. Caregivers who live more than 30 minutes away can take a weekend to go home, take a nap, and possibly even eat something not cooked by the hospital cafeteria.
Ladybug House will be entirely free for families, supported by the greater community. Since the patients who come to Seattle Children's Hospital encompass the entirety of the Pacific Northwest, and not just Gig Harbor, there are a lot of people and resources available to provide support. Other such examples of similar organizations include the George Mark Children’s house in California, Ryan House in Arizona, and the Helen House in the United Kingdom. All the houses were built with the idea of providing palliative pediatric care to children and families on a very unique and challenging life journey.
Let’s join Suzanne and staff in extending the family moments beyond the required visiting hours; to provide whole care that encompasses the mental and spiritual, not just the physical.
“If we cannot add life to the days of the child, we can add life to their days.”