BY KATIE KRAWZAK, DNP APN CPNP-AC

As the parent of a child who is ill, someone has undoubtedly said to you, “You’re so strong- I don’t know how you do what you do.” Pediatric Palliative Care providers hear similar cliches. Others may look at our chosen career and wonder why or how we do this job. We hope you know we love what we do. Something in the very depths of our souls has called us to this work. We are allowed into the most sacred spaces of a family’s heart to do our jobs. Some days that work looks like repeatedly adjusting a medication regimen until she’s comfortable. Other days it is laughing about the time you made him go Christmas caroling with you (he’s a teenager, and is there anything more mortifying than caroling with your mom?). And some days it is sitting in silence, remembering her. It’s work we are called to do, work we are allowed to do, work we treasure.

Just as you pore over the internet seeking solutions, solace, and solidarity, we too search for answers. We hope you know we do our research. We learn about your child through you and our interactions with them, through your primary team, and through your medical record. We think about side effects as they occur, and ones that may crop up along the way. When we need a different approach, we collaborate with colleagues, talk to the experts, and study the literature. Our goal is uncompromising: to alleviate the parts of your child’s illness that keep them from living their life as fully as possible. 

As you navigate the unknown, you hold tightly to the parts of your child that make them unique individuals. We hope you know that getting to know your child and family is the best part of this job. We remember he likes only the brown rye chips from Gardetto’s snack mix. We know your family cat was named after a vacation spot you went when the kids were little. We know she brings cereal to snack on during chemotherapy days. We note in the chart that she needs her muslin blanket, and he can’t sleep unless country music is playing in the background. We know you have names for the various giggles he makes – his only way to communicate with you. We remember she rocked a bedazzled fanny pack on Prom night. These are the pearls that make your child special. These are essential pieces of your story, and we treasure them. And we remember them.

The grief experience you are living is one no one but a fellow parent can fully understand. We hope you know we recognize that we don’t know exactly how you feel. Most of us have never gone through what you are living daily. Most of us have never lost a child. Those of us who have been working in this field for many years may have shared similar journeys with other families, but still not know the heartache, the love, or the surrender to the unknown that is uniquely yours. We feel this distance between you and us, and hope you allow us to climb down into your grief with you, to walk with you, to bear witness, and hopefully, hopefully – to ease the pain in the smallest ways.

Hope can feel heavy. Again and again, we humbly watch you break down your big hopes into smaller hopes to survive this hour, this day, this minute, or this breath. We hope you know we hope with you. If you’ve been on this road for a while, it’s likely you have heard, “we share in your hope” from someone on your child’s healthcare team. It’s not a platitude. We hear your hopes and hold them steadily in our hearts as we plan for the unknown. We celebrate with you when hopes are realized. We grieve with you when they are not. Hope is what carries us all.

Hope is what connects us to you. 

We hope.