If you have seen Hamilton, you know the scene. Phillip, Alexander Hamilton’s son, has died, and Alexander and Eliza, his wife, have moved uptown. The chorus repeats “can you imagine?”, “it is quiet uptown” and then the words most striking to me: “they are going through the unimaginable”.
Tears were streaming down my face as I sat alone behind my own two boys during the play, watching a reenactment of the unimaginable — the loss of a child. Tears from the pain, the strain on the couple and the moment when Eliza reaches for Alexander’s hand and echoes the chorus: “it’s quiet uptown”.
In my job, I am often witness to the unimaginable. Part of my role is to guide families on the path to visualize the unimaginable and control or shape parts of it wherever possible. Functionally, it can be like peeling back a protective screen that we should all be forever saved from as parents — peering into the scary darkness that families are moving toward, while hoping all along there is another destination. Pushing away the unimaginable.
I am a nurse practitioner in pediatric neuro-oncology and often walk with families through their cancer journey. For some, that journey includes the diagnosis of a brain tumor, the start of treatment, intense symptom management, completion of treatment and transition to survivorship. But sadly, for many families, there are devastating detours to recurrence, progression, multiple therapies and clinical trials and ultimately end of life care.
When people ask me what it is like to do my job, it can be difficult to discuss. Lately, I’ve taken to describing my work as a sort of end-of-life doula. My role is to guide and walk with parents and families through the most painful time of their lives as something completely unnatural happens. Or to find them the guides they need who can be at their sides during the final months and weeks of their child’s life, whether that be local nursing care or hospice.
Sometimes families initiate the conversation about the end of life: “how will it be?” “what will it look like?” “what will we as parents do?” Other times, we have to begin the conversation by saying: “other families tell us ..” or “other families worry about ..” This is how the door is opened to look into the darkness, to try to find a path and gain some control along the unimaginable route as a mom or dad.
With love and intention, there can be moments of beauty and light like nothing I have seen. This by no means negates the awful mix of sadness, torture, utter despair and feelings of injustice that come from losing a child. But sometimes, facing the pain and fear and continuing anyway is where the beauty lies.
- I will never forget making my recording for Jimmy as part of the video his cousin put together of people from all different parts of Jimmy’s life, sharing memories and messages of love.
- Or the book read repeatedly by loved ones, big and small, to the small child who lay in the bed in the room. I will never be able to get through The Kissing Hand without tears.
- Or the gathering in Tahoe, arranged at the last minute, that allowed the young adolescent the chance to experience Tahoe with his family one more time — the blue sky, the snow, shared with close family and friends, all in a spectacular rental property arranged in a day or two.
One thing I’ve learned is it takes a team — holding onto each other and caring for each other through the end of the loved one’s life. No one wants to walk into a dark space alone.
I don’t begin to know how to write a “how to” do this. There is no manual. Every situation is unique. But as one physician colleague teaches, “the parents and families have to survive” when we can’t save their child. But if there was a way to tell someone facing the unimaginable, this is what I would say:
- Trust your team. Trust that you can always ask questions. Trust means they will answer or find someone who can.
- Trust means you, as parents, can be honest and raw in this time with full acceptance and love from those around you, no matter what
- Control the time you do have with your child — in whatever way you can
- Make memories
- Have no regrets
Some of us choose to walk into the darkness with you because we know it is hard to do alone. Look for those helpers from all parts of your life who know what to do or how to comfort and help you. But know that your experience is as unique as each child is his or her own special person.
There are moments that the words don’t reach
There is a grace too powerful to name
We push away what we can never understand
We push away the unimaginable