The first time someone called me a courageous parent I was sitting in shock, in two-day old clothes, on the pull-out hospital cot. The sharp scent of hand sanitizer filled the room as each member of the palliative care team entered and formed an intimate semicircle in front of me and my son. I cradled him in my arms as the conversation began with a review of my understanding of the diagnosis, then quickly veered into realms of uncertainty. I asked what was going to happen, when the seizures would start, and why the malformation had occurred.
As the care team fielded my unanswerable questions, they offered gentle guidance back to the present moment, to what I could do now, to the baby sleeping against my chest.
The conversation then pivoted to next steps: follow up appointments, and an online resource I could explore – the Courageous Parent Network. The name seemed almost ironic, as I felt anything but courageous. Trembling-in-their-boots Parents Network? Distressed-by-a-Diagnosis Parents Network? Too-Frazzled-To-Sleep Parents Network? Those sounded like places where I belonged; but courageous? No way.
Emboldened by grief I said exactly that. “I’m not courageous.” It felt true. I was nauseous. My mind was frantically searching for an escape hatch from this version of parenthood. I was having upsetting fantasies of laying my child down in his crib and simply running away, out of the hospital, gone forever. I told the team that too.
The social worker looked at me with kind eyes, and said, “Well, I don’t see you running. You are still here. That is courageous.”
I was sitting still, doing absolutely nothing but holding my child; and, according to the professional in front of me, that was courage. If simply staying counted as bravery, then perhaps I could be a part of the Courageous Parents Network.
In the six years since diagnosis, I have continued, courageously, to be the mother my child needs me to be. For me, courage is setting up a suction machine in the middle of the night. Courage is researching which wheelchair will fit in the back of the car. Courage is calling the doctors office again, because something still does not seem quite right. Courage is requesting to train the school nurse on my child’s unique needs. Courage is asking a friend to drop off a meal. What does courage look like for you? Courage is learning from and loving your child the best you can, despite knowing that the grief will never resolve and that you cannot fix the diagnosis.
Being a part of the Courageous Parents Network is now a part of my self identity. When caring for a medically complex child, every single day requires grit and gumption. It is relentless; and it can be deeply lonely. I am grateful to the caregivers and care professionals who have shared their stories through CPN; they have guided our family’s journey and reminded us, again and again, that we are not alone.