There are support groups for the parents and families of children with diabetes, cancer, and Celiac disease. There are support groups for the parents of special needs children and for the devastated parents of children who have died, and for other more-common medical issues with names and protocols. Though all of those paths to support come at a terrible price to all involved, the group of fellow travelers offers a space for release and understanding.

There was no name for Sammi’s odd combination of issues. There was no support group for “post-vascular-ring-repair with a side of just-won’t-eat and occasional-pneumonia-and-sinus infection.”

David and I hobbled along after our daughter’s heart surgery as our friends and family watched from the sidelines, worried for and with us, but never truly understanding the daily knot in our stomachs over whether or not she’d eat, whether or not that cough was getting worse, whether or not we were paying enough attention to our older daughter. The sense of emergency was dulled but not gone.

In retrospect, I can see that there were places into which an intuitive doctor could have inserted some help with our mental state. As a system, children’s medicine in this country largely ignores the parents except as chauffeurs, cooks, medicine dispensers and, sometimes, bandage-changers. Even the children themselves are only approached as bodies to patch and treat until they are in the hospital, at which time a social worker from “Child Life Services” will arrive in the room to play checkers or suggest deep breathing. Sometimes the parents of children admitted to the hospital are offered free massages.

The number of issues that can arise when the medical system ignores the social and emotional needs of a family in crisis — especially long, drawn-out crisis — have a real effect on the actual body that system is looking to patch and treat. Parents living in fear and confusion make decisions based on fear and confusion. Parents who have no resources run out of steam and give up on whatever they must in order to make it through another day. Compliance with drug regimens and treatment plans and follow-up tests requires the energy and fortitude to keep track of it all, not to mention the income required to manage the expense.

People often asked “How on earth did you get through that?,” that being whatever the latest crisis might have been. The answer is that we dug deep and we were lucky, and we talked and talked about it to anyone we thought might be able to help. We’re not praying people, but we threw lifelines out into the world and hoped people would hold them for us. I was once criticized by a family member for being too open about Sammi’s health issues, scoffed at for sharing her story with a parent in her baby music class. It was a crucial survival tool for me, to be able to talk like that.

I learned about coconut oil — a great calorie booster — from a clerk at the grocery store who saw me squinting at protein powders and asked me why I needed them.

I learned about tonsil and adenoid surgery — which Sammi had at age 2 — by asking friends if they knew anyone whose kid had gone through that.

I learned about How to Talk So Kids Will Listen and Listen So Kids Will Talk from a parent in swimming lessons who observed my frustration with a tantrum.

I learned a tremendous amount by doggedly pursuing useful knowledge everywhere I went. It was effective but exhausting. Imagine if doctors or their nurses were empowered to prescribe that kind of help to their patients. Imagine the people without support groups who could benefit from being treated like a family instead of like a body with servants.

Sammi is more than a body, and we are more than her caretakers. Families need help. There should be a prescription for that.

by

by