A Gift for Mom! 🤍

I only got one paragraph in to the New York Times study on the effect of rudeness on a doctor’s performance in the NICU  before the mom guilt slapped me in the face and I shut down. There were too many flashbacks of too many slips of the tongue. Here’s what sent me spiraling: “The neonatal intensive care unit is a place full of tiny, vulnerable and critically ill infants; fearful and anxious parents; and busy doctors and nurses working to save lives. But if a parent of a sick baby says something rude to the medical staff, the quality of care might suffer.”

My son was born early. Ten weeks early. And with a rare genetic disorder. And with significant brain damage. Nothing about our experience went according to protocol. I remember the backache that turned into contractions that lead to an emergency delivery. I remember the sound of my son, the one cry, before he was intubated. I would not hear him again for weeks. I remember the monitors sirening with low oxygen levels and apnea spells. I remember the moments he was grabbed from my arms when he turned blue and limp. I felt like neither mother nor nurse. I was an observer.

And yet, I did what I could. I showed up for every single care time so I could take his temperature under his tiny arm, a twig wrapped in parchment, so delicate I was afraid each touch would bruise. I changed his diaper, a tissue really, and placed my hands on his chest, his forehead, the bottoms of his feet so he could feel me surrounding him as best I could. And then I would go home and scream and cry and kick the porch rails and sit in his empty room pumping breast milk to bring back in three hours. Breast milk that would have to be frozen because he wasn’t up to it yet.

Sometimes I did not save the anger for home. Sometimes it was too much. Because, if a nurse was ignoring him while his oxygen dipped, I couldn’t and wouldn’t keep my mouth shut. And on the day, thirty days into our stay, that they informed me he had significant damage in all four quadrants of his brain, I did not speak at all. I walked out on the head of the NICU, the big man himself while he was mid-sentence. If that’s not rude, I don’t know what is.

If we’re being honest here, sometimes it wasn’t the big stuff that brought it out in me. If I showed up bright and early with my milk in my little cooler and new baby clothes ready to put in his drawer and saw we’d drawn the short straw and gotten the nurse that was too rough with him, I let her see me roll my eyes. I chopped my sentences down to fragments. There was no small talk from me that shift. And if a new resident rounded and asked me to repeat my son’s full medical history, a story I’d felt I’d been telling for eons, I said no. Just no. I was not the cooperative mother. I was not the team player. I didn’t have it in me.

So, when I read in the article that “It wasn’t anything horrible,” Dr. Bamberger said. “They weren’t going ballistic, they weren’t violent. They just said things that weren’t so pleasant for doctors to hear,” I felt the gut-churning stress in hindsight. Had I somehow sabotaged my son’s care? Had I in fact done more harm than good? Had even my “mild unpleasantness” played a part in “performance and teamwork [that] deteriorated to the point where diagnostic skills, procedural skills and team communication were impaired and medical errors were more likely”?

Here’s where I landed after much prayer and cuddles on the couch with my now four-year-old boy who blows kisses and gives hugs that last longer than you would think possible: I’m not Mother Teresa and nobody expects me to be. I’m not going to get it right every step of the way. There’s a certain grace you have to extend to yourself in motherhood if you’re going to keep your head above water. If I analyze the ripple effect of every decision or emotion I’ve had since picking up this mothering gig, then I’m going to spin out of control. The NICU is the most intense environment a mother can find herself in. Doctors know this. Nurses know this. Like soldiers in battle, they have been trained for the likes of me. I do regret my incidental rudeness. But I know they don’t hold it against me and neither does my son. Because the take away, from all of this, is that we’re not robots, thank heavens. None of us is immune to emotion. And if that means struggling with the natural clashes of personality, preference, and protocol then so be it. I want my son living in a world that struggles with rudeness and fumbles with grace because it means we’re still trying, as best we can, to live lives worth something.

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Jamie Sumner

Jamie Sumner is the author of the middle-grade novel, Roll with It. Her second and third middle-grade novels with Atheneum Books for Young Readers will be coming out in 2020 and 2021. She is also the author of the nonfiction book on motherhood, Unboundand the forthcoming bookEat, Sleep, Save the Worldfor parents of children with special needs. She is also mom to a son with cerebral palsy and she writes and speaks about disability in literature. She loves stories that celebrate the grit and beauty in all kids. She and her family live in Nashville, Tennessee. Connect with her at Jamie-Sumner.com   

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