As a nurse working in the Pediatric ICU of the local hospital, I saw a lot of suffering. I felt called to work in this capacity, and profession, by a Divine voice that invited me to pay back the love, support and nursing expertise that had been present to us throughout Alexis’ short life. I’d left corporate America to be present to children and parents who were going through challenges similar to what I’d survived.
I learned many important lessons in the PICU that I would carry with me long after I’d moved out of the bedside nursing profession. Some of them had nothing to do with illness or critical care. Some of them were so profound that I draw on them even now.
Children see the world through the faces of their mothers, fathers and primary care givers. These can be grandparents, nannies, coaches, or teachers. Look at any child, and you will find (hopefully) at least one adult who lets them know what is happening in the world, whether it is good or bad, and whether THEY are “good or bad” by the expression on their face. No words required. A simple gaze is all they need to feel what is not being said. “You are safe, and it will be ok” or “This is a tragedy, you don’t have what it takes to survive.”
We treated many newly diagnosed children with Type One Diabetes Mellitus (also known as Insulin Dependent Diabetes.) Critically ill children, in comas, with astronomical blood glucose levels or worse, brain herniation, would come to the unit for stabilization and health restoration. This was not always possible. Sometimes the damage was too extreme.
But when the child survived, we had to begin the difficult process of educating first the parents, then the patients, on the diagnosis and what it meant for their lives. It was an emotional time, as those who survived were still grasping at the totality of what had happened, and now tried to imagine what life would look like with needles, glucose monitors and the endless challenges of having a pancreas that didn’t function properly.
The life of a newly diagnosed IDDM pediatric patient was literally dependent on the spirit of the caregiver who was there to be responsible for the child. They’d have to learn a medical world they knew nothing about. They’d have to grieve the permanence of being different. They’d have to find a way to advocate, treat and protect their son or daughter. You can imagine the overwhelm of competing feelings and fears.
Yet, there was not much time for that. With a background in psychology and enough experience in the PICU, I knew I had only a short window of time to convey to those caregivers, whether they were moms or not, that they had an important mandate ahead. Their child’s’ life literally depended on them rising to the challenge.
When supporting them, I would say to the parents and caregivers “Go home, take a hot shower, cry, scream, and let it all out. Find talk with someone you trust, someone you can vent to, pray, meditate and be human.” Then come back tomorrow ready to embrace this new normal with enthusiasm and acceptance. When your child wakes up, and sees your face, they will be looking for signs that this is either a tragedy, or that it will be ok. You need to make it ok. Or they don’t stand a chance.
The responses I got varied to the same degree that the patients were different. Many parents follow the “Do what I say, not what I do” methodology of parenting. But we know better. We know that “What we do speaks so loudly you can’t hear my words.” And that knowledge, is enough to arm these parents, and us with the simple strategy of letting our faces do the talking.
“If you make this ok, it will be ok for your child. If you make this a prison, or death sentence, it will be just that.” I tried to make it as clear as I could, that the patient would take cues from their faces, not their words.
I wasn’t talking “out of school.” My own daughter had been diagnosed with IDDM at 8 months old. I’d received this priceless advice when I was receiving my own training as a mom, and before I came a nurse. I’d practiced with the needle on the orange. I’d read the literature and watched the educational videos. I’d binged on Easter candy that year, thinking that future Easter’s wouldn’t include candy and we’d need to find an alternative way to enjoy a child’s Easter basket.
Of course, I didn’t get the chance to live that out since Alexis died before I got to try. But I didn’t share that with patients and families. I shared only the confidence and conviction that the look on a mother’s face is all that a child needs to size up the situation and create their own narratives about a given circumstance. And this circumstance was too important not to share what I knew.
The way we see the world as parents, and the looks on our faces are not limited to impacting our children only as they relate to illness and medical diagnoses. Our children rely on our expressions to interpret all of the world, as safe, or not, until they are able to construct their own educated impressions. This responsibility, this precious duty cannot be overstated. The very first mirror our children look into, is not on the wall. It’s in our eyes. It’s in our smiles. Or it’s in our scouls. It’s in our frowns.
Let’s be as mindful as we can, to let those who see the world through our faces have eyes into the best the world has to offer. And save our disappointments, fears, anger and judgment for someone else, someone we trust, and someone who can generate their own conclusions about whether the world is safe, or not. There is too much at stake to disregard this power, regardless if we are aware we have it.