To Cry or Not to Cry, That Is the Question
Being a caregiver for a child with pulmonary hypertension (PH) can wreak havoc on one’s emotions on any given day. But during the holiday season, the heartache and stress can make even the strongest person teeter on the edge of an emotional collapse.
It begs the question, how much fear and sadness are too much to show in front of your child?
A nurse reprimanded me the first time I broke down in front of my son, Cullen. The experience was embarrassing, hurtful, and an infuriatingly enormous influence on how and when I expressed my feelings from that day forward.
Cullen was 8, just diagnosed with PH, and scheduled for a central line placement to begin the treatment of Flolan (epoprostenol GM). He was also going through transplant evaluation, which involved long days at the hospital enduring many scary tests, procedures, and blood draws.
Patient and caregiver at their breaking point
As we neared the end of two long weeks, we were all exhausted and so were Cullen’s veins. But he needed an IV injection for a critical scan, and it appeared his foot was the only option left to place it. Little Cullen, who had braved so much, had reached his breaking point. The medical staff asked me to help hold him down as he screamed and begged them not to do it.
Cullen locked eyes with me and yelled, “Mom, no, make them stop!” That’s when I broke down and cried. A nurse whipped her head in my direction and firmly said that I was not helping, and if I couldn’t control my emotions I needed to leave the room.
I pressed my back to the wall and let my husband take over the effort to subdue Cullen. I wanted to lash out at the nurse and ask her how she could be so cold. Didn’t she know all of this was hard on me, too? But I stood silent from fatigue and wrestled with a gnawing feeling that somewhere in her harsh approach there was a valuable lesson I needed to consider. And like many important lessons, it repeated many, many times over the years.
The memory of it was the glue that held my emotions together each time I watched Cullen prepped for a procedure, including a heart and double-lung transplant when he was 14. I wouldn’t shed a tear until his eyes became vacant from anesthesia and he was unaware of his surroundings.
A week post-transplant, Cullen collapsed in his bed and went into a frightening seizure. I don’t know who was caring for other patients because an unbelievable number of doctors and nurses rushed into his room. It was horrible to witness, and I was terrified Cullen was on the brink of a stroke. Thank God, he wasn’t. His dad remained by Cullen’s side, but I kept approaching and retreating as I tried to control my sobbing. A kind nurse noticed my struggle, took hold of my hand, and gently whispered, “I promise he won’t remember any of this.” Her compassion helped me understand my tears were totally acceptable in this situation, and through them, I could still be there for my son.
Should caregivers show emotions?
Cullen is now 22 and I recently asked him, “As an adult who went through a great deal of childhood trauma, how much emotion do you think is acceptable for parents to express in front of their child?”
Although he recognizes that the nurse who basically told me to get a grip could have done so in a more empathetic manner, he defends her reasoning as being on point. He knew that if he could make me feel as frightened and emotional as he was, I might put an end to the IV placement, no matter its importance. If it weren’t for the nurse, I probably would have given into his appeals hook, line and sinker.
Cullen believes a child’s emotions are very much influenced by those of his parents. If mom or dad appear worried and emotional, their child might feel validation for his own fear, making him even more inconsolable. Being surrounded by high emotions could make an otherwise calm child worry.
What are the options? Cullen suggests methods that he remembers were successful for his dad and me. Step out of the room for a moment to regain your composure if you’re feeling emotional. Or if you don’t want to leave the room, close your eyes and focus on your breathing, counting down from 10. Switch places with your partner or another caregiver until you feel ready to sit bedside again.
Cullen acknowledges parents are human and that stifling emotions can be unhealthy. But he is right: Parents and caregivers should be aware that how we deal with our sadness and fear in front of our child can significantly influence how they deal with their own.
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Note: Pulmonary Hypertension News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Hypertension News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary hypertension.
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