Last weekend, Efrem asked if we could go see the 4th of July fireworks. His class had been learning about Independence Day at daycare all week, and fireworks sounded really cool to his toddler-self – bright colors and big booms. We got to see a few cracklers and boomers before he asked to go home (too scary). That’s all we expect from a now three-year-old.
Firsts like this naturally cause us to reflect on our journey with Efrem. It’s nearing two and a half years since Efrem became the victim of Abusive Head Trauma (AHT), and part of every new experience, like watching fireworks, is the fact that we almost didn’t have the opportunity.
The day he was admitted into the pediatric intensive care unit our emotions and responses ran wild – fear, sadness, confusion, denial, anger, anxiety, and the intent, singular focus on his wellbeing. These initial responses have lingered (as I suspect they do with all parents of AHT victims). Some emotions do transform and take on new meaning, like the way denial of the suspect’s criminal wrongdoing eventually evolves into betrayal. Others fade into the background only to resurface when it chooses, like when sadness catches you off-guard while watching news broadcasts about child abuse.
Perhaps the greatest and cruelest of all of these emotions is fear: the fear of what the future might hold. Every parent wants their child to succeed, to try their hardest, and to simply have fun. I will never forget how Efrem’s physician responded to our question: What if he likes football or hockey? Can he play when he’s older? Or do we risk putting him at even greater risk for further injury? She replied that as a doctor she couldn’t tell us whether he’ll be OK or not. But as a parent she wouldn’t take the chance.
Six months after the AHT diagnosis, Efrem’s last MRI showed that the bleeding in his brain had subsided. Soon we also got confirmation from his ophthalmologist that there is no permanent damage to either eye; the hemorrhages had cleared.
Despite this good news, fear never fades. It never transforms. Fear is always fear. Even as he continues to meet all of his regular developmental milestones, we will always follow up with the questions: What if _____ happens? What if we miss a sign? What about five or ten years from now?
Although it doesn’t relate directly to cases of infant AHT victims, articles like this, “People With Brain Injuries Heal Faster If They Get Up And Get Moving,” from NPR give rise to a bit of hope. Not the form of hope that compromises our fears. Instead it’s a small sense of encouragement that our understanding of the brain is progressing.
Articles like this remind me of when our then seven-month-old AHT victim played with toys again in his hospital room, when he helped us page through his favorite books that we brought from home, and when he finally laughed the most beautiful laugh three days into his stay in the PICU.
I can only imagine all of his neurons sparking into being again. His movements and awakenings were beautiful on the outside, as they were probably the most magnificent fireworks inside.