The journey from fear to freedom

Like carrying a weight that gets heavier by the day, living in a state of fear is unhealthy and damaging to both a person’s mental and physical health. But moving beyond a fear state is easier said than done. Being aware of fear is the first step to freedom – and I battle it everyday.

My daughter Emma was born almost 11 years ago to the day of this publication with an omphalocele – a birth defect that caused nearly all of her core organs to be born in a sac outside her body. While I had always been a nervous and anxious person, this diagnosis was the straw that broke the camel’s back – everything I had been running from throughout my life finally came to fruition. The worries, the what-ifs, the unknowns that I had perpetuated in my head since I was a young child – what if my parents die, what if this plane I’m in crashes, what if I fail this test – I was now faced with something real. A real worry, a real, true “what-if, worst-case” scenario playing out in real time. So the question became: How would I handle it? Fear had steered my life thus far; how would I handle it now?

And the answer was, not well. I was in a state of perpetual motion – constantly moving forward, but numb to it all. My 16-month-old at home added to the crushing weight – so my fear presented itself as shutting down, not processing anything but going through the motions. During the four months Emma was in the NICU, the seven surgeries before she was discharged, the tears didn’t come often. They came after, and they still come now.

And the truth is, no one knows how they will handle their child being hooked up to a ventilator until they are living it. Watching a 5-pound baby being given heavy doses of fentanyl to manage her pain – you can’t guess it, you can’t hypothesize it. I was living fight or flight – and my fight was fleeing. Shutting down was my coping mechanism; living day-to-day, conversation with doctor to conversation with doctor without allowing myself to process the bigger picture.

I still haven’t fully come to terms with what we went through as a family during the summer of 2012. Emma is healthy and thriving, with the only physical remnant of her time in the hospital a four-inch twisting scar that resembles a road map on her abdomen. When she flips and becomes airborne in her tumbling classes, for a fleeting moment I’m transported back to that NICU room in a Dallas hospital, holding my breath to make sure she lands safely.

I still cry, unable to process how we survived it and came out on the other side, and other families I know with the same diagnosis have buried their babies. Nearly 11 years later, it’s still a journey that I am consistently navigating. 

The Reaching Higher adult course has helped me identify my fear, and given me strategies to help work on managing it effectively. I know letting go of this fear will allow me to let go of this weight, this worry. But I also am aware it takes time. 

For me, it is not a quick fix from fear to freedom. It has been an 11-year journey that I cope with daily, but Reaching Higher continues to show me the tools to get there maybe – just maybe – a little bit quicker.