Don’t be Daunted

Don’t be daunted. It’s a proclamation. It’s so easy to get swallowed up in the enormity of everything going on in the world. Then add whatever we’re experiencing closer to home in our own personal lives and it’s a lot. As in a lot, a lot. A medical visit for my son this spring helped me take a step back, release some of that angst, and as Poet Emily Dickinson so aptly put it … dwell in possibility.

In early March I took my older son Francisco to his annual cardiology appointment. Multiply disabled since birth, it’s one of his yearly check-ins and it’s obviously the most important. Other organs play vital roles, but none as integral to the functioning of your body as your heart and your brain. Francisco has had open heart surgery twice, the first time as an infant and again when he was 9, almost 10 years old. He was born in congestive heart failure because of two holes in his heart. Ventricular septal defects to be exact. As a result, he’s spent most of his twenty-five years living in mild heart failure. Other times it’s been worse than that.

We learned about 10 years ago he also has a rare cardiomyopathy. The trajectory for this is that the heart function of patients will decline over time. It sounds disconcerting, right? It does; it is. But it’s something we’ve had to get accustomed to. We don’t borrow trouble and imagine worst case scenarios. Plus, Francisco has this amazing ability to overcome odds. At times things have been bleak but that boy has the most quiet resilient determination. I’ve learned to put my faith in him. It’s learned behavior as I’m more innately wired to “freak the fuck out”.

For years Francisco’s regimen has consisted of taking a couple of heart medications daily. His heart function is considered medically managed, and he has no restrictions for physical activity. Since his days in the NICU, our mantra has always been “not worse is good”. We use it to this day, and this steely resolve helps manage our expectations. Your nervous system can’t withstand anxiety 24/7 worrying about what ifs. It’s not a functional way to live.

Each cardiology visit begins with the familiar routine of checking his height and weight before getting his EKG and echocardiogram. After that we go to another exam room and await the cardiologist. She makes her way in after reviewing the findings of his diagnostic exams. The doctor came in, greeted us, and gave us her assessment.

I remember precisely how she started, “I wanted to let you know that his heart function …” There was something about the cadence, the deliberate way she was allowing space between each word, that had me hanging on every syllable. I was internally bracing myself for what was coming next. Then she finished her sentence, “… has actually improved. His heart function is at the low end of normal.” Wait, what? I was stunned. What surprisingly good news! Not just good news, this was great news! For the first time his heart function is in the normal range.

At no time during the many years of conversations with doctors about Francisco’s specific type of cardiomyopathy, left ventricular non-compaction disorder (LVNC), has there been discussion about heart function improvement. There is no cure for LVNC. Accordingly, we believed his heart function improving was not in the realm of possibility. Thus, the “not worse is good” strategy makes a lot of sense.

I excitedly shared this great news with close family. Still on a high weeks later, I thought about the larger meaning of it all. Francisco wasn’t restricted by the prognosis, he defied odds. I realized somewhere along the way, this “not worse is good” mantra used to cope with my son’s heart condition had crept into my personal life. It was a rationale applied toward the aim of staying safe. Unfortunate byproducts of this mindset in everyday life are staying risk averse, playing small, and not swinging big. Being content with the status quo can be limiting. And now I realized, I was using it professionally to stay in a role I was no longer happy with.

I had been wrestling with the decision to leave my job for quite some time before I actually pulled the trigger. Restructure, restructure, and restructure again distanced me from work that made my heart sing. That much I knew, but it was unclear as to what path I should take moving forward. Looking at the enormity of it all was daunting. So is my son’s cardiomyopathy but it doesn’t stop him from meeting challenges and finding joy in his daily life.

I understand this thought pattern of mine may not sound linear. I can make connections between seemingly incongruent topics. It may be unconventional at times, but I also think it’s a superpower of mine. I can’t unsee or unknow lessons that resonate with my gut. What if, what if the calculated risk I should take is betting on myself? There’s a 35-year body of work that’s evidence of what I can produce. It didn’t happen overnight, it was a process, but a path forward began to reveal itself. I now had the courage and confidence to take the creative reins of my own small business.

A few years ago, I gave my son Mateo and my niece Laila advice when they went off to college. “The world is your oyster”, I told them. Of course it is. They’re young, they’re smart, and they have their whole lives ahead of them. I’m no longer young but I am smart and have the rest of my life ahead of me. Despite that, I am excited about what comes next. So much so, the other day when I was thinking about possibilities, I whispered to myself, “the world is your oyster.”