by Deirdre R.

Let her fly, they say. I want to. She will be fine, they say. I want to believe that too.

I wake up sometimes in a panic and know which thoughts are breaking through the surface, forcing me awake. Will we make it in time? Will her device work as it should? Will they know what to do and do it quickly? Will someone hold her hand until we get there?

Like many parents at this time of year, we are seeing our child off to college. She is heading to a great school that is more than four hours away. We could not be more proud of her, or more excited, as she embarks on this next chapter, but it is shadowed with much anxiety.

Our daughter lives with a life-threatening heart condition, diagnosed unexpectedly when she was fifteen. We have learned that we are not alone; there are other seemingly perfectly healthy, vibrant young adults—until abruptly, they are not. We have become part of an extended family we never knew existed; they are our heart warriors. Their lives changed by the diagnosis of a condition under the umbrella of Sudden Arrhythmic Death Syndrome (SADS). It’s a life-altering diagnosis; when it’s your child, it is heartbreaking. However, we have learned that receiving a diagnosis is a good thing. We are actually fortunate, as she gets to be protected and monitored under the care of such compassionate and driven medical professionals, from cardiologists to electrophysiologists to nurse practitioners to chronic pain specialists.

Our daughter suffered a cardiac arrest at the age of fifteen while undergoing a cardiac procedure. No safer place for her to be; we are aware of the irony. And she cheated death despite having had a heart rate of 283 on another occasion. She has an Internal Cardiac Defibrillator (ICD), and she takes several medications. Our daughter also lives with many restrictions to help slow the possible progression of her condition—which resembles that typically reserved for a 70-year-old.

One of her excellent doctors once said, “Our job is to save her life, but if her life is on the couch, that is not much of a life.” And so, she tests the boundaries while monitoring her heart rate; her doctors adjust her medications to try to make her less tired while still ensuring her heart rate won’t spike and cause her device to shock her back into rhythm. A possibility we all dread—and needless to say, her more than us. She tells us to chill, she’s got ‘it’—coaching us … her parents!

And we know she has ‘it’—because, at fifteen, she listened to her doctors tell her about the risk. She heard them talk of death, sudden cardiac arrest, disease progression, additional surgeries, and genetics. She has listened to the stories of carefree kids just like her but (devastatingly) who were not so fortunate. The heartbreak, the mere seconds that could have changed the tragic outcome. All of this at fifteen years of age, while her peers plow through life under a cloak of invincibility.

She knows she is fortunate—simply because of those who were not. I saw how each story of loss impacted her. The brave families we have been privileged to meet on this new journey—who hugged her, despite their loss. Witnessing that has been one of my life’s most humbling moments. Because of them, she is strong and resilient. I thank them all silently while simultaneously raging against the possibility that we could be on the other side of this story. I am not a ‘praying person’, but I often make an appeal: Not us—please not us.

And now, she heads off—like the rest of her peers—to face the world as an adult. She will advocate for herself, schedule her medical appointments, get her medications refilled, monitor her symptoms, and know when to go to the hospital. And we will step back and let her live her life—just like most college students. I say ‘most’ as this journey has opened our eyes to so much we took for granted—especially good health.

If you have traveled this journey, you have my admiration and respect. And if you are beginning the journey of letting go, I send you strength. As a parent who has a child with a SADS condition, we navigate finding a balance in embracing life; it has undoubtedly become more precious while ensuring her heart is protected. And now, as she prepares to leave, this will be something she will take on fully. She is ready. She has been for years; it’s a diagnosis that requires you to grow up quickly.

And so we will hug her fiercely and say: Go. Seize every moment. It’s what you deserve.

And we will gently hold our breath.