This is what it’s like to be a parent with a severe heart condition

On a recent trip to the Grand Canyon with my husband and son, I looked out over the landscape at the sheer size of one of the seven natural wonders of the world. In front of me was a vast canyon formed millions of years ago when the Colorado River carved through layers of volcanic rock and sediment to create this beautiful vista. I marveled at how water could form something so stunning.

Thinking about that great natural power reminded me of motherhood: how, as mothers, we possess an innate drive to go to the ends of the earth for our children. For me, this included navigating the perils of a failing heart.

My motherhood journey can best be described as unexpected. Years before I welcomed my son, I was diagnosed with non-Hodgkin’s lymphoma, a type of cancer that impacts more than 74,000 people every year. Thankfully I received treatment and the cancer went away; however, the chemotherapy weakened my heart to the point that I was experiencing the early stages of heart failure. While I took medication to mitigate the symptoms, my condition was progressing further and further into heart failure.

Not long after, I began to feel very sick and was worried my cancer had returned, but shockingly, it turned out I was pregnant. I was stunned at this development, as I had believed my cancer treatment would make it impossible for me to get pregnant, but I enjoyed a happily uneventful pregnancy and gave birth to a healthy baby boy.

This new phase of motherhood was interrupted when my health issues returned shortly after my pregnancy. Despite feeling blessed with my son, I was extremely weak and was not recovering, even after several weeks had passed. I made an appointment with a cardiologist who immediately sent me to the hospital, where I was admitted for advanced heart failure and wouldn’t leave for two months. I knew I was facing a long road to recovery.

Being a parent with a severe heart condition was a painful reality to accept. My heart was no longer strong enough to pump blood on its own. I had already been away from my son for several months and was continuing to get weaker. My thoughts were not just about me, but about this young life I had brought into the world just a few months before. I worried about missing precious moments in his life. Even as I tried to stay positive, my mind was focused on all the things I wouldn’t be able to do with my son as he grew up.

My cardiologist and I knew we had to act fast. I received an Abbott heart pump to support my heart by circulating blood throughout my body. Recovery from this procedure was tough, but I gradually started gaining my strength back. Those first few months were difficult, but there came a moment that changed my perspective. I still think about it to this day.

When my husband visited me in the hospital during my recovery, I noticed our son—then 10 months old—standing up to take his first steps, one of those milestones I was afraid of missing. At that moment, I felt something shift inside me. We became even more connected, not just as mother and son, but as two people determined to develop the skills we need for life. I realized that we were learning to walk together and that I could find the strength to pull myself up and move forward again.

For every step on my road to recovery, my son has been there beside me. For example, the battery for my heart pump needs to be changed daily. As a young boy, he would hear the noise signaling that it was time to change, then run and get the battery from the charger for me.

Today, as a 12-year-old, he knows even more about my device and helps me change the dressings at the site of the wires. I hope that this experience has taught him perseverance in the face of adversity, and to understand that people may be dealing with challenges that others can’t always see.

Just as the Colorado River shaped the Grand Canyon, heart failure has shaped my life, but I refuse to let my diagnosis keep me from living the life I want to live or being there for my son. I was there when he learned how to walk, when he learned how to ride a bike and when he had his first day of school. I’m planning to be there when he stars in his first school play, when he goes to prom and when he graduates from high school.

It’s been a long road, but I’ve learned to greet the ups, downs and challenges of each new day knowing that nothing—not even a diagnosis like heart failure—will keep this mother from moving forward.