Michelle’s Essay

Having a child with a congenital heart defect presented both financial and emotional challenges. My son was just leaving the hospital when my six weeks of maternity leave were up. I asked to extend my maternity leave and was fired instead. The medical bills from two back-to-back heart surgeries piled up. It took us four years to get out from under that debt. We knew he would need a third surgery but we didn’t know exactly when he would need it. We spent a decade waiting for the other shoe to drop, wondering at each cardiology appointment whether this would be the time a surgical consult would be requested. That worry and anxiety took a toll. My son just turned eighteen and will transition this year from a pediatric cardiologist to an adult cardiologist. As I look back on the experience of raising a heart warrior, the challenges aren’t what stand out. These are my most salient memories:

My son was just seven days old when he had his first heart surgery. The hospital had a voucher program for breastfeeding mothers. Each voucher was worth $5 of food from the cafeteria. I tried to use the voucher for an apple and a carton of chocolate milk. The cashier insisted I take care of myself and refused to check me out until I came back with $5 worth of food. I returned to the PICU, where was son was placed while he was waiting for his surgery. From what I couldn’t help overhearing, his roommate had a brain tumor. The young girl’s mother bought a stuffed lamb from the gift shop and gave it to my newborn. I was so overwhelmed at the time, all I said was “thank you,” but I was blown away by this act of kindness from a stranger who was in the middle of her own horrible ordeal.

My son was ten when he underwent his most recent heart surgery. The mother of one of my son’s friends drove all over town collecting signatures from all of his friends on a get well card for him. I spent a night at the Ronald McDonald House. Traffic was especially bad that day and what should have been an hour trip took five hours. Volunteers from FedEx were serving dinner just as I arrived and I decided to grab a cheeseburger before heading to the hospital. Just as I sat down to eat, my husband texted me to tell me that our son was healing faster than his doctors expected and would be released the next day. I started uncontrollably sobbing over my plate. Some of the volunteers tried to console me, a challenging task because I had no idea why I was crying. I had just gotten great news. I know now that this is a common way to release pent-up stress following trauma, but it made no sense to me at the time.

As I reflect on our journey, what I remember most is the kindness.