When I approached my new pal Karol about sharing the journey of her son, Hayes, on the blog during Heart Month, she graciously agreed. Hayes’ zest for life and infectious smile is already charming hearts everywhere, which makes his story all the more poignant. But when we dug deeper in conversation around her son’s diagnosis, Karol revealed how CHD has changed her as a mother and wife, and what she wished people knew to say and do when someone they care about receives life-altering news. It’s a lesson from which we can all learn. Karol, thank you for joining me on The Thersday Series, for being brave and honest, and for sharing Hayes with us.
February is Heart Month, raising awareness about cardiovascular disease and heart defects. Tell me why that resonates with you family.
Our son, Hayes, was born with a congenital heart defect (CHD) called Coarchtation of the Aorta. His diagnosis opened us up to an entire community of “heart families” living in Charlottesville and seeking care at UVA Children’s Hospital. Our dear friends, the Tamberrinos, walked us through that experience—from diagnosis and surgery through recovery. My husband Dave and I have now done the same for other families after receiving the same shocking news—that their child has a CHD. For me, Heart Month is about shining a light on the brave kids who have special hearts, honoring the “heart angels” who are no longer with us, and raising much-needed funds that could bring about life-changing breakthroughs for even the sickest patients.
How has Hayes’ health complications changed your course as a mother?
Hayes is our middle child. With our first, Lila, I wanted to be the perfect mom. Well, at least my definition of the perfect mom. I read all the books, calculated feeding and sleep schedules, planned ahead of time, and sought order in a time of sleepless chaos. I found solace in creating that order.
When I became pregnant with Hayes, it was apparent from the first ultrasound that this would not be a typical pregnancy. We had many questions without definitive answers. I had to make a conscious decision to go with my gut, and my gut told me that this child was going to be okay. I did not know what that meant at the time, but I knew I would have to relinquish my Type A personality. (Well, at least a little bit.) There was so much I did not have control over during my pregnancy with Hayes and I just had to lean into that instead of resisting it. That shift alone changed my course as a mother. I learned to be more flexible. I also learned to trust my mother’s instinct.
Every child is special, but Hayes is memorable because he truly spreads joy wherever he goes. He loves to talk to anyone who will listen, offers a hug to anyone who is willing, and always has a story to tell. He loves attention from adults, so he never complains about his doctor’s visits. He charms the doctors, nurses, staff, receptionists, parking attendants, cafeteria staff, other patients. He adores his “big sissy” and looks after his little brother. He has a crazy sweet tooth and a vivid imagination. He sleeps next to me and wakes me up at 6:15am every morning to tell me about his dreams. I won’t ever take that for granted.
Stress over a child with unique health needs is so incredibly compounded in a marriage. How do you and your husband remain united?
Dave and I would be lying if we said this was easy. But we’ve always complimented one another’s personality—think yin and yang. When Dave is stressed or anxious, I bring the calm. When I’m nervous, Dave balances that out.
My husband has a medical background. When I was pregnant with Hayes, Dave was in the last semester of his bachelor’s of nursing program and working on the neurosurgery unit at UVA Medical Center. There was no part of his life that wasn’t focused on health care and complex disease processes. It was a relentless part of his day shift, classes, and OBGYN appointments with me. When Hayes was born, Dave was able to take the lead in creating a plan for our new son’s health care. Some nights—then and now—we sit at the kitchen island after the kids are asleep and talk it out, everything that worries us and all the good, too.
What piece of advice would you give to readers who learn someone in their life has just received life-altering news about their child?
Two words: show up. Check in regularly. Offer to drop off a bag of groceries or pick up the other kids from school. Tell them you are lifting them up and praying for their strength. Know that sometimes they want to talk about it and sometimes they would rather talk about anything else. Don’t say “let me know if I can help.” Just help. If you bring gifts for one child, remember the others, too. Being the sibling of a child with special medical needs can feel lonely.
When Hayes was diagnosed, Dave and I were not prepared for the news. I remember the room was full of people—doctors, medical students, nurses—and the three of us. I paused the conversation to text our friend Lauri, also a heart mom and the leader of the Mended Little Hearts support group, and she texted me back, “I’m in the car on my way.” She didn’t hesitate for a second.
It takes a special kind of person to run towards the people that need help, rather than freeze or turn away.
People showed up for us. My husband’s colleagues quickly donated PTO so Dave could spend time with Hayes in the hospital. People contributed to cafeteria and gift shop gift cards, so we didn’t have to go far to pick up anything we needed. My mom and sister totally held down the fort with the other kiddos, which wasn’t easy.
One final note: Moms naturally have more support mechanisms in place. I had no shortage of places and people in whom to turn. Know that the father may be seeking support, too. So, when you text a friend to ask how she is, encourage your spouse to reach out to the dad, too.
Who keeps you company on your journey?
My husband, my sister, my mom, and a handful of very dear friends. You know who you are.