Leighann Marquiss’ son, Ryan, was born in February 2009 with a serious congenital heart defect known as Hypoplastic Right Heart Syndrome, and a rare condition where his heart developed outside his body. Find out how the family’s journey helped Leighann learn to live in the moment and Ryan to thrive.
When I found out at a 12-week ultrasound that my third child had a severe and life-threatening heart defect, I was devastated. This was NOT in the plan. I never expected having to make life or death decisions for my unborn child or having a baby with a non-functioning right ventricle and Ectopia cordis, meaning his heart was beating outside of his body.
This meant commuting to his bedside for the greater part of a year, watching him endure more than a dozen procedures and surgeries, watching him almost die on several occasions, finally bringing him home only to drag around medical equipment and spend hours with occupational and physical therapists. None of these things were in my plan.
I learned a lot about planning in 2009 and a lot about not planning. You see, we read and research and formulate plans for every area of our life thinking we can control outcomes, but one thing we can’t prevent through planning is congenital heart disease. Ryan’s congenital heart disease confirmed for me that control is an illusion. The only way to find peace is to open our closed fist and release our perfectly laid plans to accept the life we’ve been given.Accepting a CHD Diagnosis
For us, that meant consulting with pediatric specialists at Children’s National Health System. There, they formulated a comprehensive care plan to care for our son.
Once we accepted we couldn’t change our child’s diagnosis, we were able to move forward. Living in the Cardiac Intensive Care Unit with my son taught me that plans are fluid. They change day-to-day, moment-to-moment, and sometimes in a split second.
Ryan is now a thriving six-year-old who lives a typical life. He loves Teenage Mutant Ninja Turtles, pirates, playing with his friends and sisters, and watching baseball. He’s an extremely happy kid with an infectious smile.Learning to Live in the Moment
Releasing our plans doesn’t mean everything turns out perfectly. Nor does it make the path easy. What it does is free up the mental energy we’re using to fight our reality for more important things like living in the moment.
Accepting that I can’t control the big things, like my son having a congenital heart defect, has also helped me accept I can’t control things in my healthy children’s lives. It released me from the fear of failure and enabled me to just be their mom; to focus on relating with them and helping them grow into responsible individuals, through life’s ups and downs. It helped me understand that the need to control is really about fear: fear of failure, fear of inadequacy, fear of the unknown. Living without fear - now that IS in the plan!
Leighann Marquiss is an author, blogger, and speaker who uses her experiences to bring hope to others. She’s the author of Showing Heart: The True Story of How One Boy Defied the Odds, You Are Not Alone: An Insider’s Guide to Facing Prenatal Diagnosis, and Looking Toward the Cross: a 40-day Easter Journey for Families. She and her husband, Henry, have four children, and live in Western Pennsylvania. She can be found regularly at www.leighannmarquiss.com.