This is a blog for my daughter Scarlett. She was born with a complex congenital heart defect known as Tetralogy of Fallot with Pulmonary Atresia. She is my little hero.

Tuesday, September 29, 2009

Heart Mom

Ever since April 2009 when the Scott and Laura Eller Congenital Heart Center at St. Joseph's Hospital held their first meeting of fellow heart parents in what is called the "Family Heart Council", I have considered myself a "Heart Mom". On that evening, I was introduced to about 15 other heart moms. Before Scarlett was born, I had the opportunity to meet one fellow heart mom (Molly C) whose son also has Tetralogy of Fallot (but not  TOF with Pulmonary Atresia, like Scarlett). I felt so lucky to be able to meet other heart moms who were going through what I was going through. But, it was also an unexpectedly sad meeting for me.

I drove home from that April meeting crying the entire way. Why? Because I met 3 out of 15 heart mommies (Brooke, Daradee and Heidi A), who have lost their children to complications from their child's CHD. I guess I just tried so hard to focus on the positive (all the CHD survivors), I forgot to think about the negative (the CHD angels). That night, I heard the phrase "she/he earned her angel's wings" for the first time. The word "angel" will never be the same to me has a whole new meaning.

But on that night in April I also met 12 heart moms who are struggling heart moms like me. It is a curious thing... to immediately bond with a complete stranger. Because you can completely understand each other's anxiety, sorrow, stress, joy, and gratitude to have your CHD child in your life.  Only another heart mom understands the ups and downs of a pulse-ox machine, feeding tubes, oxygen cannulas, fortifying breastmilk, administering daily heart medications, echocardiograms, hospital stays, etc... Through the Heart Family Council, I have made friends for life. No one understands what it is like to go through what you're going through like a fellow heart mom (sorry all u heart dads out there).

So, to celebrate my new title (as of February 17) of Heart Mom, last week I ordered a personalized license plate from the Dept of Motor Vehicles. It will read: "HRTMOM1", and I will proudly display it on the back of my Jeep. I'll post pics when it arrives. :)


  1. I love this post!! I feel the same way.. it's amazing how you can bond so much with other moms.. I look so forward to those meetings becasue I love knowing that I am in a room surrounded by others who just 'get it' and are living and struggling with similar things.
    We are praying for you this week.. I tried to write you a comment last week but my computer froze up.. I know Scarlett will do just fine.. She will do great. I know however, how hard it is and I'll be praying and thinking of you during those hard days..