Last summer we sold our house to be closer to our 1-year-old daughter’s cardiologist, her surgical team and our family — essentially to everyone who helps us manage life with her congenital heart disease (CHD). The move proved to have a positive impact on my mental health and in my role as a heart mama to my baby girl, Nylah, who was born with a complex case of Tetralogy of Fallot (TOF).
A few months into getting settled was the day we participated in our first congenital heart walk in support of Nylah. It was tremendous to see more than 100 family members and friends come together to support my daughter, to tally up all of the money we fundraised for CHD research, to finally meet some other heart families in person who I had only ever connected with before online.
And then the day got even better…
We pulled into our driveway and saw our new neighbors (we had only ever said “hello” to them in passing before), but this time was different.
“How was your day?” My neighbor’s husband asked.
“Good. We just got back from the congenital heart walk, for my daughter.” My husband replied.
“Our daughter was born with a congenital heart disease, so we did the walk for her.” My husband continued.
“Really?” My neighbor said with a surprised look. “Our daughter has a congenital heart defect too. Let me go get my wife.”
I just so happened to be walking back out to the car to continue unloading our bags when my neighbor’s wife, Jen, came out at the same time.
“Wow. I cannot believe your daughter has it too….” I remember saying to her in the midst of a heart-warming hug and instant tears.
As they say, the rest was history…
In my mind I kept thinking to myself, “Here she is, a fellow heart mama in the flesh who knows my pains. And she’s right. Next. Door.”
It was as though in that instant, I knew… she understood all the complex range of emotions and feelings that had been swirling around my heart and in my mind all of this time, even before I said another word.
CHD’s are classified as a common birth defect, affecting 1 in 100 newborns each year in the United States, according to the Centers for Disease Control and Prevention. But although CHD’s are common, I had never met another mom in person who had it directly affect their life as it has mine; until I met Jen.
Being involved in the CHD community, I am grateful to have a great circle of support from other heart moms I connect with online, but there’s also something so powerful about sharing this unique, beautifully tragic bond with another mom in real everyday life.
She understands what a quick pre-surgery hug can do for a heart mom’s anxiety and nerves.
She understands why a small note and thoughtful gift, just for me, means so much.
She understands that we rarely get out of our home because we are either awaiting surgery or are recovering from surgery, so it’s amazing to have a “neighbor’s night in” watching the Grammys, drinking some wine, relaxing with our husbands and watching our two heart warriors play together.
She understands why organizing a fundraiser to help other families of medically-complex children — in the midst of our own struggles — can somehow make my heart a tad lighter and a bit fuller.
She understands why finding a friend for my daughter, who shares her same heart journey, instantaneously becomes a lifelong friendship.
She understands the tears I shed when I talk about a doctor appointment, a new medicine, an echocardiogram, a surgery, an unexpected illness.
So to my neighbor, Jen, incase I haven’t said it before, I want to tell you:
“I hate that you understand my heartache so clearly and vividly, yet at the same time I’m so thankful for your friendship. Thank you for being one of my dearest, most treasured friends.”
Here’s the thing about being a heart mom — it’s not something you can truly every plan for or even expect. But when you find yourself in this club, it’s so comforting when you meet another mom who just instantly gets it all.
It’s been so good for my soul to have someone so close, literally about 20 steps away, from my front door to hers… to share in everything CHD. We have shed tears together, researched together, celebrated together and we haven’t even known each other for quite one year.
While I wish my dear friend and her daughter never had to go through this life with a CHD, I’m so thankful to God, or the universe or to whatever it was that was put us next door to each other to help one another, and our daughters, along their journeys.