How 'Heart Mama Life' Has Helped Me Embrace Being Vulnerable

I’ve spent the last 12 months standing on the sidelines watching my baby girl fiercely battle the congenital heart disease (CHD), Tetralogy of Fallot. At the tender age of 1 she has endured two open heart surgeries and two heart catheterizations… with her next surgical intervention already scheduled for February. She’s been hospitalized during her first year more than most adults will ever be in their lifetime. Having the strength and faith to hand her over to her surgeon time and time again never gets easier. On the contrary, it only gets harder as I watch her personality blossom, as I help her reach developmental milestones, as I fall deeper in love with her.

My first year as a “heart mama” has been hard; harder than I ever imagined it would be. I cry a lot… every day. I still struggle to cope with her CHD diagnosis and the fact that her prognosis seems to change after each surgical intervention. We no longer plan mini-getaways with our heart-healthy children, even weekend outings are scarce because our life revolves around managing her CHD: her daily medication schedule, the hospitalizations, the recovery and the interim of keeping her healthy until it’s time to hand her over again.

Don’t get me wrong, I wouldn’t have it any other way; with her is the only place I ever want to be. But it’s a lot to process, a lot to bear, a lot to accept and come to terms with. It’s so damn hard. I shuffle between smiling and beaming with pride while picking up my twin boys from preschool, to crying and slamming my fists into my steering wheel while sitting in the parking lot of the hospital… often on the same day. There’s no in between, the emotions are complex and so different and my heart is just trying to keep up with it all.

Somehow along the way, I have had to learn that vulnerability and strength go hand in hand when you are the parent of a child fighting a disease. I have gained strength by allowing myself to have those weak moments where I just had to let it all out to whoever was right there and willing to listen.

I vividly remember I was in the hospital cafeteria one day waiting, literally staring at my watch counting down the agonizing minutes and hours while my baby girl was in her first open-heart surgery at 1-week-old. I got up, walked to the restroom and then completely fell apart. I could barely breathe from crying so hard. I remember a woman coming up from behind me while I was standing at the sink sobbing… she placed her arm on my back and said, “It’s going to be OK. I am praying.”

I used to be embarrassed knowing I let a stranger in from time to time, but in retrospect I am so grateful to those people who were there to listen and offer me support — in the form of a hug from a stranger, two little shoulders to cry on from my twin boys and even a supportive shrug from a colleague who just so happened to catch me during a vulnerable moment. They allowed me to be vulnerable and helped me realize it was OK. Weakness doesn’t make me any less capable of being a great parent, it just makes me human. I now know first-hand that some seasons of life lend themselves to vulnerability, and right now it’s my turn.

I am grateful I am still able to marvel at my set of heart-healthy twin boys who have learned independence and compassion while witnessing their baby sister battle a complex heart disease.

I still worry about my baby girl’s heart function every single second. While she’s asleep at night, I can’t help but wonder if each breathe she takes will be her last.

I do my best every day to push past the fear and allow myself to look into her future. Our future, together as a family.

I still fail… all the time.

Sometimes fear still wins.

But I keep trying over, and over, and over again to be the best mama I can be, during the most vulnerable time of my life.