Thursday, February 24, 2011


I've always felt like a sympathetic individual, which I admire about myself. But, since Zoe's diagnosis, birth and repeated recoveries, I've become an empathetic individual.

Empathy is the ability to understand another person’s circumstances, point of view, thoughts, and feelings. When experiencing empathy, you are able to understand someone else’s internal experiences.

This past weekend, my heart community suffered a significant loss - the loss of fellow HLHS warrior, Travis DiCarlo. I've come to know the DiCarlos well over the past year. Travis' mom, Nicole, is one of my Sisters by Heart.

When I heard the horrendous news of Travis' struggles post-op, him coding and two-hour resucitation efforts, I became overwhelmed with a cyclical emotional rollercoaster - shock, anger, sadness, fear, denial. In that moment, I happened to be surrounded (thank god) by two fellow heart moms that I met in Philadelphia. For us to be together in that moment was a gift. We cried. We sat silent. We argued. We expressed the range of emotions we all felt in that moment. We snorkeled in the vast and calm ocean and remembered Travis.

My heart aches for Nicole and Roger. My heart aches for Addison, Travis' 2 month old sister. This is a photo Nicole and Roger shared, a photo taken just before Trav's open heart surgery. What an amazing family. What an amazing boy.

I empathize with Nicole. I feel her pain, as if it were my own. Being a member of this heart family is, like everything else, a rollercoaster. My heart family represents my worst fears, and at the same time, my greatest treasure. Without them, I would have no one who truly understands how I feel on a day-to-day basis.

I was asked the other day by a friend if there was "light at the end of the tunnel?" I was not sure how to answer this question. I suppose it depends on your definition of "light." Zoe's heart will never be whole. I will always worry about her heart growing tired. But, yes, I do believe there is light. Will I ever be able to grasp it? I hope so.

I think the better question is: Is there an end to this tunnel? Unfortunately, this tunnel is long. This tunnel is exhausting.

We heart families live in a world of unknowns. Medicine is evolving. Our children would not have survived two decades ago. We walk in this tunnel together, hoping for the best - but the honest to god's truth is, most of us expect the worst.

I think the best way to survive in this tunnel is to break down some of the bricks and allow light to come in, as often as possible. Somedays, it is harder than others.

Travis was the epitome of love and light. He brought so much joy to many heart families through his pictures, videos and pureness. Trav would want the light to shine through, lots of it! So, for Trav and the DiCarlos, let down your walls and shine!

We love you, Travis. Always.


  1. Stacey, this was absolutely beautiful. As always, your writing is fantastic. And you're right, we walk through this tunnel together, hoping for the best but expecting the worst. Thank God we have each other to lean on. Love you heart sister!!! And love you Travis!

  2. Your post was amazing. This roller coaster is full of so many emotions...sometimes all on the same day. Travis' smile will always be in my heart and his family will always be on my mind.

  3. What a beautiful tribute to Travis' brave journey and his amazing family!!

  4. A beautiful tribute to such a beautiful boy!

  5. So sorry for the loss of their truly sweet baby boy! Empathy is a great quality and as heart moms I know we developed more than our fair share.

  6. What a beautiful tribute to Travis. Bringing tears to my eyes every time I read what someone has written about this vibrant and courageous little guy... Having friends who know what you are going through and can feel the pain you are living is very important in getting through the grief.. I know this because when my beloved mom passed away, it always comforted me to talk to others who had lost their mom or another loved one...
    I know that the the heart community out there is a strong family, and that you will all provide love on comfort to the DiCarlo family...
    You are all so blessed to have each other.

    I DO know how hard it is to live with this unknown... I worked in special ed for 7 years and lost 8 students during my time as a teacher ... I felt as if they were my own kids, the pain of losing someone is unimaginable.
    God bless you all...