By Christy Sillman
6 May

High Fives to Congenital Heart Walks!

Monday, May 06, 2013

As I reflect back on Sacramento’s inaugural Congenital Heart Walk in late April, there are a lot of things I feel like celebrating. We tripled our first year goal. My team came in second for fundraising. I felt so much support from the people in my life who walked with me as part of my team. But there’s one aspect of the walk’s raving success that I’m overwhelmed by – the local CHD community finding each other.

Christy's Heart Champions (photo by Trifecta Photography)

I spent two years as a pediatric ICU nurse in our local hub for cardiothoracic surgery, UC Davis Medical Center, and I was blessed to care for many local heart families during that time. So I knew there had to be a large CHD community in California’s capital city of Sacramento.

I’ve connected with a bunch of local adult CHDers through online groups and our in-person Mended Little Hearts pilot ACHD group – Surviving CHD. At these local monthly meetings we get enough members to fill a couple of café tables but I’ve never really felt the energy of a large group of CHD people like I did last weekend.

It was palpable.

It was electric.

It was inspiring.

When Shannon Tucker (ACHDer, walk coordinator, director of Sacramento Mended Little Hearts, and general CHD goddess) started planning the walk, I was the “experienced walk attendee” who would try to steer her toward a standard I’ve seen at other area congenital heart walks. I expected maybe 50 people to walk. Hoped we could get five teams to register. I was happy with the idea of having some pre-walk music playing through a PA system.

We had 38 teams! THIRTY-EIGHT!!

We estimate that we had more than 350 people walking!

We had entertainment, Starbucks, games, balloon animals, photographers, a bubble station, and snacks.

We had perfect weather.

We had a BLAST!

The most profound moment for me was when a mother recognized me as her son’s nurse from the past. She was very nervous because this was the first CHD-related event she had ever attended. I was glad she saw a familiar face in me and I did my best to comfort her and welcome her to the community.

I know there were other families, adult and kid CHDers alike, who had felt so alone, so alienated in their journey, and had taken the chance to meet others like themselves by attending the walk. I could see a wave of relief upon their faces when they connected with other “heart people” – and by that, I mean the patients, mothers, fathers, grandparents, siblings, friends, and other loved ones who have somehow been affected by CHD enough to devote weeks of fundraising and a Saturday morning towards raising awareness for CHD.

There were four other walks going on in Sacramento that day—March of Dimes, Muscular Dystrophy Association, National Alliance on Mental Illness, and the ever-fun Zombie Walk. Almost 400 people decided to join us instead. Obviously this isn’t a “disease” competition, because, let’s face it, zombies usually win every time, but I was really impressed that we had a strong place in the area walks that day, especially since this was our first walk.

What I learned that day is that we’re out there. There are more of us than we think. If a few of us can put forth the guts and the effort to host events like a congenital heart walk we’ll have an excuse to find each other. Together we’ll have a louder voice than alone.

High fives to all the “heart people” out there who are in the midst of the planning stage. I know you’re stressed. I know you don’t know how it’ll all come together, but keep going. You’re doing an awesome job and you just might really surprise yourself.

What CHD-related events do you have planned this year? Have you thought about things you can do in your local community to connect with other “heart people”?

A note from ACHA: We hope you will register for a Congenital Heart Walk in your city today! Click here for more information, dates and registration links.


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