By Kim Edgren

Back in 2008, I headed off to Philadelphia to the ACHA National Conference with my partner Karen and our good friend Joan. This was my first conference and I knew a few minutes in it would not be my last. We had a great time, between the silent auction, the gala, and meeting new people both at the workshops and after. On the drive home we talked about wanting to do more—raise some money for this great organization. Maybe a big fundraising party or walk.

And then we got home. Life went on. Nothing got planned.

By Jon Ritchings, Jr.

I'm kind of a silly guy in that I live my life by moments. I do my best to live my life in the moment, trying to notice everything that is happening around me. It is how I live my life these days. I no longer concern myself with things I have done in the past. Many of those things I can't do anymore and dwelling on that accomplishes nothing except developing resentment for what I have lost.

By Abi and Livi

Note: Todays’ blog post is written by two of regular ACHA blogger Kim Edgren’s daughters. As Kim says, “I asked them to write a little something about having a mom with CHD and the post is their response.”

By Alissa Butterfass

In honor of Mother’s Day, I interviewed my mother Nora Wiznitzer Stonehill about being a parent of a child with a CHD. Below are condensed and edited highlights of the conversation. Note: I am not a professional transcriber so I hope this captures my mother’s intent, if not her actual words. Many thanks to my mom for her honesty and candor during our conversation.

by Stephie Goldfish

In January, I posted a blog about my friend Nicole, a young adult I recently met with a CHD diagnosis and story very similar to my own. When I spoke with Nicole for the blog post, I was also able to ask a few questions to her mother, Jane, about how Nicole will be transitioning into adult care.

To coincide with Mother’s Day on Sunday, presented below is an abridged version of the interview.

By Christy Sillman

Sometimes I can’t believe I’m a mom. It’s not that I never thought I’d be a mother—it’s just that I never allowed myself to dream that far into the future. It’s a protective mechanism I’ve utilized since I was very young. I focused my energy on the present, and tried not to get too bogged down by the long-term future. It’s the result of growing up against all odds.

That’s all changed; now all I think about is the long-term future.

Summer days at Camp Odayin are filled with all the typical joys of camp—horseback riding, arts and crafts, wacky costumes, and canoeing. Children meet lifelong friends and find themselves longing to grow up to be like their cool counselors. While this is a common scene at many camps, an observant visitor might realize there’s something special about the campers at Camp Odayin. At meals, caring nurses give these vibrant children numerous colorful, cardiac medications. Down at the lake, waterskiing kids with zipper scars trail behind a boat carrying a cardiologist and an AED.

By Ken Woodhouse

Although I have not yet started the official training program for the half marathon, I’ve been going out for a few brief runs over the past couple weeks to start getting myself into the habit and routine of running. Truth be told, my pace is slow, my endurance is limited, and I don’t really love it—not yet, anyway.

To kick off my very first running season, I signed up for my first 5K race on May 12: Move for the Kids, which benefits the Ann & Robert H. Lurie Children’s Hospital of Chicago (formerly Children’s Memorial Hospital, where I had my one open heart surgery when I was eight months old). As exciting as this is for me personally, I didn’t even really plan it.

By Kelly Deeny

Walking: One of the few forms of exercise that I enjoy. When I walk, be it around my neighborhood, a local park or my office building, I’m able to enjoy my surroundings. It’s time to think, to ponder and to daydream. To get some “fresh” air and have time to catch up with friends and family. When I start thinking about walking for my health I recall how I came to become more involved with ACHA.

By Jon Ritchings, Jr.

I think of everything around us as a tool. As part of the CHD community, I know that technology is definitely a tool. Technology has allowed us access to new surgical techniques and devices that have allowed many of us to live longer, more productive lives.

Experience is also a tool. Simple trial and error has answered many questions for my generation and the ones that are coming up now.