By Alissa Butterfass

It’s 11:22 a.m. and I am at 7,520. Steps, that is. I’m back to counting steps and points and pounds and ounces, in my seemingly never-ending challenge to get down to a healthier weight. When I first started in January, I was just minding my eating – trying to eat healthier, snack on veggies instead of cookies, and drink more water.

Next, I found my pedometer and started wearing it daily. I loved to see how high I could get it to go during an average day. Rather than make my son get his own sweatshirt, I’d offer to get it so that I could add a few more steps to my count. But no matter how many times I ran up and down the stairs fetching toys, books and sneakers for my kids (which they really should be getting for themselves anyway), I was barely reaching 5,000 steps. I knew what I had to do if I really wanted to slim down.

By Paul Willgoss

One race cancelled due to the weather.

One event foreshortened due to an error on my part.

Thank you for the good luck wishes. Some things just aren’t meant to be.

It would be easy to draw the analogies to living with CHD, the sense of not knowing whether something is going to happen, and if it does happen—will it work as promised?

By Jennifer Gooden

In March my husband and I went to Walt Disney World in Orlando. We went to celebrate our one-year wedding anniversary. We got a hoppper pass to see all four Disney parks and ran around like a couple of kids (figuratively speaking) and had an absolute blast.

Making our way around the four theme parks—combined with the Florida heat and standing in the Disney lines with that heat—made me pretty exhausted. Day two of our vacation was when the excitement worse off and the fatigue set in, and I realized that I couldn't keep up with the kids in the park or my husband and I started to feel a bit down.

By Stephie Goldfish

Stories are told by my mom and older siblings that happened in the distant past—stories my twin sister and I were too young to remember, but are not lost. They are etched in memory, and are still fresh and vivid as yesterday.

One story is imprinted on my mind, like my infamous abnormal EKG, which will never read normal, unless I receive a combined heart and lung transplant.

By Kim Edgren

Phew, what a month! The Boston Congenital Heart Walk just finished, my oldest will be home tomorrow after her first year of college, and spring and all its outside work is upon us. But today I will experience a role reversal of sorts as I bring my youngest daughter to the cardiologist.

By Christy Sillman

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.

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.

By Alison Boerner

Camp Odayin provides life-changing camp experiences for children with heart disease. Thanks in part to a volunteer staff, each camp program costs only a $25 registration fee per camper. For most of the campers, Camp Odayin is the only chance they have to participate in a summer camp program, try new things, and be among other kids who understand the challenges they have faced in life. Eight–year-old Aidan didn’t know any other kids living with heart disease before coming to Camp Odayin. Aidan has an atrioventricular septal defect and goes through his daily life aside six healthy brothers. His family had attended Camp Odayin Family Camp, but like many parents, Aidan’s mom and dad hesitated to send their medically fragile child to Residential Camp. Aidan’s mom shared the following after Aidan’s week at summer camp...

By Lorelei Hill

“I am such a terrible mother!” she cried.

We had been chatting in a quiet circle at various places of the Hospital for Sick Children’s 4th Annual Labatt Family Heart Centre Family Conference throughout the day. How many times I have said those same words about myself? Being a congenital mother of two high needs CHD children, most days are very demanding.

By Paul Willgoss

Luck is intangible, but not insubstantial—please give me a smidgeon, for both my next big event and for something that could help ACHDers.

Last year I mainly concentrated on running, and I had a hellishly good year of it. This year is a bit different. With the distances for events I’m looking at being so long, or the terrain so extreme that my normal training routines aren’t up to scratch, my normal thinking just won’t cut the mustard.

By Jon Ritchings, Jr.

I've been playing a lot of disc golf the last couple of weeks. Between the coach of the local high school team leading his kids through the middle of the course and interrupting play, the vandalism to the course, and the amount of garbage that people are leaving, it's given me pause to think about—why? I think it comes down to a lack of respect. All three of those things can be tied back to a lack of respect for the people who use the course on a regular basis. But, I don't want to talk about that. I want to talk about the lack of respect everyone sometimes shows for themselves.