Tag Archives: awareness

Running for the Heart of It

Next weekend I’m going to run my first race since Dottie Lou was born. Well, my first race since I found out I was pregnant with her. If I were being honest, I’d also tell you that it’s also the first real run since finding out I was pregnant.

Actually, this time last year is when I ran for the last time — this very same race: the Fifth Third River Bank Run 5k. And it was just a couple weeks before that faint pink line appeared.

ALZ StarsLast year I ran to raise awareness for Alzheimer’s Disease in honor of my dad who, at that time, was just beginning to slip into the stage of the disease that would take his life.

You see, running makes me feel good about myself physically and mentally. Running for a cause that’s as near and dear to my heart? Well, that’s just good for my soul.

This year I am — once again — running for a cause that’s important to me: Mended Little Hearts of West Michigan. This year, I’m running for Penelope Joy. And I’m running for the 1 in 110 babies born with a congenital heart defect (CHD).

Penelope Joy Scar

Penelope Joy

If you’ve been following my blog for very long, you know that Penelope Joy is our oldest daughter who was born in 2013 with a number of serious birth defects — among them, several heart defects, including a hypoplastic left ventricle. She had her first open heart surgery when she was four days old. And she lived for a mere 38 days.

We had learned about her special heart at a 20(ish)-week ultrasound when we were given the news that would forever change our story. I won’t talk too much about that part of our journey — because those stories have been told before. What I do want to talk about is how important Mended Little Hearts became to me as I faced something no mother should ever have to face: the death of her child. At the time, her only child — the one who made her a mother in the first place.

mlh logoMended Little Hearts is a national group with regional chapters made up of people — in West Michigan’s case, mostly women — who offer support, encouragement and education to families as they face the realities of CHDs. I first learned about them through a pamphlet I picked up at the heart surgeon’s office during one of our prenatal visits. (Gosh — who ever thinks they’ll have to visit a heart surgeon for a prenatal visit?!)

After I reached out to them, it was like some sort of balloon popped — one of those really cool, fancy balloons filled with all sorts of beautiful confetti. Except this balloon? It was full of amazing women with beautiful souls who reached out to Mr. B and me in our most desperate time of need. We were immediately surrounded by love and support and prayers. In addition to information and messages of love on social media, the women brought us food to the hospital — and they ate with us. They didn’t try to make us feel better — because when your child is dying, there is no “better.” But, by being there for us — and somewhat understanding, or at least appreciating, what we were going through — they helped us immensely.

Since Penelope Joy died, they have served as a support group for me in a way. While it can be difficult to attend some Mended Little Hearts events — because “why couldn’t my Penelope been one of those kiddos running around, beating all odds” — it’s so special to be part of a group where I get to be surrounded by all those little superheroes who are stronger than their years. And don’t even get me started on their parents and other family members who’ve been through … well … you know … and back.

The group offers so much more than support and yummy food — though, to a person staring down the line at a hospital cafeteria, that might be the most important thing! Mended Little Hearts also provides a number of helpful resources and services by:

  • Providing peer-to-peer support to parents and caregivers of children with congenital heart defects
  • Providing peer-to-peer support for children and adults with congenital heart defects
  • Offering educational and health resources related to congenital heart defects
  • Raising awareness in the community about congenital heart disease to help others understand the disease and increase research funding
  • Providing support to expecting families through our Prenatal Information Pack distribution program
  • Providing support to families through our care bag distribution program at Helen DeVos Children’s Hospital
  • Advocating on issues that help improve the lives of those living with congenital heart defects

By choosing to use my (very slow) miles to raise money and awareness for Mended Little Hearts, I hope I can make even a tiny sliver of the difference for someone that this organization made in my life.

If you’re interested in learning more about Mended Little Hearts and the services and support the organization provides, please visit the website. And, if you’d like to support me and MLH-WM as I run my first race since Dottie Lou was born, you can make a donation here — please don’t forget to select my name (Kimi) from the dropdown menu. (Special shout out to all of those who have already supported me in this run — financially and spiritually!)

And, if you’re so moved, please say a little prayer of strength — physical and emotional — as I make my way toward the finish line on May 9.

Our final family photo with Penelope Joy.

Our final family photo with Penelope Joy.


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