Blog
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HLHS Dad goes to Washington D.C.; Part 2
Chris Perez attended the Congenital Heart Legislative Conference on February 25-26, 2015. Here, he writes about the first day of this adventure. As the father of a child with a serious congenital heart defect, Chris regularly writes about his experiences in the CHD world on his blog: Half Heart. Whole Life. Read the first part of his story…
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Finding Hope in Washington D.C.
Tori is mom to 6 amazing children. 1 grown daughter and 5 boys. 4 are here on Earth and 1 is forever 13 months old and watching over us from heaven. You can read more about her journey on her blog: Finding Hope without Sterling. She has been a tremendous advocate for the Conquering CHD. Here,…
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HLHS Dad goes to Washington D.C.; Part 1
Chris Perez attended the Congenital Heart Legislative Conference on February 25-26, 2015. Here, he writes about the first day of this adventure. As the father of a child with a serious congenital heart defect, Chris regularly writes about his experiences in the CHD world on his blog: Half Heart. Whole Life. As Day 1 began to arrive it…
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A Time to Gather
A Time to Gather (Mile)Stones Together: The Importance of Marking Our Days As Solomon said in Ecclesiastes, “There is a time for everything–” including a time to celebrate. Sometimes, it’s easy for the days to blur together–after all, they often fly by! I’ve heard my more cynical friends scoff at those who attach meaning to…
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Birthdays – Reflections and Celebrations
My sister, Kristin, was born in January 1980 with TOF. Her complete repair, at Boston Children’s, was one of the first in the country. I know this because Wikipedia states that the complete repairs began in 1981 and I know my sister’s surgery happened in late 1980.* I never thought about this until my own…
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We are here… CHD Support
CCHD recently had the privilege of attending the Mended Little Hearts Leadership Training Dinner. The following message was read by National Program Director Jodi Lemacks: Why Mended Little Hearts Is Here We are here because after a diagnosis, in your darkest hours, when you have pain in the pit of your stomach and you feel like…
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Wabi-Sabi: The beauty of our scars
“Wabi-sabi is a beauty of things imperfect, impermanent, and incomplete. It is the beauty of things modest and humble. It is the beauty of things unconventional.” –Nancy Walkup, from Japanese Aesthetics, Wabi-Sabi, and the Tea Ceremony My son, Kieran, has a wabi-sabi heart. As a child with HLHS (hypoplastic left heart syndrome), his heart…
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A Day in Little Rock
The perspective was daunting. There, in the cafeteria of Arkansas Children’s Hospital, behind tinted windows, gazing out over I630 I counted the endless number of cars that passed and wondered, “Do any of these drivers know what’s going on in here?” With my well earned cafeteria bucks (earned from endless hours in the NICU pumping…
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Rain Showers, Rainbows
Today’s guest post is from Margaret, mom to Kieran, where she describes her struggle to overcome the conflict between reality and her spiritual faith. CCHD does not endorse any specific faith or religion. Whatever your beliefs may be, hopefully you can relate to the resolution this mother finds in appreciating the hope and comfort she finds…
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Congenital Heart Awareness – from our Partners at the CDC
Today’s guest post comes to us from the Centers for Disease Control and Prevention (CDC). With-in the CDC, the National Center for Birth Defects and Developmental Disabilities (NCBDDD) is dedicated to helping people live to the fullest. They have been incredible champions for congenital heart defects and we are privileged to have them as a partner!…
