Today is not only Valentine’s Day, but it is also Congenital Heart Defect Day. In honor of CHD and Heart Warriors everywhere, this month’s cause warrior HAD to be a Heart Warrior too.
I first “met” Kristine online when I sought information about pulse ox screening actions and she was very helpful. This is because after losing her precious daughter Cora to CHD, Kristine became a kick-ass advocate for screening, not only getting the law passed in Indiana where she lives, but mobilizing families all over the USA to help enact this important federal recommendation into state legislation so fewer mothers have to face the terror that Kristine faced when she lost Cora. I am so proud to call Kristine a fellow heart mom and a friend, and here is our interview:
Amanda: You’ve written extensively and beautifully about your tragic loss of your baby Cora to undiagnosed Congenital Heart Disease. Where do you find the strength to tell your story?
Kristine: Thank you for calling my writing beautiful. A huge compliment coming from such a talented writer. I’ve always been a writer. I’ve always been able to express myself much better through writing. I shared so publicly because I noticed with the first raw and emotional pieces that they seemed to really help people. I got lots of feedback from other grieving moms that they were learning something, or feeling a bit better after reading what I write. And, then eventually, I started getting notes from people going through other hardships that something I wrote had helped them. That’s what this is all about for me. That, and making sure Cora is always remembered.
Amanda: What, if anything did you know about CHD before Cora passed away?
Kristine: I’d never heard the phrase. The coroner told me, and I figured that it must mean a heart problem she was born with. My husband and I flipped through a dictionary, which was no help. The first time I heard the phrase “congenital heart disease” was from the coroner.
Amanda: What does being an advocate mean to you?
Kristine: Being an advocate means speaking for the babies and children that have no voice. Being an advocate means being a trail blazer and moving unabashed because I know what I’m doing is right.
Amanda: If there was one thing you wanted people to know about Congenital Heart Disease, what would it be?
Kristine: I’d want parents to realize that CHD isn’t something that happens only in certain families–it can strike anywhere.
Amanda: What advice do you give other expecting parents and what challenges have you found in sharing that advice?
Kristine: I’ve found that it’s much harder to give advice in person. It’s easier in writing, where I can give disclaimers like, “this worked for me, but not work for you.” Something practical I always tell moms that are about to lose a child, or just lost a child, is to get a lock of your baby’s hair. I wish I had a lock of Cora’s hair.
Amanda: What do you want people to know about you?
Kristine: That I’m just a mom, and like any mom, know what’s best for my child. I fully believe in moms, and their ability to take care of their children.
Amanda: You gave some outstanding advice on your blog about how to support grieving parents and you have shown amazing compassion and depth in understanding why so many of us get it wrong. If you had to pick the top three recommendations for supporting friends and family who have lost a child, what would that be?
1. Give them money. No one likes to talk about money, but losing a child is expensive in many ways. It’s appropriate to send it in a condolence card, or through a donation at the funeral home.
2. Let them guide you. Don’t assume they’re feeling anything or will react in a certain way.
3. Don’t put timelines on their grief.
Amanda: What do you hope people will take away from your writing for themselves, and what do you hope they will do with that?
Kristine: I want people to walk away with just that–hope. I went through the worst thing I possibly could. Losing Cora will always be the bottom from me, but what I’ve done after has been beautiful. It’s okay to grieve gracefully. You can be angry, sad and even grouchy and keep grace and compassion to others in the forefront.
Much thanks to Kristine for taking the time to let me interview her during heart month! To read more of her great writing and see what she’s up to as a cause warrior, please visit her blogs: