Her scar is something, for me, that’s such a badge of honor, I honestly feel that way. Before her surgery I thought, “Oh my Gosh, look at her perfect beautiful little chest now, there’s going to be a scar there.” I don’t feel that way at all anymore. I sent a picture around to people afterwards and someone just responded “Brave heart.” And my cousin said, “That is so cool. I love scars, they tell such a story.” And I really do think it’s such a badge of her strength. It’s going to be something that she can reflect back on that’s tangible. It may fade, but it won’t ever totally disappear, she can always look down and say “I did that, I can do this” whatever that “this” may be, and how brave she was when she was just two years old.
She, you know, she points to it happily, from her—because she’s always used the word “boo” for a boo-boo, so from day one it was “her beautiful boo,” and it still is. It’s just this very cool thing. I just—I really—to me, I’m so proud of it. I’m so proud of her, it is such a sign of her resilience and strength and courage as just this tiny little person.
– Jessica, mother of Avery, age 2, ASD
So we bought the book “Zip-line,” it was written by a dad, a Boston Children’s dad. It’s called “Zip-line” and it’s about a little girl. It rhymes, it’s very age appropriate, it’s not scary. It talks about how she was very brave. Well, so we started reading that to Emily before Elizabeth’s surgery, because we didn’t want her to be scared when she saw the incision. So we started reading it originally to Emily and now we read it to Elizabeth, and I donated the book to the preschool because they read books to them, and if three of them are there with open heart scars, the other kids need to know. So now she talks about her zip-line, and it’s kind of funny because she’s like “My zip line can get wet, I’m so brave.” Because she sees me at the pool and she’s like “You don’t have a zip-line, I have a zip-line.” She’s proud of it. And I want her to be proud of it. I think about that. Like, the first time she ever takes her shirt off in front of someone, I want her to be really proud of it. It’s almost like a beauty mark.
– Anna, mother of Elizabeth, age 2, VSD
After her second surgery, I remember it caught me totally off guard, one girl watching her dance class had seen Amelia in her leotard and had seen the scar and it still had the dermabond, and it looked kind of gross, and she pointed at Amelia and was like “Ew! What’s that on your chest?” And I remember Amelia looking at me with fear in her eyes, and I was at a loss for words because it was just so random. It took me a second to pull myself together and I said, “Oh, that’s Amelia’s bravery scar. A doctor had to fix boo boos on her heart, and that’s what he gave her. He gave her this great, great bravery line that shows how brave she is for what she’s been through.” Then the little girl was kind of like, “Oh, wow!” and that was it. Some of the girls in her classroom weren’t as blunt and just said, “Oh, is that from your surgery?” Because the teachers had shared with our approval that she was going to be out, and that she had some problems with her heart, and they made her cards and sent them up to the hospital and gifts had come and been delivered so she felt supported by all her friends and stuff while we were at the hospital. When we came home she got more surprises and stuff like that. But luckily, there’s not been a lot of attention to her chest, to the line. At this point it kind of blends in, it’s hard to see. She doesn’t wear a lot of shirts that expose the area.
When she gets upset, or sometimes she’ll put on a shirt where her scar will show—because after her second surgery, that was bothersome to her, that you could see the scar. Especially when it was more fresh and more noticeable, body image kind of came into play. That’s when I pushed and encouraged like, “That’s your bravery scar. None of the other girls in your classroom have that.” And I was like, “You were this lucky girl that was picked to have this heart and you had a lot wrong with your heart, but the doctors fixed it, and now you’re healthy, and that’s your scar to let everybody know how brave you are.” And slowly with time as it’s healed and stuff, she’s accepted it, and it’s nothing now to her, which is nice. And I said “If you didn’t have those surgeries, you couldn’t play soccer” so that’s how we kind of turn it around again and make it a positive thing that she’s been through.
– Roxanne, mother of Amelia, age 7, Dextrocardia
I think medicine’s very important, but just realizing there’s also something bigger, and somebody’s taking care of Alexandra, that’s been really helpful for us. I love this story in the Old Testament, they used to put these things called “Stones of remembrance,” and so at the parting of the Red Sea, when they went through the Red Sea, and how God provided, they put stones of remembrance, and so every time we go in and Alexandra has x-rays, you see all these scars on her body, and I think of those as her stones of remembrance, of how God has preserved her life. It’s interesting because God always says that you need a new heart, and Alexandra has a new heart. So I think there’s all these great tangible things about our faith that come through with the story, and that we’ve been able to tell our children.
– Kate, mother of Alexandra, age 8, Heart Block & Pacemaker
[At ICD/Pacemaker Camp] They have scar buddies, they call them scar buddies, and they show their scars to each other, and they’re proud of their scars. It’s not something they want to cover up. A big thing was when Chloe met a girl, she was Miss Massachusetts at one time, and she had an ICD. She had a problem with her ICD so they had to replace it, and she has quite a large scar, and she said that when she was in the beauty pageant, she didn’t cover it because she’s proud of it, it’s who she is. And she told this to Chloe, so Chloe is happy with her scar, it doesn’t affect her.
– Jim, father of Chloe, age 13, CPVT