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Your Kids and Your CHD: Do They Understand?

Monday, September 23, 2013

By Alissa Butterfass

I’ve written before about speaking with my kids about my heart condition, but as a parent of young kids it is really hard to discern what my 4 ½- and 7 ½-year-old truly understand about it. Or about my younger son’s birth through gestational surrogacy (which I wrote about here and here). My husband and I have generally taken the approach of just incorporating the topics when appropriate—not to hide anything but not to sit the kids down and have “the talk” either.

Yet, I wonder what is really sinking in. When my older son M. was obsessed with maps last year, we pointed out New York, where we live and where he was born, and Georgia, where S. was born. We have definitely mentioned that M. was in my belly just like most babies are in their moms’ bellies, but that for S. the doctors took what they needed from me and what they needed from my husband and put it together in someone else’s belly. Last year, during the nursery school’s mock trip to Israel, when asked by “security” where they were born, all eleven of S.’s 3-year-old classmates responded “in the hospital.” Seth said “Georgia.”

But just when I thought they kind of understood that concept, S. proved me wrong. Apropos of nothing, one day in the car he asked about the plane ride home from Georgia after he was born. “And that’s when I was in your tummy?” he asked. Hmmmm… not quite.

My older son M. is very thoughtful and sensitive. He shies away from any uncomfortable conversations. The other night I was reading him a picture book called Alex and the Amazing Lemonade Stand about a girl who is sick (the unnamed illness is cancer) and decides to sell lemonade to raise money for the hospital where she is treated. As M. gradually realized it was based on a true story, he couldn’t even bear to have the book in his room and made me place it in the hallway. I’m nervous to go into too much detail about Mommy’s own heart condition, lest it scare him.

As a parent, even though you know your child best, it still can be a challenge to know how and when to share this type of information, which can be personal, confusing, and even scary. And with my kids in school, I feel added pressure to choose my words carefully. As I say, they know just enough to be dangerous. I don’t know what they may be repeating, or misrepeating, to their friends.

The aforementioned conversation with S. about being in my belly on the plane took place the day before school started. Because I didn’t know if S. would bring it up again (turns out he hasn’t), at parents’ orientation that night I made sure to explain to S.’s teacher about the surrogacy, and about the fact that S. had just been asking about it. I felt they needed to be aware it could come up in class unexpectedly.

There is no shame in my heart condition, or in gestational surrogacy. I want both M. and S. to understand it and to feel comfortable talking about it. Eventually. Because I also really am hoping my kid isn’t the one that teaches sex ed to his nursery school friends…. No one wants to be “that” parent!


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The opinions expressed by ACHA bloggers and those providing comments on the ACHA Blog are theirs alone, and do not reflect the opinions of the Adult Congenital Heart Association or any employee thereof. ACHA is not responsible for the accuracy of any of the information supplied by the ACHA bloggers.

The contents of this blog are presented for informational purposes only, and should not be substituted for professional advice. Always consult your physicians with your questions and concerns.

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