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Your Kids and Your CHD: Do They Understand?

Sep 23

Posted by: ACHA
9/23/2013 1:54 PM  RssIcon

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!

Alissa Butterfass was born with transposition of the great vessel, which was corrected with a Mustard procedure at age 2. In addition to being a mom, wife, daughter, sister, friend, wannabe author and chocoholic, she volunteers as the Co-President of her local chapter of a nonprofit organization. Until recently, Alissa worked part time as a senior marketing manager at a Fortune 500 company.

Copyright ©2013 ACHA

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2 comment(s) so far...


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Re: Your Kids and Your CHD: Do They Understand?

Thank you for this! As a mom to twins through gestational surrogacy, I honestly hadn't even considered the CHD aspect, I've been too busy prepping them all about surrogacy (we even have a book about it we've been reading to them since before they were born!)

This is something that I need to give more thought to because it is almost just as important.

By Michelle on   9/23/2013 2:49 PM
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Re: Your Kids and Your CHD: Do They Understand?

My children are 11 (twins) and one almost 10. They are now starting to understand that Mommy can't do the things that other mother's can do. They don't fully understand the seriousness of my condition, but know that I do have had it since I was born. They know I will never be cured and will have to have surgery in the future. I try to keep things as normal as possible for them and answer their questions as needed. I have corrected Tetralogy of Fallot.

By Julie on   9/23/2013 4:00 PM

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