Recent Entries
Summer Vacation: Tips for Traveling with CHD
How Do You Start Your Morning?
Balancing Parenting & Congenital Heart Disease
The First Five Years
My Journey to a Grateful Life
Now What?
Medical Home Sweet Home
Still Cliché’?
To My Village: Thank You
Education is Key in Spreading the Word about CHD


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.

My Son’s Thoughts on CHD

Feb 22

Posted by: ACHA
2/22/2013 10:00 AM  RssIcon

By Alissa Butterfass

Unsure what to write about today, I went to my oldest son’s room and asked if we could talk. Though I promised he was not in any trouble, my almost-seven-year-old still was none too pleased to be pulled away from his Legos. When he finally came to sit with me, I asked him about my heart condition – what did he think it meant? His answers were telling: “It means you can’t run too fast cause you’re old” and “You have to take Lactaid pills to eat ice cream.”

Hmmm… not quite. I certainly wasn’t expecting M. to fully understand what my heart condition was. But since I spend so much time worrying about how my condition impacts my children’s lives, it was a relief to hear that it is not even on M.’s mind.

While the two issues he noted are indeed problems of mine (thanks to my 40s and my lactose intolerance), the things I thought he might mention – my not being able to go up a lot of stairs, having a hard time climbing the rope maze at playgrounds, getting out of breath quickly, someone else being pregnant with his younger brother (i.e. surrogacy) and all my scars – either were not top of mind to him or else were not associated with my heart condition in his mind.

Granted, I am basing this on a five-minute conversation with a kid desperate for me to stop talking so he can return to his mini figures. But there was such a lack of concern and even interest in the discussion that it eased some of the guilt I often feel about being a mom with CHD and worrying that my kids aren’t getting the energy and endurance of a “normal” mother.

At some point I do want to have a more focused conversation with M. about my heart condition. I don’t know when that time will be. How old will M. be? Will we talk about it once and then forget it, or will it be something that is discussed periodically? I am not sure.

I do want to make sure he is comfortable asking any questions about it. If he eventually does begin to learn more about CHD, if he wants to understand it better, if he has any concerns or if he is scared about my future, I hope he will know that I am always open to listen and discuss.

In the meantime, if in his mind the worst part of having a mom with CHD means she has to take some medicine before she can dig into a scoop of mint chocolate chip ice cream, that’s not so bad.

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

Location: Blogs Parent Separator ACHA Blog

2 comment(s) so far...


Re: My Son’s Thoughts on CHD

Hello Alissa,

I read your story about your son it's cute the he think that,but once he get old he will ask more question. I my self don't have kids ,but I do have nephew and nieces and all of the ask me question everyday. Hope that one day I can have a little one of my own to ask me question like.

By Roxana ramirez on   2/22/2013 12:14 PM

Re: My Son’s Thoughts on CHD

Given your willingness and ability to talk about these issues with him as they come up; my guess is that he will become a more accepting, caring and empathetic person as a result of being your son. Yeah, he may miss out on having races up the stairs with his mom like some other kid might do, but I'm sure you'll do a few things with him and create other good memories that not all kids will have too. Remember that above all: He loves you because you're his mom and you love him, teach him about the world, and take care of him. That's what matters ...even if you might occasionally do it a little differently than other moms.

*While I don't have a mom with CHD, my mom did have a condition that made her have to do a few things a bit differently in raising my brother and myself.

By Gizzy on   2/22/2013 12:22 PM

Your name:
Gravatar Preview
Your email:
(Optional) Email used only to show Gravatar.
Your website:
Security Code
Enter the code shown above in the box below
Add Comment   Cancel