R – E – S – P – E – C – T . . . find out what it means to me

If you’re not a member of the Heartland, you might want to skip this post.  If you are a member, please be sure to read it.

Honestly, I’m pissed off right now.  It takes a lot to make me mad, and people, we have sadly reached that threshold.

A few weeks ago a woman, whose name will not be shared, told me she was being bullied by some heart moms.  She is a CHD survivor. More recently two more  CHD survivors, who I’ve known for YEARS and adore, complained that the same group of women were attacking them online.

I’ve not personally witnessed this, mostly because I focus most my CHD energy on the nonprofit and local work I do, and I don’t spend too much on Facebook.  But I know these adults survivor women, especially the second and third very well, and I find this pattern of abuse extremely disturbing. Moreover, I’ve heard similar stories over the years from other adults with CHD who I love and respect.  I feel I must address this. . . again.

I don’t know if these attacks are happening because these survivors are sharing their truth, their fears, and their experiences with CHD and that makes the offended and offensive CHD parents uncomfortable.  I don’t know if it’s because the parents are just in so much of their own pain about their own kids, that they can’t find their humanity and compassion for others.  I don’t know if it’s a little of each and a mob mentality has arisen.

I don’t know if it’s the combined immediacy and idiocy of Facebook and hypersensitivity of people who are lacking actual human interaction misreading or reading into words not intended to offend or written without thought or accountability.   Really, we all need to get AWAY from our computers and start socializing and getting support from people in person where good manners and common sense prevails.  Even if you can’t meet people face to face, get on the phone or send individual email without a public audience.

However, at this point, I don’t care why this brutality and abuse is occurring- it’s simply wrong. It needs to stop and it needs to stop now.

When I see adults with CHD being attacked, I don’t relate to the heart parents attacking them, even though I am a heart parent. I relate to the nine year old boy who is terrified of his impending heart surgery who was trying to talk me out of it at breakfast this morning.  I side with the child I’m watching grow into a young man.  I side with the Liam, with my child who I want to see grow up.  I am always going to side with the person who makes me a Heart Mom and his interests, not my own.

I think if every heart parent who is offended, irritated, or confused by adults with CHD would stop before they type and first think – “If this was MY grown up child, what would I say?” that I would not have to write this blog post.  Personally, I’ve been confused by things Adults with CHD have said, but I used those opportunities to learn and be a better parent to Liam, not take offense, not be cruel.  My confusion came from a difference in perspective, and opening a dialog made me wiser and helped me build strong and vital friendships.  I value those friendships deeply, and I am beyond hurt that my friends have been hurt by women who should be learning from them, not harming them.

I’m calling for a Mother’s Day Facebook break. Not a boycott, just a break.  Step away from your computers and phones and hug your kids.

When you get back online please bring the Golden Rule with you.  Seriously, write it on a sticky or get it tattooed on the back of your hand, and do unto others what you would have them do unto you.  And if you can’t be kind, just be quiet, and think before you hit your enter key.  Before you get offended, make sure you aren’t bringing your own baggage to something that has nothing to do with you.  If you see something getting ugly, don’t jump on the bandwagon.  Question the conflict, don’t feed it.  It won’t hurt any of us to be more thoughtful, but it may prevent an awful lot of pain.

We are a Heartland, and we must be united or we serve no purpose but pain.  I refuse to be in the service of pain.  If we can’t sooth the pain instead of increasing it, what is the point of a community?  I’ve said my peace, please find some peace and kindness and share it with the world.


  1. Very well said. I really hate seeing the bickering, fighting and the daily bashing. As a fellow heart mom and member of the Heartland I want to know what the adult CHD survivors are going through. So, thank you for sharing this.

  2. Love it, thank you very much for writing this, this is exactly what I’ve been trying to say. I’m personally tired of all of it, this whole thing has gone way too far. I’m the same as you, and that’s one reason my son isn’t allowed to get on FB, because I don’t want him to be the one getting bullied and hurt, these kids have enough to deal with when it comes to their life, health and their peers, they don’t need to be bullied by other chd parents while online.

  3. Thank you Amanda. I feel the exact way as you and do not understand why these attacks occur. It is so sad that the CHD community has these troubles. We need to stick together and learn from each other.

  4. I want to know why CHD parents are upset with the adult CHD people. I have a friend who is an adult with CHD and she has never written or said anything that made me angry as a CHD parent. I haven’t seen this on facebook either. Can someone please share with my why a CHD parent would be anything other than encouraged by an Adult CHDer?

  5. Thank you for writing this…last week bothered me too. I have a lot of adult CHD friends and I respect them. I also have a lot of heart parents that are friends and I have a lot of respect for them too. I also have a lot of friends that have sadly lost their babies to CHDs and I respect them for all they have gone through and are still willing to stay in the heart community and unite in the goal to eliminate CHDs and/or at least provide the next generation and all of our little ones with the treatment and care we all so need so badly. There are so many people that we need to realize are involved in the heart community and we all need to remember that uniting for a common cause…to fund research and help and comfort everyone…is what it is all about. I really want to make sure we are also including some very important other members in our community…medical professionals. They also have a perspective to share and I know I have the utmost respect for each and every one of them as well.

  6. I am confused like Trent. I haven’t seen this issue between but am very curious why. I love talking to anyone at any age with CHD. They were oncet he same age as my kiddo and I have much respect for what they have gone thru. They may understand more of what my child has gone thru than me…What is the conflict?

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