Mended Little Hearts Open Forum

Hi all, 

I am not sure because where to begin or how to go about or how much i should share with people we encounter in our daily lives. 

While we wear our shirts proudly, necklaces for myself, a tattoo for crying out loud... i still feel "off" or it's just too much for others about sharing with strangers about my kiddos CHD. I am not sure if it's confidence i am lacking or maybe just how to share about our special miracle babies. I know i never want someone to feel "sorry" for them or myself, so i guess i am searching for how quickly into a conversation does it need to be said? 

for example: At the pool this evening a conversation started about how old my son was, then a comment for his size (my kids are petite and "small" for their ages) then comparison happens and that's when i feel the need to let them know about the underlying condition they have. Sometimes it's a "wow, i would've never known", or "I am so sorry". To then i am explaining and educating them on what heart block is and our story from there-which i love to share with them but then sometimes i think i share too much and they're left digesting a lot. PSA: I am never in the sharing mode to get attention i am an introvert so to have a conversation with a stranger is not me at all, but i've forced myself to hold a conversation.  but at the pool, you're there with no where to run and hide and feeling exposed in your swim gear :P LOL with a son who wants to continue to go the cold pool back to the spa...haha. (The conversation i had was good, he was receptive, and was offering empathic comments, but i know it caught him offguard-which every one not in tune to CHD awareness articles of jewelry or tattoos is for sure left stunned) Maybe it's just my own insecurities i am left to deal with... 

Just curious as to when it's appropriate to drop the CHD bomb, i guess is what i am wondering, i know each conversation is different and some people just don't want to think about it.
Thanks all!!!

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Lydia Howard
Clovis CA
(559) 917-2843
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Hi Lydia, 

This is a hard discussion to decide on. I find myself waivering between wanting to tell everyone and never wanting to tell anyone. LOL For example: I want people to understand that Trenton is limited in certain areas or is affected in different ways....But I don't want it to appear like I am making excuses or not treating him as a "typical kid". 

This is purely MY WAY of doing things with the general public. (Also the fact that I am very open and actually work in the field of advocacy plays a role). Obviously educators, health professionals, etc. are totally different and need to know everything. 

I don't typically bring the CHD up unless we are discussing health concerns, risks, scars, etc. If someone asks, I share openly but I don't openly bring the topic up. So, for example on the playground or with strangers....I just don't talk about it unless it's asked. But once the door is open and I find the person is curious, I give information as I can. Usually saying something like "I didn't know it was the number one birth defect!" or other things that are educational. Trenton also has Down syndrome, so that gets questions too. I usually get more questions about that than I do about the CHD. But I'm open and honest with anyone who is interested. I truly believe that education starts with me. I don't want people to treat him different, but it's obvious they will....It's my job to educate and show them how alike he is. I also use my best judgement on how much information they "really" want/or need to know. So...if a 6 year old says "Why doesn't he talk?" I will give a very basic answer like "Well he has something called Down syndrome, which means he was born needing extra help. He can tell you lots of things but he uses sign langauge. Do you want to learn a word in sign language?" Then I adjust the interactions base don the person asking questions. 

Long story short, I don't openly tell people in public. But if they ask...I share as much as I think is appropriate. 

Hope that helps. I guess there's no real clear answer. 




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Andrea Baer
Director of Patient Advocacy
Mended Hearts/Mended Little Hearts
Grapeville PA
7243967820
Director of Patient Advocacy
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I think that it's always a good conversation to have. People are getting educated about CHDs AND you are building a deeper relationship with the person you're talking to. Then again, I am an extrovert and I love meeting new people and going deeper. Even as I'm typing this, I wish that I could be talking face to face with you :). So, just share what you're comfortable with, but I wouldn't overthink it. I drop the CHD bomb in most of my initial conversations because it's just our story and who we are now.

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Annie Garman
Author
Annie B Garman Publishing
VA
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Original Message:
Sent: 05-22-2017 10:17
From: Andrea Baer
Subject: confidence maybe?

Hi Lydia, 

This is a hard discussion to decide on. I find myself waivering between wanting to tell everyone and never wanting to tell anyone. LOL For example: I want people to understand that Trenton is limited in certain areas or is affected in different ways....But I don't want it to appear like I am making excuses or not treating him as a "typical kid". 

This is purely MY WAY of doing things with the general public. (Also the fact that I am very open and actually work in the field of advocacy plays a role). Obviously educators, health professionals, etc. are totally different and need to know everything. 

I don't typically bring the CHD up unless we are discussing health concerns, risks, scars, etc. If someone asks, I share openly but I don't openly bring the topic up. So, for example on the playground or with strangers....I just don't talk about it unless it's asked. But once the door is open and I find the person is curious, I give information as I can. Usually saying something like "I didn't know it was the number one birth defect!" or other things that are educational. Trenton also has Down syndrome, so that gets questions too. I usually get more questions about that than I do about the CHD. But I'm open and honest with anyone who is interested. I truly believe that education starts with me. I don't want people to treat him different, but it's obvious they will....It's my job to educate and show them how alike he is. I also use my best judgement on how much information they "really" want/or need to know. So...if a 6 year old says "Why doesn't he talk?" I will give a very basic answer like "Well he has something called Down syndrome, which means he was born needing extra help. He can tell you lots of things but he uses sign langauge. Do you want to learn a word in sign language?" Then I adjust the interactions base don the person asking questions. 

Long story short, I don't openly tell people in public. But if they ask...I share as much as I think is appropriate. 

Hope that helps. I guess there's no real clear answer. 




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Andrea Baer
Director of Patient Advocacy
Mended Hearts/Mended Little Hearts
Grapeville PA
7243967820
Director of Patient Advocacy
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I am a 49 yr old TOF patient.  Because my parents never shied from a brief explanation when asked by strangers about me ( tiny leaky valves and holes between the chambers so blood didn't have a clear path to follow was their answer)  I as a kid would just say I have a broken heart.  Broken for a kid just means an adult would have to fix it when they had the time.  I didn't worry about it.  I am sure my parents did.  My point is because my parent would always answer so straightforwardly it was just a fact to me like my eyes were blue.   Their attitude helped shape mine.  They were not sad or scared when they gave a brief explanation so neither was I.  In fact, at one memorable Kindergarten Show and Tell I actually showed my scar and told them what the doctors did.  ( My mother later got a call asking to remind me Scars are not for show and tell).  Kids are bullied for so many reasons.  Don't let them feel ashamed of their scars or heart defects  like they can only certain friends.  They will not embarrassed by it or hesitant because they see you are not embarrassed or hesitant by it.  You want you kids to feel normal.  We are normal.  We just have hearts that need or needed a little work.  Kids break their arms or whatever all the time and are never embarrassed by it.  They will tell their story to anyone.  You want your kids to feel the same way about their heart.

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Robin Davis
Madison OH
(440) 428-2562
(216) 905-1514
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