I'm a new "heart warrior mom" my baby boy has HLHS and he is the first success case in our region. "Baby warrior" is a term that I have been listening for the last 13 months and something that is very painful for us (my husband and I) is that our own family doesn't understand this condition, the always says..."oh, don't worry anymore he is healthy now, he's at home"... We spent 9 months in the hospital since he was born and we lived bad and good moments, now I received a lot of comments like: "why you don't go out?, don't be sad he is ok now; all you lived is only a nightmare don't worry anymore...and so on.
Thanks for your perspective! I never thought about the pressures the term Heart warrior may put on my daughter and want her to know that it’s okay to be scared and she doesn’t have to be brave all the time. She’s 6 with BAV and she’s just starting to understand that her heart will never be “fixed” so there have been some emotions and I always want to be open and answer all of her questions and make sure that she knows all of her emotions are valid so thank you for that!
I hate the warrior moniker. Warrior emplies a skill set and strength that I don't have. Struggles and pain yes. But CHD is just a plague and an uending one. It most often subsumes the rest of me. I also hate the implication of well you are better now so Be POSITIVE. No, I am relieved, sad , angry, jealous.....
I have, at times, called my son all of these names. Born in 1984, in Venezuela, with Shones Complex, he was in heart failure for most of his childhood, adolescence, and young adulthood. He has been pacemaker-maker dependent since he was five, and he had an artificial mitral valve implanted when he was 24, which changed his life but also has made him take Coumadin every day and carefully monitor his INR. And he is the funniest, most joyful, upbeat, and sensible person I have ever met. Yes, he is a miracle, yes, he is my hero. And so are you. I understand the discomfort, of course. As my son told me, when he was 15, "you don't know what it is like to be me." No I don't, but I do understand the need to feel normal and part of the world...chd is a heavy burden, for the person with a heart defect and for the family. Yes,maybe it isn't particularly heroic to simply do what one must to live. But it is the grace that I esteem, the willingness to live and love despite the fear and the pain.
I also find the term #Warrior to be #Cringe. Maybe even a little #cheugy in the vernacular of the youth.
I'm a #MSWarrior and my son was a #HeartWarrior. They are labels I hate - along with the labels #heartmom or, shudder, #boymom. Must we cling so dearly to such stupid sounding labels?
But I used them, not often but when I did used them unironically. My son was a #heartwarrrior because it was much less depressing for me as a mom to say that to someone than it was to tell them the whole complicated and messy truth. I refer to myself as a #MSwarrior because this diagnosis and new and it feels sorta nice that there is a community of people with this disease that identify with strength. But you hit it on the nose - bravery and strength aren't optional here. Are you strong and. brave if you have no choice?
I’m a grandmother raising my baby granddaughter with CHD. She’s only 21 months and has already endured 2 open heart surgeries with more to come. I appreciate you sharing your insights. I want to make sure I get her the helps she needs as she grows older. Also, whenever people find out about my situation they say, “You’re a great grandmother.” That’s kind, but it leaves me feeling empty. I’m not sure why and your candor about being called a warrior was helpful.
I have never thought about the titles we are often given. Titles like “Heart Warrior” or “Heart Hero.” But they are kind of a cool titles. When I think back on my life at age sixty-two I have to say I have had a very blessed life. Not an easy life but a blessed life with fairly good health after my corrective surgery in 1974 at age 13 yrs old. I just recently found out about the ACHA! Where have I been? I found this whole world of CHD people of all ages I never knew existed! I am now on the ACHA FB page. When I read some of their stories and the battles they face with their health I am amazed because they are way younger than I am. After my surgery in 1974 I have not had any heart issues other than the usual shortness of breath and not being able to keep up with my friends during exercise. I learned to deal with that. In 2018 I started having some heart issues like shortness of breath just walking up our driveway and the stairs to get into the house. I see my cardiologist on a regular basis and I deal with it. But, the CHD people out there facing surgery #3 and more procedures and congestive heart failure. I want to be a “Heart Warrior” for them. The Doctors and nurses that work with CHD people are the real “Heart Hero’s “ and “Heart Warriors.”
I'm a new "heart warrior mom" my baby boy has HLHS and he is the first success case in our region. "Baby warrior" is a term that I have been listening for the last 13 months and something that is very painful for us (my husband and I) is that our own family doesn't understand this condition, the always says..."oh, don't worry anymore he is healthy now, he's at home"... We spent 9 months in the hospital since he was born and we lived bad and good moments, now I received a lot of comments like: "why you don't go out?, don't be sad he is ok now; all you lived is only a nightmare don't worry anymore...and so on.
Thanks for your perspective! I never thought about the pressures the term Heart warrior may put on my daughter and want her to know that it’s okay to be scared and she doesn’t have to be brave all the time. She’s 6 with BAV and she’s just starting to understand that her heart will never be “fixed” so there have been some emotions and I always want to be open and answer all of her questions and make sure that she knows all of her emotions are valid so thank you for that!
I hate the warrior moniker. Warrior emplies a skill set and strength that I don't have. Struggles and pain yes. But CHD is just a plague and an uending one. It most often subsumes the rest of me. I also hate the implication of well you are better now so Be POSITIVE. No, I am relieved, sad , angry, jealous.....
I have, at times, called my son all of these names. Born in 1984, in Venezuela, with Shones Complex, he was in heart failure for most of his childhood, adolescence, and young adulthood. He has been pacemaker-maker dependent since he was five, and he had an artificial mitral valve implanted when he was 24, which changed his life but also has made him take Coumadin every day and carefully monitor his INR. And he is the funniest, most joyful, upbeat, and sensible person I have ever met. Yes, he is a miracle, yes, he is my hero. And so are you. I understand the discomfort, of course. As my son told me, when he was 15, "you don't know what it is like to be me." No I don't, but I do understand the need to feel normal and part of the world...chd is a heavy burden, for the person with a heart defect and for the family. Yes,maybe it isn't particularly heroic to simply do what one must to live. But it is the grace that I esteem, the willingness to live and love despite the fear and the pain.
Thank you for sharing your perspective. That does sound like a heavy burden, and I'm glad to hear you son finds joy and humor as well.
I think parents of children with CHD have a profoundly different perspective than that of their children, who are simply living their lives.
Absolutely.
I also find the term #Warrior to be #Cringe. Maybe even a little #cheugy in the vernacular of the youth.
I'm a #MSWarrior and my son was a #HeartWarrior. They are labels I hate - along with the labels #heartmom or, shudder, #boymom. Must we cling so dearly to such stupid sounding labels?
But I used them, not often but when I did used them unironically. My son was a #heartwarrrior because it was much less depressing for me as a mom to say that to someone than it was to tell them the whole complicated and messy truth. I refer to myself as a #MSwarrior because this diagnosis and new and it feels sorta nice that there is a community of people with this disease that identify with strength. But you hit it on the nose - bravery and strength aren't optional here. Are you strong and. brave if you have no choice?
Cheugy! Maybe that's the word for it. :) I'm glad to hear you've found community. That makes such a difference.
I’m a grandmother raising my baby granddaughter with CHD. She’s only 21 months and has already endured 2 open heart surgeries with more to come. I appreciate you sharing your insights. I want to make sure I get her the helps she needs as she grows older. Also, whenever people find out about my situation they say, “You’re a great grandmother.” That’s kind, but it leaves me feeling empty. I’m not sure why and your candor about being called a warrior was helpful.
Thanks for sharing, Patty. (Sorry, just seeing this comment now!)
I have never thought about the titles we are often given. Titles like “Heart Warrior” or “Heart Hero.” But they are kind of a cool titles. When I think back on my life at age sixty-two I have to say I have had a very blessed life. Not an easy life but a blessed life with fairly good health after my corrective surgery in 1974 at age 13 yrs old. I just recently found out about the ACHA! Where have I been? I found this whole world of CHD people of all ages I never knew existed! I am now on the ACHA FB page. When I read some of their stories and the battles they face with their health I am amazed because they are way younger than I am. After my surgery in 1974 I have not had any heart issues other than the usual shortness of breath and not being able to keep up with my friends during exercise. I learned to deal with that. In 2018 I started having some heart issues like shortness of breath just walking up our driveway and the stairs to get into the house. I see my cardiologist on a regular basis and I deal with it. But, the CHD people out there facing surgery #3 and more procedures and congestive heart failure. I want to be a “Heart Warrior” for them. The Doctors and nurses that work with CHD people are the real “Heart Hero’s “ and “Heart Warriors.”
Thank you for sharing, Cindy, and welcome!