Wednesday, February 24, 2010
Attention Heart Parents!
I just read a really interesting blog post. Quite honestly, I'm not sure what I think about it; I'm definitely having some mixed emotions. I really want to process what I've read and then maybe write a post on my feelings about it. I'd love for you to go read it and give me your take on it. Thanks!
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Interesting. I can see the point that she is making, but I totally and completely disagree. I think that the most important thing is raising a child with confidence. I refuse to not take photos of my child on the incredible journey he has been on. My parents took plenty of embarrassing photos of me as a child (those awful glasses in the 4th grade, the naked baby photos, etc.) and that is part of my treasured memories. Looking at photos that show myself as a child being very very sick in a hospital make me feel empowered by where I am today. A scar does not make someone a target for ridicule and scorn. If in 13 years, my sons classmates try and find some photo on the internet of him with scars, I should hope that my son has already with pride told them about his scars. I hope to raise him with kindness and confidence so that his scars can make him proud of who he is. All kids need this and no matter what, there will always be a mean kid who will try to make fun of another classmate. What really matters is instilling a sense of knowing who you are in a child and letting them develop their own sense of accomplishment...whether that be for surviving a difficult health condition or any other thing. I am interested in your thoughts Bethany!
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p.s. This is not to say that I do not feel like it is incredibly important to protect my child on the internet from predators and other things. I try to take certain precautions for that purpose, but one other point I think that this woman is missing is that fact that each of our lives touch one another in a profound way. Those scars had inspired me and many around me to live each day in the present and experience a fullness of gratitude. And I would never dream of changing that!
I am much like you. I am so glad you sent me to the website, and I have so many thoughts right now, but I need to ponder them a bit more. It almost makes me angry.
ReplyDeleteI just wonder, did her mother or father not take any photos of her as an infant in a diaper, or (GASP) with her "birthday suit" on? I have precious photos online and in albums of both of my babies with no clothes on showing their beautiful chubby fannies, and all. Am I not to take/post photos of MC, simply because she has a scar on her chest. I think not. I treat her just as I would my oldest who has no scars.
Thanks for sharing. I plan on posting to the young lady with a few of my opinions, when I have had time to "settle" down" and just let her know from a mother's prospective. (A mother from this day and age where "mom blogs" are so common. :)
Isn't it sort of a right of passage to be embarrassed by your parents at one point in life anyway? ;) I have no regrets!
Kerri
How ironic that you just posted this!! I read this blog this morning and have been pondering my thoughts all day. I was shocked because I had never even thought of it from that point of view before. I have always just thought of it as I am posting these pictures because this is Aly and this is part of her story. And, like Alli mentioned, I want her to be proud of all she has been through, not ashamed or embarassed. My husband and I were just discussing it and he completely disagrees with her. BUUTTT, at the same time, I cannot say what it would be like because it's not ME that had to grow up with these scars, it is my daughter. I hope you get more comments on this post because I am really interested in getting more heart parents and hopefully some other people with CHD's perspective.
ReplyDeleteSo glad you posted about it too! I read Teri's blog this morning and after reading it, I was outraged! How dare she think we're "exploiting" our babies this way! As heart mom's, I think we do our best to protect our baby's from any more hurt. They surely have had enough. We feel compelled to bring awareness to a very serious disease and our goal is to ultimately spread hope to others going through a similar experience. I know that before having my daughter, I looked at so many pictures on support group sites, trying to prepare myself for this and wrap my mind around the complexity of my unborn daughter's health. It brought comfort, fear, and some "pre-requiste" knowledge that was much needed for me and my entire family to understand what CHD meant for all of us, especially for Maddie.
ReplyDeleteAnyway, after calming down a bit and venting to my husband and my mom about her entry (then also looking back at how many scar pics I've posted of Maddie on our blog, I'm major guilty in this department) I tried to look at it from her perspective. Like Jennifer said, we're not the ones having to grow up with these scars. We look at it from a mother's perspective and are so proud of them, not self-conscious at all. We know all that our child has been through (most of which they'll never remember, thank God) and that scar represents so much growth for us...I look at Maddie as a Godsend for our family, she truly is a special child and the lessons that she's taught to so many is more than most of us will reach in a lifetime.
I do appreciate Teri's perspective and opinion on this subject. I can't imagine what it was like growing up with a CHD in the 80's or being the mother of a child with CHD back then. Scary. But times have changed...we are a society that now documents our children's lives and we do so for them. I want Maddie to see these pictures someday, for her and the rest of us, to get the entire "gist" of it, I believe it's necessary. This is a HUGE part of her life and forever will be, she can't hide from it just as she shouldn't hide from her scars. I pray I'm doing the best I can for her, as with all of my kid's and my gut feeling tells me to continue to document her story, unfortunately, there will have to be some hospital pics and scar pics. Hell with the kid's who try to use this to blackmail her or tease her for it in the future...these types of kids will find anything and everything to bully about anyway. I do believe Teri is trying to help us and we can respect other's opinions, even if it doesn't match our own. I'm thankful that we are in the day and age to learn from those who've experienced this before us. We do need to listen.
Can't wait to hear your thoughts Bethany!!! I've shared enough of mine now :)
My daughter's scars are probably more extensive than most heart kids. She had major complications after her Norwood so she had many chest tubes, her chest was left open for an entire month so there was old blood left under the inclusive chest bandage that caused skin breakdown,ECMO and various line sutures, blood clots settled into her toes/feet so she is missing most of her toes on her left foot and the tips of her toes on her right. She has a quarter sized bald spot on the back of her head from a bed sore and several spots down her back from bed sores. She has a g-tube and Nissan surgery. There is not a single inch of her that is not scarred. I have to massage the scars on her chest and belly so they don't get tight and restrict her range of motion. I kiss each and every one of her scars daily. She is a beautiful girl with laughing brown eyes but I do fear some people might see her scars and think she's a freakshow. That thought makes me angry. She is a miracle and I want people to see her as such. Her scars tell a story of extreme struggle and pain. She is not supposed to be here but she is and I'm going to celebrate it and capture every moment I can. Keep posting your pictures ladies and sharing the miracles. We as a heart community need to see the reality of the fall and miracles that can and do happen. It reminds us there is always hope.
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