It's Her Life

Thanks so much for your feedback. I appreciate everyone who commented on my last post. Honestly, I am so relieved to know that I am not alone in the way I am feeling. The post on Teri's blog had me feeling so many different emotions, I honestly don't know where to start. I know I will be echoing a lot of what you sweet ladies said. First let me say that I truly enjoy reading the Inspiring Hearts blog. It gives me hope and insight into what an adult with CHD experiences and feels. And I sincerely appreciate her blogging for this reason.

However, after reading this particular post and then the comments, I felt pretty angry. How dare anyone blame us as heart parents for exploiting our precious children! Obviously, we love our children and we would never do anything intentionally to harm them. (As Katie said, we want to protect our precious heart babies even more so.) In my opinion, its perfectly natural and normal for us as parents to show off our children. I'm sure most of you would agree. Even if you don't have a child with a heart defect, you are going to take pictures (and probably naked ones) when they are little. Why should we not be able to take pictures of our childrens' scars? 

This brings me to another point. Teri said she would have been devastated if pictures of her had been posted online. A couple of things here. First of all, it is true: children are mean. We as parents would never, ever want to see our child being made fun of. It does hurt me to think of the possibility that someone would make fun of my precious babies. But children with and without various disabilities are made fun of all the time. Should that stop me from sharing our journey with others? That some possibility down the road, some middle school child is going to look up Emma Kate online and show this tiny, faded scar to others? If someone wants to make fun of my child as badly as this, then it is going to happen, regardless of what I post online.

Teri mentions that her mother did not take any pictures of her while she was in the hospital. I wonder why? Our childrens' scars, their heart defects, it is part of who they are. Personally, I want to document Emma Kate's life, scars and all. Of course, I want her to be proud of herself, to see how strong she is and what she's been through. That is her story; it isn't something she should have to hide from. Not only that, we live in a generation that is far different than it was in 1978. The internet is part of life, it's how we connect with one another. It is how all of you heart parents and I have connected. And it has also been a source of inspiration to others going through similar situations. If you read my comments, Crystal in IL said that, "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." I really appreciated reading that, Crystal. My prayer is that one day Emma Kate will see how her life has touched others and that she has given  people hope.

That being said, if Emma Kate comes to me one day and says, "Mom, I'm don't want to share my scars with the whole world," I think I will be able to appreciate that. And by all means, I will remove anything that she wants me to. This has definitely been a tough journey, and its only been 18 months. I can only imagine what life will hold.

It is interesting hearing from an adult CHDer's perspective. After really thinking it over, I can only come to the conclusion that this is just her opinion. (Even though she said everyone she spoke to agreed with her). Perhaps it isn't right for her personally to share her scars. Maybe it never has been. She has given us heart parents her opinion on what we should do to possibly protect our children from further hurt down the road. I appreciate her concern. However, I do plan to continue documenting Emma Kate's journey and our entire family's journey through life. I do not have a CHD. My daughter does. It is her life and it is mine.