We are all human

Last night I read a question posted on FB. It was posted from a group I am a member of (It's My Heart) and here it is:


Only someone who is personally dealing with or has dealt with CHD truly knows how it feels. Give insight to people on the outside. What are some things family/friends said or did that were helpful/not helpful, not to hear/hurtful, or any advice for someone wanting to help but doesn't know how.

Now I read through the comments and was somewhat surprised because the typical responses were "think before you speak", "never ask the the mother if she caused it", "don't tell us everything is going to be fine", etc. I wasn't surprised by the comments themselves but how I didn't feel that way or didn't experience it the same. I opted in not posting a comment because I felt I would offend folks.

First let me say that although many of my friends haven't directly experienced something similar however I feel that they all had their own experience with P's diagnosis because of their proximity to me. I sometimes think when you are in the bubble of the hospital that you think those around you aren't grieving along with you (outside of the hospital walls). If they are true friends they too are trying to figure out how to process the information. It affects friends because they care about you and your. If you take yourselves out of your bubble you realize your friends/ family are just trying to be helpful and never intentionally hurtful. If the shoe were on the other foot would you know what to say, how to behave at all times? I think not. You must remember that everyone has their heart in the right place even if they cannot directly relate to your situation.

Recently I had a friend who's child had to undergo elective minor surgery. My friend was filled with worry (as she should be, this is her story happening to her child) and when I tried to reassure her (as any good friend would do) she reminded me that "compared to what you went through this must seem like nothing". Which is true but not really. It's true for the obvious, my son's surgery was to save his life and his situation was dire but the not really stems from the fact that as a mother any surgery is scary for your child. I sometimes think some CHD parents can get wrapped up in their child's health that they simply cannot understand that every parent feels for their child and their health and would give anything to insure their health.

Now I am not naive, I do believe my experience puts me an elite group that only other CHD parents understand. I just don't think we need to be hard on our friends. They have our best interests at heart and if we don't take the time to have an open dialogue you shouldn't assume they know what to do, say or how to behave.

I have been lucky. For the most part everyone I have been in contact with has been great. And if any were offensive at one time so be it. I knew their heart was in the right place even if their approach was not the best. Everyone was respectful. And isn't that all we can really ask for?