We Read to Know that We Are Not Alone

The Faces of CHD Pinterest Awareness Challenge began officially 10 days ago.  During those 10 days, I have been amazed and elated and overwhelmed by the response to the board.  I just finished pinning face #166 to the board, and I believe the 900+ followers will exceed 1000 by the end of the weekend.

I want to extend my thanks to all of the heart families who have sent us your stories, pinned and repinned, blogged and tweeted and told everyone you know about The Faces of CHD.  I am grateful to all of those who don’t have heart stories of their own that have been touched by yours, and have followed the board and repinned the stories.  And, I’m especially grateful to Stefenie and Becca for jumping in and making sure this really happened.  You are all wonderful people, and I’m glad to be a part of this with you.

If you have spent any time reading the stories on this board, you will have noticed that while all of the faces featured have something in common–congenital heart defects–their stories and experiences vary a great deal.  We have infants, toddlers, children, teens, and adults on the board.  We have mothers and fathers, sisters and brothers, aunts and uncles.  We have boys and girls.  We have faces who are thriving, faces who are struggling, and faces that are no longer living.  I think it’s fair to say the board is a decent sample of the CHD community.

My heart is very full as I read the stories that accompany each new face onto the board.  Like so many other parents, I have sat in a waiting room, my entire future hanging on the outcome of an incredibly complex surgery.  I have entered the PICU and had my first encounter with a ventilator be the one that is keeping my child alive.  I have prayed silently as the ultra sound technician gets very quiet and takes more and more and more pictures.  I have plead for one more day, and I have uttered the most difficult sentence in prayer, “Thy will be done.”  And as I read your stories, I realize that I share these experiences with many, many others.

Novelist and theologian C.S. Lewis said, “We read to know that we are not alone.” Never have I been more conscious of that than during this last week.  I have already heard from parents who ask that their contact information be shared with another family, because their children share the same rare defect.  I’ve heard from mothers that have read about a child who’s unusual symptoms are so similar to their own child’s and are concerned that child may not have a correct diagnosis.  I am sure that there are other connections being made that I’m not aware of.  I encourage you to extend an arm of support and make those connections if you can.

Thank you again for sharing your stories and working to make the faces known of those who have been affected by congenital heart defects.

 

Comments

  1. I love this ! The stories are moving me to tears every day. What an amazing thing this has turned into, thank you for starting it.

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