Not all Survivors Have Scars

There’s this graphic making its way around social media. It says something along the lines of: There’s a word for kids who lose a parent and a word for people who lose their spouse, but there’s no word for a parent who loses a child.

While I suppose it’s true, it’s also not. Because I think there is a word.


Because that’s what I am — that’s what we are.

We survived when the doctor told us “I have bad news.”

We survived when our baby was taken from my arms and rushed to the NICU, Mr. B quickly trailing behind.

We survived as the doctors told us over and over “we found something else.”

We survived as we distraughtly waited in the surgical waiting room — three different times — for word that Penelope would live to fight another fight.

We survived sleepless nights and middle-of-the-night dashes to Penelope’s room when one more thing went wrong.

We survived the looks of sadness on the doctors’ and nurses’ faces as they said there was really nothing more they could do.

We survived the night we held our baby in our arms as she took her last breaths.

We survived the funeral home and the looks of pity and the never-ending “what can we dos.”

We survived spreading Penelope’s ashes.

We survived when the phone stopped ringing and the letters stopped coming and everything became quiet.

We survive walking in the apartment at night and hearing the neighbor’s baby crying as we look at each other, knowing that could have been us.

We survive the still-awkward conversations and uncomfortable silences because people still don’t know what to say to us.

And every day we survive knowing that so many people have what we desperately wanted. What we desperately want.

Some days, surviving is easy. But some days, surviving is hard — and we do it only because we have each other to lean on. But we survive.

Because there is no other option.

During Congenital Heart Defect Awareness Week (Feb. 7-14), CHD survivors are encouraged to “rock their scars” and put a face to this leading cause of infant mortality.

But, as I’ve learned, not all survivors have scars. Mr. B and I don’t have physical scars. But our emotional scars? We will carry them with us forever.

And the landscape of our hearts, too, is forever changed.

We fought the good fight right alongside our Penelope. And while she won many, many battles, she lost the war. And we lost it too, the second we kissed her forehead and told her goodbye.

So, this short piece? It’s me rocking my scar — as a CHD survivor.

My family

My family, the day before Penelope Joy died.



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8 responses to “Not all Survivors Have Scars

  1. Thank you for sharing this. Thank you for sharing her. Thank you and Bobby for surviving.


  2. very true. very true. raw and real…


  3. Wendy warren

    I just want you to know this: you rock!


  4. Bethany

    That sweet picture made me cry. I have enjoyed reading your blog. We have kept your family in our prayers.


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