Stories from the Fog

Kim's Story

A journey that's taught us to walk comfortably-uncomfortable in the fog of Grief.

My "grief story" starts in May 2013 — just about six months after Mr. B and I got married. I was three months pregnant and the ultrasound tech walked out of the room and a maternal fetal medicine specialist walked in with the words "I have some bad news."

All they could tell me is that my precious daughter would be born with a severe heart defect. They didn't know how bad it would be — only that it would require surgery and long-term hospitalization and care.


I suppose that was the day my grieving began. 


I grieved what I knew motherhood was supposed to be. I grieved everything I imagined pregnancy was supposed to be — glowing, beautiful, womanly, hopeful, exciting, joyful. I grieved everything my daughter, my husband and I certainly would be missing out on in the future, knowing we'd be facing lifelong medical care and complications.


I had no idea that those concerns would be minimal compared to what we were greeted with when Penelope Joy was born at 36 weeks, 6 days. By the time she was a week old, her chest had been opened up multiple times for heart surgery. And our hearts? They were pulled out every single time the alarms sounded, doctors rushed in and Penelope Joy was opened up again. She also had an operation on her nose as well as multiple other procedures to keep her alive.


Our precious girl fought hard for 38 days until, finally, Mr. B and I couldn't bear her suffering anymore. That day, we looked at her and we knew: she could fight no more. We were being selfish keeping her alive. So, that night, we held her close as the doctors removed tubes and wires and tapes. As Mr. B held her, and I held onto them both, we gave her the only gift we could give her. We gave her freedom.


And then we gave her a bath, washing away all the signs of what her tiny body had been through. Aside from the wound-not-yet-a-scar in the middle of her chest, she almost (almost) looked like a "normal baby."


In the early days, our grief was definitely a fog. But there was stuff to do, so we couldn't settle into it. There were decisions to make.


"What funeral home would you like to use?"

"Cremation or burial?"

"Flowers or plants?"

"Church or funeral home?"

"Where do you want to run the obituary?"

"What would you like to have her ashes put in?"

"Where should we put her ashes?"

"What do we do with all the stuff we'd been given or purchased to prepare for welcoming home our precious daughter — even though she never came home?"


No parenting book I'd ever seen prepared me for this. None of my friends or siblings who were parents could have prepared me for this. There is no manual that can help a new parent through the loss of his or her child.


And, as I'm still learning — five years later — there is no manual for grief.


Even today, the grief comes in waves.


Grief has become a constant companion, sitting quietly by, coloring every part of our life. Grief — as I've come to know her — isn't good nor bad. She's just … present. Most days I can forget she's there and go about living my life, loving on my family and enjoying the very blessed existence I have. Now and again, she'll gently tap me on the shoulder and remind me with a whisper that she's there, remind me that my life could have been so different. Other days, she is commanding of attention, smacking my face whenever a happy little 5-year-old girl skips past holding hands with her mom.

And, please don't tell me, "but you have two beautiful happy, healthy, thriving children!" They are not replacements for my Penelope Joy; they will never replace Penelope Joy. Just as I'm pretty sure you wouldn't willingly give up one of your kids because you have others, I would give anything to have all three of my children with me. But I can't, I don't. So I find a way to live with that. And I know that every single second — even the difficult ones — I have with my two surviving children is precious. 


I've come to walk comfortably-uncomfortable in the fog of Grief. Thankfully, I have Mr. B by my side — though, admittedly, his experience with Grief is different than mine. We've both experienced the loss of Penelope Joy differently, and we both are walking this journey as individuals while we walk it as a couple. We have unique ways of processing our sadness and unique outlooks on what her death meant to us. But we committed from the beginning to traveling the journey together — even if sometimes we have to walk separate paths. My sadness is not his sadness, just as his is not mine. But we are both changed by it.


Good-bye changes people. I know it did me. And it changed my world and every single component of it. I don't know what my grief journey's going to look like down the road. But I do know this: I am a better person for being Penelope Joy's mom. She made me a better woman. And she definitely made me a better mom to her two younger siblings.