Losing Chloe

For the last five years I’ve struggled to find a label for myself. 

I like definitions for things. Labels are comforting and secure. 

I often feel if I could just find a word that describes the person I’ve become since losing my daughter I would somehow be able to own that title and act the way a whatever-the-word-is acts. 

I once heard a person say that we can find titles for all kinds of loss. A woman who loses her husband is a widow. A man who loses his wife is a widower. A child who loses his or her parents is an orphan. 

But, the argument goes, the loss of a child is so deep and painful that humanity hasn’t been able to find a word for it. 

Maybe that’s true. The thought resonated with me when I first heard it. But, in the years since losing Chloe, I’ve come to a different conclusion for why we haven’t found a special title for a person who loses a child. 

Dreams dashed

Chloe was a spunky, beautiful, curly headed 2-year-old with a life of breathless wonder ahead of her. My husband and I had already woven more hopes and dreams for her future than I could count. 

When she was diagnosed with a terminal degenerative neural disease and only a slim chance of a cure, my husband and I did what any young parents would do for their baby: We fought like hell to save her life (or ensure she would live with the best quality of life possible) and adjusted our expectations as best we could. 

With every new piece of nightmarish diagnosis, we tried to shift our parental paradigm to what her future would look like. 

My God, Chloe may not be able to dance at her own prom. I just want her to be able to walk with a walker. OK, I just want her to be able to walk AT ALL. What? The disease may cause intellectual impairment? I just want her to graduate high school. I just want her to be able to talk a little, maybe express her basic wants and needs. I just want my baby to live. I just want my baby to die without too much pain. 

Saying goodbye 

The week that Chloe lay in hospice, I packed up all but a few of her clothes, toys and furniture and took them to a center that houses mothers struggling with addiction. 

It was one of the most difficult things I’d done since hearing Chloe’s diagnosis, metachromatic leukodystrophy. I took down the tiny, new coat she had never even worn, hugged it against me and wept. 

I’d bought her the coat ahead of winter. This is what parenting is. Countless acts of caring for our children. Tangible acts of love and care. Thinking ahead for them. But how would this little coat accomplish the purpose I as a parent had intended for it? 

I knew the hard answer in this new existence of mine — by being worn by a little girl who needed it. Chloe was no longer that child; and I knew in my heart of hearts that stubbornly keeping it wouldn’t be for her anymore. That day, a journey to find a new way to parent Chloe began. 

Eva and Chloe Barnes play six weeks before Chloe passed away at age 2 due to metachromatic leukodystrophy, a terminal degenerative neural disease. 

Promising to do good

A couple of days before Chloe died, Philip and I sat beside her bed and made one of the most sacred promises of our lives. We promised her that we would do all of the good in the world we were meant to do as well as all the good she would’ve done if she’d lived. 

This promise has been a driving force in our lives ever since and has solidified choice after choice for us. While it requires honesty on our parts and constant reassessing of our own emotional health to stay grounded, it’s our new parenting paradigm.

In 2014, Philip and I founded Chloe’s Fight Rare Disease Foundation with a mission of funding research that finds cures for rare and underfunded diseases such as metachromatic leukodystrophy. 

And we’re making progress: Researchers at the University of Minnesota soon will be starting a research project covering lysosomal storage diseases such as metachromatic leukodystrophy, thanks to a $15,000 donation from Chloe’s foundation. 


Above: Erica Barnes cuddles with her daughter Chloe, who passed away at age 2 due to metachromatic leukodystrophy, a terminal degenerative neural disease. Photos by Kristin Prideaux / Argente Photographie

Always and forever

We’re often called heroes. But we aren’t. We tirelessly raise money, ceaselessly promote, obsessively research. So that, at the end of the day we can lay our heads down on our pillows and call ourselves what we all want to be called — good parents. 

If — when — a cure for metachromatic leukodystrophy is discovered, I won’t care one bit if my name is never mentioned, even if I’ve had a part in it. 

Somehow Chloe will know, and I will have done my job for her. 

You see, parenthood doesn’t end when your child dies. 

I am and ever will be the mother of Chloe Sophia Barnes. 

So, back to the assertion that society cannot find a word for a person who has lost a child: I believe society has a word. 

The word is “parent.”

Erica Barnes lives in Hopkins with her husband, Philip, daughter, Eva, and son, Cade. She blogs at huffingtonpost.com/erica-barnes. Learn more about Chloe’s Fight Rare Disease Foundation at chloesfight.org.