Finding a Name

05/13/2015 11:55 am ET | Updated May 13, 2016

Mother's Day came and went and with it the familiar struggle to find a label for myself. I like definitions for things. Labels are comforting and secure. Call it a personality trait, but 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, so the argument went, 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 have come to a different conclusion for why we haven't found a special title for a person who loses a child.

Chloe was a spunky, beautiful, curly headed 2-year-old with a life of breathless wonder ahead of her. My husband Philip 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 may 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. Ok, the disease is going to 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."

The week that Chloe laid in hospice, I packed up all but a few of her clothes, toys and furniture and took them to a center that houses women struggling with addiction and their children. It was one of a series of difficult things I had done since hearing her diagnosis of metachromatic leukodystrophy. I stared blankly at the tiny, new coat she had never even worn. In the anticipation that is second nature to a parent, I had 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. How would this 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. That day a journey to find a new way to parent Chloe began.

A couple of days before Chloe died, Philip and I sat beside her bed and made her this sacred promise. 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 have done if she had lived. This promise has been a driving force in our lives ever since and has crystallized choice after choice for us. While it requires honesty on our parts and constant reassessing of our own emotional health to stay grounded, is our new parenting paradigm.

In 2014, Philip and I founded the Chloe's Fight Rare Disease Foundation whose mission it is to fund research that finds treatments for rare and underfunded diseases such as metachromatic leukodystrophy. We are often called heroes but we aren't. We make the choice to tirelessly raise money, ceaselessly promote, obsessively research for the reason that all moms and dads make their choices. 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; a good parent. When a cure for metachromatic leukodystrophy is discovered (and if I had a part in it) if my name is never mentioned I won't care. 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 the word. The word is "parent".