Charlotte Rose Kelly died eight months ago at the age of 5.
When she was 2 she was diagnosed with neuroblastoma, a horrible cancer that preys on children. Her parents, Greg and Patrice, to keep family and friends informed about Charlotte’s treatments, wrote updates on an Internet page provided by Children’s Hospital, Boston. For three years they had faith bigger than a mustard seed.
Their entries were suffused with hope and love and the belief that Charlotte would get through this long, harder-than-they-ever-imagined journey.
Patrice writes still, though she wonders if she’ll continue. “Every second of every day is painful. Every second of every day I am lonely. Every second of every day our family struggles . . .
“A typical day. Wake up. Did I sleep? Kind of. Maybe. Something is bad, very bad. BANG. Punch in the stomach. Charlotte is gone. Really? Desperate, breathing hard, confused, trying to acclimate to reality. My baby is gone. Dead. In the ground. I will never touch her, hold her, hear her again. (Trying to breathe). I need to get up and get the boys ready for school . . . ”
She writes about naming her daughter. “I always loved the name Charlotte. When she was born, I waited a couple of days to make sure that Charlotte was the name I truly wanted. She was to be my last child. And she was my only girl . . . “Owen, Shane, and Charlotte. Those three names happily flowed from my lips every day. My children. That was how I signed cards, filled out forms, and said my prayers. ‘Please watch over my children, Owen, Shane, and Charlotte,’ Now — hearing her name is beyond awful. It makes my heart hurt. Charlotte is a chant in my head constantly; yet, it brings so much searing pain. I want to talk about her non-stop, but cannot breathe when I realize over and over again that she is dead . . .
“So many caring, loving people call. I see who it is, put on my ‘game face’ and my ‘game voice’ and answer. I chat away. Small stuff . . . The boys come home. I make sure I have made beds and showered. They notice when I don’t. They have been through enough.”
Erin Santos, whose seven-year-old daughter, Isabella, died in June of neuroblastoma wrote in Caring Bridge (www.caringbridge.org/visit/isabellasantos/mystory): “You know children die from cancer. But to see it is unlike anything you have ever imagined . . . however you picture a child’s life ending can’t compare to what it is really like . . . How can we live in a society that allows this to happen? People are living lives and not looking behind this curtain because if they saw what I saw, they would do everything they could to prevent it from happening.”
How do we lift the curtain? Why are we more dedicated to finding a cure for wrinkles and age spots than for diseases that kill children? Why isn’t the health of all our children a national priority?
Patrice found a list recently that she made last year when Charlotte was having cancer treatments at Camp Sunshine. It was for Charlotte’s 5th birthday party. “Evites, farm animals, clowns, Sesame Street cake. Everything was ordered. And later, everything was canceled. Charlotte started her final decline, and was too sick to celebrate her birthday. I could barely get the words out when I called sobbing to cancel the farm animals. I actually asked the cake people to put her Sesame Street cake on hold. I believed she would have a party. I believed, up until the minute she took her last breath, she would live. I was a fool.
“This year, as I plan my beautiful, brave, baby girl’s birthday, I am simultaneously finishing her gravestone. It is almost done, and that in itself terrifies me. What do I do afterwards? Nothing. Live without her . . .
“I am not, and will never ever be, comforted by Charlotte’s death. We will always be mourning our Charlotte. No promises of afterlife, seeing her again, her being ‘pain free’ etc., is consoling . . . She is gone. I can’t breathe. She is really gone. This is life without Charlotte.”
There will be a Mass for Charlotte’s 6th birthday, Sunday, today, at St. Francis Church in Braintree at 9 a.m. All are welcome.