Sarah's Story
Turner I found this journal entry from a Caringbridge webpage that I have been following. It is written by the Mother of a ten-year-old girl with Neuroblastoma. It was written when she was first diagnosed (three years ago). The girl has recently relapsed and is back in treatment at Duke. As a parent of healthy children, but as someone who meets so many that are not, this story touched me deeply. It has given me further insight into the terror and sadness of the parent of a very sick child. Immediately after reading this, I emailed the mom and asked for permission to share it on our webpage.
Two girls whose stories I have been following died of Neuroblastoma this weekend. It was sobering to read about their deaths on their Caring Bridge sites and to be slapped in the face again with the reality that they died from the cancer my daughter has. Medically speaking, her chances of survival are no better than theirs were; in fact, her chances are no better than any of children I have heard about this year—-child after child after child who has died from this horrific disease.
I read another website earlier today and the dad was saying that when he hears all the grim statistics, his intellect takes it all in but somehow his emotions don’t quite grasp it all. And to tell you the truth, I think that is the Lord’s mercy because in the backs of our minds, all we Neuroblastoma parents know the odds of survival are highly unfavorable for our beloved children. And yet it’s not something we can dwell on or ponder at length because our emotions are telling us that it’s time to rejoice simply because our children are still with us, breathing, eating, laughing, LIVING! That is all we need for right now.
I’m having a hard time picturing Sarah in the scenarios I’ve reading about lately where rapidly spreading disease takes over the body in a matter of days and brings about immense suffering and pain. Hospice, morphine, seizures, grief, a child’s cry of pain— there’s at least one family somewhere out there today walking the final steps of this cancer journey and experiencing those very things; they’re experiencing the beginning of the end of the life of their child.
But my emotions can’t go there right now; instead I’m going to concentrate on this afternoon when I watched my “seriously ill” daughter wolf down a huge lunch and ask for seconds. I saw her tease her brother, chase her dog, and run up and down the stairs to her room. Earlier today, I saw her don a frothy, frilly dress for church, brush her hair and put in a pink hair band with a bow. I watched her walk down the hallway to Sunday school, nonchalantly swinging her shiny purse and Bible and waving to little friends along the way. I watched her saunter along and my heart drank in the sight; I watched her little curly head disappear into a Sunday school classroom and I lingered just for a minute to inhale the perfume of the joy that she always leaves behind.
I turned away from that hallway and my mind went to the other little girl who died today and I pictured her mom dressing her for church just a few short weeks ago, not realizing how few Sundays were left for her to do that. And I wondered how many Sundays do we have? How many days of school? How many birthday parties? How many hugs? How many homemade cakes with love stirred in? How many bedtime stories and morning kisses? How many?
I know very well how quickly this disease moves and that in as little as a couple of months, she could be gone. But I also know that her disease could remain stable and she could survive for “quite a couple“ of years! It’s a strange place to be – embracing the hope and joy of the moment and dreading the fear and pain of the future, all the while trying to keep my sanity and to hold on to the peace that God promises.
But for today I will put other thoughts aside and honor the memory of two sweet angel girls who I’ve never met, angels who died from a disease I wish I’d never heard of. Today is a day to pray and hope and wonder; it’s a day to hold my silly, frilly princess close to me and to be comforted by the steady rhythm of her sweet little heart.
This monster called Neuroblastoma may very well think that it’s winning the battle. However, Neuroblastoma doesn’t have the power to shackle the angels who are swiftly winging their way toward the smile of heaven, angels who are sailing away to a place where every little one is at peace, far from needles, chemo, morphine and tears cried in the shadows of a lonely hospital room.
I’d rather Sarah not fly to that place anytime soon, but I’m so glad that whenever her time comes, she’ll be ready. She told me recently that even if she dies as an old lady, her wish when she gets to heaven is to be eight years old again. It truly is a wonderful age and whether she lives it out here on earth or up in heaven, she will be extravagantly loved and she will be in gentle hands.
And to all the children who have already made the journey—be watching at the gates to welcome into your world of joy the little ones who are yet to come. And if Sarah should ever be among them, tell her that her mommy is still breathing in the perfume of the joy she left behind.
-Author, Becky Smith
