Syracuse, NY 13210
Volume 13, 2013
I Hate You, Charlie. I Love You, Charlie.
Let me tell you about Charlie.
Charlie drives me mad. He’s always there, like that third wheel who never gets the hint. Whether we’re shopping, on vacation or out to dinner—Charlie is there; hanging on us and making his presence known to everyone who passes by. He even rests under my pillow at night, whirring away while we all sleep. I should be used to him by now but I still find him annoying. He could be described as a “stage four clinger”—if he wasn’t a machine.
Charlie is my daughter Joy’s feeding pump. Joy, now three years old, had surgery to sew a feeding tube into her stomach when she was still an infant because she can’t swallow properly and has a hypersensitive stomach. At first, Joy would tug on Charlie, curious about this new object within her reach. She quickly learned, though, that each innocent tug hurt and now she barely touches the tube at all. It’s an accepted appendage to her; if she could talk, she would probably ask me why I don’t have “a Charlie” also.
My husband and I started calling the pump “Charlie” shortly after Joy and he were fastened together and the name stuck. There was no reasoning or rationale behind the name, much like Joy’s doctors still have no reasoning or rationale as to why she has trouble swallowing or why her stomach often goes on strike without warning. Joy can only tolerate miniscule amounts of formula per hour for most of the day and throughout the night. Without Charlie, Joy would slide right off the growth chart and into oblivion. I hate that Joy needs Charlie to live—literally. This thought often keeps me awake into the wee hours of the morning, listening to Charlie humming along next to me. Still, I do a little “happy dance” in the doctor’s office every time Joy gains another pound.
Charlie is a rectangular, off-white and teal plastic machine that is approximately the size of a Kindle. He has a window that displays how much food Joy has been fed and how fast the formula is pumping through the quarter inch tubing. There are also some buttons next to the window that let us program these rates and volumes, according to recalculations by her gastroenterologist every time the pediatrician informs him that Joy’s weights have plateaued in her biweekly weight checks. Charlie resides in a small black backpack especially made to store a feeding pump, the bag that we pour formula into (which has clear tubing on the bottom we connect to Charlie and then to the feeding tube in Joy’s belly), and a special compartment for an ice pack (necessary since Joy is continuously fed about two ounces of formula an hour for twelve hours overnight and it must be kept cool). Along with her two daytime feedings, Joy is now connected to Charlie for fourteen hours every day. At night, before we all go to sleep, I plug Charlie in to recharge. Our pale gray and white striped comforter is now embellished with an intricate maze-like design of black wires and clear tubing flowing with her white formula.
Charlie’s significance took on even greater meaning when Hurricane Sandy hit our area in October. While all of our neighbors were stocking up on canned goods and candles, I was hoarding clean water (to mix formula) and checking that Charlie and the backup pump (that one never got a name) were both fully charged. Luckily, we only lost power for two days, but I paced around the bedroom that evening thinking up as many options as possible on how to get nutrition into Joy and keep her hydrated if the blackout went on for an extended period. I can pour two ounces of formula through her vent (a funnel-like device that lets us decompress her belly when she gets bloated) every hour, brave the storm and drive Charlie and Joy to the nearest hospital (twenty minutes away on a sunny day and no traffic) to use their backup generators or see if I can somehow rig Charlie up to the charger in my car. The fear of Charlie running out of power hounded me like an irate Chihuahua, demanding my full attention until the hurricane passed.
We must take Charlie into consideration during simple everyday activities most parents consider routine. Up until a few months ago, Joy was connected to Charlie continuously during the day as well as overnight. Charlie would sometimes get caught under my feet when I picked Joy up from her baby blanket on the floor or snag on chairs as I walked around rocking her. She would scream and howl as I rubbed her belly and tried to explain that Mommy didn’t mean to hurt her. I soon learned to check where Charlie and his tubing were before I’d cuddle Joy close to me or dance around with her in my arms. Charlie’s one more item to remember when we leave the house, one more monthly expense, and one more reminder that I—Joy’s mother—can’t save her. But Charlie can.
Joy’s feeding therapist has told us not to get too attached to the idea of Joy eating full meals. “Maybe Joy will be able to enjoy a bite or two of pureed veggies if she can coordinate her swallow enough at that particular time,” she explained and suggested we think of feeding therapy as a way to exercise Joy’s mouth muscles. Still, I like to envision a time when my husband, Joy, and I are at the dinner table and she’s scarfing down a big bowl of macaroni and cheese—and then asks for more. I know that day may not come. Charlie may hang off the back of Joy’s chair for parts of the day, and keep her company in bed at night, for years to come. We don’t yet know when or if Charlie will ever get off our backs.
I know Charlie is a necessity. If he weren’t here, Joy wouldn’t be either. And although to me my daughter is perfection, Charlie symbolizes everything that no parent wants their child to endure: physical pain, being “different” and an intimate, too early understanding of how fragile the human body can be.
As much as we initially disliked Charlie, my husband and I have ultimately welcomed him into our family. When Charlie gets dirty, I clean the area where we load formula into him with a damp cotton swab, pack his power cord and Joy’s feeding bags when we go away, and I would probably have trouble falling asleep without his constant whirring. Even with the extra care and attention he requires, we love Charlie. We love that he gives us Joy.
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