Charlotte will have her cardiac catheterization tomorrow morning at 9:30 CST. The last time she had a cardiac cath, in 2009, it led to her second heart surgery. This is probably the one fact of the last catheterization that I have withheld from her. We’ve told her that the worst-scenario outcome is another surgery, but we haven’t told her that that’s what happened last time. To say that I’m nervous would probably be to understate the obvious. Beyond the anxiety that any parent feels when their child undergoes anesthesia, for no matter how short or routine a procedure, add the anxiety about her heart and another surgery.
She has a lost of questions for Dr. Gossett that I hope he’ll have time (and patience!) to answer before the procedure. Among those is, “Will I have another scar?” She really doesn’t want any more scars, though she’s quick to say that she’s proud of the scars she has.
This question led me to search for an essay I started several years back and, I’m embarrassed to say, never finished. I’ll share here the “work in (halted) progress”:
Every summer morning, I insist that Charlotte puts on her suntan lotion before she gets dressed. She likes to help, so I give her the Waterbabies Sunblock Stick. Looking in the mirror, she carefully covers her face with sunscreen and then begins to paint a line down her chest, tracing her scar. “Especially the scar,” she says, repeating my mantra from the summer she was two, the summer after her second open-heart surgery. Now that she is four, she knows she has a scar and she takes care of it herself.
Like most children her age, Charlotte loves to look at her baby photos and hear about her first few months on earth. To her, the pictures of an 8-day old with a breathing tube, multiple IV lines, chest drainage tubes, and a bandage on her chest are totally normal. She’s not frightened by them. She can explain that she had splint on her wrists to prevent her baby movements from pulling out the IVs. She will recount that as the pictures progress, showing fewer tubes and wires and monitors, it means that the baby was getting better. Mostly she looks for the moment when Bubba, her beloved bear, appears at the foot of the hospital crib. To her, this is a normal babyhood. I think she’d be surprised to know that it was very different from that most of her friends experienced. In fact, I recently asked her to tell an acquaintance why she had the scar on her chest and she said, “I don’t remember.”
It is remarkable to me that she has no idea how remarkable she is, how exceptional her existence is. As a survivor of the congenital heart defect Truncus Arteriosus Type I, Charlotte benefited from a heart repair that is scarcely forty-five years old. Her defect was diagnosed when I was only twenty-two weeks pregnant.
Today, Charlotte knows how remarkable she is, but I’m still not sure she truly understands it. She is at once proud of her scar and self-conscious about it: She’ll wear shirts that show it, but doesn’t want anyone to ask questions about it. She likes being different, I suppose, but doesn’t want to have to explain why she’s different. I’m not sure what she really says about her heart and health at school. She says she tells her friend Taylor all about it, but no one else. We talk often about how to answer or deflect questions as simply as possible, with the minimal relay of information (unless she wants to give more). For instance, when her deskmate asked why she was late the day of the lung perfusion, the answer was, “I had a doctor’s appointment.” She wants to tell the truth; I explain that “the truth” doesn’t have to include every detail. There was, in fact, a doctor in the room last Monday, so her answer was true. Of course, I wonder if I’m teaching her ways to tell me the “truth” without giving me the facts, something which could be handy for her as a teenager.
When the nurse called with the procedure time and instructions for tomorrow’s procedures, Charlotte was in the car and heard the conversation. She was quite unhappy at the prospect of “no food or drink after 6:30 a.m.” and began to throw a tantrum. I staved it off, pointing out that none of us were happy about the procedure, but that it is simply a fact of who she is. “We all have to get through the day,” I told her, promising that her dad and I wouldn’t eat either and that we could leave through the front door and not the kitchen.
One day I’ll finish the essay I started about her scar. And maybe I’ll write that picture book that will help other children explain and understand their own scares. The problem, as I see it, is that there is no complete truth about her scar that satisfies. That scar (and all the others) are part of who she is, they are the bare facts of her being and her continued existence. Simply put, without them, she wouldn’t be here.
The facts are the facts, but the truth lies in her feelings about her scar and the facts it represents.