The Talk

As nearly all of you know, Ruby has a over abundance of terms to describe her medical conditions. Velo-Cardio-Facial-Syndrome or VCFS, 22q11.2 Deletion Syndrome, and occasionally (however inaccurately) DiGeorge Syndrome are used to describe her genetic condition. In addition to this Ruby's heart defect can be described through a myriad of labels that mean very little outside of the CHD community. Tetrology of Fallot (ToF), Pulmonary Atresia, major aortopulmonary collateral arteries (MAPCAs), and a Ventricular Septal Defect (VSD) are the specific medical defects of her heart.

So...rewind a little over 3 years. These terms were all defining. I mean, they weren't in the sense that Ruby was, and is, my beautifully unique baby above all else, but still...they were all I had to go on as far as what to expect. So I treasured them. I became obsessed with them, like most parents of children with exceptional needs do in the beginning. I couldn't foresee the kind of child Ruby would become so I depended on these terms to give me the insight I so desperately needed. I would prattle them off to anyone who looked sideways at my child. Mostly because I was so proud of all she was in spite of these labels. They were so present in my mind. Always sitting forefront, ready to spring into action whenever I needed them. I was adamant about their proper usage and felt it my duty to spread awareness to every stranger I met.

But as time passed they became less important. I began to barely think of these terms in regards to Ruby. At medical appointments I occasionally struggled to recall some of the specifics, not necessarily about these phrases, but about her g-tube size, the date of her last surgery, the name of her old feeding pump, etc. I simply didn't recall the details. Ruby grew and became so much more than these labels. She became so many wonderful and crazy and normal things that my poor brain just didn't have room for all of these obsolete medical facts when it thought of her. She was just Ruby and all of the terms didn't seem to matter that much anymore.

Whether that lapse of attention to her terminology was good or bad I have no clue...it's just what happened. But now...now she is much older. With her age comes her big growing brain and all of its questions. Perhaps not exactly questions, but certainly a more sophisticated ability to understand who she is and what makes her unique. Now I have never been a person to shy away from open and honest explanations of all things biological with children. For example, Ruby knows where babies come from (at least an age appropriate version). She knows what makes males different from females, and so on. In fact she loves all things scientific and anatomy is no exception. We have books on the body and so forth and she thinks it's just awesome. She loves to explain to me how her food goes, "In my mouth, I chew it. It goes down my phosegus [esophagus that is] and to my belly!" So she is certainly able to grasp basic concepts.

Anyway, this means that I feel the need to explain, and very often over-explain, her heart condition to her. Sometimes these discussions are prompted by her noticing her scars, or her g-tube. And for whatever reason I've found that bit of the medical mumbo-jumbo easy enough to explain to her, even with my momentary lapse of attention to her plethora of labels. Obviously I don't get into the specifics of what MAPCAs are and whatnot, but she kind of gets it. And I suppose her heart condition has always been mentioned to her over the years, in spite of it not being a central issue, because she does see a cardiologist. Likewise she sees a GI doctor and her "tubie" gets plenty of attention so we've talked about why she has it. But...that whole VCFS discussion...I guess I kind of forgot about it.

It's not really an issue in her life. It's not like she sees a VCFS doc, or even goes to genetics because I learned really quickly how useless those appointments are. And it's not like she has a scar from her "VCFS surgery." She doesn't get purple fingers from it, or tire easily from it. She doesn't get bolus feedings from it, or get it snagged on her shirts...so it's not exactly a tangible thing to a 3 year old. And I suppose because of those reasons, I hadn't really mentioned it to her. In fact, I probably would have gone another year or two before having a talk with her about it, merely because it hadn't occurred to me.

That is until few weeks ago. Because around that time she found a pamphlet in an old diaper bag with VCFS printed on it with giant letters. Smart and nosy girl that she is, she shoved it in my face and asked me what it was.

Without really looking at it I said, "Uh...a pamphlet."

"What does it say?"

I finally looked at what she was holding and replied, "Oh. It's about VCFS."

"What's CVSS"

And then it hit me that she had no idea what VCFS was! I had completely dropped the ball! I never got how parents whine about having "the talk" with their kids until then. Sex? No big deal. Reproductive organs? I got this. Even heart defects? Sure, bring it on. None of these topics were even an issue because she has known about them forever. We never had to have "the talk" and hopefully never will because I think it's best to gradually mention all this stuff in increasingly appropriate language as a child grows. But I had totally forgot about the fact that I probably should have mentioned to my child that she has a genetic condition. I can't believe it never occurred to me!

So I basically fumbled the whole conversation since I was taken by surprise. I'm pretty sure she can't understand what chromosomes are, but in my state I sure blathered on about them.

"Uh, well you see, we all have chromosomes...uh...and we have a whole bunch of them...in fact we have pairs of them...you get one set from me and one set from your dad...uh...and they help to determine certain things about us...like...what color our hair is...and..."

As you can probably guess she stared at me with a vacant expression. She then flapped the brochure around in the air and said, "look it's like a bird!"

But of course I felt crappy for never having mentioned the phrase VCFS to her before, so I pushed on in a slightly more coherent manner.

Eventually I simplified things for her. I said something like, "You have VCFS. It's why you have a heart condition, and why you see so many doctors. It might be why you sometimes have a hard time around other kids. It might mean you learn differently from other people. There are tons of other people who have it, some people have it and they don't even know. Even I could have it."

Worried that I'd been too negative, which I certainly didn't mean to be, I amended, "It's not a bad thing. It just means you are that much smarter and stronger than everyone else because you are so amazing even with a tiny piece of your DNA out of the picture!"

She listened as well as any pre-schooler might, said, "Ok," and went back to making the pamphlet fly like a bird. But she must have processed some of what I said because when she found the brochure again the other day she declared proudly, "I have CVSS!"

So, did I totally suck at this!? I mean, I'm sure it's not that big of a deal because she is only 3, but I feel like I could've handled this better. Maybe I should be happy I fumbled with this now, so that I can have a better idea of how to broach the topic with her as she grows. I just feel like there is a lot riding on how she views herself, based on how I frame VCFS to her. Am I crazy? Is it not that big of a deal? I really don't know... I would hate to think that she thinks any less of herself because I screwed up a conversation about biology. I mean, VCFS isn't "bad." I guess the issue I'm struggling with is how to define it. Do I describe it as a disease? Because it's not. And that makes it seem so "bad." I want to explain to her that in some ways it's no different from a person who is genetically predisposed to diabetes, or having long toes, or sinus infections, or for having a giant genius brain that can do complex mathematics in 0.2 seconds. It is a part of who she is, and because of that could never be "bad." I just hope I will be able to help her see that someday. That she will view VCFS as a component of who she is, without being defined by it.