For you news junkies out there, you may have heard about the 180-lb tumor that was removed from a 32-year-old Vietnamese man, Nguyen Duy Hai, in Ho Chi Minh City. If you saw it, you probably had an “oh my god,” “gross,” “wow that’s incredible” or a “can you imagine?” moment. I’ve had those moments too. I’m embarrassed to admit that I’ve also had the “I’m so glad it isn’t me” reaction. I think all these reactions are perfectly normal. It’s one way that we remind ourselves that despite all our complaints, there are still many, many people who have it worse than we do in some way, shape or form.
But for me, this story was an unpleasant reminder of what could happen to my little girl. Just six short weeks ago, I talked about the struggle for calm in the face of my daughter’s neurofibromatosis (NF type 1). Because it turns out that this Vietnamese man also has NF1.
Now look. Just as many others must have, I had a “we are so lucky” moment when I read the story – We have the resources, insurance, means and access to get her any help she needs regardless of how severe here NF is. We may not be able to “save” her from it, but we can certainly mitigate its impact on her life. I know the circumstances are different.
In my calmer moments, I also recognize that we can’t dwell on the worst case scenarios. According to the Children’s Tumor Foundation, “most cases of NF1 are mild to moderate.” And while “learning disabilities are five times more common [up to 60% of] in the NF1 population than in the general population,” that’s frankly something I worry relatively little about.
Unfortunately, this story came on the heels of K’s week-long ambulatory EEG, which her neurologist scheduled to identify the cause of odd shuddering episodes – episodes that have increased in frequency over the past week or two from once every couple weeks to nearly every day. These episodes seem to bother me a lot more than they bother K, but this barrage of reminder on the potential effects of K’s condition has required more than one deep breath in the effort to reach some semblance of calm.
And so we’re left with three options:
Flight: Stick my head in the sand. Pretend there’s nothing wrong. And really, maybe there isn’t. Again, most cases of NF are mild. She may have nothing more than a few café au lait spots and a small lump or two. At worst, perhaps some help for yet to be defined learning disabilities. Heck, my divorce will probably scar her far more than her “condition.” Certainly not much more than your average child.
Fright: I could freak out about everything. I could spend hours researching, reading, analyzing. I could take her to every specialist and be hyper sensitive to changes in her health or behavior – to the point where I begin to imagine things that aren’t there. Surely this behavior would make me more prone to catching things early, which is only good, right? Right? Hmmm…maybe not.
Fight: The third option is about arming yourself for battle. It doesn’t necessarily have to mean that you go to war – because maybe last minute peace negotiations will pan out and the war you expect never comes to your doorstep. But that doesn’t mean you don’t prepare. You learn about your enemy (Neurofibromatosis). You familiarize yourself with the different paths the enemy might take (learning disabilities, tumors, epilepsy, scoliosis, disfigurement, cancer, optic gliomas…). You identify your allies (doctors, specialists, non-profits, support groups, family and friends). You prepare, but you don’t live in fear. You become educated, but not overwhelmed. You hope the day will never happen, while developing a plan in case it does. And you never, ever forget how to laugh. To enjoy life. To experience. And you teach your kid how to do the same thing.
Guess which path I’m going to choose?