October 26, 2016

What Lurks Beneath the Surface:
Parenting in an Age of New Genetic Knowledge

When I was pregnant, I spent a good deal of time imagining what my child would be like. Would he have my eyes? My nose? My chin? Would his hair be dark like mine? Would it be thick? Would he be short and skinny, as I’ve always been, or taller, thicker? Would he have my smile?

I imagine this experience is fairly universal for people who are pregnant.  It’s only natural to wonder about the outcome.

Recently, our family has dealt with a darker side of this same game, one that none of us had really thought about. It began with my dad’s mother, back in 1981, when she passed away from breast cancer. I’ve shared this story before. When my aunt, her daughter, was diagnosed a few years ago, she underwent testing for genetic mutations that could explain our strong family history of the disease. We’d always known that we had that history, but at that moment, it took on a name—a BRCA-1 mutation—and a specificity that was different from the vague “remember to do your self examinations” boogeyman it had been in the past.

After my aunt’s positive result, her siblings were each tested, and sure enough, each of them tested positive. We’re now in the process of checking my generation, but as I sat with my dad in his genetic counseling session to explain his results—a session I didn’t need to be at, but that he had insisted I attend—I began to experience a whole new set of parenting fears. It was clear from my dad’s reaction and his questions that his primary concern wasn’t his own increased risks of cancer, but whether he had passed it on to his daughters and what the next steps were that we should each take. It was suddenly terrifyingly clear to me that I could take care of my children, nurture them, protect them, love them, provide them with the best medical care I could afford, and still have something sideswipe us unexpectedly.

What was in my genes?

This, too, I imagine is a normal experience for parents today. From understanding rarer mutations that cause serious illness to others that leave us vulnerable to diabetes, heart disease, and a myriad of other ills, we’ve all got a greater knowledge of how our DNA can be the blueprint that our health tracks along for the rest of our lives.

I have two boys. There is a chance that if I have the mutation, I have passed it on to them, but while it causes a higher risk in some cancers for men, it’s not the same as if I’d had daughters. I’ll encourage them to be tested when they get older, but it’s not the same sense of urgency that I hear in my dad’s voice when he chides me for not being tested yet.

I was reminded of the conversation with the genetics counselor as I reached a point in a book I’ve been reading. I’ve been reading Still Alice, and if you haven’t read the book or watched the movie, consider that your spoiler alert.

The book deals with a woman who, at just fifty, is diagnosed with early-onset Alzheimer’s disease. She is tested and finds that she has a mutation that means, with 100% probability, the possessor will develop the disease, at least with current medical rates.

Alice is dealing with her own diagnosis, but she’s also dealing with a deeper undercurrent of fear: she has three grown children, and each of them has a 50% chance of developing the mutation. When her oldest daughter also has it, Alice feels responsible.

I found this scene really moving because another genetic monster has stirred the surface of the childrearing pond in our home in the past few months—depression.

One day back in September, my older son’s school counselor called to say that we needed to come in. My spouse and I met in her office, and she said that another student had reported that our older son had said he experienced suicidal thoughts. When we talked to him, he said it had been going on for a while.

I shouldn’t be surprised. He’s nine, nearly ten, and I can remember writing my first suicide note at ten years old myself. I remember that feeling like I just couldn’t go on any longer much younger than that. It’s been the shadow that has dogged nearly my every step.

And yet, it was still an asteroid impact straight to my gut. There was this intense sense of guilt, this knowledge that my genes could be the culprit. There was this moment where I envisioned my child, this being that I love so fiercely, going through every moment that I have gone through. I felt like a rug made of banana peels had been ripped out from beneath me.

As parents, we are constantly fighting for better for our children, and here was on thing that I had given him, a thing that he will live with for the rest of his life, that I can never make better. It’s just there, lurking in his DNA like it lurked in mine, pacing the double helix and waiting for a moment to snare him.

I’ve written pieces before in support of parents of children struggling with their mental health. I’ve written them as the child of parents whose children struggled with their mental health. Here, suddenly, I find myself on the flip side of that equation, and it doesn’t add up. It wasn’t something that I had planned for, and no matter how many different ways I try to solve for x, I keep circling back to that future that I began imagining for him shortly after I knew I was carrying him, and how this may impact it. In so many ways, I wonder if I should apologize. I wonder how to explain. How much will he understand? He still seems so young.

We live in an amazing technological age, an age when we are learning more about our bodies and natures than we’ve ever known before. In some ways, though, that knowledge…it’s a double-edged sword.

So what do you do when your nine year old tells you he does, in fact, have suicidal thoughts sometimes?

If my experience is any guide, you cry. Not to him, because you don't want to scare him. But while he's watching TV, or playing video games, while you're in another room folding laundry, you cry. You wonder why. You rewind nine years of interactions in your head and wonder what you've done wrong. You know all of this is unreasonable, because you've been on the other side, you've been a child suffering with depression, but you still can't bring yourself to stop. You have a driving need to pinpoint the exact moment that you screwed up and your defective genes fired. You  know that's not how this works, it's not how any of this works, but you do it anyway.

You fall apart, but you pull yourself back together. You search your insurance's list of providers for a mental health service in your area. You call and make an appointment. You feel your guilt and fear fan angry flames when you are told that your child can't be seen for over a month. You curse the fact that you live in a place where it is so difficult to access mental health care, and you hope beyond hope that this therapist clicks, that you have a lightning strike of luck, because you can't imagine going through this over and over again trying to find someone who does.

Most of all, you hug him really tightly, and you tell him how important he is to you. You don't have all the right words, but you try. You try as hard as you can.

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