There Is No Art in Heart

My daughter has an autoimmune disease that might shorten her life... and I'm the one who gave it to her.

Every parent's worst nightmare, of course, to be responsible for something terrible happening to your child. And, to be honest, I had little idea that this was a possibility before I had kids. I knew that one branch of my family all seemed to have bad luck when it came to getting sick early in life and that about half of them died when they hit middle age. But that didn't have anything to do with me, right?

Wrong. Not bad luck, after all. Instead, it's a gene that's a ticking time bomb, and one that my daughter has inherited.

There are other things that I've given her, of course. My dark brown hair, my brown eyes, and a love of creativity. She became a published writer when she was just 9 years old—I showed her how to send out her poetry to editors, and she got a wonderful poem about mermaids picked up by a kid’s magazine for publication.

I was so proud of her that day—not because she got accepted, but because she got rejected before she reached that acceptance. She had to face several letters from editors who said her work was “not quite the right fit” before she hit her publication goal.

But... she kept on going. Rejection couldn’t hold her down. That stubbornness is also a complicated inheritance from me. One that I sometimes wish I didn’t have to face head-on as she nears her teenage years.

Not to mention she has an unstoppable passion for all kinds of art, not just writing. She creates short, animated cartoons on a phone app that are wonderful and fun and sometimes sad. She draws the images all by herself, and her room is peppered with other examples of her art, her desk splattered with paint, and so are her clothes (much to my chagrin when doing the laundry).

All of this inherited promise that I helped nurture in her. And then this terrible legacy also.

Love is never easy. It’s complicated, like giving life to and raising a child and then finding out that you might have also given her this ax hanging over her head. Or perhaps it’s also the hard truth of my own mother admitting when she saw me with my daughter, “You’re a good mom. I never was,” and still loving my mom anyway, with a pain born from the conviction that I will not be like her, will not try to intentionally cause harm to my loved ones. Like when she told me at my daughter’s first birthday in front of friends and family gathered together in celebration that I had been a “mistake” when I was born. She probably meant “accident”—not “happy accident” because my birth was unplanned and unwanted—but that was not the word that came out. (I know Freud would have something to say about that.)

For so much of my life, I’ve had one goal: to be a great mom. To show my daughters love without fail, to make sure that they know they are the most important people in my life. To have them feel in their bones that they will succeed in whatever they do as long as they try. Win or lose, it doesn’t matter. The trying is the most important part.

And so far, they have taken this lesson to heart. They are curious and smart, full of hugs and sometimes angst. Even when they’re mad or sad or upset, I am their rock.

But to me, this diagnosis is a big “L” on my scoreboard and something I never saw coming. I planned for everything else, but not for this. I try not to let my feeling of failure show because I don’t want this shadow cast on my daughter’s hope and optimism for her unlimited future. She has the magic of childhood still to live, and it’s my burden to bear as her mom—for however long I will be there for her.

Because you see, I got the bad gene too. And I have my own struggles to face now, and the possibility hanging over my head that I might not be there for her through all the future ups and downs she will face in the future. That maybe I am lying to her when I tell her and my other daughters that I’ll always be there for them.

And perhaps that’s the worst part of love—the lie. That love will be there forever.

I just hope that there is healing for all of us, even if it’s only in our hearts.