When Gracie was younger, she would bristle at being called “blind.” She would adamantly reject the term, saying instead that she could see just fine. Although she was born with only about 10% of normal vision, it was all she’d ever known, so to her it was normal.

Now, though, she knows her vision is terrible. It has worsened significantly over the past couple of years, and even she can no longer deny that she’s mostly blind. It’s a source of angst for us all.

Lately, Grace has had a wandering eye. It’s disconcerting; we will be talking to her and her eyes will be pointing in different directions. She, of course, does not realize this is happening, but to us, it’s an unmistakable reminder of how bad her vision truly is. A few days ago, I suddenly realized that it’s always the same eye that wanders—her right eye. She was in the bath at the time, and I was talking to her and watching her eye drift over my shoulder. I covered her “good” eye and asked what she could see.

She has almost no vision in the “bad” eye.

I was close enough to be covering her “good” eye with my hand, but she said she couldn’t see my face properly—it was just a blur. She could tell where my hair was because it was dark, but that too was blurry.

We’ve always known that Grace’s eye disease is progressive and would likely cause her to become completely blind. But thinking about an uncertain future is completely different than witnessing it firsthand. It’s heart-wrenching. How can we stop this? What can we do? How can we make her okay?

We can’t. There’s nothing we can do. It’s the worst feeling.

What I wouldn’t give to have her see the world with full vision! What I wouldn’t do to let her see the vibrance of colors, the beautiful details of faces and flowers, the wonder of watching words on a page transform into whole new worlds.

But I can’t. There’s nothing I can do. I can’t help her; I can’t give her vision, no matter how much I want to.

Just like any parent, I want to be able to kiss the boo-boos and make the ouchies go away. But I can’t make this go away. Nothing I can do will prevent her vision from deteriorating and eventually disappearing entirely. It makes me so sad to think of all the things she won’t ever see—Elliot’s face when he’s grown up, for example, or her own babies’ sweet faces when she becomes a mom.

Parenting any child comes with a thousand heartaches. Parenting Gracie is no different. But the thousand heartaches are a lot different.

Just like any parent, I want my children to grow up to be responsible, caring, happy adults. I want them to dream big and work hard to make those dreams come true. I want them to have every opportunity, to do anything they want, to become good people in their own rights. Technically, I suppose all of that is still possible for Grace, regardless of her vision or lack thereof. It just might look a little different for her.

Eventually, this heartache will fade and we will adjust to the newest version of the new normal. But for now, it stings. Our poor sweet girl goes through so much.

I just wish I could make it better for her.