Beyond IS: "She's full of life"

"She’s full of life!"

The statement stopped me in the middle of a conversation. It was my mom who said it, so casually, so truthfully. And she was right. Emma is full of life. She always has been.

If you’ve followed Emma’s journey—our journey—you know there have been more than a few moments filled with pain, confusion, and that aching refrain: Why me? Why her? Even during the high points, that question lingered. The grief of a diagnosis doesn’t disappear just because you’ve learned to smile again, and you figured out how to cope.

But over the years, something shifted in me, not all at once, and not in some dramatic moment of enlightenment. It happened gradually. I started noticing that I didn’t always think about epilepsy when I thought about Emma. There came a day, as I cuddled with her, when I caught myself thinking, I’m just so glad she’s mine. And that was it. No, but I wish… Just pure, uncomplicated gratitude.  She’s mine.

For years, my internal monologue had been, I’m happy she’s mine, but I wish she didn’t have epilepsy. 

And now? I’m happy she’s mine. Full stop.

If you’ve ever met Emma, you know… she’s Tigger. She is joy in motion, always smiling, always connecting, always being. That smile of hers doesn’t make sense when you consider what she’s been through. But somehow, it’s always been there.

When she went in for brain surgery, I was terrified we might lose that part of her. They told us that some of her mannerisms could change. I kept thinking: What if she stops smiling? What if that light dims?

But the next day, post-surgery, she smiled. (I have a photo to prove it.) And I breathed again.

There are ebbs and flows in our journey. I know there will be more days when I ask myself Why me? Or, why her? The grief with this diagnosis isn’t linear. But right now, in this moment, I’m living in the thank God it’s me.  Thank God it’s her.  Because, as my mom reminded me, Emma is full of life, in every sense of the word. And that is rare. How many people do you know who are truly full of life?

Emma IS. She embodies it. She radiates it. She gives it.

And, how lucky am I to be her mom? I gave her life, but she’s given it right back to me, again and again.

- Monica