I never get used to it…that moment when death, the death of another leukodystrophy child, stops me cold in my tracks. Even as the world around me keeps spinning — little girls running through my home, laundry churning in the machine and neighbors talking outside my door — I suddenly find myself gasping for breath. My world stops.

I am part of a community where these leukodystrophy diseases are like sinister wolves lurking in the nearby foliage. We are constantly aware of their presence. Vigilant. Protective. Keeping Watch. But they still pounce and steal our children. It’s shocking. It’s gut-wrenching. It’s Devastating… Every time.

But sometimes I know them. Sometimes I really know these kids. I have held their frail frame. Or kissed their tender forehead. I have smelled the fragrance of their translucent skin. Or heard their contented sighs. I have looked deep into their piercing eyes. Or run my fingers through their soft, often-tousled hair. I know them. And I love them. And I know their parents. And I love their parents.

Last week it was Anna. Anna Taylor.

My world stopped. I was gasping for air. My heart ached.

But it didn’t ache for Anna; she is now gloriously healed and no longer suffering. It ached for Anna’s parents, Sarai and Nathan. It ached in unity. It ached in intimate familiarity. It ached in empathy.

The day Judson died, I was thrust into a world of knowing a pain so deep that I was certain it would suffocate me. I couldn’t imagine a world without my boy. I couldn’t fathom no longer holding or kissing my sweet little man again. I couldn’t imagine how the world could keep spinning when my Juddy no longer lived on this earth.

I still can’t. But every day, this is the world I live in.

Sarai and Nathan can’t imagine a world without their Anna. Their pain is so deep it threatens to suffocate. They can’t fathom no longer holding or kissing their sweet little lady. They can’t imagine how the world keeps spinning when their baby Anna is no longer on this earth. But every day, this is the world they will live in.

I never get used to it. I never get used to the death of another leukodystrophy child. And I never want to. For these are the moments that keep me grounded — ground in faith, grounded in hope, grounded in grace. These are the moments I stand in solidarity with my leukodystrophy family acknowledging the world is not as it should be; there are wolves seeking to devour and destroy. The world is NOT as it should be.

But some day it will be!