Getting here: The start of the unraveling

We left early on a Wednesday morning, driving 10-ish hours to Gillette.

Visiting old friends was a blessing unforeseen. I was hoping to stay at a hotel, for space and ease of putting baby Yana down at night. I’m glad we didn’t. They were worth it.

Once checked in, it has been non-stop doctors, wires, and giggles. This little girl is so happy, so kind to all who enter, and continually willing to be looked at, checked, and poked and prodded. Her spirit is so sweet.

Ours is exhausted. And anxious.

Yet, whenever I take a break. When I walk to get more coffee or simply to get moving for a short bit, I am reminded that we are not alone. Our suffering is not unique. There are many - MANY - who are bringing their loved ones to this hospital, carrying bags of clothes, hopes, questions, and fears. There are many who will leave with questions unanswered, prayers seemingly ignored, and hearts overburdened.

Are we going to be one of them?

Facebook is filled with family and friends celebrating life, friendships, and opportunities. We sit, in a room, dreading what is to come.

How will life change?

Will our daughter be spared?

Why is this happening?

We are tired - already - of answering so many questions. Of holding on tight to hope. Of searching for understanding. We are clambering in the dark yet nervous for the light. What will it reveal?

And am I strong enough to endure it’s truth? That my daughter’s life must forever be changed?

I just don’t think I can bare it.

I love my little girl. Just as she is, and what she could be.

Lord . . . I do not understand.