Numb

I'm often asked how I'm doing these days. I don't mind the question. I'm glad people care and want to know. My typical answer is something along the lines of, "Okay." "Good" seems too positive. "Not well" seems too ominous and negative. "Okay" sums it up enough that most people give a knowing look and a conversation about the latest appointment or diagnosis ensues.

The truth is most of the time I feel numb. I give people updates on what's going on with Kaylee Hope but I don't generally get emotional about it. I hold my wife as she cries in agony and I stare blankly ahead, trying to be her rock, trying to love her yet feeling very little myself. I feel hurt for my wife and pain for my little girl. But mostly I feel nothing myself.

Then something flips a switch. The other day it was a coworker who stopped by my office to ask how I was. She was visibly sad for us and teared up as we talked. That got me going. And it was good to feel that human impact again.

Wednesday was a largely numb day. At the end of the day we started talking to a few couples we met at church about Kaylee Hope's story. We had been about to leave church. An hour and a half and a few tears later, the numbness was gone. Someone else was entering into our story, sharing in our grief, trying to understand the hurt we're going through.

That's what always seems to flip the switch for me. It's when I get a comment or email or text message from someone saying they're wearing purple or they're thinking of us or they're wiping tears away after reading about Kaylee Hope. That's when the switch is flipped. I feel like a normal human again, removed from the horribly depressing decisions I have to make, removed from the work or kids that serve as an often-welcomed distraction.

It's good to have that feeling. I'm glad it's not permanent. I don't think I'd function very well if my eyes were welling up with tears every 10 minutes. But I need that jolt that wakes me up.

My brother sent me a text message yesterday with a song that had been running through his mind as he thought of us. It's called "Waiting for the End" by Linkin Park. I'd heard it but had never really listened to it. I don't think I quite understand all of it and I'm pretty sure it wasn't written for a situation like mine, but some of the lyrics really grabbed me:

"This is not the end
This is not the beginning"
(This reminds me of my eye of the hurricane post 3 days ago.)

"Waiting for the end to come
Wishing I had strength to stand
This is not what I had planned
It's out of my control...."

"All I wanna do
Is trade this life for something new
Holding on to what I haven't got"

"All caught up in the eye of the storm
And trying to figure out what it's like moving on"

Here's the full song, in case you care to hear it (lyrics here):


(I find it somewhat ironic that this song comes from a band whose biggest hit is called "Numb.")

We had our first weekly follow-up ultrasound yesterday. There wasn't much good about it. Nothing looks better. If anything, things look worse.

For the 3rd ultrasound in 8 days, I held my wife as she cried. And once again, I stared blankly ahead, trying to absorb it all.

I love my baby girl with everything I have, but when I think of her being gone, I often just go numb.