The Story of Grace

Lily has been extubated!  Now she's fighting the full-face bi-pap mask and withdrawal from some of her meds.  This is just as hard to watch.

We've come a long way.  The nurses keep saying how she looks like a different child from Monday when she was admitted.

I think she won this one.

But others have not been so fortunate.

One night when Dave was here, I got this text:

They lost a little one up here tonight. . .

And we have lost so many little Trisomy 18 babies lately. 

Oh, how my heart breaks for these families.

Yet I sit here, and I am looking at my little girl. . .

. . .and she is still here! 

Dave's text later said

Made me think about the "Angel of Death"

walking around up here.  

Don't know why I had that thought.

But I took comfort in knowing that he/she

laid her hand on Lily and said,

"Not just yet."

Not.  Just.  Yet.

I have no idea why Lily's life was spared and so many others' lives were not.  None of it makes sense.  None of it seems fair.

It's not.

I cannot help but feel that in that sparing, we have a responsibility.  I imagine that Angel of Death looking at us, her hand on Lily's little head, peacefully saying, "Not just yet.  Go live her story."

And boy, is it a story I love to live!

It's a story of life and love.  Hope and faith.  Courage.  And strength.  And growth.  A story of laughter...and tears...and worry.  And fight.

It is the story of Grace. The story of our Lily Grace.