Saturday, March 1, 2014


A writing professor once told me, "Start writing your story. Don't plan for the end before you begin. Simply start writing, tell the truth, and see where you go."

Once I started following his advice, my bad poetry improved dramatically. And my pen started teaching me.

I think about that now as I pen Kate's story. So badly I want to control the outcome. I want to know how long we will be in the NICU. I want to know a specific diagnosis. I want to know if she will ever be able to use her hands or legs. I want to know how long she will have her trach. I want to know what her story will be.

So I ask. But, the answer is always the same.

Wait and see.

I hate waiting. This is why I rummaged through all the Christmas presents in my mom's closet every December. (Sorry, Mom.) This is why I swallow novels in a day or two, neglecting basically everything else. I need to know the outcome. But, I can't know it right now.

I must instead simply live the story, tell the truth, and see what I learn.

So far, I've learned that miracles exist. So many prayers have been answered-- each time a doctor gives good news, I feel my God holding my face in his hands and pulling my nose close to His to say, "Trust me."

Yesterday, Kate weaned off her ventilator. (I got to hold her for the first time in a week and a half!) Also, her hip ultrasound was normal! And, she will get to try a bottle sometime in the next few days. Her doctor said, "Kate is defying all the odds."

My God whispers, "Trust me."

I've also learned that hard things happen. And they do not immediately resolve. We still have a long way to go before we get any conclusive diagnosis. We still have several years of physical and occupational therapy ahead. We still are learning about all the particular challenges that come with caring for Kate's trach.

And still, my God whispers, "Trust me."

I think King David heard this whisper. His Psalms rustle palpably with this whisper. While he tells of doubt, distress, destruction, he also tells of a God who is a Rock, a Refuge. And he tells of the beauty of waiting.

He writes in Psalm 40:
I waited patiently for the Lord,
and He turned to me and heard my cry for help.
He brought me up from a desolate[a] pit,
out of the muddy clay,
and set my feet on a rock,
making my steps secure.
He put a new song in my mouth,
a hymn of praise to our God.
Many will see and fear
and put their trust in the Lord.

And so I trust that in the waiting there is beauty. In the waiting I will grow. In the waiting I will sing a new song. And in the waiting God will get glory.

Prayer requests for this week:
-That Kate would continue to breathe well off the ventilator.
-That Kate would learn to eat through her mouth, despite the challenge of swallowing with her trach.
-That Lee and I would quickly and confidently learn to care for Kate's trach.
-That Kate would keep making great progress so that she can come home soon!
-That God would prepare Avery to be a gentle, understanding, protective big sister of Kate.


  1. Thanks for sharing Shannon, I'm so happy to hear all the positive news! Love y'all!

  2. Praying for you and Kate. Our daughter spent the first weeks of her life in the hospital as a "floppy baby," and it was months before the doctors finally diagnosed Prader-Willi Syndrome. She underwent many challenges in growing up, but she now leads a good life as a 33-year old adult.