A Good Day Today

Chaia had a good day today. Last night was very hard and she has bounced back and stabilized. She is sedated and intubated. Her little heart is distressed and the challenge is figuring out what is causing it. The possibilities are seriously endless in what could be causing the extra work.

If stability is maintained into tomorrow, we could begin talking about extubation, removal of blood pressure meds, etc. This would be a big step in seeing how Chaia's heart can support her body.

Akron Children's has been fantastic. Chaia has been on 'one to one' care with a nurse each day and the nurses have been attentive and compassionate.
After the drama last night, they made up a new bed for her and then put her little hair bow ribbon in to make her sleep like a princess.

Mom and Dad are ok. It is hard to stand by helpless. It is hard not to hold her. It is hard to see her in discomfort and pain. But she's a warrior princess and will crush whatever this is she is facing.

On a brighter note...It's time for me to break out the rice! My sister Becky and her husband Chuck are parents to a new little boy! Camden Michael Long joined the family this morning at 1:45 a.m. and is off to a good start!

Wanting perseverance to complete its work.

Teach Us How to Pray

Received messages from all over the place in prayer support. From Florida, South Carolina, Georgia, Texas, Michigan, Kenya, Virginia and so on. The number of people praying is humbling and powerful.

I've been thinking about how we should pray.

The first instinct is to pray that she'd be healed, brought to full health and we could walk out of these doors now. That is one of my heart's desires.

But in some ways, this is a selfish prayer that doesn't allow the full work of God to take place.

I know this is counter-intuitive, but James tells us "Consider it pure joy when you face trials of many kinds, because you know that the testing of your faith produces perseverance. Let perseverance finish its work."

I want God's glory and fame. I want to draw close to God. I want the work that He intends this for, in Shaina, in me and in Chaia to finish its work. Prayer to get out of that process may alleviate immediate discomfort and distress, but it may leave us in shallow waters when God desires to take us to the depths.

I want her healing. But I want His purpose more. So pray in this way.

Do You Trust Me?

I've seen my little 3 month old get poked by at least 50 needles today (not hyperbole). In her heels In her hands. In her wrists. In her head. In her groin. Repeatedly...Poked. Prodded.

I've heard Chaia scream in pain with decibel levels and octave ranges I've never heard from her before.

I've seen her get life flighted from Orrville to Akron Childrens Hospital.
(Little Bitter that she has that knocked off her bucket list before me...the helicopter...not the life flight)

I'm staring at her in the PICU right now with more cords, IVs, drugs, monitors and blood than one kid should have in a life time.

I saw one hospital staff spend over an hour trying to get a line fed through her artery and then give up.

There's been talks of pneumonia, pulmonary edema, heart defects, enlarged hearts.

And in all these circumstances a still small voice speaks to the depths of my heart: DO YOU TRUST ME?

Do I trust that God can heal her if He wants to bring His name glory?

Do I trust that God can let her go if He wants to bring His name glory?

Do I trust that God has what is best for Shaina and I, even in the midst of one of the hardest days we've been through as a family?

We had a time of prayer with some friends and family who came this evening and Shaina's sister shared from Psalm 91...I'm stuck on the first two verses. "You who live in the shelter of the Most High, who abide in the shadow of the Almighty will say to the Lord, 'My refuge and my fortress; my God, in whom I trust."

Shelter and refuge have a direct correlation to abiding and trusting.

The question haunts me tonight as we try to rest.

And it haunts you too, in every circumstance and situation:

Do you trust me?

Parenting for Dummies Part One

There are any number of dreams I have for you.

Any number of ambitions, hopes, aspirations.

Any number of idols I might cling to.

I even feel the pull on my heartstrings to be derailed from God's calling for you...to protect you...to preserve you.

But in the end, only one prayer will suffice.

Whether it is one more breath or one more century of breaths, may your life be leveraged for the glory of God, indebted to the grace of God and captivated by the heart of God day after day.

And may my heart, dreams and expectations stay out of your way.