Sky and Soul

When I look at your heavens, the work of your fingers,

    the moon and the stars, which you have set in place,

4 

what is man that you are mindful of him,

    and the son of man that you care for him?

David posed this question in Psalm 8 and I ask it, too.  I took a walk this week, not under the darkened sky, but in the light of day.  I had been feeling a little overwhelmed inside, so I went outside where it's vast and broad and where I feel smaller.  Certainly, under the sky, I feel smaller and my feelings seem smaller.  There is so much air!  I can breathe all I want with extra to breathe more.

It's one thing to know that the sky is so big.  It's another thing to go outside, look up into it, and feel its bigness.  The roof of my house sometimes shields the effect that openness can have on my soul.  God's roof reminds me that I am small, but that I am also dear to Him, not so small to be unknown.  How can it be?

I can say that I know something about His love.  I know that He drives fear away from me.  He encourages me daily to trust and rest.  He gives me the grace to enjoy pregnancy with Wylie.  He offers wisdom and guidance about our plans as a family even when there are so many unknowns.  

He is mindful of us--of all of us.  Go outside and know.

For Wylie

For Wylie:

I love being with you right now, connected right at the center of both of us.  Your movements thrill me every time I feel them.  You are so small and I am starting to feel big, happily big.  I am so glad for who you are and how you are even though I'm just beginning to know you.  I like you so much already.  Just being together is the best.

Sinking

"16 People swear by someone greater than themselves, and the oath confirms what is said and puts an end to all argument. 17 Because God wanted to make the unchanging nature of his purpose very clear to the heirs of what was promised, he confirmed it with an oath. 18 God did this so that, by two unchangeable things in which it is impossible for God to lie, we who have fled to take hold of the hope set before us may be greatly encouraged. 19 We have this hope as an anchor for the soul, firm and secure. It enters the inner sanctuary behind the curtain, 20 where our forerunner, Jesus, has entered on our behalf. He has become a high priest forever, in the order of Melchizedek." (Hebrews 6)

I am one who has "fled to take hold of the hope set before us."  With the good news of Wylie's heart healing and her growth being reported by the doctor yesterday as "good," I have felt buoyant and light.  Last night, I read some Trisomy-18 stories.  I was looking for hope in them.  I did not find the kind that I needed.  I wanted to hear about exceptions, miracles, longer, more normal lives.  There are so very few of those.

I had an ultrasound this morning.  Wylie's fists were clenched, her heel rounded--tell-tale indicators of the Trisomy-18 genetic anomaly.  Tears came and more tears came--tell-tale indicators of a momma's broken heart.  Again, the hope I needed could not be found with my eyes.  In fact, they are still burning, sore from looking and weeping.

I called Gavin from the car.  He is out of town and couldn't be at the appointment.  "The possibility of her death is sinking in," I told him.  We prayed.  Gavin asked God for His strength, courage, wisdom, peace, comfort, and help.  "We need you, God."  That was the cry of my heart, too.

I drove home so, so reluctantly.  How can I face my children?  What do I say about this sinking realization?  What do I do?  I prayed again.  "Ok, Jesus.  Will you please show up for us today?" and I got out of my car.

I gathered them to find hope together. "Will you pray with me, children?"  Yes, they were all willing.  I told them about Wylie's balled fists and the sinking in my heart that she just might not live long at all.  We prayed and then the children shared what was on their hearts and in their minds as a result.

"Wylie has life, Mom.  Her life cannot be taken away,"  one asserted through tears.

Another offered, "God loves Wylie so much.  It's going to be okay for us."

Others posed so many questions like:

Why is this happening to us?  To Wylie?
What does it mean that her fists aren't opening?
I know Jesus died on the cross for us, so why does this have to happen?
So, she'll come out and then we will have her for just a second?

We don't know these answers.  We do keep coming back to truths that are cause for rejoicing:

--Wylie is all gift--a perfect one for our family.

--God's whole design is incomprehensible and incomprehensibly good.

--Jesus weeps with us out of a desire and wish that we could see now what will be made perfectly clear one day when all things will be made new and all things will be redeemed.

One sat nearer and looked right into my eyes.  "God is so much bigger than Trisomy-18."  Oh, yes, Daughter.  This is the hope for which I've been looking.  Death may be sinking into my heart, but hope is an anchor that goes deeper still.  Hope is a Person who shows up and does for us what we cannot do for ourselves--is who we cannot be.  My heart is lifted for my Savior rides upon the anchor of Hope that sinks deeper than death and disease to hold our souls, firm and secure. 

Another Rescue

When our children are born, I pray a Psalm from the Bible over them as a blessing.  The one I chose for Kendall had a lot to do with her birth story.  She came with the umbilical cord wrapped around her neck.  She was blue and quiet.  I still remember looking from my friend and doula, Guinever, to my mother as the nurse worked with her.  She started crying and the blue was replaced by a welcomed rosy pink. 

This part of Psalm 18 stood out to me about Kendall:

"The cords of death entangled me;
     the torrents of destruction overwhelmed me...
He reached down from on high and took hold of me;
     He drew me out of deep waters...
He rescued me..."

The cord that had maintained Kendall's life had strangely and ironically threatened her.  Yet, God saw her struggle.  He rescued her from her suffocation and restored breath.  I think of this often with such gratitude.  Her happy, kind life amazes me!

We just read back over Psalm 18 in Bible Study Fellowship because David wrote it.  We are studying about the end of his life now and the events of passing along the kingdom to his son, Solomon.  Psalm 18 is essentially repeated in 2 Samuel 22 which is right where we were last week in the Bible.

As I read the whole thing again, I had new spiritual eyes and ears based on our circumstances with Wylie.  Read this powerful language that describes how David's cry brought God's action:

In my distress I called to the Lord;
    I cried to my God for help.
From his temple he heard my voice;
    my cry came before him, into his ears.
7 The earth trembled and quaked,
    and the foundations of the mountains shook;
    they trembled because he was angry.
8 Smoke rose from his nostrils;
    consuming fire came from his mouth,
    burning coals blazed out of it.
9 He parted the heavens and came down;
    dark clouds were under his feet.
10 He mounted the cherubim and flew;
    he soared on the wings of the wind.
11 He made darkness his covering, his canopy around him—
    the dark rain clouds of the sky.
12 Out of the brightness of his presence clouds advanced,
    with hailstones and bolts of lightning.
13 The Lord thundered from heaven;
    the voice of the Most High resounded.
14 He shot his arrows and scattered the enemy,
    with great bolts of lightning, he routed them.
15 The valleys of the sea were exposed
    and the foundations of the earth laid bare
at your rebuke, Lord,
    at the blast of breath from your nostrils.

He was on the move!  One of his own was in trouble and He was ready to act.  Allowing this response to wash over me again, I prayed for our Wylie.  I knew she desperately needed what came next:

He reached down from on high and took hold of me;
    he drew me out of deep waters.
17 He rescued me from my powerful enemy,
    from my foes, who were too strong for me.
18 They confronted me in the day of my disaster,
    but the Lord was my support.
19 He brought me out into a spacious place;
    he rescued me because he delighted in me.

Wylie has enemies that are too strong for her and as best as we can tell, God has acted.  We know that He has been holding us near, maintaining our peace, and protecting our hope.  These graces are more than enough for us to survive this trial!  God has not stopped with those blessings, however.  With our own eyes, we have witnessed another deliverance that has left us utterly stunned.

On Thursday, we went to see Dr. Bezould at the UK Congenital Heart Clinic.  The oh-so-friendly Tish was our sonographer again.  She took all the pictures while we admired our wiggly Wylie.  She left for a moment to check if she had gotten all the doctor needed.  No, he needed her to take a few more shots.  The reason?  They saw absolutely no evidence of regurgitation from her tricuspid valve.

We joined Dr. Bezould in the consultation room.  He was amazed.  "This is something I absolutely did not expect," he explained.  Wylie's "severe" valve problem was now "trivial"!  This change is tremendous for her.  Repairing a valve is difficult and complicated.  The Lord did it for her!  She still has her hole in her heart, but it seems like it will impact her much less at birth than the malfunctioning valve.

I love the verse my friend shared right after I told her what happened:

"He is the One you praise; He is your God, who performed for you those great and awesome wonders you saw with your own eyes."  (Deuteronomy 10:21)

Some of you may have seen pictures of the Build-a-Bear experience we had with our family recently.  Dr. Ragsdale gave us a little device at our appointment last Friday with which we were able to record Wylie's heartbeat.  We took those precious beats to the mall and placed it within an adorable little stuffed bear.  Before "Maggie" was sewn up, all of us kissed a little satin heart that was included in all that fluffy white stuffing.

I told my sister, "All those kisses found their way to Wylie's real heart."  Certainly, all the love and prayers we have received have mattered so much and have had an astounding effect.  We praise God for a healed heart and we praise God for each of you who will give of your time and your heart to read these words and continue to walk this journey with us. 

New Kindnesses and Old Prayers

Doctors and nurses and sonographers and technicians and administrators and chaplains and social workers have teamed up for Wylie, for us.  Everyone at the UK hospital was exceptionally kind and helpful at our appointment today.  We got to meet the members of the Pediatric Advanced Care team (Dr. Ragsdale, and the palliative chaplain, Rev. Kathryn Perry) as well as Dr. Playforth, the high-risk ob who will be taking care of us through Wylie's birth.  (Dr. Playforth learned about us through two sets of friends.  She passed along her number through those mutual friends and brought us under her wing).  They were all very attentive listeners and gave honest answers to the questions we had.  They encouraged us, too.

We got to see Wylie today in all her God-given glory!  She is so beautiful.  We love her so much.  From the past two appointments, the trisomy-18 possibility does seem to fit her growth and development.  She has gained weight, though, and the blood flow from her placenta looks healthy.  Those are great answers to prayers!

At our request, the health care professionals I mentioned helped paint a picture of what Wylie's first hours may be like in the hospital.  There are some hard possibilities.  She may be born prematurely.  She may not tolerate labor well.  Her brain may not communicate well with her lungs.  She may need a feeding tube, a ventilator, or an IV in her head.  We all acknowledge that there are absolutely so many unknowns.  Some aspects of Wylie's struggles could surface before birth, but her first 30 days after birth will be crucial and her first year, the most telling.  In any case, we have a group of skilled people who will employ all their knowledge, understanding and wisdom to help her.  I've been overcome with emotion and gratitude.

In addition, we have a personal, knowable God who loves us and is good to us.  I've considered the heartbreak of witnessing Gavin standing by watching his youngest daughter struggle and need machines to survive.  I feel the ache of desire to bring her home alive to her brothers and sisters. Today was a sobering day.

Gavin offered two crucial reminders as we drove home after our appointment:

1). God is up to something, we just can't see all the pieces.

2).  When a dark or scary picture of the future comes to mind, we can replay it with Jesus in view.  This changes everything.

Considering all of this, I thought of St. Patrick's prayer...

I arise today, through
God's strength to pilot me,
God's might to uphold me,
God's wisdom to guide me,
God's eye to look before me,
God's ear to hear me,
God's word to speak for me,
God's hand to guard me,
God's shield to protect me,
God's host to save me
From snares of devils,
From temptation of vices,
From everyone who shall wish me ill,
afar and near...

Christ with me,
Christ before me,
Christ behind me,
Christ in me,
Christ beneath me,
Christ above me,
Christ on my right,
Christ on my left,
Christ when I lie down,
Christ when I sit down,
Christ when I arise,
Christ in the heart of every man who thinks of me,
Christ in the mouth of everyone who speaks of me,
Christ in every eye that sees me,
Christ in every ear that hears me.

His prayers are my prayers, too.  Bless you for praying with us and for us.  We are forever grateful. Your faith on our behalf is so pleasing to God.