A Reflection by Kristy Wheeler

The words from “How Great thou Art” keep resounding.  “I scarce can take it in.”  I knew we would see God in Wylie’s birth.  As we see Him, I stand in awe, amazed.  I haven’t found words yet to capture all we have seen, but my friend Kristy Wheeler did.  She and her husband, Matt, kept watch as I labored and as God broke into this world through Wylie’s life.  With her permission, I share her words:

So much LIFE.

Waiting room filled with friends with stories upon stories of LIFE lived together. People trickle in and out, hugging, holding hands, laughing, remembering when and awaiting Who.

Stories of births, of adoptions, and of brokenness in the world and its systems… oh, but the beauty of LIFE.

Waiting.

Waiting.

Friends trickle in and out.

Waiting. 

The call goes out, the water has broken, the baby is coming. Family hustling in with concern etched on their faces. Feelings of intense urgency when there is nothing that can be done. 

Her heartbeat slows.

Where is the doctor?

Where is the Doctor?

Her heartbeat regains its rhythm. LIFE.

Waiting.

Waiting.

Praying.

Creak of the double doors being released. A room fills with children with tousled hair, with sleepy eyes, with questions and wonder as they wait for their new sister, for their new cousin. LIFE.

Prayers.

More prayers. 

LIFE.

Finally she's here; 

The whole space is full of PRAYER, of JOY, of FULLNESS. The promise of eternity swirls among us and rests... here among these people... within the little one who has enthralled us all... LIFE.

Wylie’s Warriors

First of all, we can not possibly thank everyone for all the support and encouragement we continue to receive!  My heart is full of gratitude...  For Karla.  For the UK Children's Hospital and staff.  For family. For so many wonderful friends.  For a loving God who knit Wylie together and has a wonderful plan for her life--a plan to give her "a hope and a future!"

I sat in the NICU room beside Wylie this morning overwhelmed and in awe.  What kind of world do we live in where I can drive two miles from my front door and walk into a place where the best and brightest minds and the greatest technological advances money can afford are standing by to do everything they can to help a tiny, 4lb 8oz child with genetic complications survive and thrive?  In the past 48 hours, Wylie has had every type of specialist imaginable stop in to check on her, scan her, and explain to us how “surprised” they are that she is doing so well.  Even more, they let us know they are prepared should something change!  Yes, we live in an amazing time in human history and in an amazing country!  Most of all, we live under the care of a God that is mysterious and powerful: listening to and acting on our prayers!  One of our biggest prayers was that she would breathe on her own and that happened after birth!  Today, "more than we can ask or imagine"... she nursed!  Another big prayer was that she would come home.  I trust that will happen in the coming days! 

Below is a link that friends have set up to keep folks updated on progress and ways to help with food etc.  We are super grateful for the support.  I can’t wait for you all to meet this amazing girl!

Join Wylie's Warriors:

https://my.lotsahelpinghands.com/community/wylies-warriors/request-to-join

The Destination Is The Journey,
Gavin

Ps. Karla will be writing to fill in all the details of the past few days soon.  She is doing great!

Mighty One

When Emma was about six or seven, she came into the kitchen where I stood my post at the sink with a proclamation I will never forget.  

"Mom, when I grow up, I'm going to have ten kids and they are all going to be small and bossy!"  

I just laughed because I thought, "She's right.  That's exactly what will happen if she says so!"

She is such a powerhouse, our Emma.  Her ideas are brilliant.  Her persistence is unquenchable and her love is fierce!  I've seen these qualities on display numerous times, but Wylie's life has brought about a demonstration unlike any other.  Emma loves her little sister so well and her Momma has been taking note.

On Tuesday, our exceptionally awesome doctor advised us that it's time to plan for Wylie's birth.  She has passed all her NSTs and ultrasounds, but the placenta is not doing the best for her.  That's why Dr. Playforth suggested sooner rather than later.  "How about Monday or Tuesday?" I was a bit shocked!  I will be 37 weeks on Friday, so I was thinking that we might be waiting longer.  I know and trust that she absolutely has Wylie's best interest in mind so we will induce on Tuesday at 8 a.m. if labor doesn't occur naturally before then.

In the meantime, I have prayed to switch modes.  I have enjoyed and grown comfortable with the closeness and the "knowns" of pregnancy with Wylie.  It's time to open the door to the unknowns of Wylie's birth.  Faithful family and friends, you have come right into this with us.  You have held us with such sincere care and love.  Your hopes are being realized!

This is what I know:

Wylie is not weak.  She is the exact opposite.  She bears a resemblance to her elder sister.  She's mighty!

Wylie and I are in this together.  We, connected, go forward in trust--in true love.

We will find no lack on this journey.  Everything we need will be there!

We will meet face to face and I am full of excitement and joy!  

Thank you, Wylie.  You have changed me forever.  I am so grateful for you.  You may be small (est. 4 lbs. 9 oz. at last Friday's ultrasound), but you are powerful!  I can't wait to get my arms around you!

"For God has not given us a spirit of fear, but of power and of love and of a sound mind." (2 Timothy 1:7)

Wanted

The time I found out I was pregnant after Neva is still very vivid to me.  We were in Florida on vacation with Katie and Clay and their children to go to Disney.  We thought our family was complete.  God thought otherwise.  We never met that child.  Neither did we hold the next two siblings conceived a year apart who both went to heaven during summer.

I have held a mysterious and heavy burden since that day I realized I was pregnant in Orlando.  My heart shifted and never shifted back to the way it was before getting pregnant unexpectedly.  I have cried and wrestled and wondered and ached and questioned, "Why, Lord, won't you take away this burden to have a child if I'm never meant to have another on earth?"

There is too much to write about the ways He answered my cries, but there are some things I want to share.  One important answer is that having a heavenly child is not something to despise.  Those three children are real and whole.  They are alive in heaven.  They are a blessing to us just like God's Word says they are even though I could not touch their skin, hear their voices, or see them grow.  They are loved.  They are valuable and wonderfully made.

And now, Wylie.  She has lived in the womb for 35 weeks!  When I was newly pregnant, I could not imagine ever feeling her move within me.  What joy to hold and experience her life!

Through her, I have learned something very important about God and my childbearing journey.  Part of my previous angst was wondering why I would continue to want to have a baby.  "I have five healthy children.  Why would I want more?  Why am I unsatisfied?  Is there something missing in my life that I'm trying to fulfill through having a baby?  What is wrong with me?!"  These thoughts would roll around regularly and often in my mind over the past five years.

Then, in the midst of the unknowns about our future with Wylie, as my belly swells and mystery just mounts, God answered again.  "It was Me.  I wanted more children."  What a thing for me to claim!  The God of the universe communicating His desire for people!  I believe Him, though, in part due to these words from the Bible that brought so much healing during my time of earlier grief over miscarriage:

"You are worthy, our Lord and God, to receive glory and honor and power, for you created all things, and by your will they were created and have their being." (Revelation 4:11)

Each life is created by God on purpose--every single one.  He wanted Wylie.  He made her because He wanted her.  A desire I thought was all mine, wasn't mine alone.  This has brought me so much relief!  I feel confident that I've done my part in being willing.  Before even being born, I know God's will has been accomplished.  She's here!  I am humbled, amazed, grateful.

Moon Glow

The students I get to lead in Classical Conversations Challenge B program (8th graders) are persevering in Latin.  Their first semester was a review.  This half of the year they are attacking new material.  We are plodding a well-worn path that is full of benefit if we can just keep going.  Today, we practiced non-reflexive pronouns.  These are distinguished from the reflexive type by the fact that they don't refer to the subject of their own clause, but to someone or something else.  This relates to thoughts I keep having about our family's circumstances.

People have been so kind as to express their admiration of how we are dealing with Wylie's unknowns.  I am encouraged by these strengthening words people share so generously.  At the same time, I have this ever-present desire to offer an explanation. 

What you see in our lives and read on this blog is a synthesis, a celebration, the glory of God and people.  I am a non-reflexive pronoun.  I refer and defer to the Triune God revealed through the Bible and the thousands of years of history He has given us upon this earth.  I reflect the love and light of countless people offering prayers, compassion, help, and encouragement.  My life expresses Another's will and way.

You have probably heard the story about Moses.  The Bible records how Moses would go up on Mount Sinai to meet with God.  There, they would talk.  The Creator would reveal right and wrong, good and evil and Moses would listen and then descend with a glowing face.  Moses' face did not glow because of the effort he put into listening.  The light did not beam from Moses' inner radiance nor could he capture the light from the sun upon his own brow.  The glow came from Another.

Moses would veil his face so the people wouldn't see the "glory" fading away from his skin.  Interestingly, we can all be like Moses.  We can "go up the mountain" and meet with God.  I do this, but I'm fascinated by the difference:

"We are not like Moses. He kept covering his face with a veil. He didn't want the people of Israel to see the glory fading away... In fact, to this day the same veil is still there... It isn't removed, because only Christ can remove it. But whenever a person turns to the Lord, the veil is taken away. This Lord is the Spirit. Wherever the Lord's Spirit is, there is freedom.  As all of us reflect the Lord's glory with faces that are not covered with veils, we are being changed into his image with ever-increasing glory. This comes from the Lord, who is the Spirit." (2 Corinthians 3:13-18)

One of my favorite verses in the Bible is this one:

"Those who look to Him are radiant; their faces are never covered with shame." (Psalm 34:5)

Isn't that amazing?  Gazing into the face of the perfect, holy, God with an uncovered face leaves one radiant!  Not ashamed!  Free!  Not enslaved!  And speaking of pronouns--please notice the "all of us," "we," "those," and "their" in these Bible verses. You probably know that these pronouns are plural.  This journey is a collective experience.  There is no longer a single man going up the mountain with the rest of the people stuck at the base hoping to get a glimpse of shimmer that may escape the veil.

No, there is freedom to ascend through Jesus Christ.  By His Spirit, we, with unveiled faces, approach the Father of Heaven who casts His glory upon us leaving us radiant.  Let us keep looking to Him together.

 
 

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.

Loved Like You've Never Been Loved

If you know us, you know that Gavin and I love the band Over the Rhine.  We have been fans for so long.  We have seen them so many times.  Their music is truly a soundtrack for our lives.  In fact, our Christmas present to each other every year is tickets to their annual Christmas concert in Cincinnati. 

The Christmas Concert is always saturated with meaning and expectation for me.  Without fail, I have a holy moment with God at some point during the set; think Michaelangelo's Adam and God touch on the Sistine ceiling.  This year was no different.  They offered this new song from their album "Love and Revelation" as a benediction:



I opened myself to this blessing that night.  With moist eyes and the kind of ache caused by beauty in my heart, I received these words:  "May God love you like you've never been loved." What a wonderous invocation!  How sincere, how peace-loving, how pure, how merciful!  The goodness of it stirred hope.

It has occurred to me since then as I have received hug after hug, prayer after prayer, kindness after kindness, that this is happening.  Right now, we are being loved like we've never been loved!  The effect of it could not amaze me more.  As I've written, Love has made a place for rest.  Love has also acted like a buoy, keeping us afloat above our circumstances, anchored though living on a storm-tossed sea. 

I extend the same to you, friends, family.  May God love you like you've never been loved.