Tiny Teacher

Friends, I wrote this blog entry last week in honor of my friend, Maria.  The message rings true today as we wait with Wylie in the NICU for her body to rest without food...

When Gavin and I learned that Wylie likely had Trisomy-18 we wondered if we would be able to find doctors.  Based on our reading about the disorder, we discovered that healthcare providers don't always offer every intervention to children with Trisomy-18, still considered by some as a lethal abnormality. 

In our case, we did not have to wonder very long.  Our conversations began with Baptist Health's high-risk OBs and palliative care team before being transferred to the University of Kentucky.  Wylie's health, even at that time, caused pause.  She lacked many of the problems that babies with Trisomy-18 encounter.  Did she have mosaicism?  I remember one of the doctors at Baptist recommended we ask the UK Team to take every measure at her birth to save her life.  I remember the gratitude swelling in my heart when she said so.  She believed that Wylie had a chance.

We had a very smooth and positive transition to UK.  We met with many providers.  They all told us the same story when we wondered aloud about Wylie's future.  They emphasized, "She will tell us.  We will give her what she tells us she needs."  Again, my heart soared.  That was our hope--that Wylie would be seen and heard and treated as she was, not just based on the label of her possible genetic disorder.

Their story was not fiction.  That story was true.  Through non-stress tests and ultrasounds when Wylie was in the womb, through the process of her birth, and in the many days that followed in the NICU, Wylie communicated with us.  She told us she was happy inside me until the umbilical cord flow from her to the placenta slowed, and then we knew she was ready for fresh air and different cuisine.  She tolerated labor until she didn't and let us know with heart decelerations during contractions.  Her face was presenting.  She needed a cesarian and one was given.  Wylie breathed and then ate and then let us know she needed help with the eating, so we gave her a G-tube.

Each step of the way, the most brilliant, talented, skilled professionals attentively put their eyes, ears, hands, hearts, and minds on a four pound eight-ounce neonate.  The only agenda that I witnessed among them was to respond well to her communication.  You can't imagine what it was like to be in the room every morning with the rounding group of providers gathered for a tiny baby.  The health care providers didn't do things TO Wylie, they accomplished things FOR Wylie.

I have realized my skepticism.  "Sure, listen to Wylie.  She will tell us what she needs."  Does a baby really have that much power or ability?  Surprisingly for me, the answer is yes.  She does.  

This is how one of my favorite authors, Ann Voskamp, put it,

"Sometimes, we try to manipulate hearts to beat the way we want — rather than letting people’s hearts communicate what they need. 

And I'm with you, it really does take a lot of courage just to listen to a heart — exactly as it is — and not try to manipulate its beat.

And it's so tempting to drum our thinking into others — instead of letting people march to their own drum.

But I must remind myself and put this on repeat -- We get to be like Jesus to people as they march to their own drum. And it’s only Jesus who gets to change drums."

This is the Jesus I am getting to know:

“He will not quarrel or cry aloud,

     nor will anyone hear his voice in the streets;

a bruised reed he will not break,

     and a smoldering wick he will not quench,

until he brings justice to victory;

     and in his name the Gentiles will hope.” (Matthew 12:19–21)

Through Wylie, God has given me a life-altering picture of what it is to really see, hear and respond to a person.  I want to be like Wylie's team who listened with the purpose to provide, to support, to uphold her life.  What a wonder when a person listens, like God does, only to help, not to force or to find an angle.  And the life that emerges?  Wow!  Wylie is thriving!  

Receiving Wylie

Celebration is the acceptance of life in a constantly increasing awareness of its preciousness. And life is precious not only because it can be seen, touched, and tasted, but also because it will be gone one day. When we celebrate a wedding, we celebrate a union as well as a departure; when we celebrate death we celebrate lost friendship as well as gained liberty. There can be tears after weddings and smiles after funerals. We can indeed make our sorrows, just as much as our joys, a part of our celebration of life in the deep reality that life and death are not opponents but do, in fact, kiss each other at every moment of our existence. --Henri Nouwen

I have never received a gift of which I am more afraid.  Wylie was not born into my arms.  She was born into the hands of doctors who pulled her from my body and onto tiny beds with machines as Gavin and I held our hands together without knowing if she was coming or going.  I could always imagine good-bye more easily.  Yet, Gavin held her body and announced, "She is breathing, Kar.  She is breathing."  I reeled.

A few long hours later, on May 8th, she was placed into my arms.  I did not know how to hold her.  She had tubes and cords and leads springing from her.  In my disbelief, I cradled my daughter gently.  All the while this constant prayer flowed silently from my heart, "How, Lord?  How do I hold her?"

Instructions have come--daily ones.  "Ascribe to the LORD glory and strength," "Sing to the LORD a new song for He has done marvelous things," "Worship the LORD with gladness," "Remember the miracles He has done."  Each moment I have one thing I know to do directly from the Psalm I read as my bread.  With her tiny body and amazing overcoming, Wylie has brought a deep sense of the present.  I do not dare leave it.

Also, there are hands, so many hands!  Family, friends, nurses, technicians, doctors, social workers, dieticians, volunteers, clerks, neighbors, so many people hold us.  We would fall--Gavin, Wylie, our other children, me.  We would crumble if it wasn't for the grip of people who carry our burdens and meet our needs.

I am learning to hold Wylie.  I hold her to comfort her, to feed her, to burp her, to carry her.  What joy!  She is a wonder to behold!  Though she is less than five pounds, I tremble beneath her weight.  This small person is carrying the glory of God--His image--into our world.  She is like the break of day.  Her small light dawning changes my whole sky.

Welcome, Wylie.  Our good God has brought you as a perfect gift.  May you always know His closeness and love as you stand strong in the work He has for you.  We are so proud of you--in awe, really.  You are truly miraculous.

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For progress updates check out Wylie's Warriors on Lotsa Helping Hands: 
https://my.lotsahelpinghands.com/community/wylies-warriors/home
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Today Wylie is 4 Weeks Old! 

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.