Meeting Her

The struggle was absolutely real at this point one year ago.  I could feel the temptation to pull away from my daughter.  The idea of having to let her go was so painful. I wanted to protect my heart.  I found the human way of premeditated grief, a desperate attempt to prepare for the worst in hopes of getting over it more quickly.

My friend prayed with me.  She reminded me that Wylie needed me.  Like many other times in which something felt impossible--forgiveness, letting go, choosing mercy over judgment--I felt God helping me open my heart all the way to my precious girl.  I realized, either way, whether alive on earth or in heaven, I would have the chance to hold her body.  This encounter became my new focus.

I had never been induced.  I felt strange arriving at the hospital for a labor appointment.  Peaceful, full of hope, and surrounded by love, we journeyed through that pivotal day anticipating the inevitable crescendo.  In this state of heightened awareness, everything is magnified.  I am forever grateful that what I remember is goodness from the hospital staff, from my family, and from my friends.

Wylie's delivery was by caesarian section.  Gavin and I clung to each other as I laid under the light and then she was born. They brought her to a place I could see, but even looking at her purplish limp body, my eyes were too dull to take her in just then.  Gavin let go and went to her.  I remember his message clear through the blur of medicine, doctors, and the hum of the operating room, "She's breathing, Kar.  She's breathing."

And it began--meeting Wylie.

Before she was born, I imagined the first time holding her in the terms that I knew--the way I held all of her brothers and sisters.  The first time I held her was not like that.  Meeting Wylie for the first time seems like an unfolding to me, not a singular event.  She was a baby, but a very different baby from any other I had known.

I was separated from her for a long time, by comparison, after she was born.  If I knew what the reality would be before I experienced it, I would have dreaded it.  I did not actually hold her until the next afternoon.  In all this time, though, Gavin was with her and my mom was with me.  I had a difficult time with the after-effects of the surgery.  I was not physically able to get up and go down to the NICU right away.  Nevertheless, God's peace held us all together.

I had opened my heart to hold my baby, but what I realized is the real culmination was witnessing my daughter.  We all just watched her.  What a wonder to behold!  Her life seemed impossible and there she was--living!

Since May 8th, 2019, I have kept a website open on my phone that has counted the days since.  There have been a few times that I thought her earthly days were ending.  After going through experiences like that, meeting Wylie each morning is like a new birth.  I could have never imagined that the weight of her life would continue to impact me just like the day she was born.

In a real sense, Wylie has awoken me to the miracle that has always been.  When in this world, we have the opportunity to meet one another anew over and over, discovering and appreciating the gift of life together.  I changed the words to "Edelweiss" for Wylie and sing them over her.  The edelweiss flower grows in the high altitude of the Alps and is a symbol for bravery, courage, and love.  How fitting for our mighty warrior!

   

      Edelweiss, Edelweiss,

      Every morning you greet me,

      Soft, and light,

      Sweet, and bright,

      You look happy to meet me.

      Blossoms of love, 

      Will you bloom and grow,

      Bloom and grow, 

      Forever.

      Edelweiss, Edelweiss,

      Bless my daughter, 

      Forever.

A Death Unto Life

I have been thinking of all the parents who have been thrust into homeschooling and quarantined with children 24/7.  Our family's life path with Wylie and lessons at home before now has acquainted us with quarantine life.  The changes are not as drastic for us; however, I am sympathetic to others who have had their worlds flipped upside down.

When Guy and Emma were little, I went to counseling for anger issues.  Little disruptions, like Guy not wanting to take a nap (a normal toddler experience), would turn into major fiascos.  One day, I realized the huge gap between the "offense" and my reaction and called a counselor.

At that time, Emma wouldn't really let me put her down.  I wore her in a sling and she sat in a Bumbo seat right beside me if I was cooking, folding laundry, etc.  The grandmas, Gavin, and my friend, Elizabeth, were the only ones who were able to keep Emma for an hour or two.  She would cry for almost the whole time.

I could walk to the counselor from my house and Elizabeth lived right on the way.  I dropped Emma and Guy off with her and continued to the counselor's office.  I will never forget that walk.  I was sad, but also hopeful and humbled.  I remember my whispered prayer of something like, "Lord, help me."

I did not expect an immediate answer but got one whispered back into my heart.  "I am going to heal you so that you can die."  Tears welled in my eyes.  This sounds like a terrible answer, but it wasn't.  

"For whoever wishes to save his life will lose it, but whoever loses his life for My sake, he is the one who will save it," (Luke 9:24).

Becoming a Christian is a matter of life and death.  To follow Jesus, you must die to yourself.  You give up being your own boss.  You trade your plans for His.  I wanted to do this more and more. 

The brokenness and shame and guilt of my explosions of anger kept me in a place of trying to "save my life."  Imagine a sprained wrist.  You hold it with the other hand and arm--cradling it, protecting it, preserving it.  I could not lay down my life, because I was holding all the wounded parts with my own hands.  

Jesus' healing allowed me to let it go.  I died to the trying and self-effort of changing myself and dealing with the guilt of my sin.  I received forgiveness and freedom from Jesus in that counseling office.  

This is the thing.  This kind of dying is one that leads to a rebirth--more life of a different kind.  

What is the goal of preserving our lives, Wylie's life, these days with hand washing, six feet of distance, etc.?  The best I know now is that our quarantining of today's times is not out of fear of physical death, but out of love for life with Jesus.  We are losing our lives in one way, entrusting them to God, and letting Him make something of the long days of not doing too much at all.

A friend in Simple Church reminded me that Easter is not just about the crucifixion and resurrection.  Jesus ascended!  He didn't just walk the earth after overcoming the grave, but He went to the Father in Heaven.  We don't see Him with our natural eyes or hear Him with our natural ears now, but He still can be heard and seen!  Jesus said that when He went to the Father that there would be One just like Him who would come.  We know now that the Holy Spirit is that Someone!  Jesus is not limited by time and place anymore.  He is in all places at once.  He lives to intercede for us.

Life with Him is what I am made for, what I had always been looking for, and my greatest hope.  It's not for me alone.  He invites everyone into His life...everyone.  There is no angry momma excluded.  I should know.

The Extraodinary in Normal

So, Guy got a perm a couple of months ago.  When he came and asked for one, I just cracked up!  I couldn't believe it at first.  He had to show me pictures of what he wanted his hair to look like in order to convince me.  I realized he was serious and we found a great beautician who could give him one.  It turned out just the way he wanted and it's still looking good.  I just have to give him a trim every so often.  I did that this morning.

I like getting to cut hair and in these unhurried days of quarantine, it's even more enjoyable.  There is no next thing begging me to hurry and Wylie was asleep.  She is such a pleasant person.  She very rarely demands her way.  Of course, she lets us know if something is bothering her with cries and squirms.  Otherwise, she likes being held, she likes looking at her mirror in her chair, she likes sleeping, she likes playing, she likes swinging.  Generally, she likes whatever is happening at any time.  She is settled.  Our days with her at home feel normal like cutting Guy's hair.

As I swept up the clippings, I also thought about a little Trisomy-18 girl who went to heaven just over a week ago.  She was one of those I mentioned following on FaceBook.  She lived with her family for 3 1/2 years.  She got very sick unexpectedly and never came home from the hospital.  Her mother always ended the hospital posts with, "Jesus, do what only You can do."

He did.  He carried this amazing little person He formed to be with Him forever.  He did not forsake a loving mother and father.  He wraps His arms around these hurting friends and comforts them, shields them, and bestows hope and peace beyond comprehension.  Her mother concluded her most recent post with, "Eleven more days closer to seeing you again..."

Who else is like Jesus?  He has done something only He can do for us, too.  He has given us Wylie forever.  We are together on earth and then we will spend the rest of forever in heaven.  And we are just normal...just normal people.

Living in Shadow

It's Lent.  After getting my screen time reports and seeing six hours plus for days in a row, I was alarmed.  You know what's coming.  I took Facebook off my phone.  I was alarmed again, but this time uncomfortable that removing an icon and easy access to social media gave me pause.

You also may guess the next thing. It's been good and also difficult.  Several of the families who have a child with Trisomy-18 are in the hospital right now.  I care so deeply about these little fighters and the people who fight with and for them.  I hold them constantly in thought and prayer.

I check in one time each day and quickly get caught up on their progress and make a couple of comments.  I also take time to read each of the encouragements people write upon our posts and give thanks.  I am so grateful for the connection and the care we receive that way!

I want to get on Facebook more, both to check on them and because sometimes when I'm sitting in the hospital while Wylie is sleeping, I get bored.  I definitely am confronted with the habit of picking up and scrolling.  I also notice that if I'm looking at everyone else, I'm not looking at Wylie and that's a problem.

Instead of the phone, then, I pause.  I look at Wylie.  I really look at her.  I take her in.  I notice how she feels in my arms.  I put her down and see if I can remember what it's like to hold her when I'm not holding her.  I do not make it a regular practice to think about what it would be like if she dies, but sometimes it's okay because those imaginations change my decisions and priorities in good ways like fasting from Facebook. 

Speaking of fasting, this verse often comes to mind in this season:  Luke 5:33-34.

33Then they said to Him, “John’s disciples and those of the Pharisees frequently fast and pray, but Yours keep on eating and drinking.”

34Jesus replied, “Can you make the guests of the bridegroom fast while He is with them? 35But the time will come when the bridegroom will be taken from them; then they will fast.” 

This verse is about Jesus.  He anticipated his death and His friends' grief.  This verse is also, for me, about Wylie.  Right now, she is with us.  I want to go on eating and drinking--celebrating today.  There may come a day when she is not with us.  If that happens, I can only imagine the grief. 

There are shadows in this.  There are shadows that are uncomfortable like the ones clouds make when I forget my coat.  There is the shadow of the past.  I think about the times she was really sick and the what-ifs of repetition.  There is the shadow of death.  The length of life is unknown, but a conclusion is guaranteed for all.  I think about the when and how of mine and hers sometimes.  

There are also shadows that are welcome like the ones clouds make on a scorching hot day.  There is the shadow of God's wing.  I love the protection and security I find there knowing that God sees and loves us and is acting on our behalf.  There is also the shadow of the cross.  Jesus's finished work casts an indelible mark on my life. He has sealed the future with a hearty, "Yes, I am for you.  You will be with Me forever."

In one way, I fast now, in another I feast!  The bridegroom, Jesus, has been taken and I wait for His return and the renewal of all things.  We live in the ugly, threatening shadows of COVID-19, poverty, injustice, violence until His reign brings perfect righteousness, peace, and love.  With Wylie, we celebrate!  We keep eating and drinking while she is with us.  She is so amazing and precious!  God shields us with the shadow of His presence and guidance. 

We are in light and darkness at once.  Isn't that what a shadow is?


For a beautiful, more eloquent thought about this idea, please read http://ccca.biola.edu/lent/2020/#day-mar-11. 

Closing Time (Gavin Duerson)

This past week, Wylie came home for the eighth time.  There have been some usual bumps in the road with getting home and some not so usual bumps.  It turns out that Wylie was lacking oxygen for a long time because a cap was not screwed on properly to her oxygen machine.  This was a terrible and heartbreaking realization, but a relief once fixed.  Wylie returned to her healthy awake self almost immediately.

So last night, at about 3 a.m., Karla woke in a panic that we had forgotten to give Wylie her 2 a.m. medications.  I sprang to the floor and frantically dashed to the kitchen to get her meds that were now an hour late.  It didn’t take long for Karla and me to realize that we don’t give Wylie medications at 2am anymore.  No matter, my heart was racing and I resigned myself to the fact that I would not likely be sleeping again for awhile.  So, I enjoyed listening to Wylie breath soundly on her C-Pap machine for several minutes before defaulting to my usual podcasts I like to listen to when trying to sleep.

One of these podcasts is called “Song Exploder.” It’s a great podcast that takes a song, deconstructs it so that you hear how and why it was put together.  You hear early demos and each track.  The artist explains the hows and whys of instrument selection and certain sounds in the song.  The episode I played was about the song “Closing Time” by Semisonic which is a 90’s rock song that always annoyed me.  I’m not sure if it annoyed me because I disliked the song, or that I actually liked it. Either way, it seemed like a dumb song about people being kicked out of the bar at night.  Well, it turns out that the song really is not about that at all.

In this Song Exploder episode, the lead singer and songwriter Dan Wilson explains that “Closing Time” has a double meaning.  He wrote and recorded it while he spent a year in the hospital with his premature daughter.  The song is really about her birth.  He shares that the song and the recording process proved to be a valuable outlet in the midst of the difficulties of his time in the hospital.  I, of course, could relate to this all too well.  Coaching basketball has proved to be this outlet for me (Not to mention that I too released an album this year that I'm sure you own and enjoyed all Christmas long).  In addition, he shares a really neat story at the end about the day that this song was released to radio. I couldn’t help but think of all the stories of “coincidences” that have happened since Wylie has entered our life.  I look forward to sharing some of them in due time.

So, below is the podcast link for your enjoyment.  I know this post is not terribly deep or inspirational.  However, I will never hear this song the same again without thinking about Wylie wanting us to take her home and ultimately the God of the universe that will take us all Home someday.  Perhaps you will enjoy this as well.

-Gavin Duerson

The Arkenstone

Today I was making my bed and I realized an answer to my prayers.  I have asked God to do something for me that has alluded my own efforts.  That is to help me anticipate life with Wylie as I hold the possibility of her physical death.  I pulled up the covers and found excitement simmering in my heart.  Desire to nest, to remake home here with us surfaced as I replaced our pillows.  This is an answer.

I know that she is constantly choosing us--holding on and healing to be with us.  My heart longs for her to be all she is meant to be and for us to be all that she deserves.  When I go and sit with her at the hospital, I read The Hobbit aloud which is really a perfect story for now.  Tonight, Bilbo found the Arkenstone, the Heart of the Mountain, in the heap of treasure Smaug, the dragon, had long made his bed.

...indeed there could not be two such gems, even in so marvelous a hoard, even in all the world.  Even as he climbed, the same white gleam had shone before him and drawn his feet towards it.  Slowly it grew to a little globe of pallid light.  Now as he came near, it was tinged with a flickering sparkle of many colors at the surface, reflected and splintered from the wavering light of his torch.  At last, he looked down upon it, and he caught his breath. The great jewel shone before his feet of its own inner light, and yet, cut and fashioned by the dwarves, who had dug it from the heart of the mountain long ago, it took all light that fell upon it and changed it into ten thousand sparks of white radiance shot with glints of the rainbow.

Wylie glows with a breathtaking light.  Just like the Arkenstone, she magnifies all the love shining from God and people into ten thousand sparks of white radiance.  Tonight, before I left, I put my lips to her soft head and kissed her beautiful crown.

A Day

Recently, a very dear couple who has been involved with Simple Church since its inception, but meet with a different group of people, joined us for our Sunday gathering.   They have been reading a book about grace (God's unmerited favor).  The book clarifies the truth that God's attitude, His position toward people is one of favor, forgiveness, love.  This can make a Christian squirm.  I literally shifted in my seat as we talked.  Why?

Well, there is a Judgment coming.  What if people take that lightly?  There are important doctrinal beliefs to communicate.  What if people don't believe the right and true things about God?  Sin has grave consequences.  What if people don't know they need forgiveness?

This saddens my heart because I see the terrible potential.  There is a Judgment.  The Bible describes this event as a day--a day of wrath.  One day out of millions of them is reserved for the destruction of evil and evil-doers while hours upon hours pass brimming with grace.  Today is the day of salvation--all that we need for rescue is available, flowing from the throne of God.  The matter is one of personal receipt, acceptance, acknowledgment.  What a sorrow that this wonderful love is passed over because we condemn God for His righteous judgment and miss His amazing mercy!

In a similar way, Wylie's Trisomy-18 diagnosis carries a weight.  What if I lived every day as if she was already dead?  The one day reserved for her home-going fills all the others meant for the grace of life together?  What a tragedy that would be.

Fading

Her scars are fading.
She is not.
No, she weighs
More.

Her form outlines
My heart.

Embrace

Carpe Diem.  Seize the day.

During this most recent hospital admission, I made a decision.  I realized there was more of Wylie to embrace, so I did.  I embraced the more of her that was uncovered.

I am aware that she will require more medical intervention than our family has known.  I anticipate procedures, tests, medications, and appointments.  Then came Monday night.  We had been home for exactly two weeks--a wonderful two weeks.  Yet, we had to go back.  We had to drive back to the same ED that opened the door to her ten-week hospitalization.

Honestly, I was sad and tempted to feel a failure.  We went, though, and were greeted by friendly, helpful doctors, nurses, and therapists who did their best for Wylie again.  I hoped maybe they would send us home, but we didn't go home.  We went back upstairs to the other side of the PICU.  Sweet friends there apologized that we had to come and welcomed us, too.

Wylie's palliative care doctor reassured us the next day that her providers also expect admissions to "fine-tune" her care.  I liked hearing that.  I witnessed the truth of her statement.  While Wylie was there, they stopped two of her medicines.  She made the transition back to breastmilk.  She has a new weaning plan for another two medicines.  It was helpful and redemptive.

Before all of this materialized, though.  I realized my opportunity to choose my attitude.  I could drag in and out of that parking garage.  I could worry and fret.  I could become anxious for the children at home and what they are experiencing or perhaps losing.  I could project into the future how many more admissions we may have and how many could be as harrowing as ones we have already endured.  I could be jealous of parents with "healthy, normal" newborns.  Easily.  I could easily do those things.

On the fringe of this attitude choice, a startling question interrupted and weighed on my heart.  Will we help Wylie live for her to just inevitably die an early, painful death?  Herein lies the more of Wylie I can choose again to embrace.

My answer is that I'm all in for Wylie.  I'm willing to make a thousand trips to the hospital.  I am willing to help her siblings cope with separation and disruptions in our home.  I'm committed to teamwork with Gavin through whatever circumstances we find in the future.  It's firmly decided--a done deal.

In the meantime, we are not at the hospital.  We are home.  Right now, our sweet Wylie is napping on her changing pad, a beautiful color pink with her newly-grown, fuzzy hair adorning her precious noggin.  There is diaper-changing, bathing, cuddling, stroller-walking, singing, reading, facing-making, embracing to do.

Carpe Diem.

Miracle, Precious, Marvelous

"Miracle, Precious, Marvelous" These three words were harkened over Wylie's crib more times than I can count.  A nurse technician greeted the little babe with these descriptors every time she began her shift.  This special lady was so bold in her hope, fierce in her love.  Her courage was contagious.  One of these titles for Wylie has left me at a loss.

Miracle.  What do we do with our miracle?  This week I've thought of Lazarus, Tabitha, the beggar in Acts 3, and the 10 lepers.  The first two were raised from the dead.  The others were healed in a way that profoundly changed their entire lives.  I was washing dishes and thinking about how Lazarus would have gone back to eating and sleeping.  I was making my Kroger order and imagining how Tabitha would have walked to the market and spent time with the ladies that wept over her dead body.  Wylie can be outside and in the bathtub!  The beggar could move!  Where did he go first?  Those lepers...only one came back to say thank you.

When these miracles occurred in the Bible, everyone was astounded and amazed.  Some people decided to follow Jesus afterward.  Some were wrought with fear and jealousy--their power and control threatened.  I've noticed my response over and over is gratitude and awe.

Why?  Boldness.  The definition of boldness is "willingness to take risks and act innovatively; confidence or courage."  We have seen boldness.  Oh, little Wylie, if anybody could cause someone to shrink back, it may be her.  When she was sick, she got really sick.  Three holes in her lung, heart failure, arrhythmia, chylothorax, pericardial effusions, a blood infection.  The challenges literally overlapped one another, wreaking havoc in her fragile body.

Heroic people put their hands on her.  They delicately placed tubes, and catheters, and stitched, and positioned, and used every tool at their disposal to help her live.  Her providers worked through shifts without breaks to attend to Wylie's demanding condition.  These normal people with dreams, hopes, and challenges of their own, showed up and gave her everything they could.  They did for us, too.  There were hugs, smiles, tears, plans, revisions of plans, and creative problem-solving like you would not believe!  They were so bold to give her a chance to heal, so bold to imagine her going home.  

Outside the hospital, people were bold, too.  Bringing food, bringing themselves, bringing our children to classes and activities, people risked coming near in our grief, our potential loss, our pain or messiness.  Courageous friends and family dared to hope with us and for us.  Every comment, every note, every card, every silent or spoken prayer uttered on our behalf was a bold assertion that love was worthwhile. 

The morning we went home, I woke pretty early and went into Wylie's room from the sleep room which is situated across the hall from the PIC Unit.  I was able to hold her and thanked God for her life and for her healing.  He had kept so many promises during our stay there.  "I will never leave you or forsake you."  He didn't.  "I am near to the brokenhearted."  He was.  No matter the outcome during this admittance, we had experienced a miracle of our Triune God being with us and for us!  His presence was everything!

After thanking God, I was moved to thank her, too.  I wept over my four-month-old daughter's courage.  "Thank you, Wylie, for never giving up.  Thank you for giving us the chance to be with you and know you better.  Thank you for coming home with us."

You are, "miracle, precious, marvelous."

Wylie’s 2nd Homecoming (photos)

Thank you Guinever VanCampin for taking these great pics yesterday!