Thursday, March 12, 2020

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

Saturday, February 1, 2020

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

Friday, January 10, 2020

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.

Saturday, December 14, 2019

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.

Saturday, November 2, 2019


Her scars are fading.
She is not.
No, she weighs
Her form outlines
My heart.

Saturday, October 19, 2019


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.

Tuesday, October 1, 2019

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."

Tuesday, September 24, 2019

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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...

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