Thursday, February 7, 2019

Some thoughts from Gavin

I have sat down numerous times to summarize my thoughts about the news we received last week and it has been too difficult.  There are so many things swirling in my mind—many of which I know are not good or true.  What am I to make of being told some of the seemingly worst news I could receive awaiting the birth of our baby?  It was taking too long to put these thoughts in any coherent statement, but I have found it important to at least jot down some of them, albeit in a random fashion…

*  Wylie is a gift.  Regardless of her diagnosis or presence of Trisomy 18, she is a person who is alive and has value because she is made in God’s image. 

* Wylie is not suffering.  She is kicking, living, moving, and growing. Karla’s health is good.  The only difference in this week and last is that we have an 89% positive Trisomy-18 blood screen report (with her other choroid plexus cysts and heart defect the doctor said it’s more like a 95% positive).

* A 5% chance of health is no small thing.  Besides, God is not bound by percentages or predictions.

* Karla and I, at the end of the day, really are called to be her advocates.  It's sobering to realize that we live in a world that says Wylie only has value if we want her to have value.  She is only a person if we say she is a person.  This description of the world's viewpoint causes me to feel, with extreme clarity, the sad and hopeless reality that comes with it.  If we gave up fighting for Wylie and advocating for her, no one would stop us.  If we gave up on any of our other children, we would go to jail.  With Wylie, we realize that we are her only line of defense from being disregarded.  Wylie, and others like her, truly are the most vulnerable among us.

* If Christianity isn’t true, then Wylie does not have value.  I can’t possibly elaborate on this now because it would take a long time, but I’m convinced it is true.  She is made in His image and thus has immense value regardless of what we think.

*  I have always sought to avoid pain and suffering; if that be taking our kids to the hospital for shots or helping a kid at the skate park with an injury.  I’ve usually looked for someone else to step in and take over for me.  Even before this news, God has been preparing to change this in me.  I'm realizing the desire to avoid pain and suffering is really a desire to avoid love, because if there is no love, then there is no pain.  Failing to love out of fear of suffering will lead to a failure to understand the power of the Cross. A few months ago, I asked God to show me just how much He loves me and to have a better understanding of what the Cross means.  I think this prayer is being answered.

* None of us know what the future holds.  Two weeks ago, I would have never imagined life as it is now.   But the reality is that all of us, at any given time, can have sudden life alterations.  Considering these traumas both random and filled with hopelessness is what produces confusion and anger.  Could the happenings of life be purposeful?  Meaningful?  I say yes based on my life experiences and my walk with God up to this point.  In fact, I believe that God really does hold my future and knows far better than me what is best for my family and me. 

*  When I picture a future full of fear and pain, it's usually because I'm not picturing a future where Jesus is with my family and me.  When I picture Him there with us, as He is now, regardless of the situation, there is peace.

*  I have a new sympathy with those facing abortion.  The option to terminate the pregnancy must seem like your only one when you are without hope, facing the possibility that your life is going to be completely different than you imagined, feeling unable to cope, and with a supportive media and medical community (which has offered us this option on several occasions).  However, I am also convinced, more than ever, that this seemingly "easy out" is a trap of the worst kind.  


There are more thoughts that I could list, but this is enough, for now, other than to say that words cannot adequately express the gratitude and love that we have felt from so many who have sent us food, prayed with us, called, and visited.  It's truly amazing to see so many people walk into a painful situation instead of sending someone else, like my tendency often is.  Thank you.  I know that Wylie is a gift who will continue to teach us all a wonderful thing about Him and His love.  

Tuesday, February 5, 2019

I Want What I Have

My husband is my high school sweetheart.  By Wylie's due date, we will have enjoyed 19 years of marriage.  We help plant churches together.  Gavin coaches and I teach Pilates.  He loves sports.  I love to read.  Through our love, devotion, and affection for one another, God has brought five people into this world and four others (that we know of) straight into heaven.  I want Gavin as my husband.  I don't always want our differences or having to deal with what I consider messiness or inattentiveness.  I'm sure he doesn't always want my occasional nagging or rudeness.  Yet, we want what we have.  We have each other and we want one another.

My friend shared this idea with me a couple of years ago.  As to advice about coping with challenging familial patterns she remarked, "I try to want what I have."  I had to ponder that comment awhile.  It caused me to wonder how much of my disappointment, discouragement, frustration, and critical spirit comes from the opposite attitude.  How often does my heart cry, "I don't want this.  I don't want what I have!"?

Enter precious Wylie.  What do we want?  We want her to have the best care we can find or provide.  We want her to be whole and healthy.  We want to care for her.  We want her to know the love of her siblings, family, and friends.  We want a lot!  But what if?  What if she doesn't have her health?  What if we don't get to care for her very long at all?  What if she passes from this earth without discovering the love of her people here?  What if she breaks our hearts beyond our comprehension?  Do we still want her?

My answer to this question became even clearer on Sunday during church family's gathering. Our friend led us through a time of focus on God's attributes and places in the Bible where those characteristics are expressed.  One, in particular, stood out to me:

DESPISED
"He [Jesus] was like someone people turn away from; He was despised, and we didn't value Him." (Isaiah 53:3b)

Jesus was a humble carpenter.  When He announced who He really was, people basically scoffed, "Isn't he just from Nazareth and Joseph, the carpenter's, son?" incredulous that He was anybody special at all.  He lived nomadically.  He had no home.  He never strove for notoriety, popularity, or power.  He spent time with just a few friends and others who were of ill repute or outsiders.  The crowds grew at times but dwindled down to just a couple people who were devoted and brave enough to be near Him in a seemingly devastating defeat--His crucifixion.  The verse from Isaiah is a prophecy about Jesus.  It was written hundreds of years before it came true when the crowds hollered, "Crucify Him!" and the soldiers mocked Him.  Who could call this no-name failure, Savior?

These are the verses that follow the one above:

"Surely He took up our infirmities
     and carried our sorrows,
yet we considered him stricken by God,
     smitten by Him, and afflicted.
But He was pierced for our transgressions,
     He was crushed for our iniquities;
the punishment that brought us peace was upon Him,
     and by His wounds, we are healed."  (Isaiah 53:4-5)

As I consider Jesus who brought peace with God and healing despite our despising Him, I think of our Wylie.  There are many things about Wylie, in general, that people may consider unfavorable:  an unknown future, a very short life-span, a fragile heart condition, possible genetic abnormalities that could lead to serious problems.  And yet, I want what I have.  I want this baby girl no matter.  I realize that God (Father, Son, and Spirit) creates people in His image.  Wylie carries part of this image of Jesus that may turn people away from her. 

My heart has been wooed by Jesus.  More than anything else, I want HIM!  How precious that He and I can say, "I am my Beloved's and He is mine."  I want what I have.  He has given us Wylie as a precious gift.  I want what we have in her.  I want what I have.      


Thursday, January 31, 2019

A Strange Feast

Gavin and I had an amazing backpacking adventure before we had children.  We started in St. Andrews, so Gav could play the Old Course, we traversed through York, London, Paris, down the Rhine to Rothensburg, over to the Cinqua Terra, more south to Florence and Rome and ended our excursion in Venice.  It was absolutely wonderful.  My favorite was the Cinqua Terra, "The Five Lands," literally perched on the Mediterranean Sea. 

I remember a night we spent there on the shore amidst the open air restaurants and the Italian vacationers.  I had the best latte of my life, never to be repeated, I'm sure.  I was also so impressed by those dining.  They spent hours at the table.  Laughter, loud talking, the clink of the glasses and silverware was like music beside the sea.  The merry-makers continued even after we had finished our meal, had dessert and coffee and walked back to our flat.  We had witnessed true feasting!

As amazing as that night was, it fell short in this regard:  Though we took in the beauty of those feasting around us, we didn't sit down to join them.  We just watched.  It reminds me of a special time I had praying with a friend during which I saw a picture of my spiritual life. 

I could see myself on my knees beside a table, gazing at crumbs in my hand, trying to be content and grateful for them.  Jesus was in this picture, too.  He was seated at the table.  Though my ears didn't hear a sound, it was if Jesus said, "What are doing down there, friend?  Please, come sit beside me.  Here is your place right here at my table."  I can say that, in a spiritual sense, I keep trying to take Jesus up on His offer.

A meaningful verse to me in reference to this picture of feasting with Jesus is from the well-known Psalm 23:

"You prepare a table before me in the presence of my enemies."

What a strange thing to do!  When enemies are near, we eat?  We sit down and feast when there is a chance of harm and provocation? 

Well, here we are.  Enemies have drawn closer.  Our recent blood test result gave us information that was both shocking and heavy.  Wylie's DNA does not indicate that she has Trisomy-21 (Down Syndrome), but instead a different and more severe chromosomal abnormality, Trisomy-18 (Edward's Disease).  Her test was almost 90% positive. 

We have begun to process what this may mean for the future.  Here is what the percentages say:  of those pregnancies given a chance to continue (about 86% are terminated) only 50% of the babies are born.  Of those born, 90% will pass away before their first birthdays.  Because the 18th chromosome is physically bigger, babies with such a large amount of extra genetic material can struggle in every way. 

Right now, Wiley's body is growing and developing heathily in so many ways.  Our perinatologist and midwife are committed to caring for us and making sure we have additional doctors and surgeons who will contribute their expertise in helping her as best as people can do.  We will monitor her and make plans for her birth and the interventions she may need to have the fullest and best life possible.  These are the things we can do.

Our enemies (disease, doubt, anxiety, fear, control, death) encroach, but the gift of Wiley's life and God's promises shine ever brighter against the dark backdrop cast by these interlopers.  This is what comes after the first verse I shared:

"You anoint my head with oil;
     my cup overflows.
Surely goodness and mercy will follow me all the days of my life
     and I will dwell in the house of the LORD forever."

At the most unlikely time, with enemies surrounding us, we are invited to sit.  Indeed, our cups overflow in the sense that we are astounded by the miraculous gift Wylie is.  We have only experienced a hint.  We are also amazed by what God has done to make hope, faith, and love possible in whatever the future may hold.  We are certain, just as David was in writing this Psalm, that God has only goodness and mercy in mind for us--all of us.  Our cups, at His table, indeed overflow. 

 




Tuesday, January 29, 2019

A Place of Rest

At the end of September, I began reading the Psalms.  I read one each day.  Last night, I read Psalm 88.  If you do the math, you'll note that I've skipped some days, but not many.  The reason I read every night is not that I'm a very disciplined person.  No, it's just easy like dessert after dinner.  Every night before I bed, I open the Bible and know God has something to tell me--little old me.  It is very much like dessert after dinner.

So, last night was interesting.  I will include Psalm 88 here so you can have the context.  Please bear with the length and that it's the Bible for those of you who may not be so inclined to read it.

O LORD, the God who saves me,
     day and night I cry out before you.
May my prayer come before you;
     turn your ear to my cry.

For my soul is full of trouble
     and my life draws near the grave.
I am counted among those who down to the pit;
     I am like a man without strength.
I am set apart with the dead,
     like the slain who lie in the grave,
whom you remember no more,
     who are cut off from your care.

You have put me in the lowest pit,
     in the darkest depths.
Your wrath lies heavily upon me;
     you have overwhelmed me with all your waves.
You have taken from me my closest friends
     and have made me repulsive to them.
I am confined and cannot escape;
     my eyes are dim with grief.

I call to you, O LORD, every day;
     I spread out my hands to you.
Do you show your wonders to the dead?
     Do those who are dead rise up and praise you?
Is your love declared in the grave,
     your faithfulness in Destruction?
Are your wonders known in the place of darkness,
     or your righteous deeds in the land of oblivion?

But I cry to you for help, O LORD;
     in the morning my prayer comes before you.
Why, O LORD, do you hide your face from me?

From my youth I have been afflicted and close to death;
     I have suffered your terrors and am in despair.
Your wrath has swept over me:
     your terrors have destroyed me.
All day long they surround me like a flood;
     they have completely engulfed me.
You have taken my companions and loved ones from me;
     the darkness is my closest friend. (emphasis mine)

In Bible Study Fellowship this year, we have learned about the Psalms since we are studying books of the Bible that include King David's life.  He wrote many of the Psalms, but not this one.  We've learned that there are three different types of Psalms:  Hymn (Praise), Thanksgiving, and Lament.  I bet you can guess which type this one is.  More than half of the Psalms are laments.  What I find interesting is that Psalm 88 does not follow the normal pattern of a lament which is a cry or plea that leads to confession and then praise.  Do you notice how this one ends?  "The darkness is my closest friend."  This is not an ending of praise.

From our life circumstances, anyone would understand if darkness described the condition of my soul.  You could sympathize if I was crying out to God and "my eyes were dim with grief."  There is absolutely nothing wrong or sinful about this psalmist's response.  On the contrary, a lament is everything right.  It is our heart cry that God wants, whatever it may be. I considered this and thought, "But this is not me right now.  Even in this difficulty, I am not in a season of lament, but rather in a place of rest."  How could that be?  Why am I not lamenting?  Rest, really?  Herein lies my reflection of the past week since finding out more about our Wylie.

Love makes a place for rest.  She nurtures a soul to admit weariness in the bones.  She is so gentle in her pursuit as she lulls and quiets any noise or agitation.  Her acceptance entreats a vulnerable laying down of anything heavy or cumbersome.  Guards fall and hands fold in the lap--peaceful surrender.  That's what love does sometimes.  That's what love has done for me this week.

All your prayers, all your kind words, all your help, all your blessings have made room for rest.  Even now.  Even in this.  Thank you.

Thursday, January 24, 2019

Holding On and Letting Go

Just a couple of days into this new journey and I've already assessed if I'm doing a good job with handling all the new information we have learned about our daughter.  It truly is remarkable that a mom knows just what to say.  When I called to tell her that baby likely has Down syndrome, she gave advice I didn't realize I'd have to follow so soon.  "Don't try to be perfect in this, Karla."

The very next morning, I found myself insecurely questioning if I was doing all this right.  I looked at myself in the mirror.  "Here it is.  Just like my mom knew.  I think there's a right way--a perfect way to cope--and I'm wondering if I'm measuring up to it."  So, I stopped.  I just stopped.

Then I started.  I started letting go: letting go of perfectionism, letting go of "shoulds" and "what ifs," letting go of fears and doubts, letting go of unhelpful and unrealistic expectations for myself, letting go of the illusion of control, and letting go of thoughts that are just not true.  But I also started holding on--holding onto faith, holding onto hope, holding onto hands, and help, and goodness, and holding onto the Way, the Truth, and the Life--Jesus!

And do you know what I've found?  It's so easy to hold on when you're already being held!

The News



I just took off the wrap from my arm with a bit of sadness.  It was a physical symbol that something happened to us today.  I told the phlebotomist as she wrapped the band.

“We found out today that our little girl likely has Down’s syndrome.”

She gave me her eyes with kind expression and told me about her grandson who has epilepsy and seizures.  “It’s hard, but I love him so much.”
Yes, that keeps coming today--the gift of a person who is different.  I shared the same message with our children when explaining the news from our appointment.  
“God has given us an extra special gift in your little sister.”
“Will she have superhero powers?” Beau asked.
Though I answered Beau with a “no,”  I think I might have been mistaken. I’ve heard today that people with Trisomy-21 have the “love chromosome”--that their affection and love are contagious and generous; that they exude joy, carrying the happiness of the whole family.  My friend relayed a story of her friend who, after growing up with a sibling with Down’s, adopted a baby with Down’s because she always wants a special person in her life. I think we are all about to be changed. That sounds like superhero power to me.
Gavin reassured the children, “We can be certain that God is giving us His best.”  And I absolutely believe him.  Another friend had surprising news recently and we were relating about our reactions to God’s mysterious ways.  Through our conversation, it occurred to me that God is not fearful or leary about making us uncomfortable when it comes to giving us His best.
His best is uncomfortable.  Emma and Kendall cried and we told them that we had, too.  In that ultrasound room, we cried. We were overwhelmed, shocked.  Guy found no words. In a private moment together, Gavin asked, “Is there part of you that hopes they will call and the result of the test will be negative?”
I totally got his question.  I flashed back to the ultrasound bed where my legs dangled next to Gavin sitting on the chair beside me. I had a similar thought then, “Why did I even want to be pregnant?  Why did we let this happen?”
Remembering this, I responded. “I know that I will pick a small life.  If it were for me to decide, I would choose the things in which I have power or ability or control.  I would never choose mess. It is normal that we want the small, more comfortable life.”
Yet, we don’t.  A door has opened today to a God-sized place.  Our unborn daughter has ushered us into new. The breadth, width, and height of this expanse is unknown.  The door is open and we are entering.
I am certain that we will grow in our understanding of people with special needs.  We will become well acquainted with the wonders and gifts of our healthcare system and amazing providers.  We will be supported, encouraged, and loved by our family and friends. We will gain a whole new circle of guides and comforters along the way.
I can’t wait for our daughter to meet these who are preparing her way into the world.  There will be pain, a heart surgery even. But there will be a God, who has made her wonderfully and purposely, and a whole host of ones who adore her.  They will cushion us. They will ease the pain.
I threw the band in the trash can.  The place where she drew my blood that carries my daughter’s DNA is already healed.  Just a small, red dot remains.

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Some thoughts from Gavin

I have sat down numerous times to summarize my thoughts about the news we received last week and it has been too difficult.  There are so m...

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