The goodness of the Lord

in the land of the living.

ten months

This week we celebrate something wonderful and amazing.

It has been ten months of no seizures!


This is such an incredible marker.  The month's timing coincided with a visit to our neurologist today.
It was, perhaps, the most cursory visit we have had yet.  Cursory simply because Luke is not actively experiencing seizure activity.  Thorough, however.

His blood tests all returned with great results.  Liver function is excellent.  His body is tolerating well his medicine.  We have not yet seen any of the side effects that can happen with this medication.  Thanks be to God.  His load level of the medicine in his blood stream was in a good range, too.  And his hemoglobin levels are all great.  No medication changes!

Luke and I left, and in the hallway I turned to him with tears in my eyes and a huge smile on my face.
He leaped into my arms and we both just hugged one another so hard!

I tried to take a photograph with my heart of the moment.  

His next visit?  A year from now.

Seriously!

We will monitor his blood levels on a regular basis, and those reports will go to the neurologist.  And he has a neuro-psych exam in August to evaluate how his seizure activity is affecting learning.  We also will, obviously, be in close contact with our doctor if there is any noticeable seizure activity.

Will we make it a year?  I have no idea.

What I do know is how momentous it was today to even have that option as a possibility.

There was a time not long ago that I was calling out neurologist almost daily.

And we were paperchasing to bring Emma Kate home.

I was working part-time and Jim had just taken a new job.

I remember I really and truly did not breathe from my chest for almost a year.  I only felt like I took breath in from the neck up.

And God carried us.

So well.

Looking back, all the ways He consoled us with His presence in and through the storms of that time bring sweetness to mind.  Faithfulness.  Steadfastness.

He was good then, and He is good now.


Today, we savor the sweetness of His goodness in a time of rest and celebration.
And celebrate we did!

On the way home, I rallied the troops and we all met up for an impromptu lunch at Luke's favorite restaurant, Chipotle.  He downed his burrito smiling all the while.

Psalm 27 was such balm to me then.  And it still is now.
¹ The LORD is my light and my salvation— 
   whom shall I fear? 
The LORD is the stronghold of my life— 
   of whom shall I be afraid?


Even in the darkest days
 Though an army besiege me,
   my heart will not fear;
though war break out against me,
   even then I will be confident.


To whom we belong, brought solace.  We sought the only One.  And still do.
My heart says of you, “Seek his face!”
   Your face, LORD, I will seek. 


And we knew that we knew that we knew, that regardless of what was to come
no matter what happened
even if it rained and rained, we could trust Him.
With Luke, and with Emma Kate, and with us all.


I truly felt God promise me this, not knowing exactly what was meant by it, but knowing that I knew {and I know} He is good.
I remain confident of this:
   I will see the goodness of the LORD
   in the land of the living.


Over and over again, we did see His goodness.  
And now again, we see it in a new way meant just for today.  
Our hearts are truly humbled.
And grateful.
In awe and worship of One who crafts life so magnificently in both the calm and the storm.
Wait for the LORD;
   be strong and take heart
   and wait for the LORD.


Lord, we take great heart today in your loving-kindness to us.
To our Luke.
For the day that is today and the blessing of walking out of that office this time.
For what we have seen and for the scary places we've trod.  We know we never walked alone.  Not one single second.
For what has been and for what is and what might come.  


In it all, we chose you, God. We still choose you who chose us first.
And today we rejoice mightily for the goodness of health.
For healing.
For Luke right where he is right now.


How sweet the goodness of the Lord in the land of the living.

and in other amazing news...

Count them with me:

Seven months.

Seven months since Luke's last seizure.

Grateful, thankful, relieved, amazed.

God is good.  ALL the time.  Both now and back then.

However, as it is written:

   “What no eye has seen,
   what no ear has heard,
and what no human mind has conceived”^[a]—
   the things God has prepared for those who love him—

                      - 1 Corinthians 2:9 {Isaiah 64:4}

With us all the way, He is.

goodbye Keppra

In big news at our house, we bid a happy adieu, goodbye, salukes, zai jian, adjo, adios to Luke's Keppra!


He has finished weaning off of this medication, which was also the very first one he began to control his seizures.


We are thrilled, jubilant, exultant and in the midst of that bevy of loud emotions, also simply quietly grateful.  


A long, deep breath.


Had by all.  Including my mom. {Hi, Gogo}.


We are now on one, lone drug.  It is a "big gun", and so far we have not experienced a single side effect.  That is amazing.  


Luke feels a sense of closure, in some ways.  And he is feeling like this marks "progress" made.  That perception is magnificent.  And a great focus.  


We are at five and a half months without a seizure. We see Luke making incredible strides at school now that his mind is able to flow and function smoothly.  It has been an honor as his parents to see the trajectory from last year to this year.  Truly a miracle.


He is sharp and quick-witted.  I love listening to him take his word study words and craft stories.  They always have a great twist and turn.  His creative, clever side will serve him well, when well-harnesed and trained.  He is such a delight to parent.  A true mix of little boy and young man.  Sometimes both in the same moment, really!


So a celebration is on at our house!  We are so glad to be here.  Right here today.  On what feels like a quiet path after a year of literally feeling like I was pedaling up a mountain, one agonizing pedal stroke at a time with lungs screaming for air and legs straining.  


Onward.  Led to a more level part of the path.  


Regardless of what is to come, and because of what has passed, we take joy in the here and now.  


It surely feels restful!  


If last year was mountain terrain, today is a sweet cruise along a country lane, with ample shade and perfect sunlight dappling the road.  Long, deep breaths of cool air and a song in our hearts.  


There is a sweetness in the ordinary and mundane of everyday, of normal, that is only tasted with startling surity and gratefulness after the arduous depths and hard heights of difficult.  Hard pressed, but surely not crushed.  Perplexed, but not in despair.  


And the season turns, God builds in it all, and we learn grateful for everything.


Grateful for then and so sweetly grateful for today.


Goodbye, Keppra.  We are glad to see you go.

and all was quiet

Luke had a sleepover last night.

His first in over a year.  His first since he started experiencing seizures last Thanksgiving.

For the past four months all has been quiet in Luke's brain.  He hasn't experienced a single seizure (that we are aware of).  No large seizures, no small seizures.  Nothing.  None.

Peace in his brain.

Luke has missed his sleepovers.  He loves to flip flop houses that way with a few of our close family friends.  He and Isaac have been sleeping over at one another's houses for years!  The Anderson's, for us, are family.  The Lord knit Kris and I together in a Women's Bible Study years ago, and we've been dear friends ever since.  Having our children line up like ducks in a row age-wise circled us close circumstantially.  Kindred hearts completed the match.

Isaac asked for Luke to sleepover, and for the first time in a year, we said yes.  A confident and peaceful yes.

Sparkle, were Luke's eyes.  Singing, my mother's heart.

I know how he has longed for this.  He's been strong and patient and he has waited.

Four months.  One hundred twenty days(ish).  For the reality that he can have this much time without a seizure we are so encouraged, relieved and, yes, happy.

All's been quiet in Luke's mind, and tonight all was quiet in our house.  Thanks be to God, what things He has done!

How beautiful on the mountains are the feet that bring good news...

 How beautiful on the mountains are the feet of those who bring good news, who proclaim peace, who bring good tidings, who proclaim salvation, who say to Zion, “Your God reigns!”          - Isaiah 52:7


In this season of the best of news of a Babe, the One, our Jesus, I have thought about the angels bearing news as they rejoiced in the nighttime sky and the stars danced around them.  I wonder if the shepherds felt joy or fearful awe?


And Mary.  Sweet, young Mary.  Surely as much as her magnificat unveils a heart filled with thanksgiving and love, she must have also sung it with reverent questions in her mind.  Pondering these things in one's heart often involves mulling things unspeakable.


While our day has not seen daybreak met with choirs of angels heralding the King, and we have not received news that will change the world, we have had a day that for us, marks the joy of good news.  And to our beloved neurologist, Dr. Ritter, we do proclaim that his feet are beautiful to us.  And to one another we do proclaim with joy, with thanksgiving, with wonder-filled and hopeful hearts, "Our God reigns!".

Our God does reign.  Over it all.  And today He reigns over the good news for Luke.


All is calm and all is bright in his little brain these days.  His medications are working well, and things are going so smoothly that something we have waited for with a bit of baited breath will happen after the new year begins.  In January we will begin decreasing one of his medications, Keppra, until, if all goes quietly, Luke will taper off of it completely.  


One medication.  This seemed almost impossible to us in the past.  


Luke received the beautiful news of his MAP test reading scores.  What is so wonderful about them is that they show a child who is not suffering seizure activity moment by moment making of his reading ability a swiss cheese slice.  He made truly miraculous strides since this time last year when what we saw was so much more indicative of small storms in his wonderous brain than his smarts or ability.  


We are grateful.  We are thrilled.  And we are hopeful for what lies ahead.  While we know this is only a step in the journey, it is f.i.n.a.l.l.y! a step in the right direction.  One step for that we give thanks and praise to the One whose sovereign hand is over it all, the steps we like and the ones that hurt.


One funny aside is that when Dr. Ritter walked in, our Albert Einstein-look alike had a new haircut.  Luke took one look at him and said, "Dr. Ritter, I really like your new haircut.  It looks good".  


Dr. Ritter's thick, white eyebrows shot up and he glanced askance at me and quipped, with a large smile on his face, "Who put him up to that?".


He's just as smart with his hair shorn as he is when it is a moving halo about his head.  A crown of wisdom is what it used to look like.  Now it is simply well coifed, and he is wise.  Not a bad combo either way.


Today we give thanks for the peace that exists in Luke's head, for the good tidings of news about his lack of seizures and the treatment ahead, and for this good day.  It is a gift from Him, and we rest secure in His grasp, as always, held securely by our King.


Love from our happy home to yours.
May your day, with whatever the news it brings, be filled with the good tidings of great joy that Jesus is King!

Sustaining grace

A new year.

For us at least.

Today marks a year from last year's first Sunday in advent, when our world truly turned upside down.
And while I want to recount the year that passed, most of all my heart today longs to recall instead of the grueling details of last year, God's profound goodness, mercy, love and faithfulness to us.

Last year, we were awakened at 5am to our Luke in the throes of a grand mal seizure on his bedroom floor.  His entire body was convulsing, his eyes were fixed and dilated, he was foaming at the mouth.  The seizure lasted five long minutes and ended in an ambulance ride to Children's Hospital with him unable to even tell us his name.

I remember the 911 call and literally not being able to get my breath on the phone as I spoke.  I was winded from fear.  My legs were jelly as I raced back upstairs to the bedroom to give them information.  The two minutes it took for the ambulance to arrive felt a lifetime.  Leaving our other children, stricken with fear, waiting at home with Jim's parents was so hard.  And while I prayed aloud in the ambulance, all I remember repeating over and over is a mumbled phrase, "Help us, Jesus.  Help us, Jesus".  I knew, even as my mind would not work to come up with words and my mouth was thick and dry with terror, that God was at work.  We were not alone nor did we need to beg for help.  God was very present, very much with us, completely holding us together when we were falling apart.  And He was mighty for His beloved little Luke.

The day had us returning home with instructions to rest and know usually another seizure never happens, only to rush back to the hospital as another seizure shook his body in late afternoon.  One of the longest days of our lives does not even begin to describe the agony of those long hours.  The late, late night hospital visit from our pastor, Jeff, stands out in my mind as a moment of respite in that day.

One of the longest months, and seasons of our lives, is how it became.  In the week that followed, Luke had another seizure in the car as I drove him to school.  This resulted in an official diagnosis of epilepsy and the beginning of a series of drugs, tests, appointments and doctors.  And many more seizures; many, many more.  A trudge at times, and a soldier's defiant march at others is how we walked.

We joined a "club" we had no interest in belonging to.  My imaginary membership card was soon tattered from use, and I learned to not crumple it in frustration, but instead think of it as a badge of courage.  That imaginary membership card is one of the things that I will bring with me to the end, and cast down before me when I arrive There to say, "Jesus, You made a way, and gave us a courage we didn't know we had.  You were with us completely.  We saw you in it all the way".

We took refuge in James 1: 2-3
Consider it pure joy, my brothers and sisters, whenever you face trials of many kinds,  because you know that the testing of your faith produces perseverance.  Let perseverance finish its work so that you may be mature and complete, not lacking anything. 

And found solace and strength in Romans 5: 1-5:
Therefore, since we have been justified through faith, we[a] have peace with God through our Lord Jesus Christ, 2 through whom we have gained access by faith into this grace in which we now stand. And we[b] boast in the hope of the glory of God. 3 Not only so, but we[c] also glory in our sufferings, because we know that suffering produces perseverance; 4 perseverance, character; and character, hope. 5 And hope does not put us to shame, because God’s love has been poured out into our hearts through the Holy Spirit, who has been given to us.


This past year, for Jim and me, has been one of the hardest years of our lives.  We have had one other season that was as grinding and hard.  There may be more, because such is the fabric of a life.  Joy and sorrow, hurt and hope, hard and beautiful, all mixed up together.  Jesus tells us to have courage, and to take heart.  What a relief to hear this from Him.

John 16:33 is a verse I truly treasure, and often quote.
“I have told you these things, so that in me you may have peace. In this world you will have trouble. But take heart! I have overcome the world.”


This morning we are almost three months into a new series of drugs and Luke has not had a seizure in all that time.  For that we give great thanks.  He did not have a seizure the entire time we were in China, and for that we are so grateful.  We woke to a quiet, peaceful house this morning.  It was a restful peace.  And in that hush of home and of heart, I recalled a very different kind of peace that I met last year on this day.

Last year my peace was not in circumstances.  Last year on this day, I had a peace that was in my Lord, even as our world shook and it felt as if mountains were tumbling and crashing into the sea.  Jesus gave us peace that isn't about circumstances.  Our circumstances last year looked a mess.  And yet.  And yet.

Zephaniah 3:17

 The LORD your God is with you, 
   the Mighty Warrior who saves. 
He will take great delight in you; 
   in his love he will no longer rebuke you, 
   but will rejoice over you with singing.”



Isaiah 43:2

When you pass through the waters,
   I will be with you;
and when you pass through the rivers,
   they will not sweep over you.
When you walk through the fire,
   you will not be burned;
   the flames will not set you ablaze.

Today, I testify before any of you who read these words, that the Lord our God is a mighty God.  He is the One and Only.  There is no other .  As advent begins anew, and we usher in the season of waiting for the arrival of Emmanuel, God with us, this day we recount each moment of last year when we lived God with us in fullness.  Blessed be His name in all the earth.


Soli deo gloria, 
again and again and again,
Sara

Faithful

“The LORD will fulfill his purpose for me; your love, O LORD, endures forever— do not abandon the works of your hands.”- Psalm 138:8


That was the verse for the day, today, on my devotional.  And as only God can do, it was literally also His personal Word for us this day.


Every, literally EVERY prayer from yesterday, the Lord answered today.  It felt like He laid the requests on our hearts so that we could watch Him show up and deliver!


We officially have a new doctor and clinic to walk with us in treating and managing Luke's seizures.  And our new neurologist looks like Albert Einstein, which is quite comforting really.  A compelling combination of incredibly erudite and an engaging "bedside manner".  He was incredibly thorough in both his assessment of Luke and his explanations of what he was thinking and seeing.  He spent an hour and a half with us in office, after a 2 hour EEG.  


God uncovered some nuances to Luke's seizures that until now were not known.  It is huge news, and I still haven't taken it in.  Our prayers for things hidden to be brought to light were answered.


Dr. Ritter had wisdom in both diagnosing and in prescribing a mode of treatment for Luke that felt insightful, thoughtful, thorough and backed by a wealth of knowledge and years of work.  I learned more in an hour than I have in six months.


Jim could not come with me, and we agreed that I would use my best judgement to discern if Dr. Ritter was the better fit for our family.  It was very easy to make that decision and by the end of the visit Luke and I left with new prescriptions, appointments and a vitamin regimen.  


Luke did well.  He was a trooper, and even though the EEG was hard (he needed to lay very still, do certain things at certain times, and then fall asleep and wake up repeatedly) he hung in there like a warrior.  He should feel very proud of his hard work today.  He was also very patient with the long doctor's visit.  Dr. Ritter did a great job of engaging Luke and including him in the conversation.  And Luke did a wonderful job of responding, and then quietly waiting while we talked at length (and breadth!) about his seizures and treatment.  


Thank you, Lord, for your faithfulness unto us.  Thank you that we can count on you, and that you never let go of us.  Your love, O God, endures forever.  And today we give you praise and thanks that your eye is on the sparrow and your purposes for us, for Luke's appointment today, are fulfilled.  


To God be the glory, great things He has done.
Amen and amen and amen.


Thank you for praying and lifting us to the One and Only One who is able!


Love,
Sara and Jim
and all the family!

we would love your prayers

If the Lord brings Luke to mind on Tuesday, June 29th (that's tomorrow) would you please pray for him?

We have our "second opinion" appointment over in St Paul, starting at 7am.  Luke has a 2-hour EEG followed by time with the neurologist.

I am hopeful, yet trying not to have too many expectations.

Specifically, we would so welcome and appreciate your prayers for:

• Luke to be of brave heart.  To not look to the left or the right, but keep his eyes fixed on the Lord (Joshua 1:9).  
• Wisdom, discernment and Holy Spirit-propelled insight for the doctors.
• Anything that is still uncovered or hidden be brought to light.
• Either confirmation of his treatment, or another path to take.
• Discernment for which doctor to use (current or new)
• For Jim and I:  Psalm 112:7- steadfast hearts who trust in the Lord (and don't fear news)

Thank you!  We are grateful to have you uphold us to Jesus, who is faithful, true and able!  

God's peace and grace to you, 

Love,

Sara and Jim

Love, Forgiveness, Faith, Hope

Love, Forgiveness, Faith, Hope

"Love means to love that which is unloveable, or it is no virtue at all; forgiving means to pardon the unpardonable, or it is no virtue at all; faith means believing the unbelievable, or it is no virtue at all; and to hope means hoping when things are hopeless, or it is no virtue at all."
G.K. Chesterton


The last line of that quote is exactly what the Lord has been running through my mind like a refrain all morning.  Hope is about what we can't always see.  It is God at work and knowing He's great and He's good.


Luke woke up with a seizure again this morning.  Second week in a row.  We haven't had one since his epilepsy diagnosis in December until we were on vacation last week.  Scary.  Hard.  Worrisome.

⁸And we know that in all things God works for the good of those who love him,^[a] who^[b] have been called according to his purpose. - Romans 8:28


We have had hard family news on another front.  And my heart knows that it knows that it knows that we are called to love.  With our words.  With our actions.  With our choices.  Scripture tells me that if I take care of the rest of the world and not my own family, I am as good as an unbeliever.  In Ruth I see God's beautiful picture of Ruth calling on Boaz, their kinsman-redeemer.  


⁷But we have this treasure in jars of clay to show that this all-surpassing power is from God and not from us. ⁸We are hard pressed on every side, but not crushed; perplexed, but not in despair;⁹persecuted, but not abandoned; struck down, but not destroyed


And Emma?  Sweetest, waiting Emma.  We were planning on going stealth to our fingerprint appointment today.  It is scheduled now for April 19th.  Luke is scheduled for a 24 hour EEG that day.  Please pray for us that we would find favor when we go.  We are clearly not going today.  We are home with Luke.  We need to get those done asap.  And we are trusting the Lord that He will make a way, and  is even now making a way for us, for the paperwork, for the fingerprints.  Not sure what that is going to look like.


I have been working on a much different post, and it is coming!  There is heavy, hard stuff going on, and yet in the midst of it God is indeed giving us deep pools of joy, renewal and strength. 


We had an amazing, incredible, beautiful trip to visit my parents in Arizona last week.  Can't wait to share a few photos.  Emma, we brought you along with us in our hearts.  It was a week of rest, relaxation, enjoyment, and bubbled with love.  Love of each other and love of our sweet savior, Jesus.  


Sunday morning we were back home.  As  we sat in the balcony at church and the beginning music swelled from the organ, the deacons opened the interior shutters that were all closed waiting for Easter morning.  We were baptised in sunlight streaming into the sanctuary.  I forgot they do that on Easter morning.  The light was gorgeous.  Glorious.  It took my breath away.  An incredible reminder of Jesus shining into our lives.  The promise of Easter morning that changes everything.  The cross was Friday, the empty tomb Sunday.  Those 3 days changed everything.  Forever.  


That changes everything for me.  Today.

Job 19:25

 ²⁵ I know that my Redeemer ^[a] lives,
       and that in the end he will stand upon the earth. ^[b]