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.

Now TOOTH this

Church is a wholly place.

Yep.  I meant that.

It is surely holy, as it is a place God's people meet and wherever we go we bring the Lord.  So in that sense, church is a holy place.

If you are Anna, you also make it wholly.  Multiple times.  Whole-y.

Do you see that gaping hole?

Scratch that.  Those gaping holes?!

Last night at Faithtrek, Anna lost a tooth!  This is the second time she's lost a tooth on Wednesday night. Her small group leader, the wonderous Carla, was laughing so hard.

 Isn't she lovely?  There are numerous spaces for some sparkly new teeth grown-up teeth to grow into.

But, wait!  That's not all!

Because yesterday Luke also lost a tooth!  His first molar. 

The tooth fairy had a really big night at our house last night.   

We were dearly hoping that another incredibly loose, hanging-on-by-not-much tooth might emerge from another customer's cute mouth...but alas.  

  

That tooth right there in the center? It's time has come.  

I have no idea how she is eating.  It protrudes straight out it is so loose.  The new tooth is already growing in behind it.  

That tooth has exactly eleven days to leave...or it is going to get yanked before surgery on Valentine's Day.  Yikes!

Hey Emma's front tooth, consider this an official eviction notice.  Time to go bye-bye!

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

ten years and eleven days

because today is both!

Happy birthday, dear Luke!


Ten years ago this morning, sweet Luke arrived in his small, silvery-haired, snuggly cuteness.  Our first babe with hair.  Silvery blond, wavy hair.   I remember staring at that hair endlessly, running my fingers through it, gently rubbing the nape of his little neck.  


Luke, you are our little Tuck.  And I honestly have a hard time believing you are ten!  10!  Two hands worth of years.  You are our ball-loving, laughter-bringing, life-living boy, who is as sweet as sweet and as boyish as boy.  Turtle hunter extraordinaire, obscure animal lover, chipper and cheerful, gentle and driven.  


Luke is a blessing.  A son who makes our hearts sing with joy.  And what a last year he has had.  The Lord has grown him in some very serious and huge ways.  The onset of his seizures in late November turned our lives a bit topsy-turvy.  Truthfully, a lot topsy turvy.  Luke dug in, deciding that the Lord was with him and so He would trust; the Lord IS with him and he can trust even when.  I've seen Luke develop perseverance and endurance.  Fortitude.  He is, in the hardest of hard, growing in grace in ways that astound me.  Luke is learning to be flexible about his view of life: to hold loosely to things to give God room to show up.  And show up, the Lord does.  He is also developing the skill of holding fast to that which matters, that which remains.  And in Luke, I see glimpses of who and what he is growing into.  It is lovely to behold.  And a true work of the Lord.


Luke Tucker, we love you.  So very much.  And bless you in Jesus name.  


"We pray that out of his glorious riches he may strengthen you with power through his Spirit in your inner being, so that Christ may dwell in your hearts through faith. And I pray that you, being rooted and established in love, may have power, together with all the saints, to grasp how wide and long and high and deep is the love of Christ, and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God."
                                                                                               Ephesians 3:16-19




And...
eleven sleeps to China!  
ELEVEN!  

last week

of summer!

Like all last weeks it is filled with much preparation for the year to come.  So fun!  Nothing like fresh new school supplies, spiffed backpacks, crisp fall clothes to sweat profusely in don for the first day of school!

Personally, for me, I always look forward to getting our home really back in order after a summer of fun together.  I am longing and yearning (and yes, I know this is weird) to scour my cupboards, wash the floors the old fashioned way, and organize all the nooks and crannies of closets.  Away go the swim towels, out come the fall coats.

What is it with living up north and all the variations of fleece, down and gortex that we need.  Honestly!

I need a good system for mittens and hats.  And our boots need a better place to rest than the floor of the shoe closet in the mud room.  So I'm going to get organized that way this fall, too.  We have six shelves in there...and soon there will be seven of us.  Hmmm.  Time to get creative!  Jim, you just lost your shelf.  How's that?  Just kidding, honey.

We have one last weekend up at the cabin with my parents.  It will be special and bittersweet this year.  The cabin is for sale.  Anna is fervently praying it sells in ten or twenty years.  :)  So we are so grateful for this time to say goodbye together and play and a beloved place.  As we leave, I think we all need to say, "Next spring in Arizona", instead of goodbye!  We have many new places to make memories together.  The lake has been a blessed place, and now there are new locations for us to discover and enjoy together.  It's us, the people, more than a specific place.  That's what matters.  Mom and Dad, we love you!  Thank you so for the gift of Lake Tahkodah ALL these years!

We are in the process of weaning Luke off of one of his seizure meds and ramping up on the other one.  He is doing great.  The side effects as we switch are not horrible, but are a bit challenging.  Opportunities to speak truth and love on Him with grace and gentleness.  His stamina amazes me, and he is plowing such good ground.  We stand firm on the promise that God is with us and for Luke; in all of it!

At work, I am in my last two weeks.  I am done on the 15th.  Wow.  Can't quite believe it.  We are recruiting for fall teaching, and busy getting the rooms spiffed and in order, prepping curriculum and doing all the things that a new programming year brings.  What an incredible team I have worked with.  I am so grateful the Lord will keep us close and while I will not be there in a paid position, I will still work with them as part of our covenant community.  I'm already dreaming about Jesuralem Marketplace next volunteer opportunities.  :)  Embedded code.

It is now 8:11am.  Time to get the kids up.  In a week, Cooper and Jeb will have already been in school for half an hour.  Ouch!  The early mornings are always a rude awakening (pun intended) to the school year.

I wrote a friend this morning and said, "It will be a big school year this year".  Never were words more aptly written.  It will be a big school year this year.  The year of Emma Kate!  And other things, whatever they may be.  Thankfully, God knows!

Bears and Tigers and...goats? Oh, my!

Let's go to the zoo, zoo, zoo...

And you can come too, too, too...

With Cooper and Jeb gone at church camp, we decided to head out on a fun excursion.

It's been a long time since we visited the Minnesota Zoo, and we had a great time together!  

It was the three of us, and a lot of HOT animals.  Tigers, bears, camels, antelope, asian cows.  Lots to see! Unless you count all the animals submerged in murky green water waiting for dusk to arrive.  They were bumming, I'm telling you.  HOT animals!

 I won't bore you with Luke and Anna's animal shots.  Especially since I always make snarky comments about people who photograph the animals standing there bored in their "environments".  I know.  I'm sarcastic that way.  But really, what in the world are you going to do with animal photos once you are home?  

For us, the highlight was...(don't laugh now, we're city folk)

We had a ball.  Petting, snuggling, grooming.  The mennonite people who arrived at the farm in the same wagon load of people as us seemed a bit confused.  I think they might have thought we were a bit loony to come to a zoo to see...farm animals.  

As a girl who has always harbored quiet dreams of pygmy goats, I was in heaven.  Those goats are so cute.  And we learned they are mighty closely related to sheep, too.  Who knew?  Probably you did, but we didn't.  No wonder Scripture references sheep and goats together.  I'm sad the goats aren't coming along in that illustration.  I find them much cuter.  And if I had to chose, I'd want to be a goat.  Unless I"m in that illustration.  In that case I'll be a sheep.

But I digress.  

Here's how it all looked at the end of the visit, after four hours in broiling heat

Mighty fun!

Cooper and Jeb return today.  Luke and I head out on Sunday for camp.  Pray for us!  Pray for me!  I'm on staff and leading 130 campers to know, love and follow Jesus.  It is such a fun week.  I really look forward to it, and love seeing God at work in all those kids.  Beautiful.

Emma Kate, we can't wait for the day we sweat it out with you at the zoo.  And we long to laugh at camels wading in water and gasp at the majesty of the leopard as it leaps down a tree trunk.  WITH YOU.  

Time's flying by!  We'll be there SOON.

Day 3, hour .5

8am.  Slept in until 8am.  Seriously vacation time.

Usually Jim and I are true early birds.  For me, it is carrying the Taylor torch.  And Grandpa DeBoer's habits, minus the 6am call to check on the weather! Early birds all over the place on my family tree.

Coffee.  With Cooper.

Luke wearing Pa's Hamline sweatshirt for the second day in a row.  Wearing it because it is Pa's.  And Luke is President of the fan club.  Quote of the day yesterday, "Pa is the the best skiier ever".  Um, it is summer and no one else was even talking about skiing.  For Luke, it all comes back to Pa.

The weather up here in northern Wisconsin is so glorious.  The sky last night over the lake as the sun dropped down over the horizon was breathtaking.  We all agreed it looked like a postcard it was so perfect.  It felt fake!  The sky is a light summer blue in the days with puffy cotton ball clouds that occasionally whiz by.  Quick, cheerful clouds.  The water shimmers in the sun.  It reminds me of 30 years of summer up here.  All I need is my sister, a boom box, a diet coke and some spf 4 with lemon juice in my hair and I'd be 15 again.

I wish my camera would download pictures to this computer.  And somehow I just know the pictures would not do the beauty of this place justice!  Perhaps the fact that this may well be our last summer here has me taking note of each day and treasuring it away in my heart.  Lake Tahkodah has been a sweet gift for our family.  We are grateful for each and every year.

Cooper is now down fishing at the lake.  Jeb is in the bunk house reading in bed (a boy after his mom's heart!).  Luke and Anna are rustling around for breakfast.  And that must mean my post is surely done.

Emma Kate, what are you doing now?  It's night where you are and I imagine you tucking in for the night.  Bless your sleep, in Jesus name, my sweet one.  I can't wait to look at the sky with you, see the morning arrive with you here in our home, and feel the warm weight of you in my arms in the summer sun.

Love from the cabin,
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

Luke update. Or: farewell, adieu Waffle and all quiet the medical front

It's been a big week for Luke:

Waffles the guinea pig met his reward on Saturday night (that means he is dead).  Luke discovered him when he went up to bed.  The yell for "MOM!" was the tone you hear as a parent when you know something is really wrong.  Thank goodness Jim was home.  I'm not so good with rodents.  Blood, vomit, bones: bring it.  Sand, dirt, gushing water: I'm the girl!  Rodents: not. 

I actually ran from the room into mine.  Calling Luke to come with me.

You know.  Because it would be safer to talk in my room about Waffles lying in his cage all stiffened with his mouth agape and his lips pulled back to reveal pointy teeth.  A death snarl.  His feet were up in the air...

Are you totally feeling faint right now?

I'm telling you, it was horrible!  My reaction was so appropriate (just ask me).

Jim, on the other hand (thank goodness there is another hand) was cool as a cucumber.   The picture of manliness.  He soothed and comforted Luke right there in that room.  Then he told me to get a grip (all in a kindly tone) and he removed Waffles from the premises. 

I moved into full Mommy mode then.  I can lay on the comfort when there's not a prostrate rodent in the room.

Luke's lobbying techniques for a new pet include already choosing a charming name.  "Mittens". He is pleading for the arrival of his beloved new pet, Mittens.  What kind of a pet Mittens is depends on the time of day and how agitated his mother evidently is.  He keeps it small when I appear bothered, and ups the ante when Luke determines I am in a relaxed and unassuming mood.  Somehow in Luke's mind this must indicate I need a stirring. Like my lack of vigilance might somehow tip the scales in his favor on short notice.

On another front:

Jim and I met with his neurologist today and received the results of his 24 hour ambulatory EEG.  There were irregular brain waves/activity in the front right part of his brain.  I have no technological jargon for this.  The doctor indicated the level of irregularity and the positioning of the irregularity is typical with his type and presentation of seizures.  

One way to understand it is that his brain is akin to a village.  When one of the residents doesn't like something that is happening, that resident goes and starts gabbing about it to another resident.  They get worked up and start making phone calls and firing off emails and organizing meetings.  Soon, a bunch of "residents" from the village show up and stage a protest.  They want to march in the streets.  There is a lot of talking, yelling and many people milling about clogging up traffic, etc.  

The seizures occur when the residents are all gathered and creating mayhem.  The "talking, yelling, having a strike" situation.  

The job of the medication is to keep the "organizing" to a minimum.  Phone calls individually are allowed.  The residents can meet one and one and have a nice coffee chat.  But no serious social unrest or upheval.  No marching in the streets with placards and unseemly yelling. :)

What the doctor saw on the EEG shows typical irregular activity that is being controlled.  It is spaced throughout the day, not in a specific timeframe.  It is irregular activity that isn't escalating to seizure level.  

It is good information to have, but diesn't really tell us much.  In other words, no new news.  

So.  Is that good or bad?

Jim and I went to lunch to process.  The good news is that Luke is not having seizures all night that we don't know about.  The medication is keeping the brain activity controlled.  And now we know his brain wave patterns are typical for the kind of epilepsy/seizures they suspected he is experiencing.

Bad?  Nothing is really bad.  I'm just having a little bit of a hard time.  Like all I want to do is get in bed and read a novel and hide.  Very helpful reaction. :)

I struggle with thinking about my sweet Luke walking about with his brain firing irregularly.  Just the idea of it, not what it really means in scientific language or reality.  I just don't want his brain to do that!  And I think somewhere in me, since his first EEG was "normal" I thought perhaps all the seizure activity was related to sleep and he'd be safe during the day.  Well, he isn't any less safe now than he's been all the time.  So I just need to remember that it is just as it was yesterday or on January 3.  It is what it is.  

I confess that somehow it was hard to hear for me, though.  I haven't really thought it through, so my guess is that after mulling for a bit God will sort and sift my own feelings and thoughts and I'll reconcile this new information and feel at peace.  I just need a little time.  

That is all there is to report.  Nothing major.  And that's good news.  So we continue with the same dose of meds., etc and we don't have to go back to see the Dr. until the middle of summer.  And that is good!

Thanks for your prayers!  And your love.  

Luke is doing great, he would say.  And that's what matters!  Lacrosse season is about to start, school is nearing its end for the year, the sandbox is officially open for business and was gleefully flooded on Sunday, and there are golf clubs calling Luke's name in the garage.  Sounds like a full plate to me!  

We're grateful for it.

Love you all,

Sara

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]