Category: Trials

What Went Wrong?

Today is National Purple Day for Epilepsy awareness.  We are well aware of Epilepsy in our home because of our son, Aaron.  Aaron is 33 years old and has had uncontrolled seizures since he was in the first grade.  We were a military family living in Germany when Aaron unexpectedly had his first Generalized Grand Mal seizure.

It was a Sunday afternoon when Aaron fell back into my arms, thankfully, and began seizing on our kitchen floor.  I had no idea what was happening.  I remember seeing blood coming from his mouth…later learning that it was because he had bitten his tongue…and I remember yelling for Gary, who rushed into the kitchen and began trying to help Aaron while I called an ambulance.

The ambulance ride to the nearby military clinic…then another ambulance ride to the German Kinder Clinic, which is what we called the children’s hospital…was all a blur.  Aaron spent several days in the hospital, where the German care was good but the language barrier and the differing medical methods and practices were very difficult.  But the thing we did understand was the diagnosis of Epilepsy.

Over the years we’ve tried lots of drugs and other treatments, including hospital stays for video EEGs and surgery to have a VNS implanted, but the diagnosis is the same…Intractable Generalized Seizures.

Intractable – meaning not easily controlled or managed.

Generalized – meaning that the seizures quickly involve the entire brain instead of one small part of the brain.

OK, lesson over.

Because what I really want to do is to share with you the incredible strength and resilience of our Aaron…and of many others I know who struggle with seizures due to Epilepsy or other causes.  And to also share the incredible strength of God that He gives when needed the most.

This past Thursday night, Aaron had a seizure shortly before midnight.  I heard it on the baby monitor that sits on our nightstand beside our bed.  He had another just after 2:20 a.m.  And yet another seizure at 6:45 Friday morning.

He got out of bed not too long after that, heading to the bathroom and turning on the shower right away.  He cleaned up while I stripped his bedding and started the laundry process.  Soon Aaron was in the kitchen, telling me of his bad headache and asking if he could have his coffee.

He spent most of the morning here, as is so usual after these clusters of seizures.

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When he was more awake and feeling better, and after eating a little, he wanted to go with me to pick up a few groceries.  He was happy to come home with ice cream and cashews and sparkling water, and happy to have supervised Mom in buying what she needed to make for his supper request…Lasagna!!

Aaron went right back to bed when we got home, in his for-real bed now since part of his bedding was back on.  And at 3:33 – since Aaron appreciates such precision…he had the hardest of his four seizures.  Yet amazingly enough, within 15 minutes, he was out of bed…though slowly…and was happy for me to finish putting on all of his sheets and blankets.

Aaron always helps me change his sheets, but I certainly didn’t expect him to do that this time.  I told him to sit in his chair, but he didn’t acknowledge me at all as he stood by his bed, ready to help.

This is what I find so amazing about Aaron.  If I had been the one just finished with my fourth seizure, I imagine that the last thing I would want to do would be to help put sheets on my bed.  It was so heartbreaking for me to watch him stand there, part of the time with one hand on his wall and the other on the headboard of his bed, completely out of it.  Then he turned and bent over, just staring at nothing.  He couldn’t talk well at all, but when he saw a wrinkle in his cover, he reached out to correct it as quickly as he could.  I smiled as I saw his autism come out even through his very fuzzy brain.

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He stood there by his bed during the whole bed making process.  He tried so hard to function…to think…to speak…to move.  All of it was such a demonstration of how impacting seizures are on the brain.

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And it was also a commanding demonstration of how tough and brave Aaron is.  How he fights to keep going!  How much he wants his world to be his version of normal, even though it is anything but that.

He only had one piece of lasagna for supper.  That’s because he couldn’t taste food…another sad side effect of seizures.  His hand and mouth tremored, too…yet another side effect.   Then there’s the drooling.  And on the next day, extreme dizziness and needing help to walk because his legs didn’t work right for a while.  Even on Sunday, his sense of taste hadn’t fully returned.

Medicines that help seizures have side effects.  What is what, we don’t always know.  But decrease or stop the meds, and the seizures increase.  It’s a complicated situation.

It’s a reality for far too many people…far too many families.

But I want to answer the question that Aaron asked me on Saturday as he talked about his seizures.  He sometimes verbalizes his thoughts in profound ways, especially when he is thinking about being born to live a life with seizures.

“Mom?” he asked.  “What went wrong with me?”

A heart-piercing question from my son.

So to Aaron I said simply, and say here as best I can:

            Dear Aaron, nothing went wrong with you at all.  God made you wonderfully, as He tells us in Psalm 139.  You are fearfully and wonderfully made.  You were crafted by God.  I don’t know why you have Epilepsy, but I do know that God loves you and He has allowed this for a reason…one that we don’t understand right now.  But God loves you, and so does Dad and so do I.  We think you’re strong and amazing.  Even on our most frustrating days, and yours, we know that we can trust God because we know Who He is.  He is Sovereign, which means He is in charge and He knows best.  We’re glad you’re our son, and we will always be thankful for our Aaron.

“And we know that ALL things work together for good to them who love God, who are called according to His purpose.”  (Romans 8:28)

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The Cold Snap

We have a little bush in our front flower bed, a perennial that we planted probably 17 years ago.  In fact, I can’t even remember the name of this little bush, so I just call it that – Little Bush.  This hardy bush keeps its leaves on all year long, which is part of its charm.  In the summer the leaves are green with some maroon mixed in, and in the fall and winter the leaves are mostly maroon.  Small berries also grow among the leaves in the fall, so by Christmas it seems to be all decorated for the season.  I really like my Little Bush!

Last year, though, probably starting in March, I noticed that Little Bush didn’t look so healthy.  Its leaves that always stay were falling off, until finally only stark, naked branches were there.

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This was quite unusual, and I was worried.  Was I finally going to lose my long lasting little bush?  Was there something that I could do to save it?

I kept looking at Little Bush, wondering what had happened.  Then one day an article in the newspaper caught my attention.  The headline said something about how certain trees and bushes in Wichita were losing their leaves.  I read the information with interest because of my little bush.  The writer explained that earlier in the winter we had experienced several nights when temperatures had dipped to -10 degrees or lower.  These frigid temperatures had damaged some trees and bushes that normally held their leaves all winter.

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There was my explanation, I thought.  This cold snap had damaged Little Bush.  Then the article went on to assure gardeners not to worry but to be patient…that most trees and bushes would begin to grow again in the warmth of spring because their roots were not damaged by the extreme cold.

So I waited and I observed.  I checked my little bush routinely and sure enough one day I saw tiny new leaves emerging on the empty twigs.

 

As time went on and the days passed, the warm spring sun and the rains did their restorative work.  Little Bush grew…

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And grew…

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Until finally Little Bush was back, as pretty as ever!

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I’ve had some cold snaps in my life, too…times and events that came unexpectedly and with little or no warning.  Everyone has.

Cold snaps hurt.  And they take many various forms.

An illness.  A diagnosis.  Sudden death.  Lingering death.  Rejection.  Accusation.  Betrayal.  Job loss.  Divorce.  A prodigal.  Regret.  Guilt.

I remember my dad’s victory over lung cancer…how relieved and thankful we were when treatments were complete and he was in remission.  But before the five-year mark came the blood work and the testing and the phone call…liver cancer…inoperable…four more years of chemo…hospice…

Cold snap.  Recovery.  Then another cold snap.

But through it all, our family verse brought us each the warmth and the hope that we needed: “God is our refuge and strength; a very present help in trouble.”  (Psalm 46:1)

Sometimes our hard times…our cold snaps…make us feel like David when he said, “My tears have been my food day and night, while they say to me all day long – “Where is your God?”  (Psalm 42:3)

Where is God in our pain?  Oh, He hasn’t gone anywhere!  He’s a very PRESENT help in our trouble, remember?  He’s right here with us.

Right after David said his tears were his food, he said, “Why are you in despair, oh my soul?  And why have you become disturbed within me?  Hope in God, for I shall again praise Him for the help of His PRESENCE.”  (Psalm 42:5)

My little bush had hope because its roots were secure, and so do we who know and follow Christ.  We have hope in our despair because we know that God is sovereign…He is in control…He has a plan…He is present…and He has a purpose for the cold snaps that rock our world.

“I called on Your name, O Lord, out of the lowest pit.  You have heard my voice.  Do not hide Your ear from my prayer for relief, from my cry for help.  You drew near when I called on You.  You said – “Do not fear!”  (Lamentations 3:55-57)

God is near in our pain…near in our pondering…near in our praise that arises even out of hurt and unanswered questions.

I love these lyrics of Jeremy Camp’s song, He Knows:

 

All the bitter weary ways

Endless striving day by day

You barely have the strength to pray

In the valley low.

And how hard your fight has been

How deep the pain within

Wounds that no one else has seen

Hurts too much to show.

All the doubt you’re standing in between

And all the weight that brings you to your knees.

 

He knows

He knows

Every hurt and every sting

He has walked the suffering.

He knows

He knows

Let your burdens come undone

Lift your eyes up to the one

Who knows

He knows.

 

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My Father’s Grip

I grew up in the little town of Princeton, West Virginia.  My Dad worked for the railroad there; first the Virginian, and then Norfolk and Western.  The railroads were a central part of life there in those West Virginia mountains.  It was coal country, and trains were vital for the coal industry.

The sounds of those trains, heard at all hours of the day and night from our home not too awfully far from where Dad worked, were an ever-present part of my childhood.  Even now, the sound of a train will take me back to those early days. 

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Dad worked his way up the “ranks” and eventually became a train dispatcher.  I don’t know how long it was before he one day told us of his promotion to Chief Train Dispatcher.  I didn’t understand much about his job, but I was always proud that he was a CHIEF Train Dispatcher.  He had a very responsible job, working long hours and often on weekends, or getting calls at all hours of the night to go in if there was a dreaded derailment. 

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Sometimes Dad would let one of us kids go to work with him on a Saturday, especially if he was only working a half day.  I just loved those Saturdays when it was my turn to go to work with him!  I remember entering the old wooden train depot building, where we would walk up a long set of wooden stairs to his second-floor office.  This old building smelled of wood; tobacco in various forms; pencil erasers; and trains, of course.

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There were crisp sounds of radio static as the men talked to the engineers on the trains; telephones ringing; the staccato ping of old typewriters; and the roar of huge trains when they would pass below us. 

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Dad would give me some paper and a pencil, and I would pretend to be working just as he was.  I loved watching the lights come and go on the huge control panel behind his desk, showing the progress of various trains that were running all over southern West Virginia. And always, sooner or later, Dad would take me down the hall to the Coke machine and the snack machine.  He would buy me a Coke and a pack of Nabs, and I was in heaven!

What made the biggest impression on me, though, was when Dad would go down those long stairs and outside to the train track, taking me with him.  Sometimes he would attach a paper message to a pole there beside the track, and then we would wait.  Soon I would hear it…the unmistakable sound of a train in the distance, coming ever closer to us. 

The clickity-clack of the wheels, and the train whistle blowing, blowing, blowing in the distance, told me that soon the train would be bellowing past us…right in front of where we were standing!  And suddenly, there it was!  Huge and black and so very loud and terrifying, too. 

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Yet I wasn’t afraid, even though I was so close to such power and danger.  You know why?  Because my dad held my little hand in his big hand.  He held gently yet firmly.  I trusted him totally.  I knew that where we were standing was safe, and though the train was very loud and scary, my dad knew just where we needed to be to stay safe and secure. 

Soon a splash of red passed by.  The caboose!  The conductor stood outside the caboose.  He grabbed the paper message off the pole, waved at us while we waved back, and the train disappeared up the tracks.  All was well.

In the Bible we read about the man named Joshua, whom God told to lead His people of Israel across the Jordan River into the promised land.  It was a daunting, scary proposition.  But as God gave His orders to Joshua, this is what He said: “Just as I have been with Moses, I will be with you.  I will never fail you or forsake you.”  (Joshua 1:5) 

Guess what the words “fail” and “forsake” mean?  They mean “to relax the grip.”  And that’s not all.  In verse 7, God told Joshua to be strong, which means to “reach out and grab hold.”

Do you see the beautiful picture that God is giving us?  This God of Joshua is our God today, for those of us who know Him!  And He’s telling us to reach out and grab hold of Him as He extends His hand to us.  Then let Him do the holding, because He promises not to relax His grip on us!

There are some very scary times for all of us in this life.  Sometimes some big, dark, loud problems happen to us.  God wants us to be strong, like Joshua…reach out to Him and let Him hold our hand beside all the issues that scare us and hurt us and threaten us on so many levels. 

I didn’t understand much about trains at that young age, but I knew they were dangerous.  Yet even more than that, I knew from experience that my Dad was wise and loving and would take good care of me.  He knew just how close for us to stand, and with my hand in his, I knew I was totally safe.

Our Heavenly Father has never said we won’t have problems.  In fact, He has told us that we WILL face hard times…times that will hopefully draw us to Him and to His strong hands.  He won’t let go of us.  He won’t abandon us.  He will keep us safe in our very hard times, even when we don’t like those times or understand their purpose. 

And we can say, with total confidence, “The Lord is for me, I will not fear.”  (Psalm 118:6)  

   

 

 

From Bliss to Brokenness

On Monday, November 6, of last year…..yes, 2017 is – as of today – LAST year!!  Anyway, on that day last year our washing machine loudly died.  I mean, the noises coming from the bathroom/laundry room were downright scary.  I remember that date because two days later, November 8, was Aaron’s birthday.  Gary and I met at Lowe’s after he got off work on Tuesday night, where we found our dream machine, got it ordered, and were told that delivery would be on Thursday.

Thursday was the day we were having two of Aaron’s favorite friends over for a birthday supper, so I knew I would be home most of the day as I got things ready.  It was also the day that Aaron woke up in a very wet bed, so it became the day of a huge mound of wet bedding piled near our dead washing machine, waiting on our brand new dream machine.  And friends coming for dinner. 

So I prayed as I made apple pie….Aaron’s birthday “cake” of choice.  I asked God to please let the dream machine come sooner than the possible delivery time given to us, which was between 12:00 and 4:00, and usually means it might be there by 6:00 – with friends coming for supper and with Aaron very picky about his bedding and covers being JUST right.  It was shortly after 11:00 when I asked God for this kindness…not really near the expected delivery time.  But don’t you know, that within two minutes my phone rang and it was the delivery guys asking if it would be ok to come early!

I almost said, “Amen!!  You come right on over!”  I didn’t because I wanted my dream machine delivered and was afraid I would scare them away, but I did share with them God’s sweet provision and answer to prayer as they installed my dream machine.  One man smiled as he worked and the other said, “God is still on His throne!”  I did say “Amen!” to that!

I’ve loved that new washing machine.  The tub is so large that I have to stand on my tiptoes to reach the bottom of it, but does it ever hold big loads, like bedding!  And often I think back to that sweet answer to prayer on my very busy day….how God provided the dream machine in the first place, and then gave it to me early when I asked.  I love those “simple” and kind answers to prayer.

So fast forward to December 22, the Friday before Christmas, when Aaron woke up in an even wetter bed than the one of the month before.  Seizure?  I didn’t hear one.  More likely just too much drinking water before bed.  Regardless, everything needed washing on the VERY busy day of cleaning and cooking before the kids came in and our Christmas began.  Oh well, nothing to do but DO what needed doing…and I had my wonderful new dream machine, remember?

I was thankful for that extra large tub as I loaded Aaron’s wonderful waterproof mattress pad and sheets into it, and then went about my other work for the day.  But when I went back to check on that first load, I found it to be dripping wet.  “Oh dear,” I thought.  “What could be causing that?”  I had washed heavy loads before with no problem.  I set the load on a rinse and spin cycle, but still had the same dismal results when I checked it later.  Setting it again, I watched closely and found that water wasn’t entering the tub, and the tub wasn’t spinning.  Nothing in the manual helped and nothing I did worked, so I was stuck with all of Aaron’s bedding in another huge pile, and very wet bedding in my dream machine. 

Gary worked and worked on that machine when he came home, to no avail.  I did manage to get the very wet items dried in our dryer, but still had piles of laundry at the end of the day.  Gary called Lowe’s and a repairman was scheduled, but not until Wednesday…which this year was our Christmas Eve. 

Bless his heart, Gary insisted on taking all the laundry to the laundromat on Saturday morning.  Aaron helped him carry the bags out to his truck, and before too long Gary was back with lots of wet laundry to be dried. 

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And when the repairman came on Wednesday, he found the problem but told us he wouldn’t be able to come back with the needed part until January 2nd. 

So we have lots and lots of laundry sorted and piled on now empty beds since all the kids have come and gone after Christmas.  Of course, that means extra bedding and extra towels waiting to be washed in my dream machine that has turned into a little of a nightmare, honestly. 

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I went from happily sharing this evident answer to prayer to scratching my head at the failure of it.  Not the failure of God, mind you, but the failure surrounding this provision…my dream machine!

But through this really simple annoyance, God has spoken to my heart.  How many times He has clearly answered my prayers, only to also lead me to…at times…a hard place where I must trust Him.  It’s so easy to praise Him for clear answers, but sometimes difficult to trust His sovereignty when the answers aren’t a bed of roses. 

Today’s answers to prayers don’t guarantee a carefree tomorrow. 

But always…ALWAYS…God DOES answer.  His answer may contain trials, but He also ALWAYS has a reason for those trials.

Gary and I were married over five years before Aaron was born.  I wondered if I would ever have a baby.  That positive pregnancy test was one of the happiest days of my life!  We thanked God over and over!!

So fast forward to now, 33 years later.  When I held baby Aaron, I never dreamed of seizures and autism and behaviors and our son still with us at his age.  And like my broken dream machine, our dreams for Aaron have certainly taken a different turn.  Aaron isn’t broken.  He is just the way that God designed him to be.  But my dreams were broken.  Our amazing answer to prayer has also carried with it a huge element of grief and testing.

Yet I know…I KNOW…that God is in control.  With His blessing of Aaron in our lives has also come some brokenness.   Our life is on a far different path than we had ever envisioned.  But on that path has also come tremendous cause for trust in God…which teaches us patience…waiting…and then peace.  God’s sweet peace amid the piles of pain and mess that sometimes surround our days.    

I shouldn’t be focusing on the ANSWER to my prayers, but on the God behind that answer. 

And in that focus…in God alone…I can rest and I can trust. 

“God is our refuge and strength, a very present help in trouble.  Be still, and know that I am God.”  (Psalm 46:1,10)

What better way to start the New Year than this!

 

 

 

Things Done Well

I’m sitting here in the few moments I have before I wake Aaron up for the day, listening to my Dino Piano Pandora radio station.  The song?  “For I know, whate’er befall me, Jesus doeth all things well.”  Old language, yes, but beautiful in its reality for all of us who know Jesus.  He DOES do all things well, whether it’s in His beautiful creation all around us…or our new day that stretches before us. 

None of us knows what a day will hold.  But we do know that God holds us and holds this day close to His heart.  He ordains and directs every minute.  It’s up to me to claim this reality, no matter how large or how small are my moments in this day. 

Aaron provides both of those kinds of moments for me…large and small.  I never know when I open his door to wake him up just what our day will entail.  Happy Aaron?  Angry Aaron?  Sad Aaron?  Giving Aaron? 

It’s always a balancing act, based largely on Aaron’s attitude but really, even more so on mine.  It’s sometimes tough, really tough, to be patient and kind when Aaron is anything BUT that!  I often blow it.  But God is faithful and patient with me, and to Aaron, and for that I am very thankful.

Aaron asked on Sunday if he could take flowers to his favorite Paradigm staff and second mom, Barb.  So on Monday he fought off the early morning grouchies as I reminded him of his flower plan.  And later, after I checked the wait time, I threw in a haircut to boot.  Now I had a very happy Aaron!

A haircut and beard trim improved his looks, and then picking out some flowers at Dillon’s improved his Monday attitude.  A cup of coffee from Quik Trip finished it off perfectly!

Of course, he wanted me to go in with him to Paradigm and watch him give Barb the flowers.  When we walked into her office, we found her on the phone so Aaron had to wait – which is something he rarely does well.  But there stood Ashley, his friend…or I should say, his “sometimes” friend.  They sure can go around at times, getting very angry with each other, but look at what they did that morning.

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A HUG!!  So sweet!  And so unexpected that even Barb, though on the phone, reacted as I did.  “Awwww!” we both expressed. 

And then when Barb was off the phone, the happy flower giving took place, with more “Awwwws,” and smiles, and hugs.  I drove away with a peaceful heart.

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I picked him up that afternoon, still happy and with tales of all the French fries he ate for lunch.  At least that’s the story he told me.  I never quite know if his food exploits are all true, because sometimes he loves to give away money as much as he loves to give away flowers.  He knows that giving away money is not allowed, so he’s become adept at telling me what he knows I want to hear instead of telling me what he really did with his money.  In other words, he has become a gifted liar at times, sad to say.

So I balanced my skepticism of his story with relief at seeing him so happy, not wanting to discourage him or accuse him, yet still driving home the point that I do hope he really DID eat French fries.  But he was already off on his next topic, reminded by his food story that the next day was doctor appointment day…and doctor appointment day means eating out day.  Doctor visits take a major back seat to the real purpose…for Aaron…of doctor days.  They are restaurant decision days!!

Aaron had a difficult time getting out of bed the next morning for his doctor appointment.  It didn’t matter that I had well prepared him the night before concerning the time we would need to leave.  He finally was able to push back the covers, take a shower (possibly! I never know for sure!), drink his coffee, and climb in the van.

I could tell that Aaron was very, very tired.  On many days, he seems to be over-drugged.  Sluggish…slurred speech…very heavy eyelids…wobbly in walking.  This doctor day was such a day for Aaron, but I was actually glad.  Now the doctor could hopefully see what I have told him…that I think Aaron’s weight loss is impacting his medicine dosage.   

Again, more of what we must balance with Aaron.  Seizure control balanced with his ability to function as normally as possible.  Medicine’s benefits balanced with sometimes detrimental side effects.

Aaron is on a new seizure drug since his hospital stay in May for his video EEG.  His seizures are much better on this new drug.  We increased the dosage after one month, but then a few weeks ago we had to decrease the dose back again after he became too slow and sleepy.  Yet still, Aaron continues to have many days and moments of still acting like he is too drugged.

Aaron was still droopy and tired when we arrived at the doctor’s office.  Even seeing some of the staff dressed for Halloween didn’t inspire much of a response. 

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This look at Aaron shows how he really felt that morning.

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The weight loss combined with the tiredness did concern the doctor.  He is used to listening to Aaron talk about Independence Day movies or Captain James T. Kirk or Darth Nihilus, but there was none of that on this visit.  We will be slowly decreasing one of Aaron’s main seizure drugs to see if that will help.  Another decision to make…another issue to balance.

And Aaron had most definitely made his restaurant decision!  No amount of sluggishness could dampen his usual eating-out enthusiasm.  His choice?  Denny’s!! 

He was at first cold from the weather and slow in his reactions…

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But that soon changed as he drank some coffee, ate his favorite side salad with no croutons, finished off his French fries after methodically dunking each one into his honey mustard sauce, and then successfully tackled his stack of chicken strips.  If we ate out like that every day he just might gain back some of that lost weight!

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Watching Aaron for just those two days reminded me again that we have many sides to our complicated son.  In less than 48 hours we saw highs and we saw lows.  We saw progress and we saw some steps backward.  We smiled and we frowned.  We felt relief and we felt our hearts grow a little heavier with nagging worries. 

I remember once when Aaron wasn’t feeling well.  He asked me if he had a seizure during the night, so I told him that he had a small one. 

“That’s probably what’s with me today,” he replied.

Aaron’s epilepsy and autism are certainly with him every day.  And in extension, these issues are with Gary and I every day.  But remember the song I was listening to earlier?  “For I know, whate’er befall me, Jesus doeth all things well.” 

Sometimes the things He “doeth” aren’t what I would do, but I’m not in charge.  God is!  I know He loves Aaron, and loves Gary, and loves me.  All that God does, He does well.  I may not see it as well now, or feel it, or like it, but in my heart and my head I do know that all…ALL…He does and allows, is well and good. 

And THAT truth is really what I want to stay with me today, and every day!

 

 

 

 

When The Unexpected Becomes Reality

I was at my neighbor’s house last Thursday morning as her movers were loading all of her belongings that she was moving to her new assisted living home.  I had run back over to our house to get Aaron and deliver him to meet his day group.  That’s when I got the text from Gary…..as I got Aaron off his computer, let Jackson out to do his business, and quickly checked to see if Aaron had taken his pills.  Gary’s text said, “I’m OK.  Small plane crashed on our building.”

“What?!  I looked at the picture he sent, but the seriousness of the situation didn’t hit home with me even then.  I had no idea of how tragic and awful it really was.  But later, as we got Nora moved into her apartment, our other neighbor hooked up her television and turned on the local channel.  There was live coverage for the rest of the day……and I was so thankful that Gary had taken the time to text earlier to let me, Andrea, and Andrew know that he was safe. 

Four people were killed, we found out as the day wore on……the pilot, and three people inside a simulator where the plane had crashed.  I couldn’t imagine the fear I would have experienced if I had not known that Gary was safe from the beginning.  My heart goes out to the families of those who died.  Who would ever imagine that you would go to work one day in Wichita and have your building hit by a plane?   Who would ever imagine getting that horrible visit from a chaplain bearing that terrible news?  And I knew it could easily have been me that received that news…..me that was left without a husband…..my kids left without their dad.

We don’t know, do we, what a day will hold.  A couple days before the plane crash, I was nearly involved in a serious car accident…..but it didn’t happen.  Gary could have been killed on Thursday in the FlightSafety building……but it didn’t happen.  What if it HAD happened, though?

 Like it happened with Mary…..a mom I know who is in her early 30’s.  Less than two weeks ago, she was leaving a movie theater with her four young children, one a two month old, and she had a major stroke. 

Like it happened with our good friends, David and Jennifer, the day after the plane crash.  David’s dad was scheduled to come home after routine pacemaker surgery, but instead that morning he suddenly died……without warning…..totally unexpected.

Like it happened that same day with other good friends whose daughter-in-law and two grandchildren were involved in a serious front end collision on their way to spend the weekend with a friend.  They survived, thank the Lord. 

What do we do when the unthinkable DOES happen?  What do we do when the unexpected becomes our reality?

When we feel like we’ve been hit in the gut and we can’t breathe, the only thing to do is fall back into the arms of God.  How do we do THAT?  By making a conscious decision to trust Him, and to remember Who He is and what He has promised us.  Alec Motyer says, “When the trial comes that prompts the unbelieving ‘Why?’ we must rather drill our minds to hear the call for faith, to recall the Lord’s promises, and cast ourselves utterly onto the reliable rock of His Word.

A couple days after the plane crash, a friend called me.  She was so thankful that Gary wasn’t killed or injured.  She made the comment that we all often hear…..”God is so good.”  And I have to ask myself…..if Gary had been killed or badly injured, could I still say, “God is so good?”  I pray that I could and that I would still declare the goodness of God no matter my personal outcomes, for God’s goodness doesn’t change because He might allow me to go through some tough times.  Paul told Timothy that God remains faithful, and I hope that through my pain and grief I would be able to say and believe the same.

This is why it’s so important to learn who God is now……to know his attributes BEFORE the traumas hit.  Our Wichita first responders had just participated in a mock plane crash drill a month before the plane hit FlightSafety.  This drill helped them be better prepared for the real thing.  Likewise, I know that I need to daily trust God in the many events of my life and to learn His character, so when the really hard times come I am better prepared to draw on what I have already learned about God.

“How blessed are all who take refuge in Him,” David said in the Psalms.

Not spared…..but blessed and held.

The Raging Waves

I remember so clearly the first time I saw the ocean.  There I was, a little West Virginia mountain girl, on our family’s first beach vacation trip.  We had driven from southern West Virginia down to South Carolina’s Myrtle Beach, where we stayed for one week.  I don’t recall how old I was.  I do know that I ran down to the sandy beach and was just awestruck by what I saw and heard.  The ocean went on forever!  And the noise of the waves was both intimidating and amazing.

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I felt small in front of such unending power!  And I definitely felt small when later, either on that trip or another family vacation to the beach, an undertow pulled me out into the water.  I was terrified and helpless!  And ever so thankful when my brother-in-law swam out to me and pulled me to shore!

I’ve never forgotten the power of that ocean.  That experience gave me a healthy respect for deep water and the danger that it can carry.

I recently wrote about Israel’s deliverance by God from Egypt, and how God brought them to the brink of the Dead Sea.  How terrified and angry they were as they stood there, helplessly, in front of this impossible situation!  And God had LED them to it!  Of course, we know that God also led them THROUGH it.

This morning I read in Joshua 3 about the children of Israel finally reaching the promised land of Israel.  And sure enough, there in front of them lay another watery obstacle…..the Jordan River.  And the Jordan wasn’t just any old small, crossable river at this time of year.  Instead, God brought them to the Jordan during it’s annual flood stage.  The river was a huge, raging torrent – very wide and full of masses of swirling vegetation underneath the impossible current.

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We, once again, know the story.  God gave instructions to Joshua and to the people about crossing the scary waters of the Jordan River.  “By this you shall know that the living God is among you,” Joshua told the frightened people.  “God WILL deliver the enemies from before you!”

So God instructed the Ark of the Covenant to go first, and for the people to follow.  God going first.  As soon as the priest’s feet hit the Jordan’s torrent, the waters parted and all the people crossed over on dry ground.

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We sometimes wonder why God leads us the way He does.  Why not just lead Israel around to the promised land on the “dry way?”  Why does God seem to want to do things the hard way?

Well, if we never experienced the terrifying power of the waves in our lives, we would also never experience the redeeming power of our God.  We all at times feel like the Psalmist in Psalm 93:

“The floods have risen up, O Lord.  The floods have roared like thunder; the floods have lifted their pounding waves.  BUT mightier than the violent raging of the seas, mightier than the breakers on the shore – the Lord above is mightier than these!”

As a child of God, you can know that God has a purpose for everything in your life…even the awful junk that seems so unfair and hurtful and wrong.  Sometimes He allows some things to happen that we don’t understand…things that even make us question where He is, or why He let it happen.

We must cling to the fact that God is sovereign, even when we’re hurting and angry and doubting.

Look at Psalm 92:1-2:

“It is good to give thanks to the Lord, to sing praises to the Most High.  It is good to proclaim your unfailing love in the morning, your faithfulness in the evening.”

So we wake up in the morning, thanking God for loving us.  And at the end of the day, no matter what rivers and oceans we encounter, we can say that God is faithful.  He is faithful to lead us, to keep us, and to eventually deliver us.  He is faithful when we don’t feel it, see it, or understand it.  We KNOW He is, and we at times have to cling to what we know even if it’s not what we feel.

Remember that God went first into the water and told Israel to follow.  And likewise, God goes first before us into the turmoil that we face, leading our way and wanting us to trust and follow Him.

God is mightier than any raging waves of life that threaten to pull us under.  Never doubt that for a minute!

Never doubt HIM for a minute!

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These Words

Last night I was helping Aaron turn down his covers as he got ready for bed.  Sometimes there is a moment that is especially poignant with Aaron.  A moment that hits me in a profound way…..in a way that causes me to remember where we were and what we were doing when the moment occurred.  The night before, Aaron….for whatever reason…..was very groggy and dizzy, with slurred speech and unsteady legs.  He was still trying to talk, but with great effort.

Last night, though, Aaron was his usual chipper self.   We were going through his bedtime routine as he talked and talked and talked.  He brushed his teeth, swished his mouthwash, helped me set up our diffuser – which means he poured in the water, checked the name of the oil, and took a little tentative sniff – watched as I turned on the baby monitor we use to listen for seizures, made sure I picked out his clothes for the next day and that they were on the back of his desk chair, put his back scratcher and hand towel on the seat of his chair, blinds lowered, desk clock turned around so the light doesn’t bother him, glasses put just where they belong, wrist watch put right beside his glasses, shoes in front of the closet, stuffed animals precisely in place in his bed, covers pulled up, and animal print blanket put on top of the bed exactly right and with no wrinkles.  It’s a process…..done precisely….or we must re-do the process until precision is reached.

It was when we were standing beside his bed, me on one side and Aaron on the other….pulling up his covers…..that Aaron said this:

“Mom, guess what Shauna is getting?”

Shauna is one of his friends at his day group, Paradigm.

“I don’t know,” I replied.  “What is Shauna getting?”

“She’s getting a NEW wheelchair!” Aaron answered.

Aaron had no idea of the impact of his simple answer to my question, and of the many thoughts that cascaded through my mind in a split second.  He just kept talking.

“I told her she should get a PINK one!!” he exclaimed, and then laughed at the thought of a pink wheelchair.

We smoothed his animal print blanket then.  He was finished with pink wheelchairs and had moved on to his bedtime log book…..his notebook in which he writes down the exact time he gets in bed and the exact time the next morning that he gets out of bed.

10:22.

That’s the time he wrote.

So was it 10:22 when Aaron spoke of Shauna’s wheelchair?  Or 10:21?  That fact would be important to Aaron.

But all I knew, after our goodnight hug and after I had turned out his light, is that my 33 year old son was happy about his friend’s new wheelchair.  That was nice of him.  But…..

Aaron wasn’t talking about his friend’s new car.  Or new job.  Or new house.

He was talking with pleasure about her new wheelchair……because his friends have special needs, like he does…..and a new wheelchair is indeed a big deal.

But as Aaron’s mother, this comment from him somehow yanked open that little door in my heart that I try to keep closed.  I try to keep it closed because I don’t want to hurt for him or for his friends.  I want to see his life as a wonderful thing, and it truly is!

But the reality of his life…..and the lives of his day group friends…..is far different from your typical 33 year old young man. Most young men Aaron’s age would be talking about new cars.  Aaron was talking about new wheelchairs.

I’m so happy that he was happy for Shauna.  But my momma heart got a deeper little crack in it last night.

I haven’t been writing lately.  I’ve just been very burdened about lots of issues.  Life goes in cycles like that, you know.  As a Christ follower, I know to be careful during those down seasons.  It’s very easy to be consumed with the here and now, and with all my own worries…..not to mention the serious concerns for some in my family and some of my friends…..and even our great country.

So I’ve asked God to do what I have often in the past asked Him to do, and that is to give me some extra special assurance from His Word.  And God did just that a few days ago.  He gave me a sweet message from His Word, ABOUT His Word.

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It’s from Isaiah 8.  Israel was facing dark times, and so God told them lots of truths about how they were to behave, how they were to act, Whom they were to obey and to fear, and even warned them about seeking answers from mediums and fortune tellers.

And then in verse 20, God said to Israel:  “To the teaching!  And to the testimony!”

That’s it?

Yes, that’s it!

That’s EVERYTHING!

Where do I need to go when I’m overwhelmed with burdens…..with darkness…..with struggles…..?

Where do I go when the reality of Aaron’s life makes my heart sad?

To a book?  To a person?  To an activity?  To food?  To entertainment?

NO!

To the teaching!  To the testimony!

In other words, to God’s Word.  Staying in my Bible.  Reading it with purpose, asking God to open His Word to me and give me direction….this is where I need to go.

Dale Ralph Davis, in his book Stump Kingdom, says it so well:

“Only the light of the written word will carry us through the darkness of our times.  This holds true whether the ‘times’ are dark historical times, dark personal times, or even the end of our present time.”

Davis then told about Robert Bruce, an old minister in the Kirk of Edinburgh, who on the day he died asked his daughter to set his finger on the last two verses of Romans 8:  “I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.”

“These words – that is always the Christian’s slogan.  Only in the teaching and the testimony is there light and help and anchorage.  The Christian is the man or woman who wades through the affairs of life always saying: ‘Set my finger on these words.’”

Wades through the affairs of life……the unexplainable, the sad, the hard, the heavy.

I must wade through it all with my finger on God’s Word.  No other substitute will give me the peace and the comfort that I will find as I read what God says to me in His Word.

I can’t tell you why Aaron has special needs.  I won’t say it doesn’t hurt, sometimes more than others.

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But let me tell you about God.  Let me tell you about His love.  Let me tell you that He is sovereign.  Let me tell you what He has written.

“To the teaching!  And to the testimony!”

 

 

 

 

The Surprise

I was walking through our vegetable garden one day in early summer, looking at the pretty little plants growing so nicely where Gary and I had placed them.  There was the summer squash on the front row, along with some zucchini.  The tomatoes were already inside their tomato cages that Gary had put up, and behind them were our okra plants.  Cucumbers were on the side of the garden near the tall oak tree.  We have a simple garden this year, not as full as it sometimes is, but enough for us and hopefully some to share with others.

Everything was where it should be, growing as we had hoped at this point, with no visible bugs or other problems that I could see. Weeds hadn’t started taking over yet, either, so I felt content as I turned to leave the garden.

But wait.  What was this?

I stopped between the tomatoes and okra as I noticed a plant growing in a place where we had not put a seedling.  It wasn’t a weed.  It looked for all the world like……a cucumber?  But what would a cucumber be doing here, when the rest of the cucumbers were all the way over on the other side of the garden?

I hadn’t planted it there.  Gary hadn’t planted it there.  Hmmmmm…….

I stood looking at it, wondering what to do.  There are any number of ways that a cucumber seed from last year ended up under the soil and then growing again this year.  I’ll never know for sure.

But what I did know was that I would not have planted that cucumber in the spot where I found it.  It was too near the edge of the garden, for one thing.  It might get all tangled up in the okra or try to climb the tomato cages.  It might want to grow out into the yard where Gary mows.  It might not flourish under the sunflowers that were soon to be planted right there where its leaves had sprouted.

Bottom line……that volunteer cucumber was just not at all where I would have put it.  I didn’t want it there.  I could think of all the reasons mentioned above that I didn’t want it growing where it had sprouted.

It hadn’t been in our garden plan at all.  Now here it was, intruding in a place and at a time that I hadn’t intended for it to be.  I hated to uproot a growing vegetable plant, however.

“Well, OK,” I thought.  “I guess I’ll leave you here while I decide what to do.  You’ll probably die anyway and then I won’t have a decision to make after all.”

And with that, I turned and walked out of the garden……my garden that now held a stray cucumber plant.  A plant that messed up my plan.  One that, honestly, I didn’t want.

I watched that vagabond cucumber plant over the next days…..days that became weeks.  I left it where it was, more curious as time went on to see how it would fare.  And guess what?  My stray cucumber plant grew beautifully!  In fact, it grew better than the other cucumbers that I had so carefully planned and planted on the other side of the garden.

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It wasn’t long before I saw the first tiny little spiny cucumbers growing under its leaves.  I tended it carefully, pulling its curly tendrils away from the tomato cages…..guiding the growing vine out of the yard and back to the garden…..watching another of its vines growing up a tall sunflower stalk.

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The fruit of that unwelcome cucumber has been beautiful and sweet.  We’ve benefited from it very much, and so have others with whom I’ve shared.  I’m so thankful that I didn’t follow my first response and pull the cucumber from the soil!  I’m thankful that I stepped back, gave it time, let it grow, and then enjoyed the sweet fruit…..and the lessons it has taught me.

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One thing we all know, if we live long enough, is that life is full of surprises.  We can be going along just fine, things working out the way we had planned, when BAM!!  We hit the proverbial wall.  Suddenly, things are NOT going as planned.  Now what?

As followers of Christ, we’re certainly not exempt from those detours in life.  In fact, God does put situations and events and people into our lives for a purpose that sometimes only He knows.  Maybe He’ll share it with us and maybe He won’t.  So again, what do we do?

Do we try to fix it?  Get rid of it?  Ignore it?  And if we can’t do any of those, do we argue with God?  Get angry?  Get bitter?

I mean, admit it, there are things that happen to us that that we just can’t see any reason for.  Really, God?  I would NOT have done that.  I would NOT have put that situation in that place in my life at all.  I mean, maybe another time…..another place…..or better yet, not at all!!

So, God, this wasn’t in my plan.  I had my life pretty well mapped out, you know.  Grow up….college….job….husband….kids…..family…..

I didn’t plan on Aaron falling back into my arms that Sunday afternoon 25 years ago, seizing and bleeding and unconscious.  That was most unwelcome.  I didn’t plan on being given his further diagnosis of autism 7 years after that.  I mean, isn’t Epilepsy enough?  I didn’t plan on still being his caregiver when he’s almost 33 years old.  Don’t You know about empty nest?  How welcome, on many days, THAT would be?

So…..this plant that You have placed in my life?  Why did You put it there?  I might agree to it in some form…..over there, in another area, to a different degree.  Here….just let me decide where it goes and how big it grows, OK?  Really, I would never have put it there in the first place…..in case You want to know.

But oh my goodness, what God has taught me over the years from that little unwanted seedling that popped up where I didn’t plan it!

What I’ve learned can be summed up with one verse in one of my very favorite Bible passages.  Psalm 18:30:

“But as for God, His way is perfect.”

There you have it.  Eight little words that speak incredible volumes about God and His sovereignty.

It doesn’t say that His way is easy…..fun…..pretty…..popular…..understandable.

Or fast.  Gary and I are in this life with Aaron for the long haul.

We each have our own situations that God has put, just so, in our lives.  As we stand and look at whatever that is, we must choose whether to accept God’s placement in our garden or to spend our life hating it.

But let me tell you, when you accept that God’s way is perfect and you let Him be that Master Gardener in your life, you’re going to one day see fruit.  You’re going to see growth in your life that you never thought possible.  You’re going to see beautiful fruit like peace, joy, thankfulness, wisdom.

And best of all, that fruit is what you’ll be able to share with others…..especially others who are suffering.  Comforting as you have been comforted…..blessing as you have been blessed.

God does know what He’s doing, after all.  His way IS perfect, and perfectly placed, in each of our lives.

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Fast Forward

Sometimes one thing leads to another, and that one leads to another, and then another leads to another, and it can just be amazing to go back and look at the picture created.  This is what I’m seeing today.  I hope I can connect all the “things and anothers” as I try to show you the beautiful picture created by God.

It started yesterday evening when Aaron went with me to Dillon’s.  When we left the store and were getting into the van, the handle of my crossbody purse somehow knocked off my earring as I moved it over my head.  I found the back of the earring as it poked my skin.  Yep, it had gone down my shirt somehow.  But nowhere in sight was my earring.  I hurriedly searched for it, and so did Aaron, but we couldn’t find it.  I told him not to worry, because things like this can worry him, and off we drove to pick up some pizza for supper.

Still no earring appeared as we got out of the van at home, and I searched around some more for it.  “Oh well,” I told Aaron.  “It’ll show up when we least expect it…..or when I clean the van, sometime in the far off future.” 

We sat down to eat and Aaron asked the blessing.  His before-meal prayers, 99% of the time, contain two statements.  What he says varies depending on the day and the current events of our life, but very rarely does he say more than two things.  This prayer was no exception. 

“Dear Lord,” Aaron began.  “Thank you for the pizza.  And please help us find Mom’s earring.” 

I told Aaron it was wonderful to pray about the lost earring, and assured him that God loves to hear those requests.  And don’t you know that a short time later Gary went out to the van to conduct his own search, and he found my earring!  You should have seen Aaron’s face when I showed him that I was now wearing TWO earrings!  And then when I told him that God had answered his prayer!  Aaron’s face lit up like the sun.  It was priceless!

So the lost earring led to Aaron praying, which led to God answering in a sweet way, which led to……I trust……Aaron seeing how wonderful it is to pray about everything.

It was a good thing for Gary and I to see, as well. 

Then came today, which in comparison to what some others are enduring was really nothing.  But in the moment it was, for Aaron and for me, pretty awful.

I want to preserve Aaron’s dignity in this.  I needed to take him down to the air base to have a urine test repeated this morning.  I told him to use the bathroom when he got out of bed, and then by the time he drank his coffee and we got to the lab, he would need to go again.  I rehearsed the procedure with him as we drove to the base.  All was well.

That was short lived.  As Aaron got out of the van at the clinic, I saw that he was doing what I call “The Potty Walk.”  I was concerned, but he assured me that he could wait until he was in the lab bathroom, cup in hand. 

We walked up to the lab window, where the lone lab worker was a little harried.  I heard a door close and looked around to see that Aaron had already entered the bathroom…..NO cup in hand.  I told the harried lab worker to hold on as I scurried to the bathroom and opened the door…..to find Aaron preparing to go. 

“NO, Aaron,” I tried to whisper as I closed the door.  “Please, can you just wait until I get the cup??!!”

I rushed outside, went up to the window again, where the lone lab woman was realizing my dilemma and was trying her best to get Aaron’s info sticker onto his cup…..the cup he still wasn’t holding!  She slapped it on, and I quickly zoomed into the bathroom……to the most awful sight.

Let’s just say it appeared that the plumbing had sprung a huge leak, but the toilet and sink plumbing were fine.  Aaron’s, however, was not fine.

We got the sample somehow, but it’s probably not the best.  I wasn’t the best, either.  Such a mess!  I didn’t know what to do but to try to clean it up, mostly in an effort not to embarrass Aaron by having to tell the poor harried lab woman, in front of others, what had happened.  I had Aaron standing in the corner of the bathroom and kept telling him not to talk, because he talks so loudly that I knew everyone outside would hear.  Like they didn’t already guess what was going on in that bathroom!  “How many paper towels do they need in there?” everybody must have been wondering as they heard the automatic dispenser churn out towel after towel.

And poor Aaron.  His shorts were very obviously wet, and we had to walk out past people in the lab waiting room and in other areas as we left the clinic.  I waited for a few minutes after leaving the bathroom to see if the lab worker needed anything else from us, while Aaron hid behind the bathroom door.  Finally, we just left.  I felt like it was a walk of shame for dear Aaron.  And I was a mess of emotions…..very sorry for Aaron, and embarrassed, and just weak from all of it. 

The plan had been to take Aaron to Paradigm for his day, but instead we just drove home.  I really wanted to cry.  I stole glances at Aaron.  He was very serious, and very sorry, and very quiet.  That made me want to cry even more.

He turned on his music, of course.  It was the Zac Brown Band.  As we drove along the highway, song #4 and song #5 came on, Aaron checking the back of the CD box to confirm the title of each song as he always does.  Then came song #6, which is more of a rock song, and one I don’t like.  I was in NO mood for that today, so I used the button on the steering wheel to quickly go to song #7.  Aaron didn’t seem to notice, which was good.

Oh, but never underestimate Aaron.  It wasn’t long before he realized that song #5 had played, and now song #7 was playing.  What happened to song #6?

“Mom, did you go past song #6?” he asked.  I confessed.  He asked why, and I told him, and he was fine with that. 

As we kept heading toward home, I thought of how nice it would be if we could fast forward through parts of our life.  I would certainly have fast forwarded through this bad morning!

When we got home, Aaron showered and changed clothes.  Then he went with me to Aldi and to Dillon’s, even though I kind of wanted some time alone.  But once there, Aaron and I enjoyed the shopping, especially looking for what we needed for the lasagna he wanted for supper.  He helped bag the groceries and carry them.  He carried the heavy bag of dog food I got when we stopped at the vet, and he talked to Misha about Spiderman and about Star Trek, which always cheers Aaron up.  None of that would have happened if I hadn’t taken Aaron with me. 

Then at Dillon’s, Aaron saw one of the workers that we know as we checked out.  She stopped to talk to us before we left.  Her life is hard, always full of trouble, it seems……and today was certainly no exception as she shared some things with me.  As she talked, Aaron just stood there listening quietly to every word.  As we left, I told her that I would pray for her.

“Does she have a heartache?” Aaron asked me as we walked out the door. 

I was so surprised at his question, but more at his insight and the empathy he showed as we talked together about her. 

And then later, the best part.  We sat down to a lunch of leftover pizza, and again Aaron prayed as we held hands.

“Dear Lord, thank you for the pizza.  And help B have a good heart.”

Wow.  Just wow.

Aaron usually prays for Aaron, and on a good day he might pray about my earring.  But to pray for this friend that we really don’t deeply know……now that was touching and dear and so impacting.

That would never have happened if Aaron had not been with me…..and he would not have been with me if not for the awful lab experience earlier. 

If I had been allowed to fast forward through our terrible morning in order to preserve us from that bad time, then we would not have had this amazing and very good time.  This sweet time of Aaron genuinely listening to another person share her pain, and then genuinely caring enough to genuinely ask God to help her have a good heart.

So you see, one thing does lead to another which leads to another which leads to yet another.  Did Aaron’s answered prayer last night encourage him to pray for our friend today?  I think it did.  Then his bathroom accident allowed him to be with me to offer help today, and especially to be with me to listen to a hurting friend who needs his prayers. 

We all have those times in life when we want to skip song #6 and go right on to song #7……when we want to fast forward through the pain we’re facing and be done with it, moving on to other better things. 

But with God, His one thing that leads to another thing that leads to the other thing is what’s best for us.  It’s a good thing that He doesn’t allow us to fast forward, as hard and as terrible as some of the things are that we face.  He works all of it out for good if we let Him. 

Help all of us have a good heart, Lord. 

And help us not push the fast forward button.