Topsy-Turvy Times

I got a phone call last Thursday afternoon, soon after I had gotten home from running errands.  I saw that it was from Barb’s cell phone.  Barb, who works at Aaron’s day group, often lets Aaron use her cell phone to call me.  Or Aaron often uses her cell phone even without permission so that he can call me and tell me something about his day, and then insist that Barb and I need to talk…and we laugh every time about that as we talk for a minute and make Aaron very happy.  So I was sure that this call was just another call from Aaron as I answered the phone.

But it wasn’t Aaron.  On the other end of the line was a staff from Paradigm who was using Barb’s phone to call and tell me that Aaron had fallen during a seizure.  Aaron was standing when he suddenly fell, seizing, and had hit the cement floor.  She said they were sure he would need stitches in his chin.  She was right.

I left for Paradigm as quickly as I could, thankful that our old Great Dane was beyond caring about the groceries left around the kitchen within his easy reach.  I walked in and found Aaron surrounded by Barb and the nurse, sitting in a chair with paper towels being held on his chin.  He was alert, ready to tell me all about his injury and ask if we were going to the doctor.

Which we did.  We went to the hospital nearest our house, out in the country, where the ER wait is next to nothing and the care is good.  The girl at check-in put an ID bracelet on Aaron’s arm…his arm on which he wears his watch, way up high.  There is plenty of room on that arm for both bracelet and watch, but Aaron doesn’t think so.  Immediately when we sat down in the waiting room, Aaron had me take off his watch.  I knew that here, as is true everywhere, Aaron’s way of doing things would be the way that things would be done, if he had any say in it at all.

He would sure enough need stitches, we were told.  No surprise there.  Aaron was taking it all in stride.  He doesn’t panic, thankfully, but he has questions during times like this, wanting to know about the process and the procedure…would he feel it…how many stitches would he need…and could he go home after this was all done.

When things were quieter, as we waited for the doctor and Aaron leaned his head back on the pillow, I looked at him and felt so sorry for all he goes through.  I couldn’t linger long there, though, in those thoughts because I knew I would cry and I knew that my crying would greatly bother Aaron.  He doesn’t have the emotional feelings about life that you and I have.  This is to his benefit, really.  But I do have those emotions, especially as his mother.  Looking at his split chin and his scuffed, swollen cheek just brought home to me the fact that life is hard for Aaron.

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Aaron doesn’t enjoy the pain he experienced.  He doesn’t like his seizures.  But Aaron also doesn’t complain about it or seem to feel at all sorry for himself.  That’s what I mean about the fact that he doesn’t display the emotional feelings about his life that others might do. He’s mostly concerned about the facts.  Will stitches hurt?  How many stitches will I have?  Can I go home afterwards?  What’s for supper?  When can I wear my watch again?

Not – why do I have to be the one with seizures?  Why can’t I drive like others do?  Why do I need so much help all the time?  Why is life unfair to me?

I’m SO thankful that Aaron doesn’t express those feelings…that they don’t even seem to be on his radar.  Once in a long while he’ll say something telling, though, like the time he asked me what went wrong with him.  Or is God mad at him and gave him seizures.  But those thoughts are verbalized very seldom.  Aaron is mostly about the here and now, and about living life in the routines that matter so much to him.  Predictability and sameness in his days are far more important to him than weightier matters such as the fairness of his life.

Gary and I are left with those weightier matters that are heavy on our hearts.  And I was feeling it as I watched Aaron flinch several times as he endured the stitches.  He told his Aunt Sandra about it that night as they talked on the phone.

“That doctor put on the numbing medicine and then he put on the stitches!” Aaron told her.   Somehow he can always make me smile.

But by the end of the evening, as I told my friend Sarah, I just wanted to crawl off in a corner and have a good cry.  That wasn’t to be, though.  As soon as Aaron got in bed later that night, within five seconds after I left his room, he had another seizure.  They happen so quickly!  Thankfully he was laying down in bed for this one, safe from falls.  I was in bed myself as soon as I could after that, very tired…too tired to take time to cry.

The next morning I sat at my quiet time desk, early, wondering what God would show me from His word.  He didn’t disappoint me.  He never does.  I’m reading through II Samuel – again – using a devotional commentary written by Dale Ralph Davis.  In chapter 7, God was explaining to David why he would not be the one to build Him a temple.  And this phrase, read so many times before, jumped out at me as I read it…and then read what Davis had to say.

God was speaking: “In all the places where I have travelled around with all the sons of Israel…”

God lived in a tent among His people as they wandered in the wilderness.  As Davis says, “Do you see what God is saying about Himself?  He is the God Who travels with His people in all their topsy-turvy, here-and-there journeys and wanderings.”

The God of the universe travelled with His people while they spent years in the wilderness…years spent there because of their sin and disobedience.  Davis continued: “That is only a pale glimpse of the condescension of the covenant God, the God Who will not enjoy rest until He gives His people rest , the God Who stoops down to share the hardships of His people, the God Who is not ashamed to say He has been ‘travelling around in a tent’ with them.  See how close He is to you!”

On my tired, sad morning as I hurt for Aaron once again, I was overwhelmed with joy for what God had shown me.  God never lets me down, especially when I need Him the most!  I don’t deserve His kindness to me but I sure did thank Him for His hand on my shoulder that moment…His arm around me and His promise to be with me so fresh in my life as I sat at my desk.

His presence doesn’t necessarily take away all pain or grief.  But He sure does pour comfort over me.  And the certainty that He has a purpose for all that goes on with Aaron fills me with peace.

It’s not a peace based on my feelings.  It’s a peace based on my God.

I felt that same peace as we realized over the weekend that Aaron had probably damaged a back molar during his fall.  I took him to our dentist yesterday, who confirmed that the tooth was broken beyond repair.  Off we went to an oral surgeon, who thankfully was able to extract the tooth right away.  And there I sat once again, watching Aaron sit in another exam room for yet another procedure.  I listened to his questions that he asked the dental staff and that he asked me.  I watched his eyes focus an all the items in the room, processing each one in the way that he always does.  I hurt for his fear that he expressed.

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But I also thought of my travelling God, and how He was right there with us in that room.  I was thankful for that, SO much!  Thankful, too, for the sweet nurse who told me about her young son with seizures, and how we talked about prayer and our faithful God.

When all was done, Aaron was done…ready to lead the way out the door.  Ready for his large chocolate milkshake from Sonic – with NO straw!  Ready for his mashed potatoes and a few deviled eggs for supper.  Very ready to show Dad his tooth and the roots, placed in the little pink tooth box that he can carry around and proudly show to everyone.

Ready to take a walk, in his pajamas, with Gary and Jackson.

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Ready to bring me his treasure that he had found, and that Gary had explained to him.

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Ready to touch my heart with his lopsided, numb grin as he showed me the dandelion seeds.

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Ready to be used by God once again to show me so much, in ways he doesn’t even know.

What Is

It happened to me again several weeks ago.  An innocent conversation…a random comment…and I found myself having to corral my thoughts into line with some principles that God has hammered home to me over and over again for years. 

I want to be honest about what happened, but I also don’t want to alienate family or friends.  I don’t want anyone to think they can’t share their life with me.  So here goes.

This person was talking to me about his upcoming retirement, and then the plans that he and his wife had.  Later, as Gary and I drove away, I shared with Gary how I had that twinge of longing as our friend talked.  And how I knew better than to dwell on it and to therefore give Satan that opportunity he always looks for, the opportunity to push that door fully open that I have allowed to crack open, even just a little bit. 

You see, our life with Aaron is a life far different from typical couples our age.  Gary and I are not fully free to do many of the things that our peers are able to do.  And that’s OK…truly OK.  But sometimes the comparisons come, and if I am not careful then I can wallow in misery, and therefore open myself to sin and defeat.

The very next day…literally…after this conversation, I was at my desk as usual in the early morning.  I opened my Bible and my study book to the section of I Samuel that I was reading and was soon amazed at how God spoke to me in those quiet moments.

I read about Saul’s son, Jonathan, and his deep friendship with David.  Saul was the king of Israel, but because of his sin and disobedience, God had told him that his reign would end with him.  His family would not inherit the kingship.  This meant that Jonathan would never be the king.  But who would be the next king?  David…Jonathan’s dear friend.

Jonathan knew this.  He knew that he would never be king.  In fact, in I Samuel 18, Jonathan gave his robe, along with his armor and his sword, his bow and his belt, to his friend David.  This act was a symbol of the fact that Jonathan was surrendering any right he had to the throne…surrendering it to David.  And not only that, but Jonathan continued to be an even better soldier and leader than his father, the king.  Jonathan certainly behaved in a godly, kingly fashion, even though he knew he would never assume the throne. 

As Dale Davis says in his book, I Samuel: Looking on the Heart: “For Jonathan, then, the kingdom was not his to seize, not his to rule, but his to serve.”

And then this, which impacted me so greatly: “Maybe a tragic life isn’t tragic if it’s lived in fidelity to what Christ asks of us in the circumstances he gives us.”

Did you catch that?  Living in loyalty to Christ IN the circumstances He gives us! 

That’s what Jonathan did.  He lived royally even though he would never in reality BE a royal.  He lived in covenant relationship to God, faithfully, IN his circumstances.

This is exactly what I am supposed to do, every day.  I thought that morning of I Timothy 6:6, of what Paul told Timothy.  Paul said that “godliness with contentment is great gain.”  The note in my study Bible says that this is “an inner satisfaction with the situation that God has ordained for him.”

But how on earth is that possible, day after day…that inner satisfaction with situations in life that are so often very UNsatisfactory?!

This satisfaction is only possible when I realize that it doesn’t come from ME.  I can’t manufacture this deep peace.  Only God can do that in my heart as I surrender all my rights to Him and then obey Him by trusting Him. 

It’s realizing that God Himself loves me, and He is the One that has given me what I have in this life, hard as some of it may be.

My circumstances are not the hand I have been dealt.  My circumstances are not bad luck…or good luck.  They are not the luck of the draw.  Nor are my circumstances due to karma, or any other such nonsense that we sometimes are inclined to believe. 

God chose me and He saved me, and as His child I know that each occurrence in my life…every situation…is entirely under His authority and in His plan for me.  I know He loves me and I know that I can trust Him, totally, to do what’s best for me and what will cause me to give Him glory.  What a waste if I don’t!!

So when the pain comes to my heart and my life…when I’m inclined to settle in the negative thoughts and desires and questions that pop up so unexpectedly…I have the responsibility to do one thing right away.  That one thing is to talk to my Father and let His loving arms surround me with His peace.  And then obey, like Jonathan did.  Just live in obedience, step by step, and know that God will honor that obedience in my life.

He may not honor my obedience by taking away my situations, but that’s not why I am to obey. 

So the bottom line in all of this is just this: 

May my circumstances not dictate my response, but may my response be dictated by God’s character.

What is…is…because God is the One in charge.

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And He is a very, very good God.

 

 

 

 

 

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. 

Dad at railroad, early days

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!