Weary

I’m sitting here wondering how to start this post, so I’m just going to start this post by telling you that I’m sitting here wondering how to start this post. 

I’m still sitting here, wondering.

So I’ll just launch into it.  Gary and I had a disagreement on Saturday about Aaron. 

There.  I said it. 

It’s not the first and it won’t be the last.  😊

Aaron may be nearing 34 years of age, but Gary and I are still in the thick of parenting, believe me.  Like all parents, we don’t always see eye to eye on every issue.  And just when Gary and I think we have some situation all figured out, Aaron not only changes the rules, he changes the entire game!!

Not to sound like a whiner but parenting a special needs adult – or child – is challenging even on a good day.  Gary and I both get tired, on many levels.  What may not be a big deal can easily turn into a huge deal when we’re tired.  And trust me, Aaron can wear us totally out.

For instance, Aaron has just finished watching all four of the Jaws movies.  It’s taken him some time to watch all four of those movies.  Aaron’s current movie becomes his obsession, so lately we have heard more about sharks than we ever, ever, EVER wanted to hear.  Shark teeth, shark gills, shark size, shark color, shark location, shark diet, shark movies, and will there be a FIFTH Jaws??!!

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Please tell me no on that last one!

It’s like I told Gary on Saturday during our discussion about our disagreement…there are some days, many days, that by the end of the day, I am SO done.  Just really, completely done. 

Not done with having Aaron live here.  Not done with loving Aaron, by any means.  But just done, as in deep down bone tired. 

And so is Gary.

We talked and came to an agreement, and we still love each other.  We even still LIKE each other! 

But being tired…not just physically tired, but soul tired…isn’t resolved as quickly.  I don’t know about you, but when I get like this I tend to magnify everything.  Small issues become much larger than they really are.  I mentally bounce all over the place, making mountains out of mole hills, even when I know better. 

I sat down on the patio with my cup of coffee, enjoying the birds and the breeze, and I talked to the Lord.  I told Him I was tired, as if He didn’t know that.  And I told Him, as I am prone to do, that I sure would love to hear from Him.

As clear as day, this day that was just starting, this verse went through my mind:  “Be not weary in well doing…”

And I felt a real peace.

I got on my phone to look up the verse because I’m terrible at remembering references.  It’s Galatians 6:9 (one of the verses), and so I continued to scroll down on my phone to look at other translations and notes. 

One of the references was Malachi 1:13.  I hope you’re going to love this as much as I did.  Without going into tons of detail, God was talking to Israel about how they were neglecting to truly worship Him.  They were bringing defiled food and sickly animals for their sacrifices. 

God told Israel, “You also say, ‘My, how tiresome it is!’  And you disdainfully sniff at it,” says the Lord of hosts.” 

Israel was tired of doing the right thing.  They were tired of obeying God.  In fact, they sniffed at God’s instruction to them.  That means that they blew through their nose.  Much like I did on Saturday morning.  You know…that sniff through the nose when you’re frustrated with something. 

Don’t tell me you’ve never done it!

Sniff!!

OK, so I live with Aaron and I do get tired.  But when God says to not weary in well doing, He’s not saying I should never get tired and if I do then I’m sinning.  The “weary” in that verse means “to fail in heart.” 

It’s my heart…my heart issues…I need to guard. 

How do I do that?  By being careful not to offer God a sacrifice unworthy of Who He is.  God wants me to offer sacrifices of praise and thanksgiving and trust.  And I can only do this when I stop and realize that He is sovereign over my life…my whole life…even all the Aaron moments.  And anything else that weighs me down and causes me to sniff disdainfully.

To lay at God’s feet my worries, my anger, my sadness, my regrets…whatever else there may be…and then to replace all those things with praise and thankfulness and trust in Him.

Then I am better equipped to consciously continue in well doing…to do right even when I don’t feel like doing right…to not be weary in well doing. 

It’s a tall order for sure.  But I have a tall God who really will…and does…give me what I need, when I need it. 

There’s a promise at the end of Galatians 6:9:  “…for in due time we will reap if we do not grow weary.” 

Our reaping will take various forms, but a big one is a harvest of peace.  My situation may not change, but God will give peace as I obey Him. 

What’s got you tired today?  Our lists get long, don’t they?  Health…finances…children…jobs…moving…rejection…hurts…church…

But through and in it all, don’t let your heart fail.  Don’t fail to thank God for so many things, and for WHO He is! 

Don’t sniff at your life but sacrifice your life to the One Who loves you so much!

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The Reality

Three years ago, we planted sunflowers around the perimeter of our vegetable garden.  Aaron was SO happy that Gary and I had finally agreed to grow these giant flowers.  Aaron had wanted sunflowers for a long time.  They did not disappoint as they grew and grew and grew that first summer.

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Last year, Gary and Aaron planted some of the seeds that Gary had harvested from our first sunflower crop.  Again, the mammoth flowers grew steadily and gave us much beauty to enjoy.

This year we decided not to plant a vegetable garden.  Time constraints during the planting season, very late winter weather, some traveling, and severe drought caused us to make this decision.

One day, though, we noticed some plants emerging from the soil.  Sure enough, we soon realized that our sunflowers had returned.  We hadn’t planted a single seed this year.  These were volunteer sunflowers that had sprouted from old seed left in the ground from the year before.

Just a few days ago, there in our garden, was a welcome splash of color.  Sure enough, one of those volunteer sunflowers was blooming.  And it wasn’t long before Aaron also saw it.

“MOM!!!” he loudly exclaimed.  “Look at the sunflower!!  Let’s go see it!”

We walked over to the garden and looked at the pretty bloom, all bright and perky and sunny.  And of course, I took a picture.  Isn’t it pretty?

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But if you take a closer look, you’ll see more than one pretty sunflower.  And most definitely, if you take in the whole scene, you will have a new appreciation for how much we appreciate this flower.

Look at the sunflower stalk.  You notice that it’s missing something.  It’s missing leaves…lots of leaves.  The deer that call this area home have helped themselves to our sunflower leaves.  We didn’t really expect any of our sunflowers to bloom this year because of the damage done.

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And look at the background behind and around our struggling sunflowers.  The ground is parched and weedy and really quite ugly.

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So here is the reality of our garden this year.  It looks forsaken and ignored and certainly not a place of beauty.  It’s drab and dreary and dull.

Except for…this.  This beautiful, unexpected flower.

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What’s your reality today?  Oh, I’m not referring to your yard or garden.  What’s the reality in your life today?

Here’s a picture of mine.

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Many of you will know exactly what we are dealing with today.  After a welcome break of two and a half weeks seizure free, the low front that came in last night also ushered in seizures for Aaron.  I wasn’t really surprised, yet seizures are always concerning and sad.  And the loud thump very early this morning as Aaron fell out of bed during a seizure was most unwelcome, especially for poor Aaron.  Thankfully, he was uninjured, all wrapped up in his multiple covers like a cocoon.

Wet carpet, wet bedding, wet clothes…really, the least of my worries.  Another seizure a short while ago, and watching closely while Aaron is up and about, are my main concerns.  I can also change my schedule today, but I cannot change this reality that is a continual part of our lives.

That’s why reading the short devotional for today in the old Streams in The Desert was powerful and moving to me.  Listen to what George Matheson says about waiting for hope:

“Thou hast made waiting beautiful; Thou hast made patience divine.  Thou hast taught us that the Father’s will may be received just because it IS His will.  Thou hast revealed to us that a soul may see nothing but sorrow in the cup and yet may refuse to let it go, convinced that the eye of the Father sees further than its own.”

The eye of God sees further than my eye sees.  I see my surroundings in life, often ugly and stressful, but beyond what I see is what GOD sees…what God allows.

I have hope.  You, if you know and follow Christ, have hope.  Aaron may not be healed on earth.  But I have the hope of heaven, where he will be healed and where all will be perfect.

And I have here-and-now hope in God, which brings me peace…joy…strength.  We who follow Christ all have this wonderful hope, despite our heartaches and our deep valleys.

Look at what else Aaron and I found in our little sunflower patch.

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Future blooms, waiting to pop open and brighten up our dull garden even more.

Know that God is a God of hope.  Know that He will work out your problems for some good, unseen as it is now in your life.  Know that He has reasons beyond what you may ever know on this earth for the dark days you are facing.  Know that He will never leave you or forsake you.

“Strive to be one of those – so few – who walk the earth with ever-present consciousness – all mornings, middays, star-times – that the unknown which men call Heaven is “close behind the visible scene of things.”  (Streams in The Desert)

“For I hope in You, O Lord.  You will answer, O Lord my God.”  (Ps. 38:15)

 

 

 

 

Seeing BIG!

Last Friday evening, a good old Kansas thunderstorm was trying to blow in from the west.

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By the time we were getting ready for bed, the winds were kicking up and the lightning was really flashing.  Aaron, who loves storms…especially nighttime storms…was very excited at the prospect of a lightning show, seen clearly from his upstairs westward facing windows. 

“Mom, I want to keep my blinds open,” he informed me as we went through his bedtime routine.  I knew he would want to do this.  Every time we have a storm when it’s time for bed…or the prospect of a storm during the night…Aaron wants to keep his blinds open so that he can see the lightning in all its bright glory.

I’m glad that he’s not scared.  In fact, I join Aaron in his love of watching lightning.  That’s why, after I told him goodnight, I went straight to the bedroom on the other end of the hall.  We still call this room “Andrea’s room,” even though she hasn’t lived here for years. 

I stood at the windows there, in the dark, enjoying the gorgeous light show at this perfect vantage point.  I was actually having a little worship service right there.  Seeing God’s power displayed like this in nature makes me feel so small as I’m reminded of how big God is.

I was also reminded of a time several years ago when Gary and I were going through some deep waters.  God drew me to Isaiah 40 one morning.  Reading of God’s might in creation really soothed my heart.  Isaiah said that the nations are like a drop in a bucket…we are like grasshoppers…that God stretches the heavens like a curtain…and that He created the stars and calls them by name.

A God with that much power and that much care over creation and over our affairs is surely a God big enough to handle my little problems that seemed huge to me!

These truths were going through my mind as I watched the lightning at Andrea’s windows and as I thanked God for His love and His power.  But soon my private viewing of this storm was interrupted.  I heard Aaron’s bedroom door open. 

“Mom?” he asked as I heard his bare feet padding up the hall.

“I’m in here, Aaron,” I answered.  “I’m watching the lightning.”

“Mom!!” he exclaimed as he joined me at the windows.  “I saw it BIG!!”

So there we stood, side by side, watching each streak and each flash of lightning.  Some were muted, but still beautiful.  Then would come a huge burst of light, sometimes with jagged bolts, so bright it actually made us squint our eyes. 

“There’s a BIG one!!”  Aaron would say loudly as he rubbed his hands together and laughed.

Soon he was back in his bed for the rest of the storm, his blinds pushed up so that he could fully see and enjoy each bright burst of lightning.

I’ve thought a lot since that night about what Aaron saw and what he said.  The lightning, so bright and stunning, was indeed impressive.  No wonder Aaron couldn’t just lie in his bed, looking through his windows.  No wonder he wanted to keep his blinds open so that he could fully see each flash.  No wonder he just HAD to find me and to share his excitement.

“I saw it BIG!!”

I want to see God like that in my life.  I want to see Him BIG, but not to just expect His bigness to be demonstrated in BIG events.

It’s like the lightning.  God didn’t only create the huge flashes of light.  He also created the softer, smaller bursts of light…even though they weren’t as impressive as the big and bold displays.  All of God was in all the varying degrees of lightning that night. 

I admit that I love the times when God is big and evident in my life.  And don’t the huge answers to prayer…the “just perfect” verse for the hard times…the miraculous displays of His power…knock our socks off and give amazing testimony to His provision in our lives?

But so do the smaller events…the still, quiet voice…like the little storm cloud that Elijah saw on the horizon, the one that turned into a huge storm.  Or later, how God spoke to Elijah – but not in the strong wind, not in the earthquake, not in the fire.  God chose that day to speak to Elijah in a gentle blowing, a soft whisper.  But  God’s power was just the same in the softness and smallness as it was at other louder and bigger times.  The same God Who sent fire from heaven to consume Elijah’s sacrifice was the God Who also spoke to his servant in a whisper.

On my birthday last month, I found myself sad instead of happy.  It wasn’t anyone’s fault.  Nothing bad had happened.  I just missed Andrea and Kyle, and Andrew, and extended family.  I don’t particularly enjoy holidays and special days for that reason.  But instead of feeling God’s presence, I was allowing my birthday party to be a pity party instead. 

I walked into Bath and Body Works to pick up some soaps.  I always shop with a coupon.  My mantra is “It was on sale and I had a coupon!”  Just ask my kids.  Anyway, I had no coupon because I had used mine a couple weeks earlier.  I sighed, bit the bullet, and went inside to shop.  My “no coupon” situation further amplified my sad day.  Silly, I know, but that was where I was on that morning.

All of a sudden, a stranger walked up to me.  She held out a coupon and asked me if I could use it.  She said she had no need for it.  I was so amazed!  Such a simple act, but one that clearly touched my sad heart.  I thanked her profusely, and then I told her that this day was my birthday.  She was so delighted to hear that!  She wished me a very happy birthday as she handed me the coupon and walked away.  And my heart was lighter.  I thanked the Lord as I drove home for that very sweet show of love for me in that moment…both the love shown by a stranger…and the love shown to me by my Heavenly Father.  For I knew, in that very common and small gesture, that God was reminding me of His love and care for me.

I saw Him BIG in that little act!

Sometimes God shows Himself big here at home, in common events that I often see.  Yet what I don’t always see is the bright touch of God.  The commonplace can all too often hide God’s touch…not because God isn’t showing Himself to be there…but because I too often keep the blinds of my heart closed.  I just don’t pay attention to what He is wanting me to see.

Aaron had a seizure at the supper table one recent night.  Gary and I had worked all day on projects around the house.  We were both dirty and tired, especially Gary.  When Aaron suddenly started seizing, Gary immediately went to his side and held him so that he wouldn’t fall out of the chair.  Thankfully, Aaron was safe.  As he came out of the seizure and was more aware of his surroundings, Gary knelt down by Aaron’s chair and just talked to him.  The look in Aaron’s eyes as he looked into Gary’s eyes was just precious.  I snapped this picture.

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As I have looked at it, I realize that right there was God’s big love shining out of Gary to his son.  I am so thankful for this husband who walks beside me in life, and who also kneels down to care for our Aaron. 

And also grateful that I looked through the open windows of my heart, blinds up, and saw what I know God wanted me to see.  His power and love was shining through Gary to Aaron, and also to me.  What a gift, all too often taken for granted!  Just like the Kansas storms that we get accustomed to seeing and hearing, so I can get accustomed to the care of this good man that God has given me. 

Oh God, may I “see it BIG,” every day.  May I see YOU…BIG…in the joys and the sorrows; in the small and the large; in the friend and the stranger; in the familiar and the new; in the mundane and the unique; and in our home, all around me, every day.   

 

Unknown Ground

I wrote last Thursday about my mostly happy, musical day with Aaron.                    Singing We Go

But there was also the issue of his wet bed, which I thought was due to him drinking too much water before bed.  Pretty sure I was wrong.

Aaron’s new seizure pattern and the hard end to our mostly happy day certainly pointed to that reality.

I was cleaning the kitchen after we ate a late supper.  Aaron walked through the kitchen and then I heard a noise.  I looked over and saw him face-planted on the kitchen table.  What on earth?  I thought he had stumbled and fallen on the table.

“Aaron,” I asked as I headed toward him.  “Are you OK?”

That’s when I saw him falling over and I knew that he was seizing.  I yelled for Gary as I ran to Aaron, catching him somewhat as he hit the chair and then went down on the floor.  Gary helped break the fall, too, and then got a pillow for Aaron’s head as the seizure continued for awhile and then eased.

I knew, as I watched him, that Aaron must have had a seizure during the night…a seizure I didn’t hear.  This is his new pattern.  A low front with storms came through during the night.  Every seizure in the past 2+ months have come during low fronts, with one seizure at night and then one or more seizures the next day while he’s up and about, out of nowhere.

All this academic stuff, though, did nothing for my racing heart and the feeling that I had been punched in the gut.  Just looking at Aaron as he lay on the floor was heart-breaking, to say the least, and was a very unwelcome confirmation to us of this new chapter in his seizure journey.

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“What are we going to do?” I asked rhetorically to Gary as we stood in the kitchen.

“I don’t know,” he answered, wearily.  “This is unknown ground to us.”

And as quickly as Gary said those words, God spoke to me.  I don’t say that lightly.  But I know that it was God speaking His words of hope to me…to us…as surely as I know Gary’s voice.

“It may be unknown ground,” God said.  “But I have told you that I know the path that you take.”

Such comfort washed over me at that moment!  I mean, I still felt the physical effects in my stomach from the fear of seeing Aaron fall.  I felt weak and teary-eyed and worried.  But really, the “peace that passes understanding” kept rolling over me as I thought of those words: “I know the path that you take.”

This is hope.  This is true, biblical, God-focused hope that the world does not offer or understand.  Haven’t we seen that recently in the spate of suicides of very successful people?

There are two kinds of hope.  When I relate them to our situation with Aaron, I see that we have the first kind of hope quite often.  Gary and I hope that Aaron will improve.  We hope that he’ll be safe.  We hope that something we try will help his seizures to decrease.  We hope that we can find caregivers for Aaron, especially during our daughter’s wedding in Texas.

This kind of hope is a feeling, not based on any certainty, but just…well…a hope.  We hope for the best, but aren’t sure if it will happen.

But there’s another hope, one that comes from knowing God personally through our relationship with Jesus.  This is the hope that Paul, for instance, talks about in Romans 5.

This hope is one directed toward God’s promise, and CERTAIN of it’s realization.

This hope is IN God…in His character…in His Word…in His promises to me…in WHO He is!!

And this hope is why I was instantly filled with God’s peace as Gary and I talked about our new and unknown ground upon which we are walking.

This certain trust born from my relationship with my known Savior is what this world needs, and doesn’t have.  Nothing in this world can manufacture this kind of purpose and peace and comfort.

Nothing!

No amount of fame or money or success or promotion or self esteem or anything else that we strive for can bring us this certain hope.

Only a personal relationship with God will result in such hope.

Our problems may not go away, but that desire is not on what I am to place my hope.  Hoping in a desired outcome is normal, but does not bring me any lasting assurance at all.  I’ve learned that much in my life.

My only assurance is in knowing that God is sovereign.  He is in charge of my life.  He loves me.  He knows what’s best for me…for Gary…and for Aaron.

Sometimes His best is hard, but it’s always best.

So God’s best…God Himself…is my only hope.  And it’s enough, because God is enough.

Edward Mote says it perfectly in the old hymn, The Solid Rock:

 

My hope is built on nothing less

Than Jesus’ blood and righteousness;

I dare not trust the sweetest frame 

But wholly lean on Jesus’ name.

 

When darkness veils His lovely face,

I rest on His unchanging grace;

In every high and stormy gale

My anchor holds within the veil.

          

On Christ the solid rock I stand;

All other ground is sinking sand,

All other ground is sinking sand.

 

To end our evening, as I stood in Aaron’s room and looked out his window, God seemed to smile at me as He gave me this little touch of beauty from heaven.

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God knows the path we take.  All is well.

 

 

 

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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