Lens #1

Last week, I once again took Aaron to his yearly eye exam.  Doctor visits are always an adventure with Aaron.  Waiting for the doctor to come into the exam room is also a test of my patience.   Aaron stretches and wants to lay down.

 

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Or he eyes the tempting equipment and tools that the doctor uses, trying to pick them up and test them out before I tell him to stop.

 

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As I sat with Aaron last week and watched him during the exam, I was reminded of the following post from a couple years ago.  This was such a funny moment for me!   Here is what I wrote:

 

I took Aaron to his yearly eye exam today. God bless Aaron’s eye doctor. Next week I’ll be saying, “God bless Aaron’s dental hygienist,” but today all blessings go his eye doctor and to the staff. Oh, Aaron isn’t mean. He just has a very difficult time understanding what the doctor needs from him…..how to express what he is seeing or not seeing clearly…..opening his eyes wide…..not leaning back from every instrument that comes toward his eyes…..things like that. There was one very funny interchange, though, during the exam. You know how the doctor wants you to tell which lens helps you to see the letters on the wall the clearest.

 

Dr. Nelson: Aaron, is number one better? Or number two?

 

Aaron: Number one.

 

Dr. Nelson: OK. Now which is better? Number three, or number four?

 

Aaron: Number one.

 

Dr. Nelson: Let’s try again. Number three, or number four?

 

Aaron: The first one.

 

Dr. Nelson: You mean number three….here…..or number four…..here.

 

Aaron: Number one.

 

Dr. Nelson: Let’s try these. Number five, or number six.

 

Aaron: The first one.

 

Dr. Nelson: Let’s try number seven…..

 

Aaron: Number one.

 

Dr. Nelson: OK, let’s not do numbers anymore. Is this one better, or this one better?

 

Aaron: Number one.

 

HaHaHaHa!!!!!! How I wanted to belly laugh!! I do believe that number one was the winner, don’t you??!! 😎😵🤣

 

However accurate Lens #1 was, Aaron was sure that this was the lens he liked the best.  He didn’t waver one bit from that determination.

I’ve been thinking about this as I look at my own life, and the lives of many that I know and love.

Through what lens am I looking at my life?

I just ran upstairs to be with Aaron as he had another seizure today.  I’m thankful he was lying down, so there was no falling and no injuries.  But his seizures, especially after all these years, are serious and scary.  As we get older, and as Aaron gets older, Gary and I do wonder about our future and his future.

In the past days, I have communicated with family and friends who are enduring all kinds of trials.  Two with aggressive and serious forms of cancer, out of the blue.  Tragic family issues.  Separation.  Divorce.  Friends who just bought a house and now he lost his job, literally overnight with no warning.  Lots of chronic health issues with no end in sight.

So much suffering! And the way that I view suffering depends upon which lens I choose to look through.

I know the lens I NEED to be using.  I need to focus on the God that I know and on His word that He has given me.  I may be rattled and shaken, but my focus will be sharp if I’m looking to God.  My faith is in and on Him when I look to Him…not disrupted by all the suffering around me that I or others are enduring.

It’s like Aaron’s eye exam.  I need to realize that lens #2 or lens #3 are not right for me.

Fear is not a lens God wants me to use when viewing my circumstances, or the circumstances of those I love.  Neither is anger…or worry…or a host of other responses that are all too common for me.

I know that when I have my eyes off God, life becomes blurry.  I lose focus.  I lose peace.  I lose hope.

I need to go back to lens #1, for sure!!!

The best way for me to keep my focus is to go to my Bible…to read God’s promises and let His words soak into my mind and my heart.

My parent’s favorite Bible passage is perfect for me to use in keeping my focus:

 

God is our refuge and strength, a very present help in trouble.  Therefore

we will not fear, though the earth should change and though the mountains

slip into the heart of the sea; though its waters roar and foam, though the

mountains quake at its swelling pride.  (Psalm 46:1-3)

 

God told us we would have suffering and trouble on this earth. But He also has promised to be our very present help, our strength and our refuge, no matter what carnage is around us.  He is a loving Father who takes care of His children.

This is the focus I need.  God is the focus I need.

God is my lens #1.

I love the old hymn, The Solid Rock.  Look at verses 2 and 3:

 

When darkness veils His lovely face,

         I rest on His unchanging grace;

         In every high and stormy gale,

         My anchor holds within the veil.

 

         His oath, His covenant, His blood,

         Support me in the whelming flood;

         When all around my soul gives way,

         He then is all my hope and stay.

 

         On Christ the solid rock I stand;

         All other ground is sinking sand,

         All other ground is sinking sand.

 

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Work, Work,Work!

I believe every family has sayings that have been passed down over the years – sayings made by family members and then repeated again and again.  Often these comments are funny, laughed at every time they are uttered as memories of the person and the situation surface once more.

One of our family favorites is a comment made by Aaron years ago when he was very frustrated by having to pitch in and do some work around the house.

“Work, work, work!!”  he exclaimed.  “All I do is WORK!!”

No one understands the humor of his statement like we do.  That’s because we all knew…and know…Aaron.  He worked the least but complained the most.  Now when one of us repeats that phrase with great emphasis, we all just laugh and shake our heads…just like we did when Aaron first said it.

I do believe we now have a new phrase, thanks once again to Aaron.  Another one of many he has left us over the years, trust me.

Two weeks ago, Gary and I were packing up our vehicle for our annual trip to Houston.  We travel there every April to see Andrea and Kyle, and with the added bonus of spending time with Andrew, who is there for an NHRA race.

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This year we were taking lots of Andrea’s “stuff.”  That’s because she and Kyle are married now, and have a house, so her “stuff” is hers once again.

We had many loads to carry out and put in our vehicle.  Aaron was in the middle of all of it, talking and hovering, hoping that none of this activity was going to eat into our normal evening routine of watching a DVD or show.  He seems to think that his presence will continually remind me that he is my priority.

So, we put him to work.  He was willing to do so, thankfully, and really was a huge help.  He helped lift the heavy electric piano into the van, as well as carrying box after box outside for us.  Eventually, though, as we were nearing the end, Aaron’s impatience started to surface.  He knew that I still had other things to do before we could watch a show.  Bedtime was looming.  His routine was already a mess, and his nerves were showing.  He was excited at our leaving, with thoughts of all the restaurant meals awaiting him and his caregiver during the week, but also anxious at our being gone and his normal life being a little unhinged.

Aaron never offers to sit and talk about his feelings.  Goodness, no!  He doesn’t even understand what’s going on in his head and heart.  But he does SHOW his feelings by usually hurting ours.  Or by being confrontational, rude, stubborn…you get the picture.

His happiness at helping had turned instead to blame.  He blamed his anger on us for making him work.  He and I worked through all that for the most part, watching our show as he calmed somewhat, but then as I tucked him into bed later, he erupted again.

“Mom!!” he said.  “You made me do servant work!!  I don’t like SERVANT work!!”

It was so hard not to laugh!  But believe me, all of us…minus Aaron…laughed a lot about what he said as we spent a few fun days together.

Servant work!  Indeed!

In the week since we’ve been home, I’ve seen the other side of Aaron…the side that enjoys helping us.  He wanted to help me cook supper one night, and then to send a picture to Andrea – who told me that it looked I was making Aaron do servant work again.  😊

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He also wanted to share his Sonic mint with Gary that evening, so he put it on Gary’s supper plate.

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This past Saturday, he asked if he could help me with some pruning.

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He often takes our recycling to the container; brings down his laundry; sets the table; and other chores around the house.

Aaron is usually happy to help when things are going the way he wants.  But when his version of normal is anything but, then helping becomes “servant work.”  Not fun…not to be expected…not to be done!

I look at myself and I see this attitude of Aaron’s in me more than I like to admit, especially when it comes to caring for him.  I’ll be honest.  Taking care of a special needs child, even your OWN special needs child, is not all halo moments where we feel or act like angels.

Oh, my compassion is through the roof many times.  Like when I sat in the ER with Aaron for five hours four days before our Houston trip, waiting for him to be admitted to the hospital for seizures the day before and very low sodium.  Thankfully, we were sent home when his sodium level increased.

Home, where Aaron had a very long and a very scary seizure that evening.

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His seizures, injuries, staples, stitches, missed fun days, so many meds, the look on his face as he held his Subway sandwich on our drive home…so many times my heart just breaks for him.

But then he has those behaviors, rigid routines, expectations of me, nonstop talking at times, anger…

Seizures that keep me home, having to change all my plans…and his.  Extra laundry, sadness, worries for now and for the future…

A life unlike most of our peers for me and for Gary.  Not able to up and go, to travel at will, to plan for a fun life of retirement trips.

Special needs parents weren’t given our children because WE’RE so special and God knew we could do this.  God wants us to see that HE is the special One that we need, and that in no way could we live this life without Him and His grace and His strength.  Goodness knows I have none of my own.

Many times, and many days, this life that God has given me can only seem like “servant work.”

But really, there are two kinds of servant work, and it’s my attitude that determines which I will experience each day…each moment.

When I think of how God wants me to serve in every situation, and when I do this servant work with that in mind, my attitude is one of inner joy and peace – even if outwardly things are crazy, and I am frustrated.  My goal then isn’t about ME.  It’s about Aaron, and to serve him in a way that pleases God.

But when I get in my own way and take my eyes off God…and like Aaron, things aren’t going the way I want…then I sometimes get angry and frustrated.  When I do this, all too often, then I’m doing “servant work” in the way Aaron meant.  Unpleasant, yucky, unhappy work that makes me bitter.

So, to all of us…and ESPECIALLY to my special needs parent friends…know that God understands.  Just talk to Him when you’re exhausted, when you blew it, when you yelled at the child you love so much, when you’re envious of other’s lives, when you’re out of money and patience and even hope – just talk to God, lean on Him, and then know that each day is a new day.

A new day to do servant work, the way God intended.  After all, we have the best example in Christ.

“Have this mind in you, which was in Christ Jesus, who, though he was in the form of God, did not count equality with God a thing to be grasped, but made Himself nothing, taking the form of a SERVANT, being born in the likeness of men.”  (Philippians 2:5-7)

Servant work is God’s work, really.  And He’ll give us what we need to do it the right way, every day.

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One Thing

I’m sitting here looking at my blank computer screen, wondering how on earth to write this post.  I write better when I can be totally up-front and honest about life.  But sometimes I can’t be that way because some matters are private, involving issues and people that prevent open sharing.

Was that catchy enough?  Do I have your attention now?  HaHa!

I really wasn’t trying to reel you in with my first few sentences.  I am, like I said, just being honest.

Recently, Gary and I had a “thing” happen.  It’s easy to say the typical phrases that we often here, such as what I just said.  “Things happen.”  Or here’s another one – “Life happens.”

Yet as a follower of Christ, I know better.  I don’t get upset when others, or when I, make those statements.

“You know, things just happen,” I have often said.

But again, I know better.  I know that God is the One Who is in charge of my life and who allows every single “thing” in my life to happen.  In reality, my “things” don’t just happen…they are permitted or ordained by God.  I am His child and He is in charge of all aspects of my life.

Most often, when we say that “things” happen, we’re not referring to happy “things.”  Usually, we are talking about stressful “things.”

Gary and I have had some recent stress.  Don’t we all?  We had to make the difficult decision to put our sweet Great Dane, Jackson, to sleep.  Not long after that, Aaron had a drop seizure on our stairs and ended up with eight staples in his head.  And then this “thing” intruded into our lives.  It’s not a happening that occurred, and then is over and done.  It’s more like a dark cloud of long-term wrong that will hover over us…well, forever, really.

All these “things”…all this stuff, plus many more daily stresses…can just be overwhelming and exhausting.  But two other “things” have taken place as well…in my heart, which is the best place for God to work HIS things.

One “thing” is that my mother’s favorite verse has been rolling around in my head for days now.  It’s Psalm 46:10: “Be still, and know that I am God.”

I love, though, the meaning of “be still.”  This is how I have been saying this verse recently: “Quit striving, and know that I am God.”

I can’t make “things” not happen.  I can’t always change situations.  And even if I try, the doors often remain closed.  The damage is done.

I have a mental image of being tied up with ropes.  Those ropes are the “things” that have or are happening in my life.  I twist and turn and pull and flex against those awful ropes, trying to be free.  But God wants me to stop that!  He wants me to relax and to simply trust Him…to rest, and to know that He is God.  And as God, He will handle all my “things.”

All this sounds so good, doesn’t it?  So spiritual and so right.  But how on earth…really, how on this old sinful stressful earth…do I quit striving?

God gave me a huge part of that answer over the past few days.  It’s found in the first few verses of Psalm 27.

David talks about his “things.”  He says that evildoers want to devour his flesh.  He is surrounded by enemies, adversaries, and whole armies…literally…who want to destroy him.  He was living in caves as he tried to survive.  His treatment by King Saul was totally unjust and evil.

It’s awful to be hated.  It’s awful to be the recipient of unjust treatment.  It’s awful to be on the run, either mentally or physically…running from the pain and the wrong and the hurt.

So, in verse 4, David says, “One thing I have asked from the Lord, that I shall seek…”

Let me stop to say that I can tell you what my one thing usually is when hard times come, especially injustice.  My one thing is to think that if I could only talk to this person or to these people, I’d tell them a thing or two!  Or on a nicer slant, my one thing may be to try to have a pleasant, open talk with them. Surely, they will listen!  Just give me one chance, Lord, to handle my situation…whatever it is…by doing that one thing that will make ME feel better.

But what was David’s one thing?  He asked God to let him behold His beauty in the tabernacle, to meditate and to dwell in the temple.

In other words, David’s one thing was to worship God.

And there is the answer to my question about how to quit striving against my “things.”

Worship.

David’s one thing that he asked of God when he was going through all of his awful “things” was the opportunity to once again worship God in the tabernacle.

“There is only one place where your heart can be healed, restored, satisfied, and protected.  It won’t be healed by winning human wars.  It won’t be satisfied in human acceptance.  It won’t be restored when you have meted out vengeance.  It will only be filled, satisfied, and at rest when it is filled with the beauty of the Lord.”  (Paul Tripp)

When I focus on God, I am not focusing on my “things.”  I am instead aware of God’s greatness in the middle of my “things.”  His power is what upholds me.  His plan, however vague and unknown it may be to me, is one which I can accept because in God’s beauty I see His love for me.  I experience His peace and His grace when my eyes are on Him, and not on my “things.”

We all have those hard “things.”  Some of you are enduring much more difficult “things” than mine.  May we all learn to worship God even when we are surrounded by our pain and fears and sadness.

Then to rest…quit striving…and let God be God in our lives.

“Quit striving, and KNOW that I am God!”

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Plan B

I heard Aaron’s first seizure at 4:00 a.m. night before last.  I went in to be with him until it was over, assuring that he was safe.  And always, when this happens, my fuzzy sleepy brain tries to remember what plans I had for the upcoming day, and how those plans may need to be re-arranged.  Usually one seizure means others will follow, though in recent days that hasn’t been the case.  We just never know.

Not long after Gary left for work, I heard Aaron getting out of bed.  He came downstairs, eyes very droopy and tired, with his typical post-seizure headache and stomach ache his first concern.  I told him that he should go back to bed.

“I can’t,” he replied.  “I’ve already put my time in my notebook.”

You see, Aaron keeps a log of the exact times that he goes to bed and the exact times that he gets out of bed.  Every.  Single.  Day.

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In his rigid and organized world, he needs a period of time before he will go back to bed.  I know not to fight this.

Aaron went about his morning as best he could, with me listening closely for another seizure.  His falling seizures sometimes occur after only having one seizure during the night, so I was on full alert.

I was hoping that Aaron could go to his day group.  Friday is movie day and he enjoys that.  But he didn’t feel like going anywhere, he said, and I could see that he really was struggling.  Besides, if he had a seizure while out with his group, that could be very dangerous.

I knew that my day now needed to be changed, my plans shuffled or canceled.  Nothing in my day was hard to change, but it was inconvenient…and not only for me, but for my friend whom I was going to see after dropping Aaron off at Paradigm.  My day would have been:  take Aaron to Paradigm; go to Lolly’s house for a visit; run to Aldi for some groceries before our weekend snow comes; home with groceries; pick Aaron up from the theater; take Aaron to Wal-Mart for his “end-of-week” snacks; zip into Sam’s; and home.

Changing this day was far easier than having to reschedule a doctor appointment, for instance.  Yet having to switch from Plan A to Plan B can be irritating and at times difficult.  Poor Aaron can’t help any of this.  I’ve learned to be flexible.  And to be thankful that I don’t have to work, as having a job would be impossible.

As it turned out, Lolly came to my house.  She even brought some delicious little Brazilian cheesy bread balls that she learned to make during her years as a missionary with her husband in Brazil.  And cake!!!  She brought me…oh, and Gary 😊…some cake!!!

I was able to later run Aaron to Burger King for a take-out meal, knowing that if he had a seizure at least he was sitting down in the van.  Later, as he napped, he did have a second seizure.  I was so thankful that he was in his bed, safe from falling down!  And in the evening, we got to make our Wal-Mart trip.  Gary went with us so that we could both keep an eye on Aaron.  It was fun!  And Aaron wanted to make sure that I took a picture of him with this turkey breast that he LOVED for some funny reason!

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Not every Plan B in life is fun, though.  Many times, our switch from Plan A to Plan B is pretty devastating, and certainly not easy.  And as believers, we know that God has a plan and a purpose on this path upon which He places us.  Yet He never said that our path will be rosy.  Most often, it is not.

God told us to take up our cross and follow Him.  He did not say to take up our basket of May flowers and follow Him.

One of the most impacting books I have ever read is The Cup and the Glory, written by Greg Harris.  Harris talks about what it means to follow Christ.  Drinking the cup of suffering is what brings glory to God and great growth to us as His followers.

In Acts 16, during Paul’s second missionary journey, we see a profound example of God’s perplexing leading in Paul’s travels.  Blessings had been abundant to Paul and Timothy.  The Greek phrasing in verses 5-8 is so telling.  The words “on the one hand” are soon followed by the words “on the other hand.”

On the one hand, churches were growing and being strengthened…but on the other hand, as Paul tried to travel to Asia, he was forbidden by the Holy Spirit to go there.  Later, as Paul and Timothy tried to go to Bithynia, they were once again stopped by God.  They finally ended up in Troas, where they never intended to go.

That road to Troas led through high mountains and was very difficult.  Why did God take Paul away from his intended destination, only to place him in such a strenuous and uncertain place?  Why did Paul and Timothy have to walk so long and so wearily through barren land full of dangers, and with no ministry taking place?

But Paul walked.  He kept walking in faith and in obedience to God, not understanding the reasons but fully understanding that God knew those reasons, and that was all that mattered.

Harris says, “It’s easy to walk with God when He exhibits the visible hand of His blessing.  However, Jesus calls us actively and continually to walk with Him – even when we can sense neither His presence nor His blessing – and not merely when you see Him feed the 5,000.”

Our goal in life should be to keep our eyes on God, not on our destination.  We may head one way, a God-honoring way, only to be re-directed by God onto another path.  Keeping our eyes on God during those disappointing times is key to experiencing His peace in the middle of our puzzling questions.

Our main goal on our journey is to be God Himself.  To know Him, to honor Him, to serve Him…wherever we are…is where we need to be focused.  God alone.  Through our questions, our tears, our concerns, our anger…God knows, and He cares, and He has a purpose.  His purpose is far greater than we will likely ever know on this earth.

Plan A?  Not today.

But on the other hand, Plan B!!

“Trust in the Lord with all your heart and lean not unto your own understanding; in all your ways acknowledge Him, and He will direct your paths.”  Prov. 3:5-6

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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.

 

 

 

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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A Heritage Worth Leaving

We hated to do it, but the time had come.  Our last two remaining pine trees had, or were, succumbing to Pine Wilt disease. 

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The destructive nematode had done its dirty job and now it was time for the tree service to come in and do theirs.  It’s always sad to see once beautiful trees that have stood for years come crashing down in a matter of minutes, then chopped up and hauled away like so much trash.

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In our front yard lay the biggest heartbreak, though.  Our one remaining evergreen…we called it our Gumdrop Tree…that we had decorated every Christmas for many years was dying as well, so down it came and off it went. 

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Just like that.

Gone.

No evidence remains of our once gorgeous trees.  Every piece was cut down, cut up, and driven away in huge trucks. 

Even the stumps were ground down.  Gary finished the clean-up in the following days, planted grass, and that was the end.

I thought of these scenes the following week when I was reading in my One Year Bible.  This phrase jumped out at me in Jeremiah 16:19:  “…our ancestors left us a foolish heritage, for they worshiped worthless idols.”  (NLT)

I instantly thought of my role as a parent, and have pondered since then the sad prospect of a foolish heritage.  My role as mom and Gary’s role as dad has drastically changed over the years. 

We have gone from this:

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To this:

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And it all seems to have happened so very quickly!

Plus…we are planning a wedding this year!!  Yes, Andrea and Kyle are to marry in October!! 

So I see with my own eyes the passage of time…how true is the scripture that says all flesh is grass that withers away.  Like a flower that fades, God tells us.

That’s quite a reminder that life passes quickly.  The picture of our fallen trees was a stark example to me of that truth.  Once stately and strong, they are now gone. 

But I am not that tree.  Though my life may fly by quickly, I have the opportunity to leave a heritage behind, especially to my children. 

To young moms and dads beginning on this journey of parenting, I would encourage you to be intentional as you set out to raise your children.  Live with the end result always in mind, as my friend Jill loves to remind young mommas. 

What will matter most when your children say that dreadful goodbye and leave your nest?  I can tell you that it isn’t whether they have mastered a sport or a musical instrument.  It isn’t whether they have excelled at school and have college scholarships awaiting.  It isn’t that they have tons of friends and a super active social life. 

What matters most is their personal relationship to Jesus Christ.  What matters most is their mastery of God’s Word.  What matters most is that they have owned their faith. 

We leave our children a worthless heritage when we focus our time…our energy…our money…our every effort…on things that will not matter one whit to their eternal souls.  Sports, music, grades, friends, a social life…these have their place, but they are not to take THE first place in our child’s life.  And it’s up to us as parents to guide their focus to what holds true value in their lives, even when they don’t see it that way. 

What useless idols do we worship as we raise our children? 

Fame?  Money?  Popularity?  Technology? 

It’s so easy to get sucked into the mold of this world, thinking that these issues are all important while we ignore the eternal and the spiritual. 

Foolish heritage.  What a tragedy! 

Don’t let that be said of you, dear young parents.  Start now to look ahead to the end result…to think of where each activity and each focus of your child’s life will lead them. 

Remember that God also said:  “The grass withers, the flower fades, BUT the Word of our God stands forever.”  (Isaiah 40:8)

Now that’s a heritage worth leaving!

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