Category: Epilepsy

Stepping Into the Mist

Several years ago, I turned onto a road near our house, and this was the scene that met my eyes.

I couldn’t see very far ahead.  And even though I knew the road, I didn’t know what might be on the road out of my sight.  The fog hid what was there, beyond my vision, but I knew I needed to go forward.

If you know Jesus as your Savior and are following Him, you know that there are certain times that He puts you on a road that is shrouded in the unknown.  I see it around me all the time, either with family and friends, or those that I don’t personally know.  And I have experienced it in my own life.

I will never forget the day that Aaron had his sudden first big seizure.  We were living in Germany where Gary was stationed in the military.  Aaron’s seizure was completely unexpected and terrifying.  I remember the cold fear that squeezed my heart.  Then came the ambulance ride, the days in the German children’s hospital, the language barrier, the exhaustion, and the shocking diagnosis of Epilepsy.  

But I also remember our first night back home, when I could finally sit at my desk and cry the tears I had held back all week.  And there it was…God’s amazing peace filled my hurting heart.  He reminded me that He had not gone anywhere…that He was with me and with Aaron…and that He was the same God whose character I had known for many years.  He had not changed one bit.  He had a reason for this unexpected bend in the road…this fog that I could not see through still held Him there with me.  

I could freeze in fear or be angry with God or be bitter about why He allowed such a thing to happen to our little Aaron.

Or I could step out in faith and trust in my heavenly Father.

I love what F. B. Meyer said: “There is nothing, indeed, which God will not do for a man who dares to step out upon what seems to be the mist; though as he puts down his foot he finds a rock beneath him.”

Moses knew this about God when he spoke to the assembly of Israel:

“For I proclaim the name of the Lord; ascribe greatness to our God!

The ROCK!  His work is perfect, for all His ways are just.

A God of faithfulness and without injustice, righteous and upright is He.

(Deuteronomy 32:3-4)

Whatever you are going through today, know that if you are following God, He will be your firm rock in the mists of fear and uncertainty.  

You will find a rock beneath your feet and that rock is God Himself.

And some day you will see that same road clearly, in all its purposes, as the best plan that God could ever have for you.

But We Need the Rain

It sure has been stormy over a large part of the country this spring.  We have had our share of strong storms here in Kansas as well.  After several years of drought, the comment I hear over and over after another storm…and have many times said myself…is, “But we need the rain!” 

Storms certainly can be beneficial, and beautiful, too.  

But they can be hard as well, and scary.

I woke up this morning to another storm passing through.  But I also had the thought of life’s storms on my mind.  That’s because Aaron had five hard seizures during the night.  I finally had to give him a rescue med.  These times with Aaron leave me in an emotional frame of mind, vulnerable in my spirit.  It’s important that I corral my thoughts and there is no better way to do that than to spend time with the Lord.

I opened my old devotional book, Streams in the Desert, to today’s date.  The scripture today was from Mark 4.  It’s the story of Jesus getting in the boat with His disciples on the Sea of Galilee.  The first sentence on the page was this:

“Even when we go forth at Christ’s command, we need not expect to escape storms…”

The storm outside my window matched the storm in my heart, and so God had a special storm story for me.  I love His love for me!  I love how He gives to me exactly what I need, exactly when I need it.

Jesus knew that His disciples would encounter a strong storm out on the lake. After all, He created the storm!  The disciples, terrified, cried out to Jesus as the storm tossed the boat.  Jesus, asleep, was awakened by their frantic voices asking Him if He didn’t even care that they were perishing.

Jesus calmed the storm and then gently rebuked them.

“Why are you afraid?” he asked them.  “Do you still have no faith?”

Jesus put His followers in a place of testing.  In their storm, He showed His power and in so doing, He used it to increase their faith.  

I have learned, especially in our life with Aaron, that God has put me in a boat and said, “Let’s go over to the other side.”  

But getting there involves hard times.  I don’t like the storms, but how they increase my faith and my love for Him!

Just like realizing how much we need the rain that our storms have brought, so I realize that the sufferings of my life bring me what God knows I need.

And this lesson is huge:  God hasn’t commanded me to understand.  He HAS commanded me to trust.  

If I had all the answers as to the why’s of suffering, I would have no need to trust.  In learning to trust, my walk with God is sweeter and deeper than I would ever have known otherwise.

“We never know how much real faith we have until it is put to the test in some fierce storm; and that is the reason why the Savior is on board.”   (Streams in the Desert)

God in His kindness ended this day with a gorgeous sky, a perfect picture of the beauty of knowing and trusting Him.

Sticker Shock

Last week in Walmart, Aaron was excited to show me a sticker book he had found.  He wanted to give it to Ryker, his nephew, and if you know the history there then you know that this was a very sweet gesture.  But I told Aaron the sticker book was way too advanced for Ryker but added that I thought he should try to do it.

Now Aaron isn’t very keen on most craft-type projects.  As I showed him how you match the lettered and numbered stickers to the spaces on each picture, he became more interested.  So, we bought the book and home we went.

To my great surprise, the first time that Aaron and I worked on the first dog picture, he was hooked.  He absolutely loves finding the correct sticker and matching it to the right place on the picture.  Aaron is a little shaky because of his seizures and seizure meds, but he is really doing great with putting the pieces in each space as carefully as he can.  After I sat with him for that one time, he has finished each picture mostly on his own with only a little help from me here and there. 

He is SO excited about this accomplishment!  He wanted me to take a picture to send to everyone.

Aaron is very happy with this sticker book and with how well he is doing with it.  It’s great fun to see.  And he wants everyone else to see as well!

He took it to his Epilepsy doctor, who was so nice to take the time to let Aaron show it to him.  

His office staff and the nurse were also kind enough to look at it and let Aaron explain all about the stickers.

Aaron took it with him, along with a new cat sticker book we bought, as we went to visit our friend Speedy for his birthday.  He showed them all about it and Speedy’s mom ordered him some right there on the spot.  Aaron was thrilled!

That morning as I was having my quiet time, I heard Aaron rolling his chair up the hallway.  In the room he came, sitting in the chair as he guided it with his feet, and rolled up to the bed.  He proceeded to open his sticker book and get to work.  

“Um, Aaron,” I said, “this is my quiet time, so you need to run on and do your stickers in your room.”

“But Mom,” he replied, “I can have my quiet time here, too.  I can be quiet!”

Aaron being quiet is a miracle that God has not granted yet.  

Off he rolled, back to his room.

I was out for a bit yesterday morning and when I drove back to the house, there was Aaron sitting at the end of our neighbor’s driveway…talking, of course, and showing our two very sweet neighbors his sticker books.

Today he showed all our Meals on Wheels clients his dog sticker book, letting one find the correct sticker and helping her put it on the right spot.  Then he took the book into Pizza Hut and worked on it while we waited on our lunch.

You might wonder why I am writing about all this.  It’s because Aaron has never really enjoyed painting or coloring or drawing or most other art projects.  He will do them reluctantly, with lots of our help, but his heart is never in it.

But this sticker book has captured his attention enough that he was willing to try it on his own.  It’s a huge victory for him and for me!

I’m as thrilled as I was when he learned his alphabet before he was 2, and taught himself cursive, and how to read and do math.  

That was so long ago, and over the years we see regression in some areas as well as frustration on Aaron’s part about what he CAN’T do.

But this sticker adventure has been a huge shot in the arm for Aaron.  He is delighted with himself, and he is so happy that he has something he can share with others…something that HE did on his own!

At this time of graduations and awards and all the pride that parents feel, it’s just sweet that we can praise Aaron for a job well done and see the joy on his face.  

And then to see the understanding and the shared excitement that others share with Aaron is just the cherry on top.  

It may “only” be stickers, but oh, it is SO much more to Aaron!

Uncle Aaron: Out of Order

A few weeks ago, Aaron had an incident at his day group.  He got mad at another client there, lost his temper, and ended up being pushed down.  As a result, a nose piece on his glasses got a little bent.  As soon as we could, I took Aaron to our vision center to have his glasses fixed.

Knowing that Aaron greatly enjoys telling everyone all the juicy details of these happenings, I paused to talk to him before we went inside.  I told him that no one needed to know all about how his nose piece got bent.  It’s hard to explain without making him or the other young man or his day group look bad. 

Aaron agreed.

I was not convinced.

As soon as we were seated at the table, Aaron took off his glasses for the technician.  She immediately saw the bent nose piece.  But Aaron could not stop himself from giving at least some form of explanation.

“My place in Wichita went out of order,” he flatly said.

She was confused but made no comment, only smiled.

I was holding in a belly laugh.

And Aaron strikes again with his hilarious and unique way of explaining things, I thought.

It wasn’t until sometime later that it hit me.  Aaron had made the perfect explanation of how he sees his new role as Uncle Aaron.

His place in our family went out of order.

Order is what Aaron craves in his life.  But it must be the order that Aaron mandates.  Anyone who disrupts that order is the object of Aaron’s anger.

Aaron’s nephew, Ryker, has disrupted Aaron’s ordered life.  Aaron’s normal has been upended now that Ryker and Andrea and Kyle live here.  

When the three of them are at our house, Aaron’s mood often becomes confrontational and angry.  He makes comments about how we don’t love him anymore or don’t love him as much as we love Ryker.  Or he gets angry at Kyle for whatever reason.  

Aaron has had us to himself for years.  This sharing business is a monumental adjustment for him.  

Autism is so tricky…so very hard to understand sometimes.  A lot of times.

Or we understand it on paper but when behaviors affect our joy and our emotions then it’s, quite honestly, maddening.

This is how I look at it.  When we see Aaron having a seizure, we understand what is happening.  We feel concern and empathy for Aaron.  We want to help him and be sure that he is cared for and safe.

However, when we see Aaron’s autism at play, it usually involves some sort of behavior from him.  Sometimes he can be funny or uniquely amazing, but there are also plenty of times that he is disruptive, angry, unreasonable…I’ll stop there.  You get the picture.

When he is seizing, we stay with him until the seizure is over.  We would never tell him to stop seizing.  He can’t, of course.

When he is having an autistic episode of anger or frustration, we try to talk to him…to tell him to stop…to get him to listen to reason.  But he usually can’t, any more than he can stop a seizure.

But that fact is hard to grasp in the middle of everyone’s high emotions.  

When special needs affect behaviors, it is very difficult to have the same level of compassion that we have when there is only a physical effect, such as a seizure.  That’s because behaviors affect others around the person so personally.  Our emotions get involved because we are frustrated, hurt, angry ourselves, disappointed, and the list goes on.  

Aaron reacts to his environment very strongly.  His environment has been turned upside down by the addition of his nephew into his life, as well as his sister and brother-in-law. 

All of this makes me think of that old Tina Turner song: “What’s Love Got To Do With It?”

Nothing, to Aaron.  Not when his world is out of order.

It’s not all bad, though.  Aaron has sweet moments, and we relish those.  

A few nights ago, he wanted Ryker to sit on his bed before they left.  He gave Ryker a necklace of his and laughed in delight at how happy that made Ryker.  Then Aaron ran downstairs to tell Kyle he was sorry for being mean to him earlier.  

Yesterday, Aaron walked outside with Andrea and Ryker. 

 

Aaron was more patient with everyone and didn’t attempt to be the only one talking all during our lunch.

“Was I good when Andrea and Kyle were here, Mom?” he asked me last night. 

He’s so childlike at these times and my heart really goes out to him.

Our prayer is that Uncle Aaron will learn to be secure in his place in our family; to develop a relationship with Ryker as well as Kyle; and to know that he is greatly loved.

And to someday know that his world is not out of order but is instead in a very wonderful order!

Skittles and A Super Bowl Ring

Nearly every day that Aaron is at his day group, one of the staff will take him the short distance down the road to the nearby Quik Trip.  This little outing is the highlight of Aaron’s day.  He loves picking out what food and drink he will buy.  

Aaron especially loves Skittles, but his picky mom (ME!) has told him that he does not need to buy Skittles every day…and he definitely does NOT need to spend the majority of his money on the big bag of Skittles.  A small bag of Skittles a couple times a week is OK.

Aaron has made this rule of Mom’s a big deal.  A very big deal.  He has talked it to death with me…teased relentlessly about buying Skittles when he didn’t buy them…told the staff over and over and over again about how “Mom said NOT to by Skittles!!…and I am quite sure, has talked loudly and clearly to the Quik Trip staff about how his Mom said not to buy Skittles.  

During Christmas, Aaron was taken on his regular trip to Quik Trip.  And guess what?  He was given a special gift from the workers there.

You can probably guess what it was.  

A very BIG container of yummy Skittles!!

Just look at Aaron’s face and you won’t need me to tell you how happy he was.

How I laughed when I saw these pictures!

But more than laughter, I was so touched by the kindness of the Quik Trip workers who obviously have gotten a kick out of talkative Aaron’s Skittles stories. 

What a very nice thing for them to do!

Fast forward now to last week.  Aaron and I had run into our nearby Dillon’s, where he hightailed it to the deli counter as soon as we walked in the door.  I finally caught up to him, only to see him bent over rubbing his hands together and talking loudly in great delight.

“MOM!!” he nearly yelled, “they have Cheddar Pasta Salad today!!!”

Aaron’s love of Cheddar Pasta Salad is well known among the deli staff.  Actually, it’s well known among many of the Dillon’s staff in other departments as well because Aaron makes sure that everybody is at the receiving end of his talking.  

So, on this day I agreed to let him buy a Cheddar Pasta Salad…a LARGE!!…of course!

The very nice woman behind the counter has been getting to know me and Aaron.  She is very patient with Aaron no matter how busy she is.  She has experience with autism because of her own young son.

She happily filled the large container to the brim with the salad while Aaron excitedly oversaw her every move, all the while eagerly talking to her about the upcoming super bowl game.  She told us how busy the deli was as they were preparing platters for the game, and then asked if we would like to see one of the deli trays she had just made.

She showed us the pretty tray and pointed out the super bowl ring that was part of the decoration on the side.  

“Hey Aaron,” she said, “would you like a super bowl ring?”

“Yeah!!” he eagerly answered.

She handed him a ring and he put it right on his finger, a smile spread across his face.  

At Meals on Wheels a couple days later, he wore that ring and showed it to everyone on our route.  

There it was on his finger while we ate our burgers later.  

And I was impressed with how the kindnesses shown to Aaron in these two experiences also show the caring hearts in so many people that cross our paths.  Kindness doesn’t have to come in the form of giving Aaron things, either.

Kindness is also shown by a smile.

Or by not staring at Aaron like he is some sort of oddity.

And certainly, by being willing to listen to Aaron if he happily corners you somewhere with talk of his latest game or book or movie or SKITTLES!!

Being kind to our special son is a huge gift to not only Aaron, but to those of us who love him so much as well.

All our special people will thrive under the sunlight of love and kindness that shines down on them from those we encounter every day.

I am very thankful for those that know this and practice it in our lives. 

Pass the Skittles, Aaron!

Good in My Nazareth?

Tis the season for the Christmas story to be at the forefront of people’s lives.  And in the forefront of that story is the little town of Nazareth.  Gabriel was sent there to tell Mary that she was the one whom God had called to bear and give birth to His Son, Jesus.  

Nazareth…a very small dusty town.  Pretty much a place one would pass by rather than linger there for any reason other than to perhaps get a drink of water.  Larger, more exciting towns were nearby.  

Years later, when Jesus was calling His disciples, Philip went to find Nathanael.  He told Nathanael that they had found the One foretold by Moses…Jesus, of Nazareth.

Nathanael’s response?

“Can any good thing come out of Nazareth?”

That seems to be the reputation of Nazareth in a nutshell.

But Mary lived there, and her betrothed, Joseph.  Two unknown people in an unknown town…a town nowhere mentioned in the Old Testament or early Jewish literature.  

But the angel said that Mary had found favor with God.

How?  How do you make a name for yourself in Nazareth, of all places?

But that’s just it.  Mary didn’t set about to be noticed by God.  She wasn’t trying to do great things.  She simply lived her life for the glory of God in every mundane daily task that was a natural part of living in Nazareth.

Less than an hour ago I stood by Aaron as he had his third seizure in four hours.  This one was very hard.  My heart hurts.

Afterward, I sat by our Christmas tree and pondered this life that God has given me.  In many ways, I can say that this is my Nazareth.

I have had a taste of the “other” side of life.  Awards, travel, lots of ministry, etc., etc.  

But as time has gone by, my world has narrowed a lot.  The life of a long-term caregiving parent is not exciting.  It is not a life that others point to as they wish they had MY life.  

And all of my fellow caregiving friends know “the look.”  It’s the look that crosses a person’s face when they ask what you do or if you can join in this or that, and you tell them your situation.  So often there is no real understanding.  Sympathy, perhaps.  Compassion, sometimes.

But it’s like they don’t know what to do with you.  

Kind of like being from Nazareth.

But God has a purpose for each of His children in His kingdom.  Even us Nazareth folk.

For God says that He works all things for good in the lives of His followers.  

I have good purpose, right here in my Nazareth.

For every piece of wet bedding washed, every meal cooked, every bathroom cleaned, every doctor appointment, favorite show watched and game played, every story listened to for the 500th time – is just what God has for me to do where He has put me.

He put Aaron with us.  I can look at my life with him as my ministry or as a misery.

Human nature makes us feel that we’re not really being of value unless our calendars are full of events and we are free to come and go as we choose our opportunities.  And this is wonderful for many people.

But for my other Nazareth people…whatever your Nazareth is…know that there ARE good things that come out of Nazareth.

Claim your purpose where God has placed you!

Be faithful there in the messy and the mundane.

In so doing, you are bringing delight to God…and there is no higher calling.

Even in Nazareth.

Do You Know Me?

One evening last week, Aaron had a money gift burning a hole in his pocket.  He knew exactly what he wanted, so off we went to Walmart to look at throw pillows.  He wanted one to rest his book on while reading at night.  Soon we were walking down the main aisle toward the check-out lanes, Aaron happily holding his very soft black pillow.  

Walking toward us was a cashier whose lane we have used several times when we have checked out.   While in her lane, Aaron, as usual, talks and talks to her while she scans our items.  He discusses with her what we have bought..what he likes that we have bought..does she like those too?…what he wanted but Mom wouldn’t let him get…would she want those?…why or why not?…and anything else that he can quickly grab out of thin air before it’s time for us to walk away.

Aaron spied her as she walked toward us.  She gave us a nice smile.  I said hello and smiled in return.  Then Aaron stopped beside her and stared.  She wasn’t quite sure what to do.

“Do you know me?” he asked her.  

“Well, I scan your items sometimes and I remember you,” she replied, relaxing some and smiling at Aaron.

“It’s almost my BIRTHDAY!!” he exclaimed.

She wished him a happy birthday as I took his arm to lead him on and thanked her.

Oh, Aaron.

So unabashedly himself.  

Of course she remembers you, I thought to myself.  LOTS of people remember you.

But then it hit me.  It’s one thing to remember Aaron.  It’s quite another thing to KNOW Aaron.

“Do you know me?” he asked.

Aaron wasn’t diagnosed with autism until he was 14 years old.  We remember many incidents during those years before his diagnosis.  We remember his behaviors and quirks increasing but everyone attributing it to his seizure meds or the effects of the seizures themselves.  It was an extremely stressful time.

His autism diagnosis answered so many questions for us.  Off we set on this journey of understanding autism as it related to Aaron.

More importantly, however, we began to really understand Aaron through the tangled web of autism.  

In other words, we were getting to know Aaron for the complex person that he is.  

To REALLY know him.

It’s fun to know the funny side of Aaron.

We smile at the quirky side of Aaron.

And to enjoy the things that Aaron enjoys.

All those traits, and many more, are easy to roll with and relish.

But…and there’s always a “but,” isn’t there?

But there is an equal part of Aaron that can be very stressful and upsetting.

Sometimes, the upsets are mild, like when he uses multiple utensils for every meal.  Or doesn’t even use all of them but he needs each of them for reasons that are very real to him.  

Or how he can’t have just one CD of a particular artist that he is listening to but must have all of them out of the cabinet at the same time, strewn around the van or hidden under his bed.

How his routine and schedule are so important to him, to the point that he has a very hard time yielding any of it to our schedule, or to understand interruptions.

How hard it is so many times to wait on us when we’re going somewhere.  His impatience turns to anger, which can spread quickly to us.  

And then he carries that anger on some days to his day group, where he takes it out on others and has a no good, very bad day.  Here he is on one such very bad day.

It’s heartbreaking to see his struggles.  

“Do you know me?” I imagine him saying to us or to those who work with him.

Knowing Aaron…really knowing Aaron…takes lots of time and experience.  Lots of hard knocks and long nights and balancing acts.

Many days it’s one step forward and two steps back.

“Do you know me?” he asks again.

Sometimes we answer yes through gritted teeth, through tears, or anger and harsh words.

And then guilt.

Guilt that even though we know Aaron, we don’t always remember how he will react to even the most mundane things…things like a facial expression, a tone of voice, or a hand movement that pushes him over the edge.

But there is another thing we know.  

We know that God designed Aaron to be truly unique.  

God gave Aaron to us to love and to care for.  

And God knows that we need His strength and wisdom every single day.

“Do you know me?” Aaron asks again.

“Yes, Aaron,” we reply.  “We know you, and we will always remember that we love you in all your variety.”

It’s Aaron

After being out of town for several days, Gary and I returned on Monday afternoon.  Aaron was happy, happy to have us home.  But by Tuesday morning he was wishing that we were gone again, and our friends were back at the house watching him.  Re-entry to real life is often difficult for Aaron.  

And he is not the only one who finds it difficult!

Aaron was belligerent on Tuesday when faced with the reality of returning to his day group.  He was very verbal and confrontational.  It’s the side of Aaron that tests my mettle to the core.

It’s hard not to respond in kind to him.  Sometimes I do say more than I want to say, sadly.  As we drove to his day group, I really laid into him.  Not in a damaging or harmful way, but in a truthful way about how his words hurt us and why.  There are concepts that he needs to hear about how to love us even when he is angry.  How to recognize and acknowledge all we do for him instead of thinking only of himself. 

The night before, I had watched a video with him about a triangle UFO.  It’s the last thing I wanted to do.   He had called us repeatedly while we were gone, talking about this UFO video he wanted me to watch with him.

“MOM!!” he exclaimed, “it’s a triangle UFO video that’s 44:42.  Would you watch 44:42?”

Those are the minutes and seconds that he memorizes on each YouTube video that he watches, by the way.

He was ecstatic that I agreed to look it up and then to actually sit through 44:42.

So, on that next morning full of anger, he was full of remorse as I spoke truthfully to him.  As we neared his day group, he spoke softly.

“I’m glad you looked up the triangle UFO video.”

I was quiet.

“I’m glad you looked it up,” he repeated several more times before getting out of the van.

It was Aaron’s way of trying to say he was sorry.

A few hours apart worked wonders for both of us.  He was very happy when I picked him up and I was responsive once more.  I took him to the lab for some bloodwork, where he had to be poked in each arm and he flinched…something he rarely does.  My heart went out to him.  He deals with so much, even more internally in that brain of his than outwardly sometimes.

The technician gave him the plastic tourniquet to keep.  He was delighted.  I watched him walk around WalMart later, both arms with band aids and the tourniquet dangling from his fingers as if it was a prized possession.

I thought of how those small gestures…those items insignificant to us…bring him such joy. 

And it hit me that there are countless times that the seemingly insignificant, daily actions of Aaron bring us such joy…of how much I need to focus on those moments rather than the outbursts that bring hurt.

It’s Aaron at Walmart trying to hide from me because he has BOTH crescent rolls and biscuits in his hand that he wants me to buy.

It’s Aaron sitting on the floor of the store, totally oblivious to anyone around him as he checks out the peanuts on the bottom shelf.

It’s Aaron hardly able to wait until he could show me how much his sunflowers had grown while we were gone.

It’s Aaron helping clean under the kitchen table after supper.

It’s Aaron telling me he took his snacks to the snack drawer before bed.

It’s Aaron thrilled to pieces that I let him buy TWO boxes of Texas Toast.

It’s Aaron loving to do science experiments.

It’s Aaron super excited about his new volcano lamp.

It’s Aaron overjoyed because he won this light-up bouncy ball in Bingo, which he took today to show all our Meals on Wheels clients.  

It’s Aaron sitting alone in the mulch, breaking pieces into a container the same way he has done since he was a little boy.  There goes my heart.

It’s Aaron’s unique sense of style, unaffected by current trends or other’s opinions.

It’s Aaron’s unique impact on my life that I want to treasure and relish each day, even despite the hard times.  

After The Storm

Two nights ago, I awoke to bright lightning flashing outside our window.  Then came the crashing thunder.  Two hours later, we had a repeat as another storm roared through.

A few hours later, the sun was shining as I looked out my favorite window.  The view was so beautiful.  The leaves on our huge oak tree looked crisp, the grass was so green, and the sky was beautiful with unthreatening clouds.

Even though the storms earlier were loud and a little scary, the benefits were well worth the dark experience of the night.  We need the rain.  And I was so blessed by the very pretty view that morning.

So often, the aftermath of a storm carries with it refreshment and joy.

The same is true in the life of a believer.

We don’t often understand this side of heaven just why we go through trials of life.  But what we do know and understand is this:

“…I am the Lord and there is no other, the One forming light and creating darkness, causing well-being and creating calamity; I am the Lord who does all these.”   (Isaiah 45:6-7)

These promises to Israel continue:

“For thus says the Lord, just as I brought all this great disaster on this people, so I am going to bring on them all the good that I am promising them.”   (Jeremiah 32:42)

The God of Old Testament Israel is our God today, and His character and purposes have not changed.  He has a reason for every circumstance and event in the life of those who know and follow Him.

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

There is so much work that God wants to do in us.  Even Jesus learned obedience through the things which He suffered.  (Hebrews 5:8).  How much more do I need to learn the same?

Let me close with sharing one recent experience.  We were having a particularly rough behavior evening with Aaron.  We couldn’t understand why.  Then after supper, while I was at the kitchen sink and Aaron was a few feet away, he suddenly went into a seizure.  These drop seizures are both terrifying and dangerous.  He falls like a tree and has been injured several times over the years…staples, stitches, a lost tooth, CAT scans to check for concussions, and so forth.

Because I was so near and heard the seizure start, I was able to turn to him and grab him as I yelled for Gary.  I lowered Aaron to the ground as he fell while Gary ran in and was able to help.

Later, feeling depleted and very emotional, I sat in a chair near Aaron as he slept and recovered.  And I prayed.  I was able to practice what God has taught me over the years.

“Let the peace of Christ rule in your hearts, to which indeed you were called in one body; and be thankful.”   (Colossians 3:15)

I was able to be thankful…thankful that I was near Aaron when the seizure started…that Gary was able to help…that Aaron was not injured…and that later he was his happy self again.

Honestly, I don’t say, “I’m so happy that Aaron has seizures!”

No.  But I can, because of what I know about God, be thankful for both the ways that God takes care of Aaron and for all that God has taught me over the years as I have learned to completely trust Him with this son whom we love so much.

It’s like looking out that window after the storm and seeing that the storm has brought to me another layer of growth and beauty despite the fear and struggles.

I pray the same for each of you today as you gaze out the windows of your life at the works that God has done because of, and after, the storms.  

Love, With a Little Sad

Recently, Aaron has been listening to the Phantom of the Opera movie soundtrack.  He has seen the movie and heard the music before, especially listening to the CD over and over.  But time has gone by, and Aaron doesn’t remember what the story is about.

During lunch a couple days ago, as he asked questions and I told him the story, I realized once again the sadness wrapped up in the Phantom’s life.  I couldn’t hide it from Aaron if I was going to tell the story correctly.

“You know, Aaron,” I finally said, “it’s really in many ways a sad story.”

Aaron thought for a minute.

“You have to see it as love,” he said.  “Love with a little bit of sad.”

His comment blew me away.  I was legitimately speechless.

I’ve thought a lot about what Aaron said.  I realize that he, in those few words, so perfectly described our life with him.

This life of parenting a special needs child is not a cake walk.  Yet we know that what God has allowed in our life is for a reason…and God’s reasons are always good.  Maybe His reasoning doesn’t make sense all the time, but God is good in all that He does and allows.

Gary and I have choices to make every day as we parent Aaron.  Yet no matter what moments we face each day, we love Aaron fiercely.

What is our focus?  Is it love, or is it sad?

We can’t ignore the sad.  That would be denial.

We’re sad when Aaron has seizures.

Sad when sometimes those seizures cause serious injuries.

Sad when his seizure meds make him so sleepy and tired.

Sad when he must be poked with needles so often.

We’re sad when his behaviors break his own heart.

Sad that he still refuses to travel to meet his new nephew.

But wait.  I need to remember what Aaron said.

Love, with a little bit of sad.

We want our life to be lived with a major on love and a minor on sad.

Like the love we felt for him last night as we stood outside watching the beautiful lightning to the west, hearing the distant thunder along with Aaron’s deep happy chuckle.  

Seeing the love he has for animals of all sorts.

The way he takes huge delight in the unusual.

We love the joy he shows in sharing.

And the big smile he gives when I pick him up from his day group.

I love how he looked on the exam table at his last doctor’s visit, reading his UFO book that he couldn’t wait to show his doctor.

I love how he leans way over to listen to the music that comes out of the self-checkout register at Dillon’s, oblivious to all the stares.

I love his random love notes. 

 

And that he’s willing to take an occasional picture with Mom.

I love looking out the window and seeing this scene.

I love that behind every hard, frustrating, stressful, and sad moment…I can hold on to this fact – that God has given us our special Aaron to love and care for.

We have to see it as love…love with a little bit of sad.