Author: Patty hesaidwhatks

I'm Patty and I write about our adult son who has Epilepsy and Autism, who still lives with my husband and me, and who is a package full of many surprises and joys and challenges and TALK! Lots of talking, which creates laughter and some other reactions as well. I also write about how God shows Himself to me in everyday life.

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.

Cue The Music, Aaron…Or Not

Aaron and I were hurrying out the door a couple mornings ago so I could take him to Paradigm, his day group.  I kept feeling like we were forgetting something.  We were three miles from the house when I remembered what we forgot.

Aaron’s wallet!  

He absolutely loves his almost daily excursion to Quik Trip, where with his seven dollars he has his pick of foods…mostly of the junk variety.  Forgetting his wallet would not do!  I could have given Aaron some money, but all I had was a $20 bill, and believe me when I say that Aaron would have spent $19.99 on that junk variety food.

I reassured a panicked Aaron that we would go back to get the wallet as I headed for the next exit.  He was very relieved.

Immediately he reached over and turned off the music that was playing.  I knew why he did that, but just to test my theory…or more like a confirmed fact based on years of solid experience…I slyly reached down after a few seconds and turned on the music.

He didn’t miss a beat and neither did Whitney Houston as his arm shot out and pushed that off button once more.

“I’ll turn the music back on after we get my wallet,” he informed me, not knowing that I could have told him that about himself. 

This little episode is just one of the many ways that autism affects Aaron’s life.  He lives by a strict set of rules that sometimes only he understands but that we must obey if his life…and therefore, ours…is to be happy.

He does this same thing as we go to Meals on Wheels every Thursday.  He won’t play his music until we have picked up our food at the Senior Center and are actually beginning our route.

The wallet episode may have been a different situation, but the same rule applies.  Our diversion to go back home for his wallet had interrupted our trip to Paradigm.  This interruption was not a part of the actual drive.  Since his music is to be played on the actual drive, that music must not be played on the non-actual drive.

Are you following?

If you lived with Aaron, you better be!

It’s a matter of principle with Aaron.  

He follows this principle when we are watching a program.  Aaron will have his snack ready.  The bag or jar will be open.  The plate of food will be placed on his ottoman or his lap.  His napkins are nearby in their holder and his multiple pieces of silverware are ready to go.  His drink and straw are within easy reach.

But nothing is touched until the first scene of the show…and most critical, the opening credits…are completed and the real honest-to-goodness show has begun.

I have sat nervously by as his ice cream started melting before he will pick up his spoon and start to eat.

It does no good for me to try to make Aaron hurry up and eat, or turn his music back on, or change any other scenario of his life in which this principle applies.

Not even my deep sighing has any effect on Aaron.  He probably just thinks Mom is old and weird.

I love seeing these intricacies of the autistic mind that Aaron has.  Even when his internal rules drive us crazy, they are still very fascinating to observe.  And understanding those rules and allowing them when we can, makes Aaron’s life… and ours…much easier to navigate.

He not only follows the beat of a different drummer, but he also tells the drummer when he can beat his drum and when he can’t!  

Fearing God Openly

I remember years ago, when I was old enough to sit in church without being right beside my parents, that sometimes the temptation to misbehave was more than I could bear.  Maybe I was sitting with my sisters or with friends when a fit of laughter would overcome us, or we would pass those infamous notes back and forth between us.  Suddenly I would hear it…the sound of a man clearing his throat.  But this wasn’t just any man.  This was my dad, and that familiar clearing of his throat carried a clear message to me. 

He was telling me that I better turn from my wicked ways, so to speak, and straighten up and listen to the preacher!  If I didn’t, I knew that I would answer to Dad when we got home.  And that my accounting would not be pleasant was guaranteed!

Did I fear my dad?  You bet I did in that moment!  But it wasn’t a fear born of any hatred from…or for…my dad.  Instead, it was a fear that came from my dad’s love for me, and my deep love and respect for him.  He loved me enough to teach me to do right, even if it meant he had to discipline me when I disobeyed.  

I have been studying through the book of Ecclesiastes.  Solomon spent much time pondering life’s puzzling questions.  There was so much he didn’t understand about how the wicked seemed to prosper or how unfair life sometimes was. 

But there was a truth that Solomon held onto by conviction and strong faith.  He stated it in Ecclesiastes 8:12-13:

“Although a sinner does evil a hundred times and may lengthen his life, still I know that it will be well for those who fear God, who fear Him openly.  But it will not be well for the evil man and he will not lengthen his days like a shadow, because he does not fear God.”

What does it mean for me to fear God?  How does that look in my daily life?  

I love what William Barrick says:  “A true God-fearer lives with a full awareness of the omnipresence of the omniscient and omnipotent God.  He or she goes through life more conscious of what God thinks or knows, rather than of what people might think or know.”

We are bombarded today with what many people think or know…or think they know, as is often the case.  

Sometimes the pressure to conform to our culture is strong, and at other times it’s quietly insidious.  I know some wonderful people who are living lifestyles that are directly opposed to what God says.  It’s easy to condone them because I love them, or I am drawn in by their sincerity and kindness.  

But I, as a follower of Christ, must be conscious of what God thinks…of what He clearly says in scripture as to what is right or wrong.

Peer pressure is as sharp in my life today as it was when I was a teenager.  I don’t want to appear mean in any way.  And I shouldn’t be.  

But sometimes today we are told we are hateful if we don’t fully embrace lifestyles or actions that God clearly defines as sin.  Yet God says that those who do live in sin are living that way because they do not fear God.

I believe this is what it means to “fear God openly.”  It means to stand strong for truth…GOD’S truth…even if all around us are those who do otherwise.  We stand for God because we fear Him out of our love and respect for Him.

But more importantly, because of His great and eternal love for us who are His children.

Sometimes I think of God clearing His throat when I start misbehaving…when I stray into thoughts or activities that He knows are wrong.  I need to straighten up at His urging and turn from what He is telling me is wrong.  

God loves me even more than my dad did all those years ago.  

And that’s a lot!

My Occupied Heart

On a shelf in our family room is this picture taken in 1983 at Gary’s Flight School Graduation Banquet.  We were at Fort Rucker, Alabama, where Gary completed the Army’s helicopter training.  

Because of my dress, Aaron thinks this picture is from our wedding day.  He loves showing people this picture when they are at our house.

“This is my Mom and Dad getting married,” he begins.

“No, Aaron, this was not our wedding…” I try to interject.

“See?” Aaron interjects above my interjection.

“Mom was skinny,” he says too loudly.

The ensuing laughter only encourages him.

“She had long hair,” he continues.

My death stare matters nothing to him.

“And she was young,” he finishes with a flourish.

At this point Aaron is bent over, rubbing his hands together furiously…which indicates great excitement…and laughing as he relishes everyone’s reactions, especially mine.

It’s obvious that all these supposedly desirable traits are in the PAST tense, right?

You know, I have never let my age bother me much.  I am thankful to be healthy and able bodied.  I don’t have cataracts or glaucoma, and so far, I do have my original knees and hips…and most of my original teeth in one form or another.

But if I focus on what Aaron says about my former self, well, it can be downright depressing if I’m not careful.

Tomorrow I will celebrate another year of life.  And for some reason, this birthday has made me blink a few times.

Like…wait, what?!  I’m HOW old?

I’m not ashamed of my age, so I’ll just come out with it.

I am…ahem…about to turn 69 years old.  

You know what that means about next year.  

GULP!!!

Gary and I got a late start at marriage, an even later start at having children, and a very late start to have a grandchild.  That last one was out of our hands.  Somehow, it’s all made me feel like I’m not as…ahem…old as I really and truly am.

Yeah, I cover some of it with hair color but then there are the moments when I stand up and feel my hip give a twinge it didn’t used to give…that original hip.

Times I back into a chair and realize that’s exactly how my Grandma did it.

There’s the periodic catch in my back that makes me realize why some people walk bent over the shopping cart handle.

Why do I seem to need a little power nap more days than not?

And I am not even going to discuss the wrinkled neck!!

I’ve been studying through the book of Ecclesiastes, and I had to laugh at the verse I read just two days ago.  At the end of chapter 5, Solomon talks about how God desires that mankind enjoy God’s gifts, whether the person is poor or wealthy.  It’s foolish to moan over being poor or to hoard your wealth. 

Then comes this jewel in verse 20:

“For he will not often consider the years of his life, because God keeps him occupied with the gladness of his heart.”

God gave me my birthday verse!!

There is NO reason for me to be consumed with the wear and tear of my body parts, to worry about my not-as-sharp mind, and all the rest of it.

I am instead to live with a heart that is occupied with the joy promised to me by the giver of real joy…God Himself!

“You have put gladness in my heart, more than when their grain and new wine abound.  In peace I will both lie down and sleep, for You alone, O Lord, make me to dwell in safety.”   (Psalm 4:7-8)

What will occupy my heart in year 69?  

The choice is mine.

The ability is God’s.

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!

Mom’s Ways

Years ago, when we had a big family gathering in our West Virginia hometown, Mom had prepared a meal for us.  She decided to serve it buffet style.  The first person to go through the line was one of my nieces.  She scooped some rice onto her plate and then beside the rice she put the stew meat and gravy.  Back in the line, craning her neck to see, was our short little mother.  She saw my niece’s plate with the meat beside the rice.  Mom could not restrain herself.

“The meat goes ON the rice!” she exclaimed.

There was the typical eye rolling and many knowing smiles between us as Mom still felt that need to supervise this detail…a very important detail to her.  In my family, this comment and story has become one of our favorite sayings when we want something to be done a certain way.

The meat goes ON the rice!

Mom’s particular ways permeated our lives.  She was and still is the most energetic and organized woman I have ever known.  It wasn’t easy back in the 50’s to have four children in five years.  Then came Kathryn, our caboose, three years later.

Her ways of managing our home were as precise as she could make them during those very hectic years.  She had baskets of ironing for us to do with a piece of paper in each basket that held a name of one of us girls.  We had our chores to do and the day on which to do them.  She even taught us the best way to load dishes into the kitchen sink after dinner.  Wash the glasses first, then the silverware put just so along with the plates, and so forth.

She taught us how to fold laundry, including those dreaded fitted sheets.  Sorry, Mom, for the mess I still make with those sheets today.  Sometimes I feel like she’s craning her little neck from heaven, watching me struggle with that sheet and just shaking her head.

But over the years, with a family of my own, I do wonder how Mom did it all.  She made all our clothes, often late at night after we had gone to bed.  I still remember our kitchen table full of homemade rolls, cookies, pizza crusts, and so much more.  Our freezers were full of those goodies, ready to be used at a moment’s notice.  She canned and froze fruits and veggies from their garden.  All of this while working full time after we were all in school, eventually supervising the school lunch programs in thirteen West Virginia counties.

Mom’s ways of reaching beyond our home into the lives of others was amazing.  Our home was always open to our friends, to groups, and to pastors and missionaries.  In later years, she knit hundreds of Christmas stockings for so many people as well as her beautiful quilts.  She visited the sick, usually with flowers she had grown or food she had made.  

Mom’s ways of offering help to the struggling really spoke to me.  She didn’t judge those who had made mistakes in life but instead looked for ways she could help them and love them through their hard times.

But the most impacting of Mom’s ways, the one for which I am most thankful, is that every morning she made sure that we began the day in God’s word together as a family around our breakfast table.  Dad was already at work on those early mornings so she would lead us in reading Our Daily Bread and praying together.  

Throughout her life she consistently exhibited that the number one value in our lives was to live our lives for Christ and to trust Him in every situation.  We saw her follow her own advice without wavering as she cared for Dad until cancer took his life.  She continued her faithfulness even as Alzheimer’s took away her memory, her spunk, her humor and wit.  

Some of the last words she ever spoke was to softly sing:  

“Jesus, Jesus, Jesus;

Sweetest name I know.

Fills my every longing,

Keeps me singing as I go.”

So Mom, I not only honor you on this Mother’s Day but on every day as your ways continue to influence my own life…and hopefully the lives of our children. 

And for you, I will make sure that the meat goes ON the rice!

The Fringes

We have been in a period of stormy weather here in the central Plains.  Many of you know that I love taking sky pictures.  There is hardly any better time to take some amazing shots of God’s work in the skies than during the build-up or the after-effects of a good old Kansas storm.

The clouds build:

Then darken:

And after the drama of the storm, there were these stunning clouds.

As I looked at these skies recently, I was reminded of the undeniable power of God in the creation of such beauty.

 I remembered reading Job 26, how Job talked about God’s unmatchable power that we see, or sometimes can’t see, in our world around us.  

Read some of Job’s description:

“He stretches out the north over empty space and hangs the earth on nothing.  He wraps up the waters in His clouds, and the cloud does not burst under them.  He obscures the face of the full moon and spreads His cloud over it.  He has inscribed a circle on the surface of the waters at the boundary of light and darkness.  The pillars of heaven tremble and are amazed at His rebuke.  He quieted the sea with His power…by His breath the heavens are cleared…”    (Job 26:7-13)

Just stop and think of the astounding power of God that we see in the heavens and on this earth.  His design in creation and His ability to hold everything together, causing the world to operate as it should, is beyond comprehension.  

Listening to the deep thunder this past weekend during our storms made me feel very small.  Our windows even seemed to shake at the power of that rumble.  It reminded me of God’s strength.  So did our gorgeous clouds, so beautifully designed by God.

But listen to what else Job said in the last verse of that chapter.

            “Behold, these are the fringes of His ways…”

All these mighty acts of God that Job describes are then said to be the fringes of His ways.

Fringes…the outer edges, the outskirts.

Stop and think about that.  We see only a small part of God’s ways, of His power, and of His plan.  Yet that small part is so vast and complex!  Imagine what He is doing that we know nothing of!

Job continues:

“And how faint a word we hear of Him!  But His mighty thunder, who can understand?”

We only hear a small whisper of God’s ways in the thunder of His power!

Oh dear friend, if all that we see and hear of God are only the fringes of His ways, then imagine what He is doing in our lives that we cannot know or see.  

He is behind the scenes of those who know Him, working out His perfect will in our lives.  Sometimes we don’t feel that He is doing anything at all, or that our circumstances are too hard and so we doubt Him.  

Nothing can separate us from the love of God, and nothing can deter Him from working out His best plan for His children.  Amid our suffering…our questions…our fears…our pain…our tears – God is doing so much more than we know.  

Someday we will move from the fringes of His ways to seeing His final plan, and we will understand that all along this life, our great God was weaving a beautiful masterpiece full of His mighty grace.  

Automatic Uncle Aaron

I’m sitting here staring at this blank screen, wondering how I can convey Aaron’s adjustment or lack thereof to being Uncle Aaron.  I think the best way to do so is to share with you a statement he made not long ago.  Here is Uncle Aaron in true Aaron form, talking about his role as an uncle.

“Well, Andrea made me the uncle without asking.  Why did she automatically make me the uncle?!”

Shame on Andrea, right?  

Oh, Aaron.

I made a feeble attempt to explain this dynamic of becoming an uncle, but Uncle Aaron was already on to another topic, and I knew when it was time to just hush.

As I have said many times in the past and am sure I will continue to say many times in the future, Aaron’s main concern in life is Aaron.  His schedule, his routine, his comfort, his attention…these are a few of the things that matter most to him.  When the title “Uncle” is added to his name, that means there is another person in his world that made him an uncle…and that little person sometimes takes Aaron’s schedule, routine, comfort, and attention, and stands all of it on its head.  

Aaron’s world is jumbled during those times.  He is not the center of attention, the master of his world, the keeper of his schedule…and this disruption is HUGE to him.

You should hear him at the dinner table when Andrea, Kyle, and Ryker are at our house.  He literally will not quit talking, and when he is interrupted by us giving Ryker attention, he is perturbed.  Or when Aaron takes a bite and we can use those two seconds when he is not talking to jump in and quickly start another vein of conversation, Aaron huffs and puffs and chews extra fast so he can quickly start talking again.  

He cannot figure out why on earth we would interrupt his monologue about the core of the earth, the solar eclipse, the ancient cave bones that were unearthed, what causes earthquakes…and by the way, why didn’t the moon melt during the recent eclipse??

BUT…Aaron, despite all these interruptions into his ordered life, is surprising us with his efforts to assimilate Ryker into his life and to try to understand his new little nephew.

Ryker just stares at Aaron, waiting for eye contact and for a response.  He doesn’t get that from Aaron yet, of course.  Aaron has yet to talk to Ryker.  That concept is just too hard for Aaron.  So, Ryker observes his Uncle Aaron with great curiosity, even at only 15 months of age. 

What Aaron does love to do is to give Ryker things.  Here he is sharing his pecans with Ryker.

He was super excited for our sweet little neighbor to share her chalk with Ryker.

And for the first time in years, Aaron wanted to have an Easter basket and an egg hunt like Ryker.  A little jealousy there, I’m sure, but it was fun and had some sweet moments.

The good times and the progress we see is very encouraging to us.

They truly are more frequent than the other side that crops up when Aaron is feeling usurped and not loved as much as Ryker.

After all, Aaron may have automatically been made an uncle but knowing how to really BE an uncle is not automatic for Uncle Aaron at all!

We have certainly learned that fact over this past year.

And we have also learned to be thankful for every single bright spot that we see along this growing Uncle Aaron journey.