Category: Seizures

I Can’t Wait!

Waiting patiently for anything is not a strong suit of Aaron’s.  Whether he is waiting for me to get off the phone or waiting on a huge surprise, it doesn’t matter.  Patient waiting is a foreign concept to him.

This is why we often don’t tell Aaron of an upcoming event until shortly before it actually occurs.  Too bad he knows when his birthday is because he is in planning mode for months before the big day. 

Earlier this year, a big dinosaur exhibit was coming to town.  Gary and I decided to take Aaron and to make it a surprise, more for our sake than anything.  The big day came…tickets were bought…plans were in place…and finally I told Aaron that we were taking him on a surprise adventure. 

It wasn’t THAT long before we were leaving that I broke the exciting news to him, but oh my goodness!  I quickly realized that I should have waited until we were in the van and on our way before uttering a word about our surprise trip.

Aaron can hover better than any hummingbird or helicopter.  He hovered outside my door as I got ready.  He knocked and knocked on the door, asking if it was time to go yet.  He lingered outside the bathroom door as I dried my hair.  He stood right beside me as I brushed my teeth, asking questions and wanting me to answer even with a mouthful of toothpaste. 

“Aaron!!” I finally said, “quit being so impatient!!  Leave me alone and let me get ready.”

I enjoyed a few moments of blissful quiet…until he once again knocked loudly on my door.

“But MOM!!”  he exclaimed, “I don’t have anything to DO while I’m being impatient!!”

Let me say, I am so much like Aaron when God has me wait for something, especially something that I have prayed about for a long time.

Look at Isaac and Rebekah.  Isaac married Rebekah when he was 40 years old.  No children came, however, because Rebekah was barren.  In Genesis 25 we read that Isaac prayed on behalf of Rebekah and she conceived.

But guess how long it was before that happened?

20 years!

YEARS!!

Can you imagine the disappointment, over and over and over?

The sadness?

The comparing themselves to others who had HOW many children during the time that they waited…and waited…and waited on God to keep His promise.

As Dale Davis points out in God’s Rascal, The Jacob Narrative, Isaac’s non-chosen brother Ishmael had 12 sons.  What’s up with that?!

But Isaac didn’t just idly or impatiently wait.  We’re told that he prayed on behalf of his wife. 

The Hebrew term used there means that Isaac didn’t just pray FOR his wife.  It indicated that he prayed in front of her…in her presence.

I found Isaac’s action in prayer to not only be very encouraging but also very precious.  He led Rebekah and he joined her in her pain…in their pain…as they waited for God’s answer.

Sometimes things seem so hopeless.  We don’t see answers coming.  It’s so easy to lose heart, especially when we have prayed and prayed and prayed.

I love this verse.

Right now, Aaron is laying on our couch downstairs.  He had three seizures this morning.  He is almost 38 years old and has had seizures since he was 7 years old.

I look at him as he ages, and I see the effect of all these years of seizures…of the toll they have taken on his body and on his mental abilities. 

But I know that as much as I love Aaron, God loves him even more.  And God loves me. 

He loves us and He has a reason that I will probably never know on this earth for all that Aaron has suffered.

So, I cry out to God.

And I know that God’s inclination is to lean down and hear my cry. 

Isn’t that a precious picture?

He joins me in my pain and in my waiting.

Am I always patient as I wait on God?

No!

But unlike Aaron, there IS something I can do while I’m being impatient and that is to pray.

And to praise, as David continues in Psalm 40.  Sing a new song of praise, which will be a testimony to others.

After all, “How blessed is the man (or woman) who has made the Lord his trust.”  (Psalm 40:4)

Gotta run.  Aaron is awake now and is planning our evening already.  😊 

Secret Things

If there is ever a time that it’s OK to keep secrets from each other, it’s now, at Christmas.  We buy gifts and then try to find the best hiding places around the house so that little…or big…snoops don’t find them.  We rush to grab that delivered box off the porch before our husband or child grabs it first.  It’s fun and exciting and perfectly allowed.

Then we must wrap the gift when prying eyes won’t see what it is.  I used to love stacking our children’s wrapped gifts in their individual piles and having them put their own gifts under the tree.  There was lots of shaking and guessing going on while they worked.  It was so much fun!  I knew the answers to their many questions, but I kept it to myself as I watched them wonder what was in each box. 

Last year, as Gary and I sat by our tree, Aaron joined us.  It wasn’t long before he was on his knees in front of the tree, taking out boxes to see which ones were for him.  He went through that ageless process of trying to guess the content of the gifts that bore his name.  And I went through the same ageless process of telling him that he must wait for the answer.

You know, God has secrets, too.  I just read about that fact this morning.  Deuteronomy 29:29 says, “The secret things belong to the Lord our God…”

There are things that God keeps to Himself, things about my life and about His doings in my life.  I don’t always understand why God orders my life in the ways that He does.  I don’t always know what’s in each box that ends up on the front porch of my life.  

And perhaps more importantly, I don’t often understand the “why” of some of the gifts that God gives.  In fact, there are things that I wouldn’t even classify as a gift in many ways.  A gift should be fun and wanted and needed, right?

I think of Aaron, of what a gift it was when after five years of marriage God allowed me to finally be pregnant.  Of the immense joy I felt as I held my little baby son 37 years ago, feeling like the most blessed woman in the history of the world.  Of watching him grow, smart as a whip and cute as a button.  Then the sudden huge seizure when he was in the first grade, the years of medicines and tests and doctors and still seizures.  The unexplained behaviors that manifested more and more as he got older, that set him apart from his siblings and his peers.  The diagnosis of autism, the challenges of his anger and his very particular way of conducting his life.  The forever care that he needs and the way that this impacts Gary and me now in our older years.  The questions about his future, and ours.

But on the hard days, in the sadness of seizures and the frustrations of autism, I have a choice to make about this gift that God has given me.  I can question it, I can resent it, I can let it make me bitter.

Or I can look beyond the gift into the heart of the Giver and know that He only has my good…and Aaron’s good…in His loving heart.  God has some secrets that only He knows about concerning Aaron and his life, and therefore mine.  I don’t need to know God’s reasons before I exercise trust in Him.  I just need to know Him.  Period.

When I grasp that concept…and so often I don’t…then I can experience some other gifts that God has given me. 

Peace.

Joy.

Contentment.

Those attitudes, those gifts, come and go with me. 

“What IS this, God?” I can imagine me asking Him as I shake the box.

“Go ahead and open it,” He responds.

“But I didn’t ask for this,” I tell Him as I see what’s inside.

“No,” he lovingly says.  “But I know that you need this very thing.”

“Why?!” I ask through my tears.

“Oh,” he answers, “that is a secret for only Me to know right now.  Someday I will let you in on the secret, but not today.”

“But…” I so often begin.

And God answers:

“Every good thing given and every perfect gift is from above, coming down from the Father of lights, with whom there is no variation or shifting shadow.”  (James 1:17)

Like the old hymn writer said:

And we wonder why the test when we try to do our best, but we’ll understand it better by and by. 

By and by, when the morning comes,

When the saints of God are gathered home,

We’ll tell the story how we’ve overcome

For we’ll understand it better by and by.

My Body, My Choice…and Aaron

This past week, the Supreme Court voted not to block Texas’ heartbeat bill.  This, in effect, has made abortion in Texas illegal after the first heartbeat of the baby in the womb is heard…usually around the 6th week of pregnancy.

Against the backdrop of yelling protestors –

I was looking at my own backdrop at home, which consisted of all Aaron’s bedding after his seizures earlier Friday morning.

And dear Aaron recovering from those seizures as he slept on the couch.

My mother’s heart was drawn to Aaron in his struggles.

But my mother’s heart was also drawn to all the many babies who have not had the chance to live, no matter how difficult their lives may have been.

There is a choice that is seldom addressed when most people talk about “choice” as it is defined today.

It’s the choice that Joshua talked about when Israel was going into the land that God had given them.  He told Israel to choose that day whom they would serve – the one true God, or one of the false gods worshipped by the peoples in the land around them.

Either way, they would choose a deity to worship.  They would worship God, or they would worship a non-god…a pagan god. 

“Joshua calls Israel to ‘serve Yahweh’ (Joshua 24:14).  But if Israel will not serve Yahweh, they must at least serve some god(s).  He presses Israel to the wall; they must come down somewhere.  If not Yahweh, the real historical God, then they must choose either the ancestral Mesopotamian gods or the contemporary Amorite ones.  The conservatives who were fond of tradition, of what had stood the test of time, who yearned for the ‘faith of our fathers’, might vote for Mesopotamia.  The liberals with their yen for relevance, for being in step with the times, might prefer to identify (as an act of goodwill) with the current social milieu and enter into dialogue and worship with the Amorites.  But you must choose; if not Yahweh, then take your pick from ‘these dunghill deities’ (Matthew Henry).”   (Dale Ralph Davis)

Do you see the issue here? 

Do you see the issue for our culture today?

My choice!

My choice which god I will serve.

For in making the choice to reject Jehovah God, you ARE making a choice to serve whatever pagan god fits your lifestyle.

We all serve and worship someone or something.

My choice to worship God will then dictate my other choices in life.

My choices FOR life.

For no matter how many silly arguments are made condoning abortion, we all know that something inside that woman is alive and growing.

And if nothing else, modern technology has shown us that what is growing in her womb is a human baby with a functioning heart at only several weeks old. 

Psalm 139 tells us that God has woven that baby together in his mother’s womb.  She is fearfully – reverently – and wonderfully made by God Himself!

So how do I explain our Aaron, born with special needs? 

I can’t.

But I can explain that as for me and Gary, we have chosen to serve the Lord. 

With all my body and soul and heart, I have chosen to trust almighty God to make the right decisions for me and for my son.

My body is not mine.

My choice is not mine.

I belong to God and His choice is all that matters.

And because I know Him and trust Him, I know that our Aaron whom he created is made just the way that God allowed and designed.

I walk in peace.  I don’t need all the answers to do that.

I only need to choose…GOD!

Photo taken by Karlea Tanner

Tough Trust

Yesterday as I ate my lunch, I saw a picture on my computer that started my mind turning toward some issues that make me sad.  As I wrote in my last blog (Listening Carefully), I know better than to let my thoughts stay on certain matters that will pull me down.  I am consciously practicing, more and more, immediately turning my heart to God and affirming to Him…and to me…that I trust Him totally.

As I sat at my table, thinking on these things and praying, these words came to me.  I shared them right away on Facebook.

It was around 1:30, and soon I was to go pick Aaron up at his day group.  He had a seizure early that morning, around 4:30, but felt fine and so was able to go on and spend the day with his friends. 

When we got home, as we talked about many things…because with Aaron there are always many things that he wants to talk about…I mentioned to him that I saw his empty deodorant in his bathroom trash can. 

“Yes!” he said, “I put some on this one but not on this one!”

I turned to see him holding up one arm at a time as he showed me which arm pit had gotten deodorant and which one had not.  😊

I left him in his bathroom to remedy the arm pit situation.  I had just sat at my desk in my bedroom nearby when I heard the awful crash and the sounds of a big seizure. 

I yelled for Gary and ran in the bathroom to see Aaron laying in the tub.  He had fallen backward into the tub, taking with him the shower curtain and rod.  He was entangled in all that, plus in his shirt that he had been removing.  The first thing to do was to hold his head to keep him from continually banging it on the hard tub as he seized.  Gary had run upstairs, grabbing one of Aaron’s small pillows to put under Aaron’s head. 

These sudden and very dangerous seizures are just awful on many levels.  It’s a terrible feeling to hear that crash and then the seizure sounds…to run to him not knowing what you will find…to wonder how hard he hit his head or if there are other injuries.

We had untangled him from the shower curtain and from his twisted shirt that was all around both his arms and hands.  Gary put a sweater over him and then we just had to let him lay there in the tub until he was awake enough to be moved to his bed. 

I went back to my desk, still shaken, and cried.  I cried out of fear, yes, but mostly I cried because it makes me so incredibly sad to see my son go through all these physical hurts. 

But as I sat there, God softly spoke into my hurting heart…and He reminded me of those words that He had given me two hours earlier.  God gave me words I needed before I knew just how much I would soon need them.

Yes, my heart is so tender when I think of Aaron and all the years of his physical suffering.  But God really does take that mama hurt I feel and uses it to show me how to toughly trust in Him.

I have to be tough for Aaron, and really, I can only do that because of my trust in God.  Sometimes that sort of trust doesn’t come naturally.  It would be more natural for me to be mad at God for letting this happen to Aaron, over and over and over. 

But I know my heavenly Father, and I know that He has reasons far beyond what I will ever know on this earth for why He lets Aaron suffer. 

It’s a tough place for me to be and it calls for a tough trust.  If my life was only smooth and simple, no tough trust would be needed.  But then I would not know God as deeply.  I would not experience His peace and comfort.  My faith would stay simple and small. 

A verse also came to my mind as I sat there thinking of all these matters.  I want to leave that verse with you…that simple but profound word from God. 

There it is again…trust.  Even when it’s tough.

ESPECIALLY when it’s tough.

Just Being Here

I was having my quiet time this morning, and it was just that…nice and quiet.

I stepped out of the room for a few minutes and when I came back, this is what I saw.

“Aaron,” I asked, “what are you doing on the bed?”

“I’m just being right here,” he flatly answered.

I had to smile.  He certainly was just being right there.  He didn’t care one bit that he was messing up the bed that I try to keep all tidy and neat and unwrinkled.  He didn’t care one bit that he was interrupting my quiet time. 

Aaron is right here in our lives every day.  He is right here because God has placed him here. 

No matter where we go, with or without Aaron, he is right here in our lives and in our thoughts…in our planning…in our EVERYTHING.

Yesterday he was right here, in the Wal-Mart aisle as I turned the corner, happily oblivious to any thought that he was most unusual as he knelt on the floor to retrieve his favorite candy.

He was right here recently after a night of seizures, waiting for me to pray before he ate his fried eggs, and we watched an episode of The Waltons.

And more often than I enjoy, Aaron is also right here in his autistic frustrations that interrupt our life and often dictate our routines. 

Just like that crumpled bedding that once was smooth, Aaron can most definitely cause lots of wrinkles in what was at one point a smooth and happy day.

How I handle my emotions during those many moments is up to me, which is why I was SO excited to find this picture recently that I instantly knew MUST go above my quiet time desk.

Today I choose joy!

Not because I have some super perfect power to do so.

But because I know the One Who does have the power to give me joy.

Oh, trust me, I lose my temper and I get very frustrated and all the other “stuff” that comes with being human.

But Jesus is right beside me with His forgiveness and with His nudging toward joy.

How about you?  What is right here in your life that is hard?  Make a conscious effort to choose joy and just see what God will do for you.

“And do not be grieved, for the joy of the Lord is your strength.”

(Nehemiah 8:10)

A Setback…But God

Seizures have been a part of Aaron’s life…and ours…since he was in the first grade.  He had his first seizure at home on a Sunday afternoon, out of the blue and utterly terrifying.  God was so good to let me be standing right behind Aaron when it happened there in our military apartment in Germany.  I was able to catch him.  If not, he would have fallen onto the hard kitchen floor and received a serious hit to the back of his head.

His seizures have morphed over the years, as seizures do, seeming to eventually bypass all the medicines and treatments that can be provided.  The majority of his seizures occur in clusters during his sleep, most often at night.  These clusters carry their own dangers, one of which is SUDEP – Sudden Death by Epilepsy.  Those words from his epilepsy doctors over the years always send a chill down my spine.

Aaron has occasionally had drop seizures here and there.  A drop seizure happens when Aaron is fully awake.  They hit suddenly, with no warning to us.  Aaron will fall either forward or backward like a downed tree, not able to break his fall. 

A few years ago, he began having more and more of these drop seizures.  He sustained significant injuries.  Cuts, scrapes, bruising, stitches, a fractured tooth that had to be pulled, and very hard hits to his head. 

Finally, on March 9, 2019, Aaron had a drop seizure on our stairs.  He had walked up a couple steps, then fell backward, and hit his head on a metal file cabinet handle.  He ended up with 8 staples in his head.  It was awful!

When we got home from the emergency room and checked our mail, there was a letter from our insurance company approving Aaron for the new pharmaceutical CBD oil, Epidiolex.  We had experimented with over-the-counter oils from good sources but had no success.  His Epileptologist couldn’t provide any guidance for those OTC oils, legally.  As soon as the FDA approved Epidiolex, Dr. Lee put in our request for approval.  Now here it was, on the same day that Aaron had fallen…a visual and sad example of why we really wanted to try this new drug. 

Dr. Lee was able to oversee Epidiolex since it was FDA approved and obtained through a prescription.  Over the next few months, we adjusted Aaron’s dose and tweaked another medicine and waited to, hopefully, see positive results. 

And we did!  Aaron’s drop seizures totally stopped!  We were elated, and soon began to relax.  Our fear over those horrible and dangerous seizures slowly went away.

Until this past Thursday. 

Aaron and I delivered for Meals on Wheels in the morning.  We enjoyed lunch at a cute Mexican restaurant.  Then home, where Aaron took a nap…and had a seizure while he slept.  This is nothing uncommon.

Later, as I was getting supper on the table, Gary had just come into the kitchen.  He was standing right beside Aaron when suddenly Aaron lurched and went into a seizure.  But instead of Aaron falling into the table and a chair, and landing on the floor, Gary was able to catch him.  This was truly from God, that Gary was there beside Aaron instead of across the room.  We were so thankful!

We got Aaron safely on the floor.  Such disappointment filled us both! 

Almost two years since a drop seizure, and now this. 

We hurt so for Aaron.

And I felt that familiar fear.  It had come back. 

But I also felt something else.  I felt God’s peace pushing back on the fear.  I forced myself to focus on God…His love and His plan for Aaron, and for us.  That knowledge was the best push-back on the fear that threatened to fill me.

I also thought about Mary’s response to the angel when she learned of the very hard path that God had chosen for her…the path of unwed pregnancy in a time when she was no doubt shunned and gossiped about and disbelieved.

Mary said, “Behold, the bondslave of the Lord; may it be done to me according to your word.”  (Luke 1:38)

Total submission.

Like the writer of Hebrews said, “Now the God of peace…equip you in every good thing to do His will, working in us THAT WHICH IS PLEASING IN HIS SIGHT, through Jesus Christ, to Whom be the glory forever and ever, Amen.”  (Hebrews 13:20-21)

God has been working on me this past year about being willing to pray in submission…being willing to say, “God, whatever it takes…”

Just two days before this latest drop seizure, I had been reading about Mary and then this benediction in Hebrews. 

I don’t know what it is…what it will take…for me to please God. 

But I do know that I need to be willing to let God do in me…and in Aaron…that which is pleasing in HIS sight, even when it may not be pleasing in mine.

Even when it hurts, deeply.

“Submission is preferable to consolation, for consolation pleases us but submission pleases God.”  (Thomas Hog, 1692)

Who is it that I most want to please? 

It’s tough when my submission involves my child.  I love Aaron.  I love all our children. 

But a huge area of my close walk with God, which I truly desire, is to be able to submit “whatever it takes” concerning my children as well.

I humanly want the consolations of God…the closeness and assurance that I feel when He blesses me, and them, with wonderful things.

But true submission to God comes only when I am willing to relinquish all the warm fuzzies for the stark hardship that often comes when the deepest lessons…and blessings…are allowed to occur.

Allowed to occur because I am submitted to God. 

God won’t bully me into submission.  Submission happens when I open my hands and release my desires to Him, trusting Him to do what He knows is best.

Even drop seizures, if they do start again, are somehow being allowed by God in Aaron’s life and in ours. 

The sky just before Aaron’s seizure that evening was so beautiful.  I have only to look up and know that God is there for us. 

The heavens declare the glory of God…and I want to do the same, as well.

Set It Aside

One morning shortly before Christmas, Gary and I sat down to eat breakfast with Aaron.  We were enjoying our eggs, sausage, and biscuits while listening to Aaron talk…always Aaron is talking! 

Aaron pushed back his chair and got up to get something from the kitchen – probably more napkins or silverware since one napkin and one set of silverware is never adequate in Aaron’s book.  I looked up then to see that Aaron had put his biscuit off his plate.  He had set it aside in order to keep his plate from being crowded and to keep the food from touching. 

We just left it there, choosing not to make that action an issue on this pleasant morning.  Aaron has his particular ways.  And Gary and I have learned to choose our battles carefully because disrupting Aaron’s ways can leave a trail of anger and frustration for all of us…and many times, it’s just not worth it.

Such is our life with autism, this matter of what to set aside and what to put back on the plate.

I had a full plate of Aaron issues last week.  We had unaccounted money gone from Aaron’s wallet, which means he probably gave some away at his day group.  He knows better, but he has a very hard time resisting the urge to share his money with his friends.  Therefore, he has become quite adept at not telling the truth, which was another issue we had to handle with Aaron.

Aaron became so frustrated that on Wednesday, he erupted in anger and tears at his day group.  He called me on the phone several times…he threw his shoe and his glasses…he yelled…and all in all was just extremely unhappy. 

His coat also got torn on both sides.  Aaron said that was done in fun as he and another client chased each other.  Either way, Wednesday was a rough day in more ways than one.

On Friday night, shortly after midnight, Aaron had the first of four seizures…the last one being at 6:40 Saturday morning.  I was fixing his favorite salad that morning, hoping he could enjoy it for supper as I hauled his wet bedding down the stairs and then helped him get settled on the couch for more sleep…and hopefully no more seizures. 

Bless his heart.  He can’t help his behaviors any more than he can help his seizures.  Yet while his seizures touch my heart, sometimes his behaviors do quite the opposite.

I thought about his biscuit as I was processing all that happened last week.  What do I set aside, and what do I keep on my plate?

I need to set aside resentment and anger, which is not always easily done.  Living full time with Aaron can take a toll on me and on Gary.  But God has led us to this life, and we know that He will keep us where we need to be if we just focus our eyes on Him and not on our circumstances. 

I must set aside selfishness.  Mending Aaron’s coat…taking him to have his bent glasses adjusted…washing his bedding and clothes…listening to his explanations over and over and over…  All these are actions that take my time and energy.  As any caregiver knows…as any parent knows…selfishness and service do not mix.  One must go off the plate.

Fear is another thing that needs to go.  Aaron’s seizures make my heart leap with fright for an instant.  I don’t think one ever gets used to them.  His future, too, can cause my heart to fear.  But again, I know that this path we walk is not alone.  God is with us each step and He has not given us the spirit of fear, but of power and love and a sound mind. 

Now what do I keep on my plate?  I keep the reminder of God’s great faithfulness.  I keep His Word in my heart.  I am mindful of His grace for each day and each moment.

I keep humor nearby, always.  A cheerful heart is the best medicine, like God said, for me and for Aaron, even when Aaron gives me a blank look when I think I’m very funny.  😊 

 I also count my blessings!  My plate overflows with blessings if I but look around me.  For instance, on Saturday I was very thankful for the blessing of a washer and dryer instead of a bucket and a clothesline.  Thankful for a warm house, food to eat and to fix for Aaron, and thankful that Aaron could eat some bacon and eggs later that morning.   And Aaron, who loves using multiple napkins, decided that the grease on his fingers could not wait for his napkin.  His eyes shot over to me as he wondered if I saw what he just did. 

“I was wiping a grease of bacon on my pants,” he seriously informed me.”

There’s the humor!!  😊 

Thankfulness, too, for Aaron’s amazing way with words.  After all, that’s a big reason I started writing this blog and named it He Said WHAT?!

And there is yet another blessing!  All my readers mean more to me than I can express. 

See how it goes?  My plate is filling up with good stuff, none of which I want to set aside. 

Time to taste and see that the Lord is good!

When is the Time to Trust?

A couple mornings ago I felt compelled to open my very old copy of the classic devotional book, Streams in the Desert.  This book was a gift from my home church when I graduated from high school way back in 1973.  But even though my graduation date makes the book old…of which I am all too aware more and more each day…the actual writings of Mrs. Charles Cowman were first published in 1925.  Her writing style may be old school, but the deep truths contained therein are timeless.

I was touched deeply by what I read that morning about faith and trust.  I jotted a few notes, tucked the truths away in my mind, and was soon about my busy day.  Aaron was staying home that day and we had fun plans!

Our plans were to meet some friends at All Star Sports for a morning of games.  My friend Joyce and I had decided to get our two sons together.  It would be the first time that Johannes and Aaron would be with each other for an outing, and we both wondered how it would go.

How it went was great!  I mean, there wasn’t tons of interaction between them, but the ice was broken, and plans were made for more time together.  Sweet Johannes held his hand out and with a prompt from me, Aaron shook his hand without squeezing it too hard, and Joyce and I laughed and were happy.  The boys had a good time and that’s what mattered!

 

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Aaron and I then went to eat some lunch and to drop off donations at Goodwill before heading home.  Soon after we got home, Aaron took a nap.  I had the monitor nearby, listening as I always do when he sleeps.  I really didn’t expect to hear a seizure, so I was surprised when I suddenly heard that unmistakable sound coming across the table where I sat.

It was a hard seizure, lasting close to 3 minutes.  And exactly one hour later, to the minute, he had another one.  It wasn’t as long as the first one but was still 2 minutes long.  Thankfully, he was done then and had no more the rest of the day.

It’s so surprising, even now after all these years, how quickly Aaron can go from being out and about, happy and fine, to having a seizure.  I don’t try to figure them out like I used to do, but I still find myself wondering why.

Even the next day on the way home from his day group, his speech was somewhat slurred, and he was very tired.  He fell asleep on the way home instead of his usual non-stop talking.  Was it the residual effects of yesterday’s seizure, I wondered?  Is his sodium low again?  Will he have another seizure when he gets home and takes a nap?

 

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So, even though this is Aaron’s life and our life, it’s still disconcerting.  Worrying.  Unsettling.

My mind was drawn back to the devotional I read earlier that morning.  I went back to it and was, as I always am, so amazed at how God has for me just what I need when I most need it.

Mrs. Cowman’s words were based on the story of Paul’s shipwreck in Acts 27.  The south wind blew gently as the sailor’s pulled anchor.  Paul had warned them not to take this trip, but they didn’t listen.  And that south wind was such a hopeful sign to them that they were right, and Paul was wrong.

But soon a terrible storm hit.  For days the ship was violently tossed on the waves.  During that horrible storm, with no sun or stars for days…with everything thrown off the ship that could possibly be tossed overboard…verse 20 says that all hope of being saved was abandoned.

But an angel of God stood before Paul to assure him there would be no loss of life.  Paul stood bravely before those battered and terrified seasoned sailors, and confidently said, “So take heart, men, FOR I HAVE FAITH IN GOD!!”

I thought about our life with Aaron…the ups and downs in so many areas…and the fear concerning his seizures.  How that day had been so much fun and so without fear, and then out of the blue came two hard seizures.  It was easy for fear to replace our fun.

My need to trust God is always there, right at the surface, even underneath all the normal and the fun and the hopeful.

But ACTUALLY trusting God is a must when suddenly the normal and the fun and the hopeful is yanked away.

That level of trust is a conscious decision that I must make.

That level of trust isn’t based on circumstances or on feelings but is rooted in God Himself…in Who I know Him to be.

This year for all of us has seen the rug pulled out in so many areas of our lives.  Things were going along pretty well for most of us.  Then…BAM!!

COVID…jobs…riots…anger…fear…disagreement.

I want to leave you with the hope that God is not taken aback or surprised by any of this.  He has a purpose and a plan.

Can you say, with Paul, that you have faith in God?

I want to leave you with a wonderful poem shared by Mrs. Cowman that I read that morning.  I hope it will mean as much to you as it did…and does…to me.

 

When is the time to trust?

                        Is it when all is calm,

                        When waves the victor’s palm,

                        And life is one glad Psalm

                        Of joy and praise?

            Nay!  But the time to trust

                        Is when the waves beat high,

                        When storm clouds fill the sky,

                        And prayer is one long cry,

                                    O help and save!

 

            When is the time to trust?

                        Is it when friends are true?

                        Is it when comforts woo,

                        And in all we say and do

                        We meet but praise?

            Nay!  But the time to trust

                        Is when we stand alone,

                        And summer birds have flown,

                        And every prop is gone,

                                    All else but God.

 

            What is the time to trust?

                        Is it some future day,

                        When you have tried your way,

                        And learned to trust and pray

                                    By bitter woe?

            Nay!  But the time to trust

                        Is in this moment’s need,

                        Poor, broken, bruised reed!

                        Poor, troubled soul, make speed

                                    To trust thy God.

 

            What is the time to trust?

                        Is it when hopes beat high,

                        When sunshine gilds the sky,

                        And joy and ecstasy

                                    Fill all the heart?

            Nay!  But the time to trust

                        Is when our joy is fled,

                        When sorrow bows the head,

                        And all is cold and dead,

                                    All else but God.

 

 

Magical and Maddening

“Aaron, look!!” I exclaimed one recent night as I closed our family room blinds.  Aaron walked over to join me at the window.  There, emerging from the grass in our front yard, were dozens of fireflies.  Lightning bugs, we called them where I grew up in West Virginia.

Aaron thought they were very cool!  He insisted that Gary come to the window as well, and so we stood there together for a minute, enjoying the sparkling little bugs.

A few nights later, Gary and I sat on our front porch after the stifling heat of the day had subsided somewhat.  It’s nice for us to enjoy a few moments of quietness and of being together, just the two of us without Aaron’s loud interruptions.  As dusk fell and darkness was encroaching, up from the grass once again came those beautiful fireflies.

It was captivating watching their glow, so many of them combining into a magical light show right in front of us.  So peaceful.

Then…BAM!!

Out on the porch rushed Aaron, who is rarely quiet.  There went the peacefulness of our front porch evening!

“MOM!!  Are we watching a Little House tonight?” he asked, knowing the answer.

I assured him that we would watch an episode, as always.

But, as always, that wasn’t enough for Aaron.

“When?” he asked.  “Can we do it now?”

I knew what was ahead but wanting to remain in the magic of firefly glow I told Aaron that I would let him know when I was ready.  This answer never suits Aaron.

One of the very hardest things for Aaron to do is to wait…on anything.  He especially finds it nearly impossible to wait on me to watch a program with him when HE is ready.  He escalates quickly into anger at those times, no matter what I say or how well I prepare him for the inevitable wait.  That night was no exception.

Our evening was quickly reverting from magical to maddening.

Such is often the life of a caregiver.

My blogging friend, Cheryl, is the author of a caregiving blog written out of her experiences as she cares for her husband who has Parkinson’s.  Our situations are very different but also very similar.  I have loved her insights and her godly wisdom.

In one recent blog…linked here… (https://parkinsonscaregivernet.wordpress.com/2020/06/13/similar-yet-different-but-really-similar/) – she wrote:

“But we live for the moments of joy: seeing our loved one smile, hearing them recount experiences from the past, watching them respond to family and friends, hearing them tell a favorite joke. Those moments may be brief, so we hold them sacred in our hearts and bring them to mind when the times are difficult. Another is the joy of knowing we are doing our best, that we are doing the right thing, that we are doing God’s work here on earth by caring for our loved one. Let’s not forget that, especially when the moments are difficult or uncomfortable.”

The difficult moments with Aaron often involve his autistic behaviors…his demands that life revolves around HIS order and expectations of how things are to be.  During those times, no one else’s desires or needs are considered by Aaron to have importance.

Maddening.

On our firefly night, we told Aaron that he needed to wait.  We tried to get him to  enjoy the magical lights in our front yard but he was blinded by his own frustrations and cared nothing for the beauty around him.  Only one thing mattered.  And he wanted that one thing NOW.

Anger intruded into our evening and stood on our front porch, as opposite in its effect as could possibly be when compared to the earlier joy of time together with Gary among the little sparkles in our yard.

Later, the anger was gone as Aaron and I watched our show.  Aaron is usually oblivious to the effect he has on us during those times as he brushes off the recent outburst and is happy in his bubble again, where all is well.

Oh, that it was so easy for me to do the same!

Like Cheryl said, though, it’s important to hold the moments of joy sacred in our hearts and in our memories.  And to know that we, as caregivers, are doing God’s work here on earth.

My heart this morning was heavy as I helped Aaron during his second seizure…knew that I would have bedding to wash later…canceled my hair appointment…and tried to still my worried heart about other matters.

I had finished my normal Bible study and so I opened my Bible randomly to see where my eyes fell.  I love doing that!  It’s like opening a treasure box that I just unearthed, excited to see what’s inside!

And look what God gave me!!

“But ask the beasts, and they will teach you; the birds of the heavens, and they will tell you; or the bushes of the earth, and they will teach you; and the fish of the sea will declare to you.  Who among all these does not know that the hand of the Lord has done this?  In His hand is the life of every living thing and the breath of all mankind.”  (Job 12:7-10)

It’s all in God’s hands!

Aaron…me…Gary…others I love…our world…

All life and breath is in God’s hand.  All of creation declares that truth!

Now it’s up to me to trust our loving God and to rest in His hand.  And to…most importantly…trust Aaron into His hand and know that God put Aaron into our lives for a purpose I may never know on this earth.

But may I trust God’s knowing.  Trust and know just as much as the beasts and the birds and the bushes trust and know Who has done all this!!

Fireflies know, too, I am sure.

Maybe that’s why they shine their magical lights for all to see!

May I do likewise.

Photo by National Wildlife Photo Contest entrant Radim Schreiber.

 

Biscuits and Blessings

Aaron was very happy last Thursday when I asked him if he wanted to come with me to Aldi.  I needed a few things, which with Aaron involved would turn into more than just a few things.  Shopping, even for groceries, is Aaron’s second favorite thing to do.  First on the list, most definitely, is eating out.

But shopping ranks a close second.  Aaron sees a store as a huge area of nearly limitless possibilities.  When we enter, he is instantly on the prowl for his catch.  Will it be gum?  A canister of peanuts?  Pringles?  Croissants?  Thick grated cheese…not that thin stuff!!  Or will he find an unusual item that he holds up for me…and all within earshot…to see?  Like an artichoke or an eggplant or a star fruit!

Stores are just awesome!!

When we exited Aldi, Aaron had captured a large container of mixed nuts and THREE cans of biscuits!!

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The biscuit discussion ensued.  When would we eat them?  For which meal?  How many would we fix?  Would I eat any?  Would Dad eat any?  And even when the questions were answered, they must be asked again…and again…and again.

Expected with Aaron, but exhausting.

I told Aaron that we would eat some biscuits on the next day, Friday.  Then he plotted and planned at which meal we would eat them, and how many cans would we fix.

“Can we have TWO ?” he asked.

But I assured him that the three of us did not need more than 8 biscuits, so he resigned himself to that reality as Thursday ended and the promise of Biscuit Friday lay ahead.

Before he finally decided to stay IN bed and go to sleep, he had to verify it one more time.

“Mom? Did you say that tomorrow you’re only fixing ONE barrel of biscuits?”

How I love his phrasing of common names!  Only Aaron can make a can of biscuits take on a whole new meaning.

“Yes, Aaron,” I answered with a smile.  “We only need one barrel of biscuits.”

During that night, Aaron had two seizures while he slept.  But he really perked up when he got out of the bed later that morning.  In fact, he talked and talked and talked as he followed me around the house.  I was so saturated with his chatter and endless questions that I was in need of some relief.

I agreed when he asked if we could have some biscuits for lunch instead of waiting for supper.  He put three biscuits on his plate when they were ready.

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He was SO happy! Look at his face as we settled in to watch a Little House on The Prairie episode, and he had his plate full of biscuits.  Pure delight!

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Later, I was very thankful for that moment. Aaron had another seizure that evening around the time we would have been eating supper. After awhile, when he was alert, he didn’t feel like eating any more biscuits. His appetite is usually ruined right after seizures. It always makes me sad when his seizures mess up his happy moments. But it was like God gave me that sweet gift of watching the joy of Aaron and his barrel of biscuits earlier in the day, knowing that if we had waited until supper then he would have been sad about missing his biscuits…and so would I.

God’s gifts may seem small sometimes but they’re really not at all. They sure do fill my heart and make me happy. ❤️❤️

And God’s gifts are all around us, every day, if we take the time to look.

Who would have thought that our barrels of biscuits would turn into barrels of blessings?