Month: February 2021

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.

Barren

It happened to me again two nights ago.  I was sinking into sleep when I think, honestly, that I snorted and woke myself up.  😊

But then I couldn’t get back to sleep.  Instead, I lay there thinking of a picture I had seen just before bed.  Happy news for someone else created in me a longing for some things I don’t have. 

These are the moments that Satan loves.  He uses the tender areas of my heart’s desires to create in me an unsettled feeling.  The dark of the night is his perfect setting to speak words of doubt and unhappiness into my head. 

I’m a captive audience at that point.  The choice is mine. 

Whose voice will I listen to? 

So, I prayed and I thought of scripture.  I eventually went to sleep.  But I awoke the next morning feeling the weight of my burdens still lingering on my shoulders.

This morning I continued in a new study I just began yesterday in the book of Luke.  Right away we meet the priest, Zacharias, and his wife Elizabeth.  They were both righteous in the sight of God and walked in blameless obedience to God. 

They were old.

They were faithful to God.

And Elizabeth was barren.

In their culture, having children was everything. 

They had nothing, in a sense.

I think of Elizabeth beyond the stories we always hear and the ending that we know well.

I think of her hearing with sadness of the pregnancy of yet another friend.  Of probably faking joy when deep inside she is grieving over what she doesn’t have.  Of perhaps not feeling included in the years of family gatherings, celebrations, large happy holidays…

Of laying awake at night, bombarded with these realities, alone and with a broken heart.

And though we know the end of the story, that God gave her a child, she did not know that this blessing would be in her future.

“…there are those who are true servants of the Lord and yet some trial, some disappointment, that may be life-long, hangs over their lives.  ‘Righteous before God’ yet ‘they had no child’.  A very huge fact and a very deep sadness are pressed together.”   (Dale Ralph Davis)

Do you have a barren place?  An unfulfilled desire that eats away at you in the dark stillness of the night?

I do.

We all do.

What ARE we to do?

We are to live faithfully, in daily obedience to God.

We are to “Commit our way to the Lord…”  (Psalm 37:5)  That means to roll our burdens on the Lord’s strong shoulders.  Literally, that’s what it means.

“…God does His most impressive works in a context of impossibility.”  (Davis)

No BUTS…unless we say, “BUT God!!”

Will God give me what I want? 

I have no idea.

The real question should be:  Will I allow God to put HIS wants into my heart?

Will I want to walk with God so closely that His desires become my focus?

“God tends to begin His finest works in the face of human hopelessness and human weakness.”  (Davis)

Walking faithfully with God doesn’t mean we’ll never have our barren places.

But may we, in the barren, bear the fruit that only God can produce in us, to His glory.

Lessons From the Carrot Patch

One of my faves from a few years back.

He Said What?!

Gary and I were doing lots of outdoor work one autumn weekend, partly because it was our neighborhood clean-up time and partly because the coming winter was urging us to ready our gardens before the cold weather hit. On Saturday I had been clipping and yanking out the dead growth in the flower beds. There was plenty to do and the piles were filling up our big outdoor trash can quickly. I had decided that if I had time I should visit the vegetable garden to see what I could pull up there. It was certainly time to be done with it, tidy it up for winter, and begin dreaming of a hopefully better vegetable season next year.

For several days I had been thinking about what I would try to clean up over the weekend and it hit me that I hadn’t even checked the status of our carrot…

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What’s Ahead?

Here in Kansas over the past ten days we have had some extreme winter weather, as have many of you around the nation.  We knew it was coming thanks to modern weather forecasting.  We were able to prepare as best we could for sub-zero temperatures and even worse wind chills and snow.  What a blessing it is to be able to look ahead and to be ready when the storm hits! 

Some of you know that I have been reading and studying through the book of Numbers.  This book isn’t exactly known for super passages full of encouragement, but I have discovered, with the help of Raymond Brown’s book The Message of Numbers, that there are indeed many blessings and promises in this often-neglected book.

I finished Numbers yesterday.  The last verse was amazing, and I wanted to share it with you today.

“These are the commandments and the ordinances which the Lord commanded to the sons of Israel through Moses in the plains of Moab by the Jordan opposite Jericho.”  (Numbers 36:13)

I believe I know what you’re thinking.  Nothing in that verse reaches out and grabs you, does it? 

But don’t be so quick to assume that this is just another dry verse from a rather dry book.

All throughout the book of Numbers, God had given His people commands to obey in order to survive the trip through the desert – but more importantly, in order to live victorious lives.  Their lives would only be successful if they obeyed God.  It was a lesson they learned over and over as they left Egypt and entered the desert. 

Obedience brought victory and blessing.

Disobedience brought defeat and curses.

Now at the end of this book, after taking care of matters concerning land distribution and inheritances, there stood the nation of Israel on the east side of Canaan. 

They stood in the plains of Moab, and what was ahead?

God had confirmed his commandments “…by the Jordan opposite Jericho.”

God had given them so many victories over their desert wanderings…so many lessons learned…so many providences. 

Then He confirmed all His final commands to His people whom he loved when there, just ahead, were two HUGE difficulties. 

The Jordan River, in flood stage and impassable.

Jericho, a well-fortified city that far outweighed any hope of defeat by a nation that had no real army.

God had given Israel the land upon which they now stood, but up ahead were seemingly impossible situations.

What was the key to victory? 

Obedience.  God’s presence was with them and His power was theirs if they but simply obeyed Him. 

The Jordan River parted.  Jericho fell.  The stories are so fascinating in the book of Joshua.  But the key, always, was for Israel to obey God.

“How could anybody possibly convey this huge contingent of nomadic people across that fast-flowing river, and how could an untrained army capture a well-fortified city like Jericho?  The secret was in total obedience.  Neither barrier was to be overcome by intellectual skills, geographical proficiency, crowd manipulation, army intelligence or military strategy.  Two doctrinal factors prompted their obedience:  God’s presence and God’s power.”  (Raymond Brown)

What is ahead of you today? 

Have you been walking in life, doing the best you can to obey God and live right?

But are you now looking ahead to a forecast that is anything but encouraging?

What huge thing in your life is looming ahead, causing you to lose sleep and to feel fear? 

Whether our issues are national in scope, or personal in nature, each of us has plenty to keep us anxiously glancing at what is ahead on our horizons.

Please know that God’s presence and His power are fully yours if you know Him, and if you are obeying Him step by step, day by day.

God has not brought you to an impassable river to watch you drown.

And He has not brought you to a strongly walled city to watch you die.

You may be standing near…or in…some very tough situations.  But like Israel as they stared at Jordan and Jericho, listen to what God says to you:

“Have I not commanded you?  Be strong and courageous!  Do not tremble or be dismayed, for the Lord your God is with you wherever you go.”  (Joshua 1:9) 

Look in God’s eyes as you listen to Him, not over His shoulder at your Jordan and Jericho that are looming large. 

Be strong in God’s strength and rest in His presence. 

Let God do the fighting and trust Him for the finish!   

Too Much Love!

I guess the best way I could describe Aaron and the subject of love is this: 

Aaron holds love at a distance, admiring the concept but not wanting or able to become too involved in the process.

Welcome to how autism colors every single aspect of Aaron’s life, and therefore ours as well…or anyone who is associated with Aaron.

Valentine’s Day has been on Aaron’s mind since soon after Christmas when all the red hearts and cute stuffed animals and boxes of candy appeared on store shelves.  Aaron flits from one shelf to the next, holding up items and laughing as he very loudly says, “MOM!!  Look at this!!  Can I have it??!!”

It’s all great fun as he zooms around finding lots of treasures.  This idea of love is safe as Aaron, ever hopeful about his quest for “things,” attempts to score a bag of candy or a cute trinket to tuck away in his room.

Aaron does love showing love, but on his terms.  Aaron’s terms are dictated by his inner workings and thoughts, deeply affected by the effects of autism. 

At our local Dillon’s just down the road, we have come to know Jody.  She is a joy with a warm and loving heart.  Jody has personal family connections to special needs.  She has come to know Aaron and loves to interact with him.  Jody knows that sometimes Aaron enjoys buying flowers there that he gives to certain people, often ones in his day group, Paradigm.

One recent day, when I was in Dillon’s without Aaron, Jody asked me if I thought that Aaron would like to give flowers to his friends at Paradigm for Valentine’s Day.  Dillon’s donates flowers to all sorts of local places like hospitals, nursing homes, etc. 

I thought that was a wonderful idea, so we made our plan.  Barb, Paradigm supervisor and second mom to Aaron (though she’s too young to be his mom!), gave me numbers, and Jody did the ordering, and Aaron and I did the picking up. 

Perfect, right?

Wrong.

Aaron and I were eating lunch after our Meals on Wheels delivery the day before the flower pick-up and delivery.  The day before the big Valentine party at Paradigm.

Aaron does not handle parties and celebrations well…at all. 

Aaron does not handle expectations well…at all.

“Mom?” he began as we ate our lunch, “you make me feel like you think I need to be in love with the clients.”

I knew we were in trouble with all this business of flowers and parties and LOVE.

I explained, much more than once, over the remainder of that day about the purpose of the flowers.  I knew I was fighting an uphill battle, though.

I especially knew this when yesterday morning, Valentine party and flower delivery day, Aaron stood by my desk early…eyes droopy with sleep…and spoke his first words of the morning:

“Mom, I feel embarrassed by this love thing.”

Sigh.

Over the course of the morning, I told him that I would take the flowers…that he didn’t need to go…that it was fine for him to stay home from all the party stress…and so forth and so on.

But no, Aaron felt compelled to go…to give this difficult day a try.

Later, as we picked up the big box of beautiful roses from the Dillon’s florist, one of the ladies there very happily looked at us and said:

“You’re delivering some LOVE!!!”

Bless her heart, she had no idea.  I don’t think she heard Aaron’s reply.

“No!!” he simply said.

But that simple reply told SO much!

I made it to Paradigm with grouchy overloaded Aaron.  He was showing anything but love, except to Barb when he gave her a gift he had made.  He managed a smile for a picture.

He fell on the floor when he backed up into a friend in a wheelchair (neither were hurt).  But that certainly didn’t help his love feelings.  The party atmosphere was loud and just too much for Aaron, but it always is, so we left and headed home…with Aaron feeling terrible about the fall and the unmet expectations.

The flowers were beautiful and made the clients, especially the girls, feel loved and happy.

Aaron enjoyed seeing a picture of his happy friends that Barb sent.  But again, seeing it from a distance was best for him.

Gary and I took Aaron to lunch at a small local Asian restaurant nearby.  This made Aaron happy.  He processed the morning as he talked about it with us. 

He also made us laugh and laugh at his reaction to only having ONE fork.  To Aaron, one eating utensil is never enough!  This is Aaron’s norm:

But he handled that one fork very well, which was an accomplishment worthy of note to me and Gary. 

Small victories are pretty big to us. 

Aaron’s happiness is big, too. 

A trip to Wal-Mart after lunch.  Some Red Hots and a new game for Valentine’s Day.  All these things made Aaron very content and happy.

We know to do life Aaron’s way when we can.  Beauty comes in all shapes and sizes. 

Seeing Aaron’s reaction to his one fork held a world of meaning to me and Gary. 

I’ll hold that in my heart on this Valentine’s weekend.

We love you, Aaron! 

Up close or from a distance, depending on Aaron – of course! 

HALT!!

Walking into Wal-Mart with Aaron is like opening a box of Cracker Jacks.  You never know what the surprise inside will be. 

I sure do have some Wal-Mart stories.  Like the Valentine nightie story.  Maybe I should share that one yet again since we’re in that time of the year.  And yes, Aaron has seen some sexy little lingerie hanging in our local Wal-Mart, but I gave him THE look and walked briskly away with him trailing behind before he could say more than:

“MOM!!  LOOK!!  BRAS!!”

I made a mad dash for the electronics section then since I knew Aaron would follow me there…because as much as he was fascinated with those BRAS, he does love those shelves full of games and movies. 

I almost always give Aaron a few instructions as we walk into Wal-Mart, especially if he wants to branch off on his own…heading to electronics, of course.  Or the snack aisle.

Aaron, don’t run.

Aaron, don’t make funny noises…and yes, that includes farting noises.

Aaron, don’t ask the Wal-Mart associate for help a dozen times.

Aaron, if you do ask the Wal-Mart associate for help, don’t begin by saying, “HEY!!!”

Aaron, not everyone wearing blue is a Wal-Mart associate.  Please don’t ask multiple random people for help.

There are a few other guidelines that I wish I had given Aaron in the past, but the past is in the past, right? 

Aaron, please don’t pull a box of cereal out of the lower row of that huge cereal display at the end of the aisle. 

Aaron, please don’t make the fox whistle, especially when there are multiple couples nearby…including men with big muscles, you know.

Aaron, please don’t keep flashing the peace sign at every security camera you see.

And this one especially:

Aaron, please don’t sing the last line of the last song you heard in the van.   Repeating “Man!!  I feel like a woman!!” over and over was a bit much for me. 

This past Friday, Aaron and I made our weekly Wal-Mart excursion and of course Aaron wanted to venture off in his own direction.  Soon, I saw him up ahead in the snack aisle.  He saw me coming and immediately he did this:

He just held his arm out there for the world to see…and they did. 

He did NOT want to be interrupted in his private quest for the best and the most snacks he could round up without Mom’s interference and unwanted input. 

Oh Aaron, you do make me laugh!

And at least you weren’t singing or whistling!!

Is God Gone?

The heaviness in my soul these past few weeks has been palpable.  As a Christian it’s been very difficult to see Biblical principles pushed aside in our country while rank sin is legislated with the stroke of a powerful pen.  Then if we don’t jump on board with this agenda, we are haters and racists and out of touch.  The changes just in two weeks are almost too much to comprehend. 

As I continue reading through the book of Numbers, I came to chapter 20.  Moses, Aaron, and Eleazar climbed Mount Hor while the children of Israel, full of foreboding, waited down below.  On the mountain, Aaron’s priestly garments were removed and given to his son, Eleazar.  Then Aaron died there on the mountain. 

The people’s priest was gone.  Yet God had provided His man, Eleazar, to continue His work.  God’s pledge to stay with His people and to accomplish His plan was being perpetuated. 

God did not forget His promise.  His sovereign purpose for His people would be carried out, even though Aaron had now died.

This simple phrase written by Raymond Brown jumped off the page to me in the early morning as I read this story in Numbers: 

“ONLY AARON HAD LEFT THEM, NOT GOD.”

What an amazingly simple yet profound comfort this truth has been to me during these sad and hard days.  We feel bereft and abandoned, scared of what the future holds for us as believers in this culture, and angry at the sin that we see being promoted by our leaders. 

There were many true followers of Christ in the past administration.  Open Bibles were commonly seen on their desks.  Prayer, hymn singing, and Bible studies were routine in the White House.  Now that is all gone, and our spirits are stirred within us at the open endorsement of sin that we are witnessing every day…some of which we will be paying for with our tax dollars.  Open sin instead of open Bibles.

BUT…God is NOT gone.  God is still accomplishing His perfect plan.  He is with His people, each of us, as we wake up each day and seek to live godly lives in a most ungodly culture. 

Let’s take each day and each moment with that thought in our minds and hearts.  God is not gone!  He is here with His people just like always, in our homes and our work and with His Church. 

God is not gone!  He is with us in our disappointments and our pain, our sickness and our fear, our good news and our bad news.

God continues His work, no matter our circumstances. 

So let’s be encouraged to be about His work…to be strong and courageous…to be voices of love and conviction…to share the gospel…and to be bright lights in this dark world.

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!