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!

This Gift Has My Name on It!

Gary and I were sitting beside our decorated tree one night before Christmas.  We were not alone for long, as is so often the case.  Aaron soon joined us.  He was, of course, drawn to the presents under the tree.  His observant eyes had seen his name on a gift!

“Look!!” he exclaimed, “this gift has my name on it!” 

His childish delight made us smile.

His childish delight is, in fact, a gift to us.

Yet there are other aspects of who Aaron is that we would not describe as a gift.  Maybe more as a burden?  An annoyance? 

We know that God gave us Aaron, and he is indeed the whole package.  It’s just that some of the contents of that package are not what we would have hand-picked. 

Am I being too blunt here?

This reality of God’s gifts to me carries over into every area of my life.  Gary and I had been married for five years before we had a baby…Aaron.  We prayed for a baby.  God gave us Aaron.

Do I really trust God in this answer to our prayers?

So many times in my life I have prayed over some matter…some decision…some issue.  But sometimes God’s answers are not what I would have chosen.

Oh, they may seem wonderful at the time but later the gift might turn sour. 

What happened?

How easy it is, then, to play the guessing game.

Maybe if we had moved there instead of here.

Maybe if we had joined that church instead of this church.

Maybe if we had raised our children in this way instead of that way.

Maybe…maybe…maybe.

Yet if I am walking with God in obedience, and I am praying for direction, I must trust that the way He leads is best and for a reason.

Good reasons, always.

But not always easy.

I must reach out and take God’s gifts to me with trust.

The children of Israel knew that God led them miraculously out of Egypt.  No one could doubt that.  But then it wasn’t long before they disobeyed God.  Even the manna God provided to them became a source of discontentment and complaint. 

Soon the Israelites were comparing their present lot with the life they used to have in Egypt, creating more unhappiness and grumbling.

I do that, too.  I pray…I take God’s gift of an answer…and then when things get hard, I fight the tendency to complain and to compare.

If only I had what they have…lived where they live…got to go where they go…blah, blah, blah.

Such a trap!

This morning, I read the answer to this dilemma in my life:

“Let all who seek You rejoice and be glad in You; and let those who love Your salvation say continually, ‘Let God by magnified.’  (Psalm 70:4)

I must keep my eyes on God in every area of my life. 

My gladness and contentment is in God alone, not in the events of my life – good or not so good.

So, when I reach out and take God’s gifts to me, may I not focus on the gift so much but instead may my eyes stay on the Giver of the gifts. 

That’s easy to do when the gift is fun and happy.

But I must understand that some gifts are not fun and happy.  Some are hard and sad. 

Yet on each gift, I see the tag.

To:  Patty

From:  God

Thank you, God, that every gift from You is good and perfect.  You didn’t say they were easy and fun. 

Help me to trust You.

“Look!  This gift has my name on it!!”

Our Thanksgiving

I don’t know if I’ll ever catch up with my blogging.  I’m so far behind that I haven’t even shared Aaron’s birthday pictures, and his birthday was nearly a month ago!  Oh well.  Life is busy and full, plus I just think I’m not as quick in many ways as I used to be. 

Enough of that!

I last wrote about Aaron’s increased seizures, and our son’s COVID diagnosis.  Thankfully, Aaron hasn’t had a single seizure that we’ve heard since that blog!

 Andrew has recovered from COVID and is exploring job opportunities since his racing furlough. 

Our trip to Texas for Thanksgiving went well.  Not perfectly smooth, but then is that ever the case?  God blessed us with safety and mostly good health and lots of sweet memories.  I’ll share those memories with pictures galore, so here we go!

Kyle and Andrea’s house was so warmly decorated for Christmas! 

Aaron did plenty of talking, as always!

And lots of laying on the floor petting these cuties.

Not the sock, Siggy!

He was pleased as punch to give Andrea the Thanksgiving picture he had colored for her.

And very surprised to receive a gift from Andrea’s boss at MD Anderson, who has taken a special and very kind interest in Aaron.

Our Thanksgiving Day was spent at the home of Kyle’s parents, Kent and Marie.  What a beautiful home and hospitality! 

Kyle loves goofy faces!

Aaron was nervous and sometimes grouchy in these new surroundings but soon he found his comfort zone – adorable Jax and Jill!

We are thankful for time together with family and friends.  Thankful, too, for all of God’s precious blessings, and for His comfort when we missed those not with us. 

May each of you be especially blessed as we remember God’s goodness, especially His great love that we next celebrate at Christmas.

Our Man Kid

A couple weeks ago I was talking to our daughter on the phone.  Almost always, when she and I are on the phone, Aaron will come bounding up to me and without lowering his voice he will ask if that’s Andrea.  I shake my head yes and so the hovering begins as he waits for HIS turn to talk to Andrea.  I finally let him have his time, knowing that if I don’t he will most likely linger close by until I do.

“ANDREA!!” he begins.  “Guess what game I’m playing now?!” 

And he’s off, talking about everything under the sun that has to do with his world.  He never asks about her life or how she’s doing.  Never.  But she understands that about her brother.  She laughs with him and talks to him about all his games and movies and answers his unusual questions about unusual things as seriously as if she’s talking to a lab manager about the proper way to conduct a molecular test. 

A couple weeks ago, she and I were talking about how Aaron is and how he must appear to others.  His conversations, his approach to life, his characteristics that others observe when they first see Aaron or if they know Aaron well…everything that makes Aaron who Aaron is.  Andrea said that he really is just a kid in a man’s body.

Then later that same evening, Aaron and I were talking to a neighbor and her young son out on our driveway.  This little boy just looked up at Aaron as Aaron went on and on about whatever.  Aaron was talking rather loudly, as usual, and all the time he talked he kept working his fingers together the way that he does. 

Finally, our young friend was able to get a word in…a question, actually.   

“Are you a man kid?” he asked Aaron.

That question went completely over Aaron’s head as he just barreled on with his topic of interest at that moment.

But it stopped me in my tracks. 

“What a perfect way to describe him!” I quietly told his mother. 

And how interesting that Andrea and I had said that same thing, yet not as precisely, just that afternoon.

A man kid. 

There stands Aaron, looking every bit like a man…and he is.  He has a man’s voice, a man’s physique, a man’s facial hair, and even a man’s balding head.  😊

But he acts so much like a kid!  And to other kids I know it’s a process to try to figure Aaron out.  We’re so used to him that we don’t often mentally step back and think of how it must be for children to understand Aaron.

Tomorrow is Aaron’s birthday.  Our son, who is a man, turns 36 tomorrow!

Our son, who is a kid, is exuberantly excited about his birthday.  He always is, every single year. 

If you ask him how old he will be, he pauses as he tries to remember his new age.  That number of “36” means nothing to him.

But oh, his birthday means everything to him.  Just ask our neighbors, some from around our circle that we don’t really know.  If Aaron is outside and he sees someone walking by, he briskly heads to the street.

“HEY!!” he yelled the other day to a couple of ladies.  “It’s almost my birthday!!”

They laughed and congratulated him as they went on their way.

And our man kid stood there rubbing his hands together in delight, with his deep chuckle bubbling up, his sweater flapping in the breeze, and joy all over his face.

Remembering that Aaron is a man kid helps us enjoy him.

But more importantly, it helps us understand him…and understanding Aaron is crucial in how we live with him and deal with him.

Happy Birthday, Aaron!! 

We love you, man kid!!

Aaron’s Talking Points #11

Here are more of Aaron’s sayings, collected over the years. Have fun reading!

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Aaron and I finished our Skip-Bo game. I reached out to get some cards that he was handing me.

Aaron: Your hands are skinny……

And all I heard was the word “skinny.” Something on me was identified as skinny??!!

Aaron (continuing): …..like an alien.

Hmmmmm.

I’ll take it!

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While talking about his group this morning, Aaron said, “Mom, a girl there likes me. I would put it as she doesn’t love me but she likes me.”

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Aaron drinks water or other beverages like he’s in a contest to see who can down his drink the fastest. He turns it up, chug-a-lugs, and down it goes. He even drinks his coffee that way, once it cools, which is a total travesty. We’re always telling him to slow down…savor each sip…taste each swallow.

Today I fixed him some hot tea that he wanted. He came downstairs later, cup empty, and gave me this report:

“Mom! I was not drinking all of it. I was just drinking PARTS of it!”

In other words, he SIPPED his tea! But as usual, his description is far more interesting than ours. 😁🥃☕🥛

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Oh, silly people who call this little round thing a coaster. Aaron told me the correct name last night.

This is a drink plate.

Got it?

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Aaron was telling me all about the chicken in the deli at Dillon’s.

“They have fried chicken. They have that chicken with no bones. And they have pop-tart chicken!”

Um, that would be popcorn chicken, Aaron. But with pop-tart chicken you could have breakfast and lunch in one!

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Aaron and I were talking about how some people do bad things, and that the color of a person’s skin doesn’t make them bad or not bad. He thought a minute and then said, “So not a person’s skin or their species makes them bad?”

Species? Let’s start over.

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Yesterday Aaron and I were listening to Zac Brown.

Zac Brown: …and if you say that I’m too late, I’ll curl up and die in misery.

Aaron laughed and laughed.

Me: Why are you laughing at that?

Aaron: He said he would curl up by Miss Ugly!!

I’m afraid I let this life lesson pass right by as we both dissolved in laughter. 🤪😂😂

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Aaron had a seizure last night. Just one, but is he ever wired this morning! He was out of bed very early and has talked pretty well nonstop. He considered playing a game on his computer, but I reminded him that this is not a good idea after having a seizure.

Me: Aaron, you know that playing a game might get your brain too riled up.

Aaron: So a game might make me wild up?

I didn’t tell Aaron, but I actually think it’s too late to stop that! 🤪♥️♥️

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In Wal-Mart today, Aaron’s eyes latched on to a display of colorful, adorable, stuffed pigs. He instantly latched on to the brightest one there. He had me when he said, “Can I own him?” 😃

Aaron may be our adult son, but sometimes he’s just still so cute and dear. ❤️

And he now owns a very bright pig!

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I was frustrated with Aaron today when I picked him up from his day group because he told me he had given some of his money away to a friend. We work and work to make him stop giving away his money, but still he sometimes does this.

So, I gave him the lecture.

Then I gave a big sigh.

Aaron: Mom, don’t fight and don’t breathe!

Well, I guess if I quit breathing then I would also quit fighting. 😜🤔

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Since Gary and I got home from Houston, and after all of Aaron’s weekend seizures, he’s been telling us that his legs are weak. Finally, yesterday, he got it figured out.

“Mom, I think those six seizures stiffed my legs!!”

I want to show I’m sorry about his legs, but it sure is hard not to laugh at his wonderful way with words.

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Aaron and I got home from eating lunch out (at last!!), and then running several errands. He was very compliant with staying near me while we were out, using hand sanitizer at the air base before we could enter, and only walking one way up and down the store aisles. 🙄

Soon after we were home, he wanted a piece of cake that we made the other day, so I told him to wash his hands. He finally showed his frustration.

“Is that a government law??” he asked with disdain.

I assured him it was Mom’s law and he REALLY better obey that one!! 😂😂

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Andrea got me some beautiful roses and there are some ferns mixed in. Aaron saw pieces of the ferns that had fallen on the table and asked what they were. “Mom, I thought your hair was shredding on the table.” I hope not. I have enough hair problems without adding shredded hair to the list!

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Aaron: “So are you getting something special since it’s your Mother’s Day?”

I walked over to him, put my arm around him and said, “Well, a hug is special.”

Aaron: “I was talking about food!!”

Ah, if Mom gets special food then Aaron might get special food. Smart boy!

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Gary took Aaron out today, and when they came home, in walked Aaron with his arms full of candy and cookies and a really fun card for me.

Aaron: Here, Mom! These are for you.

Me: Wow, Aaron! Thank you so much!!

Then I decided to tease him a little.

Me: So, do I have to share these with you?

Aaron: No. I don’t like any of them.

And off he walked.

Never underestimate Aaron’s honesty and clarity. 😀😀

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‘Til next time! And trust me, there WILL be a next time! 🙂

Such a Fun Fall Day!

Gary and I had such a fun day yesterday with Aaron! 

The day didn’t start out with great fun, however, as Aaron had a doctor appointment.  He doesn’t usually mind the actual appointment, but that little side trek to take blood wasn’t what I would call fun. 

I’m so thankful that Aaron handles blood draws with calmness, though.  What a blessing that has always been!

In the afternoon, Gary and I took Aaron down to Klausmeyer Farms.  The fall day was perfect for outdoor fun! 

There were plenty of photo opportunities.

And the corn maze! 

We let Aaron lead.  He at first was hesitant about that, but then totally enjoyed it.  He would laugh and laugh when he came to a dead end and had to turn around.

He loved petting the animals, of course. 

And we ended our time there with a visit to the pumpkin patch, where Aaron found a large pumpkin which he is all too eager to carve. 

A big meal at Texas Roadhouse was the perfect ending to our fun day with Aaron.  As we ate, Aaron talked about his happy day.

“The pumpkin patch enjoyed me!” he exclaimed loudly.

Gary and I smiled at his wording.

We enjoyed you, too, Aaron! 

THIS much!

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.

 

 

A Fun Fourth

Our Fourth of July was hot and sparkly, full of Aaron smiles and excitement, mixed in with too much quietness for my liking.  The quietness comes from not having our kids or extended family nearby.  I don’t even really like holidays for that reason, but I choose to count my blessings and enjoy our special Aaron times.

On Friday, Gary and I took Aaron out to eat at Cracker Barrel.  He loves that restaurant!  He left with a full stomach and a chocolate bar from the gift store, and ended up with a sack full of sparklers and other smoky, loud Fourth of July fun that we chose in the big tent a couple miles from home.

I’ll just leave you with pictures of our weekend, including a perfect front-row view of our town’s fireworks and the gorgeous full moon on Saturday night.   And lest I forget, we rescued a turtle that Gary found in our flower bed.  😊

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And my favorite picture of all says it all!

 

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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.