Our Utopia

One recent night, after Aaron and I had watched an episode of The Waltons, I had a brilliant idea.  Now you must understand that after the program we are watching is over, Aaron wants the television off.  No watching ANYTHING else when our show is over.

Don’t ask me why.  Don’t ask me to explain many of Aaron’s quirks.  He has his own rules in his own way, and he expects us to abide by those rules.  If we don’t…well, it’s not utopia around here.

Back to my brilliant idea.  During our last visit to see our daughter and son-in-law, Andrea had shared a fun song with us.  She played it on YouTube, on their big screen TV, and I LOVED it.  The song is Sea Shanty Medley by Home Free. 

Fast forward to our house on this particular night as Aaron and I finished watching The Waltons.  I wisely decided that while Aaron cleaned up the multiple snacks he carries to the family room to tide him over during our show, and while I finished my before-bed chores, that I would turn to YouTube on our new big television and listen to Sea Shanty Medley.

So, I did just that. 

And Aaron became unglued. 

Watching something…ANYTHING…after our show is not allowed. 

“MOM!!!  Turn that OFF!!” he exclaimed.

And I…being the kind mother that I am…turned the volume up a tad.

Aaron also turned his volume up more than a tad.

So I…remember my kindness…played the song a second time.

Let’s just say that it was quite a relief when Aaron finally fell asleep later.

The next night, after watching the next Waltons episode, Aaron’s head jerked around to me as soon as the last Walton’s goodnight and musical note was over.  He was checking to see if I clicked on YouTube again.

“MOM!!” he loudly said, “don’t listen to that UTOPIA music like you did last night!!”

Oh my goodness, how he can make me want to laugh in the middle of my frustration!

I wanted to correct him.

“It’s YouTube, Aaron, NOT utopia!!  Believe me, this is not utopia around here!”

But I didn’t. 

However, his comment has made me think a lot about our version of utopia.

Utopia – defined as a place of ideal perfection especially in laws, government, and social conditions.

Aaron’s version of utopia centers around his desire to have his life ordered in those rather eccentric ways that matter to him.  We do it this way every time, people!  If we cooperate, then his life is a place of ideal perfection.  Never mind that ours is not.

But life doesn’t work that way and therefore Aaron’s utopia gets all jumbled up…as does ours.

Yet even more important is our attitude concerning this utopia idea.  Gary and I do get tired of Aaron’s ups and downs…of how verbal he can be when he is angry…of how tiring it can be to try to meet his utopia demands while keeping our own in mind. 

One evening, Gary and I were particularly spent.  We snuck out to our front porch and sat in our rocking chairs, breathing at last without Aaron’s interruptions.

But then this happened.

It was another moment when our attitude was tested.  And we have learned that it’s best to adapt to each of these moments with as much kindness and laughter as we possibly can.  Easier said than done some days.

Back to our utopia.  We have changed our own personal definition of utopia as we have parented Aaron over the years.  Our satisfaction and joy must be centered in trusting God.  In knowing that where He has placed us is where He will give us what we need. 

Let me share with you some beautiful pictures of our utopia.

The pure delight of bubbles:

The sweetness of sharing a beetle with Mollie next door:

The delight he finds in animals:

The fun he creates out of the mundane:

The happiness found in a simple game:

The rapture of all that cheese on his pizza:

Our attitude is of utmost importance.  Our attitude determines our joy.  We can always be looking at that other definition of utopia…an imaginary and remote place of perfection.

Or we can resolve to look at our utopia in the face of our special son.

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.

Listen Carefully

I was on our patio the other morning, enjoying the cool air and stillness before I had to start another busy day.  It’s nice to see and to hear squirrels rustling through the branches of nearby trees, or to hear the sweet chirps of our many cardinals, or the whir of a hummingbird’s wings.

But soon, way up in the top of our huge oak tree, came the loud squawking of a Blue Jay. 

His voice soon overtook all the others.  I had to make myself listen carefully in order to hear the quieter, more pleasant birds that were still there but were being drowned out by the shrill voice of that Blue Jay. 

What a picture of my life lately!  Satan knows exactly when to yell in my ear, reminding me more of what I don’t have than what I do have.  He knows when I am vulnerable…when I am more susceptible to letting him drown out God’s voice.

It’s easy to cave and listen only to his discouraging yells…to let him make me question God’s past leading in our lives.

“Are you sure it was God’s will for you to move here?”

“Too bad you can’t re-do some of your parenting.”

“Look at what they have that you don’t have.”

“Well, that hasn’t turned out like you thought it would.”

I’ve had to make myself stop hearing that very loud voice and instead focus on God’s quieter voice, just like Elijah did.  Elijah, in I Kings 19, was just coming off the high of tremendous victory.  He ended up physically and emotionally drained…vulnerable to Satan’s attacks of discouragement and depression. 

He ended up in a cave, where God told him to stand on a nearby mountain.  “And behold, the Lord was passing by!”

First there was a strong wind, but the Lord was not in the wind. 

Then an earthquake, but the Lord was not in the earthquake.

A fire was next, but still the Lord was not in the fire.

Finally, there was the sound of a gentle blowing…a low whisper. 

And God spoke to Elijah in that soft whisper of a faint breeze. 

Over the past couple weeks, I have had to make myself NOT listen to the loud voices of doubt and questioning.  I have had to discipline my thoughts to remember the past leading of God.

I was trusting God in the past, and He led me…He led us…to where we are.  Why doubt Him now?

Did I trust Him then?  Then how can I doubt Him now?

It’s a conscious choice I must make.  Do I let the loud voice of doubt crowd out the small yet firm voice of God?

At the end of the day, may I choose to listen carefully to the right voice in my heart and not the loudest.

         “My sheep hear My voice…”

Messy Grace

Last Friday when I went into Aaron’s room to wake him up and get him going for the day, I knew that something was off.  Sure enough, Aaron’s bed was soaked.  He had a seizure the day before, but I hadn’t heard one that previous night, so maybe he just drank too much water before bed.  Thoughts of that continuing issue with the amount of water he drinks made me a little irritated.

So did the fact that because of so many other things going on…and now tons of laundry to do…I had to cancel lunch plans with a friend I hadn’t seen in forever.  This was our second time to cancel.  GRRRR!

But I’ve learned to look at the positives at times like that.  I have a washer and dryer, and they work.  I have the time and freedom to change my day around.  And now Aaron’s bedding would be totally clean and fresh.  Every single bit of it…from the mattress pad up!  Oh, and I am ALWAYS very thankful for a super heavy duty and trustworthy waterproof mattress pad!  Am I ever!

The rest of our day went as planned.  I picked Aaron up from his day group, we went to Wal-Mart, got subs for supper, watched a qualifying run of NHRA racing, and had a nice time with all of it.

Later, not long before I was going to get Aaron from his room so we could watch a Walton’s episode, I heard a thump.  I was sure it was from his room.  I heard him walking so I knew it wasn’t him.  Soon he was in the family room, looking at me with some hesitation on his face.

“Mom?” he asked in a measured tone.  “Can you come to my room?  I need to show you something.”

I was comfortable on the couch.  It was nearing 8:30. I was winding down physically and mentally.  I was in no mood to go to his room and probably look at something on his computer that he just HAD to show me.

“Aaron, I don’t want to go up to your room right now.  Let’s just watch The Waltons,” I countered.

“No, Mom!” he insisted, “I need you to come up to my room now!”

Then I remembered the thump.

“Aaron,” I began with more calm than I felt.  “Did you break something?”

“Yes!!” he answered.  “It was my lava lamp!”

Now, you must understand that this was not just any lava lamp.  This was a GLITTER lava lamp. 

I was such a good mom at that moment.

“OH AARON!!!  YOU DIDN’T!!!!” I not-so-calmly replied.

I did not want to walk up those stairs.

I did not want to walk in his room.

I did not want to see what I soon saw.

There, on the floor beside his bed and under his bed was thick blue oozing goo. 

And not just any goo.

It was thick blue oozing GLITTERY goo!!

Let me tell you, I groaned and I huffed and I puffed and I complained the whole entire time I was cleaning up that awful mess. 

Poor Aaron wanted to help but there wasn’t much he could do.  I knew that there wasn’t room for both me and Gary to be in there working so I didn’t even tell him what was going on.  I just continued to bluster and blow as I sopped up the thick mess with a couple of old beach towels.  I even told Aaron to just throw them away.  I didn’t want eternal glitter in my washing machine!!

My washing machine, which had been running a good part of the day already as I cleaned up Aaron’s OTHER big mess!!

Oh, how my mind was working!  Poor me!!  My life is all about overseeing and cleaning up one thing after another!  Boo-hoo-hoo!! 

But I looked up from where I was kneeling on the floor trying to shine a flashlight under the bed so I could see sparkly goopy glitter hiding out…and there was Aaron sitting cross legged on the bed, telling me over and over that he was sorry.

Wanting more than anything to DO anything to help me.

My heart kinda broke for him and I felt such empathy for him.

That’s grace…not the kind that I can create, but the kind that God puts in my heart for this special son who can surely push my buttons but pull my heart strings at the same time. 

Later, after all the clean up and after the Walton’s was watched…as we got Aaron’s bedtime routine completed…a storm rolled in.  If there is one thing that Aaron absolutely loves, it’s a storm.

“Mom!!  Do you think I should keep my blinds open?”

I told him yes and to enjoy the lightning.  I was going to bed, finally, and that is all I wanted to do. 

But that’s not all that Aaron wanted me to do.

“MOM!  Come look at the lightning!  It’s BRIGHT!!”

Soooo, I stifled my huge sigh and walked once more into the room that twice already that day held so much frustration for me.

I stood at Aaron’s windows for a minute and soon there it was…FLASH!!  Bright lightning, followed by Aaron exclaiming, “Did you see that, Mom??!!”

I sat on the end of Aaron’s bed and immediately he threw back his covers.  In another flash, he was right beside me, and there we sat watching the impressive light show, brought to us by God.

And I was ever so thankful for God’s grace in that moment.  Grace from Him to me and Aaron in the form of such bright beauty out that window.

Grace to have my tired mind and body refreshed as I sat there enjoying all the sights and sounds of a good Kansas thunderstorm.

Grace to forget the messy day and to focus on happy Aaron.

Messy grace.

God extends that kind of grace to me every single day.

How can I not also extend it to Aaron in the midst of dirty bedding and glittery lava lamp mess?

Thank you for Your grace in all my messy places, God. 

And thank You for giving me the grace to show Your grace to Aaron.

However, I do not believe I will be buying another glitter lava lamp. 😁😁

Damaged

During our trip to the Houston area last month, we noticed that the palm trees looked different.  One normally expects palm trees to resemble these:

But instead, this is what we saw.

I stood there staring as I snapped this picture.  The trees looked both silly and sad.

“Bless your hearts,” I wanted to say.  I am from the south, you know.

Andrea explained what had happened.  The prolonged deep freeze this past February had taken quite a toll on the palm trees.  Many were irreparably damaged…dead.

I have read a little about the palm trees and found out that one way you can tell if a palm is dead is to scratch a section of bark off the tree.  If there is green underneath, then the palm is alive.

These sad looking palms we saw were, despite their damage, alive.  We could tell by the growth on top, odd as they might have looked.

This past Sunday at church we were privileged to listen to a live interview between our pastor and a prominent businessman from our city.  Britt Fulmer discussed his cancer journey.  Unless God works a miracle, there is nothing humanly possible that can be done for him.  Again, barring a miracle, heaven might soon be a reality for Britt.

Yet I walked away from that service full of hope and praise.  That is because Britt was full of hope and praise.  He conveyed, through his rather frail voice, the strength OF God because of his total trust IN God.  There was no anger, no regret, and definitely no fear as he confidently gave testimony of his total trust in God’s plan for him in this trial.  In fact, Britt has grown during his hard bout with cancer.

I think of so many I know who are battered from life’s prolonged adversities.  One can look at them and see the damage in various ways in their lives.  It reminds me of those palm trees.

But you know what?  Those palm trees are still standing, despite showing the stress of the freeze they endured. 

And they’re growing!  If we scraped off a section of their bark, we would see green underneath.  

Life is there!

Roots run deep!

James talked to believers about trials.

“Consider it all joy, my brethren, when you encounter various trials; knowing that the testing of your faith produces endurance.  And let endurance have its perfect result, so that you may be perfect and complete, lacking in nothing.”  (James 1: 2-4)

That word “consider” means to make a judgment.  We have a choice to make when we encounter various…multi-colored…trials in this life.  Are we going to allow God to work in our lives the endurance that He desires?  That endurance is the act of abiding under the difficulties. 

Will we abide under the prolonged pain in our lives, whatever it may be?  Because if we choose to do that…to abide under the suffering…we are really abiding under the shadow of the Almighty Who has our best interests and His glory in mind. 

To abide means to endure without yielding. 

So, to endure means to abide…and abide means to endure.

It means I stay put in the place God has put me, even if He has put me under suffering. 

I don’t yield to unbelief.  I don’t give in to giving up on God. 

Instead, I allow endurance under the hardships to produce in me a maturity and growth that is evident to everyone around me.  But I can’t produce that growth myself.  Only God can grow me in that way as I abide in Him, fully trusting His plan for me.

Suffering hurts, no doubt about it.  Long-term suffering takes a toll. 

But what will others see in me beyond the damage? 

Will they see growth, even if I feel like it’s just a little bit? 

Is there green under my bark? 

Oh God, grow us in our prolonged sufferings so that You will be honored and others will be amazed at what You have done!

Aaron Riding High

Today after church, Gary and I went to lunch with our sweet friends, Phil and Lydia.  Phil is a business owner, and also a farmer.  They were talking about wheat harvest, which is happening now. 

Aaron has been loving a new game, Farm Simulator, so I asked if maybe we could come out and look at the farm.

“Sure!” Phil said.  “Aaron can ride with me on the combine.”

That was so much more than I expected!  How exciting!

Lydia picked me and Aaron up later, and off we went, headed west.  The golden waves of Kansas grain are so beautiful right now.  All along the way, here and there, we could see the combines out in the fields harvesting the wheat.

We got to the field, and soon there came Phil.  As he emptied some wheat, Aaron followed him to the combine.

Soon he was climbing the ladder.

And off they went!

How fun to watch that huge combine do its job!  And to know that Aaron was sitting up there!

What a fun day for Aaron! 

Thank you, Phil and Lydia, for being so kind and for giving Aaron another first-time and exciting experience.

Our Texas Trip – Part 3

I want to wind up my tales of our Texas trip with this blog…I hope.  This doesn’t need to drag on for weeks!  😊

I told about the Aquarium Pyramid in Galveston in my last blog.  A few days after that adventure, we went back to Galveston to go see the Rainforest Pyramid.  These are such unique buildings!

Aaron loved the Rainforest as well, although he wasn’t over the moon excited like he was in the aquarium.  Still, it was great fun to see all sorts of rainforest birds:

Flowers:

Fish:

And when I turned around, it was not such great fun to see Aaron’s hand stretched out toward this cute little monkey and see the monkey holding Aaron’s finger!!  Actually, it was adorable, but we knew he wasn’t supposed to touch the animals.  And then he told a worker about his fun moment, and he got a nice lecture.  😊

It was another wonderful day for all of us.

And ended with supper at Skipper’s.

I wanted to also share a few of the sweet family moments that made this trip extra special. 

Our son, Andrew, was in town for an NHRA race.  He lives near Indianapolis where the teams are located, and he travels all over, so we don’t see him nearly enough.  We usually go to the Houston race but the chance of the race being cancelled due to COVID kept us from buying tickets this year.  Here is a shot of what he does – he’s in the center, starting the top fuel car.

He was able to come over to Andrea and Kyle’s house for an evening.  It was so wonderful to all be together for the first time since I don’t know when. 

We took a picture that’s not the greatest quality but still shows the greatest time together. And look at Aaron!  😊

Another sweet moment was playing Skip-Bo with Andrea.  Aaron keeps a notebook record of who wins each game when he and I play. 

But as we played with Andrea, Aaron REALLY wanted her to win.  He watched her cards carefully and would purposely not play his if it meant she could play hers instead.  Therefore, she won the game and Aaron was thrilled!  He had already gotten a piece of paper and very happily gave her a column with her first win mark.  It was just precious!

Kyle promised to play catch outside with Aaron on Saturday, but it poured rain all day.  Therefore, Kyle grabbed some soft dog toys and played catch with Aaron inside, which tickled Aaron to pieces.

Aaron had lots of quality doggie time, which he loved…and so did the dogs (for the most part!).  They certainly knew where to go to have a treat slipped to them!

On the morning we left to go home, Aaron was all packed up and ready to hit the road. 

Aaron:  I’m sad to leave Andrea.

Me:  So you’ll want to come back again and see her?

Aaron:  Nah.

😆😆

But he did worry all the way home about leaving her and whether she was lonely.  We didn’t tell him that she might have been enjoying the quiet.

So, again, I want to thank all of you that were praying for us on this vacation.  This trip truly was the best ever with Aaron, and we are very sure it was due to all the prayers from all of you.  Thank you so, so much!

And thank you for reading about our fun times and all the sweet memories made. 

Our Texas Trip – Part 2

In my previous blog, I shared with you some of the difficulties Aaron had as we went to Texas to see our other children.  Kyle and Andrea live just east of Houston, and our son Andrew was going to be in town there for an NHRA race – he works for one of the teams.

Aaron loves talking to his siblings on the phone.  He could go on for hours, literally, talking about all his interests.  But suddenly the idea of actually being with them was not so appealing.  It’s the traveling and leaving his comfort zone that he simply cannot handle. 

We all know Aaron very well and have come to expect his anger when his world is upended.  During Christmas, we refer to Aaron’s Annual Christmas Meltdown as we know it will inevitably occur.  So on this week of vacation and visiting, we were fully expecting Aaron’s Annual Vacation Meltdown.

We started our week off in a safe mode, doing something Aaron loves – shopping!  He was happy to go to Sam’s with me and Andrea, carting home extra goodies that he chose.  He was more relaxed and happy that day, until we told him that the next day we were going to the Aquarium Pyramid in Galveston. 

His discomfort level rose as he contemplated tackling one more unfamiliar place.  But when we showed him a video of some of the displays there, his interest overcame his doubt.  And oh my goodness, what a day we had!

The building itself is beautiful:

And once inside, Aaron was beside himself excited!  He loved every single minute.  Everyone nearby heard and saw his joy as he laughed and pointed and talked up a storm.  The day was truly delightful.  Here are some pictures.

Near the entrance, with Gary and Andrea:

He LOVED the penguins: 🙂 🙂

The tunnel was amazing:

He got to pet the Manta Rays, but the first time he bent over in a deeper area he started to fall in the water!  He would have totally fallen in had Gary and I not grabbed him.  His soaking wet shirt and shorts didn’t bother him in the least.  We went up to a safer place and he carried on while Gary and I held on…to HIM!

A visit to the gift shop ended with us buying Aaron a stuffed penguin he wanted.  On the way out of the aquarium, we passed one more penguin display, where Aaron showed the live penguins his stuffed penguin.  The reaction of the one of the penguins, and of Aaron, was priceless.

We ate lunch at Jimmy’s On The Pier.  It was very windy outside but so beautiful!

What a very fun and wonderful day for all of us, full of happy memories!  I’ll share more in my next Texas blog.  Thanks for reading!

Our Texas Trip – Part 1

I heard an old George Strait song yesterday that could have been Aaron’s theme song leading up to our trip to Texas.  The song is titled “I Hate Everything.”  And oh boy, did Aaron ever!

The night before we left saw us reeling under all Aaron’s verbal blows.  He was livid at having to go with us, far preferring that we hire a caregiver to watch him while Gary and I went alone.  We were definitely with him on that as the evening wore on and we were worn out. 

The next morning was no better.  Aaron didn’t like us, the trip, the car, the snacks we took, Texas, Andrea, Kyle, their dogs…nothing.  The only thing he liked was his idea of staying home and that was NOT going to happen, so we were stuck with lots of “not likes” and plenty of anger. 

“I hate this vacation!!” he declared as we drove down the interstate. 

Aaron does not enjoy leaving his room, his house, his routine, his bed…his normal.  These things are such a part of what makes Aaron function in his normal that the process of uprooting, even for just a week, is nearly more than he can bear. 

Aaron accepted his inevitable doom as we drove farther away from normal.  Gary and I left him to his games, his music, and his movies as we quietly recovered.  How draining it all was!  I texted and messaged friends and family to please pray.  What a comfort it was to know that we were being brought before the Lord!  I know that many of my fellow bloggers were also praying, and I thank you so much for that. 

We stopped a few hours down the road at our favorite Oklahoma City rest area.  And there Aaron found a cute little stuffed owl that we let him buy.  He rubbed his hands together in his happy way as we paid, and Gary and I felt like doing the same as we saw a lifting of Aaron’s anger.  A chocolate milkshake and onion rings from the nearby Sonic gave him further reason to smile. 

It’s a very long drive to Houston, and then even farther to Andrea and Kyle’s house in League City.  Aaron had lots of time to think about the upcoming week of change and uncertainty that he felt waited for him there.  We saw occasional outbursts from him about how he still didn’t like this vacation. 

Finally, there it was…the Houston skyline.

And not too long after, we were pulling into Kyle and Andrea’s driveway.  We could hear their 3 adorable dogs barking as we got out of the car.  Soon we were sharing hugs and doggie pats, settling our things in our rooms, and sitting down to the pizza that was waiting for us.

What a relief it was to see that Aaron was relaxed!  He had immediately given the dogs their treats and toys we had brought to them.  As we sat around the table, I was so touched to see the total attention that Kyle and Andrea paid to Aaron as he talked non-stop. 

That attention to whatever Aaron is saying is one of his major love languages.  The things he talks about can be mind-numbing to us but not to him.  Listening, commenting, answering his many questions…that means more to Aaron than we often stop to recognize.  But Kyle and Andrea know Aaron, and they love him, and they showed it by listening with great interest to his talk of…whatever it was he was saying.  😊

Later, as we were getting ready for bed, Aaron had me fill his water bottle that he keeps by his bed to drink while he reads a book before he goes to sleep.  Got that?  Because that little fact is very important.

I gave Aaron his pills while he was getting in bed.  Not having any other water, I told Aaron to just drink some of the water from that water bottle. 

“No!” Aaron told me.  “I can’t drink that water to take my pills.  That’s the water I drink while I’m reading in bed!”

I was so tired.  I sighed, and Aaron heard me.

“You don’t understand,” he said, with some anger returning.  “No one understands me!”

It was like some of that water splashed me in the face as I was hit with a fresh look into Aaron’s heart.  Try as we might, sometimes it truly is very hard to understand Aaron. 

Or maybe we understand on paper, when things are calm, but in the middle of the moment when we’re stressed it can be very hard to slow down, take a breath, step back, and see the world through Aaron’s eyes.  Feel it with his senses. 

This whole trip was like going to Mars for him in many ways. 

“Please, Mom,” it was like he was saying.  “Don’t also make me use my bedtime water bottle for taking my pills.  Don’t you understand?!”

My rising frustration was immediately replaced with empathy for this son of ours who didn’t ever ask to have autism.  But he does ask that we try to understand him as he lives with the rigidity that autism causes. 

Just understand.

Push aside my exhaustion, my frustration, my expectations – and simply give him a separate glass of water for pill taking.

What a gift that was to Aaron!

And to me as I once again saw him relax.  I knew that I, too, had spoken Aaron’s love language.

I have so much to tell you about our time in Texas.  It was the best trip ever for all of us!  I’ll share more later, hopefully soon, in my upcoming blogs.

Bless all of you for reading and for caring!  Good night and sweet dreams.

Whose Sickness or Health?

Today is our anniversary!  Gary and I have been married 42 years.  I don’t even know how that’s possible, but somehow it is. 

There we stood in my beautiful home church in West Virginia, young and in love, pledging our vows to each other. 

Now we’re old, although I really don’t feel like it most days…and we’re still in love.  Our love is deeper and more settled than those early years, rooted in all the ups and downs of life that we have weathered together.

On my mind today are those familiar vows that are so often spoken at weddings.  We promised to stay true to each other “in sickness and in health.”

Never ever even once did I think of the sickness and health part as being anyone other than Gary or me.  Having a child with lifelong health issues was not anywhere on our radar when we spoke those words to each other and before God.

Today our plans were simple.  We would eat lunch out together while Aaron was at his day group.  Time alone while Aaron was happily occupied was a perfect plan.

Just before 8:00 this morning I heard Aaron having a seizure.  This is not unexpected.  I knew at that moment that our anniversary day plans would be changed. 

Later, when Aaron was awake and hungry, here was our view for a late breakfast on our patio.

And it’s OK, truly.  Gary and I are very used to these sorts of changed plans in our life.  And I am not trying in any way to garner sympathy. 

What has been on my mind this morning is that when Gary and I spoke those vows about sickness, we in reality were referring to our life with Aaron as much as anything – though we had no idea of our future.

Aaron’s life of special needs has been very trying at times.  Yet through it all, Gary has stood right by my side.  He has never wavered due to the stress of it all.  The demands of our many years in the military, his own career decisions, our moves, so many doctors, hospital stays…well, I could go on for a long time about how Aaron’s life has impacted Gary’s in particular.

But Gary never bailed on me or Aaron.  He has led and sacrificed and given of himself to both me and Aaron over and over and over.

So our vows, as I ponder them this morning, have taken on an even sweeter meaning to me. 

Staying true in our son’s sickness and health is indeed the greatest gift of love that I have been given by my husband…my husband of 42 years!! 

Happy Anniversary, Gary!   I love you so much. 

We’ll do a rain check on our lunch.