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. 😁😁