Glamorless Glory

“Mom,” Aaron quietly said as he was getting ready for bed, “my toilet is stopped up.”

Aaron dreaded telling me this.  It was the third time in a few days that he had managed to stop up one of our toilets.

And this third time was NOT a charm, but instead was a huge mess.  I could have gotten Gary to do the dirty clean-up. 

“No,” I thought, “I can do this…yet again.”

I did think a few times that I really should have called Gary.  UGH!!

This was an opportunity for me to practice the patience that God is trying to teach me.  And to…once again…school Aaron on the proper treatment of our toilets. 

Why do these things happen so often at night when I am most tired?!

You know, being a caregiver of any sort can be exhausting.  Being a mom…a homemaker…the one responsible for the needs of whomever is under our care…has its many moments of humbling work.

Special needs or other health issues certainly add to the mix a new level of care.

And a new level of seemingly lowly service. 

Because face it, cleaning stopped-up toilets or throw up or wet bedding is not exactly something to write home about.

Even as Christ followers, we envision that the far-away mission field is more glorious and honoring than the dirty work we often do within the walls of our own home.

Not long after this third toilet episode, as I lay in bed reading, I felt compelled to check the FB page of my favorite author, Dale Davis.

His son had posted this piece.  I hope you will read it slowly and fully.

“When Mary was not nursing her son, she placed Him in an unused feeding trough (of wood or stone) right next to her…But a feeding trough! Let us never be surprised at the humility of God. The Westminster Shorter Catechism asks (Question 27) Wherein did Christ’s humiliation consist? Its answer begins: ‘Christ’s humiliation consisted in his being born, and that in a low condition…’ Its scriptural proof text for that ‘low condition’ is Luke 2:7. In a feeding trough, needing a mother’s breast and a change of diaper. How very incarnate the incarnation is! And yet what encouragement is here. For if Christ stoops so low, to such a ‘common’ level, does this not sanctify all that seems common and ordinary and unimpressive in the lives of His people? To be quaint and go back a few years–the weaver laboring at his loom, the farmer putting up hay, the mother cleaning her oven, or the teacher tutoring her ‘slower’ student in reading, the accountant preparing tax returns, the pastor reading in his study, the doctor diagnosing a perplexed patient. Jesus’ feeding trough suffuses all the glamorlessness of our callings with a touch of His humble glory.” (Dale Ralph Davis, “Luke 1-13: The Year of the Lord’s Favor”, pp. 46-47)

Tears slid down my cheeks.  For Christ, who stooped so low to be born in a dirty animal cave, and laid in a feeding trough, does sanctify and will honor the grimy and the mundane work that I do…even if I do not see the results of it.

God has always chosen to use the less than exciting places and people and moments in order to draw attention to His glory.

Jesus’ mother, Mary, was a very young teenager in a town that was looked down upon by everyone.  She and Joseph were poor and unknown.  They were no doubt the subject of malicious gossip because of Mary’s pregnancy.  Then Jesus was born in the humblest of places with no great fanfare.  Mary and Joseph had to escape to Egypt in order to survive Herod’s wrath. 

And all through Jesus’ ministry we see Him using the most common people in the simplest of places in order to proclaim His message.

How can I wonder if He is doing the same with and through me? 

I have no doubt that many of you are feeling like me so many times – like I am in a rut of caregiving and for WHAT?

But may we not allow the allure of the world’s values concerning glamor to be ours.

May the touch of God’s humble glory turn our glamorless callings into moments of praise and joy.

And may we be grateful for every stopped-up toilet as we see it through God’s eyes…an opportunity to share in His humility and to give Him glory. 

Choosing to See

I was sitting on our couch near our Christmas tree a few days before our kids were going to arrive when I suddenly saw that one strand of the lights had gone out. 

“Oh bother!” I thought as I got up to look closer.  “How does that even happen?”

I decided to just let it go.  It was so close to Christmas and the last thing I wanted to do was remove that string of lights and try to place a new one amid all the other decorations. 

Yet every time I walked into the living room, where the tree prominently stood, this is what I saw.

I saw the missing lights.  I saw the dark space. 

This is what I wanted to see. 

But no, my eyes were inevitably drawn to the area where the lights were missing.  Every.  Time.

Things with Aaron have been a little tough lately.  Actually, a lot tough.

Aaron has shown more than his average share of anger.  He can put a whole new spin on the concept of being angry. 

Many of his seizure meds list anger and other behaviors as possible side effects.  One of those med dosages was recently increased.  So, there’s that.

Then there is his autism, with or without the interference of his medicines.  His structured life was becoming more unstructured as the holidays loomed on his horizon. 

And years of seizures have done untold damage to his brain and to his ability to function in our world.

Gary and I know all this but living with his outbursts of anger is at times more than difficult.  His shattered supper plate full of lasagna, or the hole in his wall, are just two examples that can attest to the stress we have been under.

This morning, as I am slowly finishing my study of the book of Deuteronomy, I was reading Moses’ blessing to the tribe of Joseph in chapter 33.  God promised, through Moses, to give the people of Joseph “choice things…best things.”  The Hebrew word here means things of highest quality.

Then in verse 16, God said, “…and the favor of Him who dwelt in the bush.”

Remember Moses and the burning bush in Exodus 3?  God spoke to Moses in the bush that was burning…the bush that had attracted the attention of Moses as he shepherded his father-in-law’s sheep in the desert wilderness. 

There was God, burning bright in that bush, and telling Moses that this was holy ground.  Telling Moses that He had seen the affliction of Israel, and of His plan to use Moses to rescue the people out of Egypt.

But what impressed me about all of this was the fact that Moses was in a wilderness place, a place of severe hardship, when God spoke to him out of the bright burning bush. 

Moses had been banished from all he knew in Egypt.  He was running for his life when he ended up in the desolate wilderness.  Now he was a lowly shepherd of sheep that weren’t even his.

How easy it would have been for Moses to look at all the darkness in his life…to have his eyes drawn away from God’s glory in the burning bush to focus once again on his dismal circumstances. 

But God, despite the early reluctance of Moses, promised to go with and before and all around Moses.  He urged Moses to look at His glory, the glory that shone in the burning bush, and not at his dark and scary surroundings. 

It’s tough to live with and care for a child with special needs of any kind.  To live with Aaron, a very verbal adult, when he is angry is exhausting at times.  It’s not something I like to display or talk a lot about, but this part of Aaron is a very real part of our lives. 

I think many of us have those areas of our lives that we want to keep more or less hidden.  I’m very thankful for family and friends that I can confide in…those that I know pray for us.  There are ways that I know I need to be more open.  Maybe that will give others the courage to do the same.

Life is just hard right now on so many levels for all of us.  Satan really wants to discourage and defeat us in whatever way he can. 

But I want to look at this life we live and see God’s glory, His hand, His light over every bit of it.  I don’t want to focus on that dark part. 

I want to live under the knowledge that as God’s child, I am living in “the favor of Him who dwelt in the bush.”

THAT God of Moses is also MY God.

I can focus on His promises to me, and even in the darker times I can make the choice to see His light…the light that shines brighter than my dark.

Secret Things

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

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

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

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

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

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

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

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

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

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

Peace.

Joy.

Contentment.

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

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

“Go ahead and open it,” He responds.

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

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

“Why?!” I ask through my tears.

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

“But…” I so often begin.

And God answers:

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

Like the old hymn writer said:

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

By and by, when the morning comes,

When the saints of God are gathered home,

We’ll tell the story how we’ve overcome

For we’ll understand it better by and by.

The Other Side

 Aaron recently had a tooth pulled and an implant inserted.  He’s really done well with the whole procedure and with healing, as far as we can tell.  But as is the case in every single tiny part of Aaron’s life, autism rules. 

I mean, come on, this is the guy who won’t get up from a program until he watches the credits.  Who, if he has multiple music CD’s from the same artist, will only play them in the order of their production date.  Who will not start eating his popcorn at the theater until the movie we came to watch has actually started.   Who lays his special greeting cards on the bed at night while he reads, just like this.

Who keeps a log book of the time he goes to bed every night and the time he gets up in the morning. 

And who…get this…will only chew on one side of his mouth.  And you can probably guess which side that is.  The side which had the extraction and implant, OF COURSE!!!

This was a huge reason that my stress level was so high as I thought about his recovery.  Gary and I have coached Aaron and encouraged Aaron and demonstrated to Aaron and pled with Aaron to please…just PLEASE…chew on the OTHER side of his mouth.

“I don’t LIKE chewing on that other side,” he asserted over and over.

“So start early and get used to it!” we declared.

“But I can’t TASTE on that other side,” he told us over and over.

Silly parents.

Thinking we could even remotely win this battle was as crazy as…well, as expecting Aaron to chew on the other side of his mouth.

For Aaron…for anyone with autism…there is basically no other side to any matter.  There is one side…one way…to do and to see everything. 

Things came to a head last Wednesday night.  I had fixed Chicken Fajita Soup.  Aaron had eaten and enjoyed this soup in the past, but that was before he was being tormented with all this tooth business.  He was unhappy with the soup.  He was unhappy with me for fixing the soup and for insisting that he eat some soup.  Aaron’s unhappy led to my unhappy. 

That was one side of the matter.  The other side is that Aaron was looking forward to going on our Meals on Wheels route the next day and finally getting to eat out.  We were going to his favorite Mexican restaurant to see his favorite server and eat some soft enchiladas and of course to scarf down a side salad with no croutons and with TWO ranch dressings!

But instead, he had two seizures in the early morning hours.  He stayed home with Gary while I went on our route.  I felt sad for Aaron, but honestly, I needed that alone time.  The previous night had been rough.  I had not gone through Aaron’s normal bedtime routine because I was just so tired on every level.  Instead, we simply said a quick goodnight and I sat at my desk reading some Psalms and praying. 

Those are the times that I do not feel the joy of being Aaron’s mother but instead feel overwhelmed with the burden of caregiving.

I could feel my burden being lightened as I delivered the meals to my elderly clients that morning.  I pulled up to a new client’s house.  It was only my second time to take R. a meal.  She slowly came to the door with her walker.  We talked for a minute and then she began to tell me about her husband who had died a few years earlier.  She had been his caregiver for years before his death.  I was able to share with her some things about Aaron, whom she remembered from the week before.  I felt a bond with her, this new little friend who smiled when I told her that she didn’t look like she was 91 years old.   But then she talked about how lonely she was, and how she felt like she had no purpose…that she just existed.  And I told her that she did have a purpose in God’s eyes and how she had just encouraged me.

I had to run on and deliver more meals.  When I went to C’s house, he immediately asked about Aaron.  He had some things to give to Aaron.  He handed me a plastic pumpkin that was loaded with stickers and rocks that he had painted with Aaron’s name, along with several other items.  I thanked him over and over, and he told me that this was his ministry now since he couldn’t get out like he used to do. 

I told him that his words reminded me of my visit with R…of how she felt useless and with no purpose, but how we all have a purpose in God’s eyes. 

“What’s her name?” he asked.  “I’ll paint her a rock!”

I told him her name and he spelled it to be sure he had it right.  Then he said that his aunt had that first name, and how she lived a few blocks over…that she was alone and was 91 years old.

“That sounds like my new client,” I told him.

He gave me his aunt’s last name. 

And wouldn’t you know it?  His aunt is the new client that I had just talked to, who is so lonely and sad.  He said he would call her and visit with her.

This was a sweet gift to me from God, this reaching down and orchestrating the encouragement that our three hearts needed. 

For R and C were not the only ones who needed that touch from God on that morning.  I needed it, too. 

Yes, I could walk and drive and later go out to eat with Aaron.  I got to go home to a loving husband and live in the purpose that God has given me at this point in my life.

But sometimes God’s purpose for me is not easy, yet it IS all too easy to chafe under the yoke instead of remembering that God has said His yoke is easy when I wear it for Him. 

That’s the other side of God.  He teaches us so much under the stresses and burdens of the lives we live. 

He equips us for the life He has planned for us.

And He surprises us with sweet blessings when, and how, we least expect it. 

See My Hurt?

Aaron recently had a tooth that was hurting him so much that he asked me to hurry and call our dentist so he could look at it.  For Aaron to want to go to the dentist showed me that he was truly in pain.  Our dentist referred Aaron to our endodontist, who confirmed what the dentist thought…that Aaron’s tooth was probably cracked way down in the root, infected, and would need to be pulled. 

Aaron was fascinated to look at the x-ray that the endodontist showed him.  You could see all the dark areas of infection very clearly.  Dr. Turner explained to Aaron that this was why his tooth hurt so much. 

Our next appointment was with an oral surgeon, the same one who had removed Aaron’s back molar near this infected tooth.  That molar had fractured during a drop seizure when Aaron’s face had hit a cement floor.

At first Aaron was pensive and tired:

Then he became silly as we waited for the doctor (look at his watch! 😊):

Dr. Cole finally arrived and examined Aaron’s hurting tooth.  He put up the x-rays that were taken in his office a few minutes earlier.

Aaron’s eyes darted to the x-rays.  He studied them for a few seconds.

“Can you see my hurt?” he asked.

Dr. Cole was a little confused.  He said that he couldn’t exactly see the crack but that they knew it was there.

“But can you see my hurt?” Aaron asked again.

I knew what Aaron meant.  He wondered if Dr. Cole could see the dark area of infection that was visible on his other x-rays.  These looked different and Aaron was concerned that Dr. Cole couldn’t see his hurt. 

I explained to the doctor what Aaron meant and then he understood. 

But Aaron’s way of asking about his tooth…his hurt…was SO Aaron and so touching, somehow.

I’ve thought a lot about seeing hurt, not only as it relates to Aaron but to others all around us as well. 

One day last week when I picked him up at his day group, he had just had a seizure before I got there.  He was laying on a booth seat when he had the seizure and so he fell off the seat, onto the floor.  I went in and there he lay on the cement floor.  One of the very kind supervisors actually got on the floor with Aaron as we tried to wake him up.  It took awhile before Aaron was awake enough to get off the floor, but it took some doing to get out of that tight area.  Later that night, Aaron showed us a couple scuffed places on his back.  Thankfully that was the only evidence we saw of his seizure…that, and his bitten tongue.

That was a hurt I could see.  Him lying on the floor, having a difficult time communicating when he woke up, and then the areas on his back that hurt, were all visible to us.

But how many times does Aaron, or any of us, have hurts which others can’t see?

For me, I hurt when Aaron has seizures.  I hurt when he talks about wanting a girlfriend or wanting to get married. 

Or when his meds make him very sleepy, and I wish he wasn’t so drugged:

Yet those hurts are ones I don’t want Aaron to see and so I hide them as best I can from him, and even from others.

How about you?  Do you have hurts you hide from the world, or even from those closest to you?

I think we all do.  I know I do. 

Why do we hide our hurts?  Maybe we don’t want others to feel sorry for us.  Maybe we feel we must be strong in front of everyone.  Maybe we’re embarrassed.  Maybe we can’t bear to share the pain and hurt we feel so we try to bury it.

But there is One Who sees every hurt we carry…Who understands every pain we feel…Who is wanting us to turn to Him and let Him take and carry our burdens. 

“Come to Me, all who are weary and heavy-laden, and I will give you rest.”  (Matthew 11:28)

Here is another way to say it:

“Come to Me, all who are beaten down and burdened down, and I will give you rest.”  (Matthew 11:28)

 I think of the old hymn, Tell It To Jesus:

Are you weary, are you heavy hearted?

Tell it to Jesus, tell it to Jesus.

Are you grieving over joys departed?

Tell it to Jesus alone.

Tell it to Jesus, tell it to Jesus,

He is a Friend that’s well known.

You’ve no other such a friend or brother,

Tell it to Jesus alone.

Do the tears flow down your cheeks unbidden?

Tell it to Jesus, tell it to Jesus.

Have you sins that to men’s eyes are hidden?

Tell it to Jesus alone.

Do you fear the gathering clouds of sorrow?

Tell it to Jesus, tell it to Jesus.

Are you anxious what shall be tomorrow?

Tell it to Jesus alone.

Are you troubled at the thought of dying?

Tell it to Jesus, tell it to Jesus.

For Christ’s coming kingdom are you sighing?

Tell it to Jesus alone.

If we can’t share our hurt and burden with anyone else, we can still share it with Jesus.  But sharing our hurts with those we trust, those who will pray for and with us, is also a huge help in relieving our pain. 

There is way too much hurt today in this crazy world…way too many beaten and burdened down people.  I pray that I will look at everyone around me and wonder if they are saying, “Do you see my hurt?”

And even if I can’t see it, that I will be kind and loving to everyone, knowing that they may be carrying a huge hurt that I know nothing about.

May I see and love through the eyes of Jesus. 

And may I let that same Jesus carry my unseen hurts. 

My Body, My Choice…and Aaron

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

Against the backdrop of yelling protestors –

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

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

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

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

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

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

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

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

Do you see the issue here? 

Do you see the issue for our culture today?

My choice!

My choice which god I will serve.

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

We all serve and worship someone or something.

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

My choices FOR life.

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

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

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

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

I can’t.

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

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

My body is not mine.

My choice is not mine.

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

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

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

I only need to choose…GOD!

Photo taken by Karlea Tanner

What Aaron Shares

Recently, my husband and I went to an NHRA race in Topeka.  Our son, Andrew, works for one of the teams.  It’s fun to go to the races but it means even more to us to get to spend some time with Andrew. 

“MOM!!” Aaron said to me the day before we left, “take this state quarter to Andrew!”

You see, Aaron collects state quarters.  He keeps every state quarter that he finds and stashes them away in a tin box in his desk drawer.  He loves his state quarters!  So, to offer one to someone else is indeed a gift from his heart.  He sent one to his sister for her birthday in June, and now wanted us to take one to his brother.

The quarter he chose was dingy, but to Aaron it was a gift of gold.

Then to top it off, he brought me another gift to give Andrew.  He chose this gift from his new bag of bubble gum, bought just a few days earlier. 

On our first night in Topeka, as we waited on our dinner, I gave Andrew his special gifts from Aaron.  Such a sweet moment, and the look on Andrew’s face was priceless.

Aaron loves to share…to give things to people. 

Sometimes when he and I are watching a show at night, and he’s snacking on nuts or something else, I’ll suddenly have a piece of whatever he’s eating land on my lap.  He throws me pieces of his food like I’m an animal at the zoo that he’s feeding!  😊 😊

Let me share with you some of Aaron’s sharing with us.  I think your heart will be as touched as ours is.

Aaron laid these on my leg one day.  It was better than having them thrown at me! 

Another time, I found these on the coaster where he knows I put my drink at night.

And he left two of his very special rocks on my pillow one night.

Distance is no deterrent to Aaron.  He wanted to share some of his new Jolly Ranchers with Andrea and Kyle in Texas, and with Andrew in Indiana.  We bagged and boxed them up, and in the mail they went.  The postage cost more than the whole bag of candy, yet Aaron’s joy was well worth the money.

But Aaron shares more than just items like candy and quarters and rocks. 

Aaron shares huge smiles.

He shares his amazing discoveries.

Aaron shares joy in the simplest things.

Thanks for the picture, Karlea!

Aaron also shares words and actions and attitudes that can aggravate and anger us.  It’s all a part of the intricate way that his brain is wired. 

It’s up to me and to Gary to keep instructing Aaron…keep loving Aaron…and keep our emotions in check during the rough times.

We don’t always do it well or with grace.

But every day is a new day.

Every day, God’s mercies are new.

Every day, we all have some hard times. 

Every day, we have opportunities to focus on the blessings.

And every day is full of new discoveries and adventures for our son who is still, in so many ways, a child.  💙💙

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.

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.