Category: Caregiving

You Never Do That To Me!

One of Aaron’s biggest struggles is with jealousy.  And sadly, he is often the most jealous of the attention that we pay to our grandchildren.

Being Uncie Aaron is not always the joy to him that we hoped it would be.

On Saturday, Gary took Ryker for a ride around our yard on his riding lawn mower.   (No worries – the blades were up).  Sure enough, Aaron took note and soon said the all too familiar, “You never do that to me!”

So, Gary looked at Aaron and said, “Hop on!”

It was hilarious to look at Aaron sitting on Gary’s lap.  Aaron was really too big to fit and it was very awkward.  But good for Gary to give it a go!  And he could only go in reverse, which made it even funnier.  

How many times we have talked to Aaron about his place in our family as we assure him of our love!  

I was thinking about this as I continued my study in Nehemiah today.  Those that worked to restore the walls of Jerusalem, the temple, and the worship shared many various duties and positions.

Some were in high positions of leadership while others carried wood or cleaned up the many messes that were made.  Yet each person was appointed by God to the job he had for them.

Do you ever wonder about your place in life?  

Maybe you once held a position that is now gone.  

Or you never had a chance to prove that you could do what that other person is doing.  

Perhaps life has radically changed for you because of your health issues or age or finances or…you fill in the blank.

It’s so tempting to look at God and say, like Aaron, “God, you never do that for me!”

Comparison to others is the robber of joy.

Social media can be a real problem in this area.  I can be just fine and out of the blue see a post that makes me wish for something I don’t have.  

It can be any number of things, but the result is the same.

Ugly jealousy.

Discontent.

And if I don’t nip it in the bud, I might begin questioning God.

When we started our married life, Gary and I never dreamed that we would have a child with special needs.

Caregiving is not a life of leisure and does not allow for spontaneity in our lives.  Caring for Aaron is our life.  

We must consider him first in everything we do.

Your struggles are probably different from mine, but each of us do have those areas of raw questions that we may not share with anyone else but God.

Oh, but God!

He has given me that visual of Aaron riding on Gary’s lap to remind me that what I may desire is not His place for me.

I wouldn’t fit there.

God has put me here, where I am.  

If I don’t believe that then I am not living in obedience and trust to the God Who really does love me.

The God Who has put me in this place in His family for a specific reason.

So Lord, help me to get off that tractor where I sometimes want to be. 

Change my “You never do that to me!” to “Thank you for what you do FOR me in this place where you have put me!”

Uncie Aaron…His Buddy and His Burden

Time waits on no man, Chaucer said.  Time waits on no child, either.  We see this clearly as we watch Ryker growing.  Pictures from a few months ago compared to now show his physical growth.  New words and speaking in sentences show his intellectual growth.  

It brings joy mixed with a dose of sadness as all parents and grandparents know very well.

Ryker and Aaron’s relationship is also growing with time.  We have seen great strides on Aaron’s part in his friendship with his little nephew.  

Sometimes Aaron sees Ryker as his buddy.

Aaron still loves giving Ryker snacks.

Screenshot

He didn’t even mind Ryker taking his favorite chair one day.

They play funny make-believe games.

Wear goofy hats of Aaron’s.

Watch cars zoom down the track.

Do chalk drawings.

Laugh at silly cartoons.

Thoroughly enjoy water balloons.

Blow dandelions.

Play music.

Occasionally share the playset.

Fly a plane.

And one of the best is when they watched our fireworks on the Fourth.

It’s just the cutest thing to see Aaron look at Ryker and say, “Ryker!  Come on!”  Then to see Ryker bolt as fast as he can on his little legs to run with Aaron up the stairs to Aaron’s room where all sorts of fun and unique gadgets await his exploration.  

And snacks that are new to Ryker!  Dots!  Red Hots!  Pistachios! 

And gum!  

So, you can see that we must monitor things closely, sometimes much to Aaron and Ryker’s frustration.

But for all the positive steps forward, Aaron still carries the burden of his autistic way of processing his world and how others impact it.

Aaron sends mixed signals to Ryker.  One minute he might be happily allowing Ryker to play with one of his cool toys and the next he might yell no to Ryker for touching another treasured item.  

Aaron can be hurtful with his words during those times, and inappropriate.  

Therefore, we must also monitor those moments as we try to foresee certain triggers that might upset Aaron.  We’re just never totally in the clear and probably never will be.

Yet, again, the progress Aaron has made truly gives us much for which to thank the Lord.  

The challenges cause us to seek God’s patience and wisdom as well.

Speaking of prayer, this has been one of the sweetest and funniest areas of Uncie Aaron and Ryker’s relationship.  

Aaron has never forgotten a silly prayer that he heard in an old Don Knott’s movie when he was a child.  He sometimes yells it out when we get ready to ask the blessing before eating.

“Rub-a-dub-dub!!  Thanks for the grub!!” 

No amount of correction on our part has kept Aaron from blurting that out sometimes.  So, you guessed it.  One day as we all sat at the table and joined hands, Aaron gleefully yelled, “Rub-a-dub-dub!”

And Ryker, without missing a beat, chirped “Rub-a-dub-dub!!”

Let’s close our eyes to pray now…and let the adults grin real big!

Every night as part of Aaron’s bedtime routine, we join hands and pray.  Ryker has joined us before.  One night I asked Ryker if he wanted to pray with us, so he scurried up on the bed, took our hands, and immediately launched into his own prayer.  We didn’t understand much of what he said, but it was precious in God’s eyes, I know, and certainly in ours.  

Andrea shared with us Ryker’s prayer one night at their house.  I had come over to help with the baby.  Laying in his bed before he went to sleep, Ryker prayed:

“Dear Jesus, dank you Gramoo.  Dank you Uncie Aaron.  Dank you donuts.”

Out of the mouths of babes.

Dear Jesus, dank you Uncie Aaron.  Even in the frustrations…the continual training that sometimes never seems to take hold…the corrections…the monitoring…

May we see the joy he also brings…the laughter…the delight at the simplest things that we often overlook.

And the huge progress he’s made in his role as Uncie Aaron.

Let’s not forget donuts!

Rub-a-dub-dub!!

Another Lunch With Aaron

“Where are you eating lunch today?” asked the ladies at the front desk as Aaron and I left his Epilepsy doctor visit.  

“Chili’s!!” Aaron answered excitedly.

“Oh, I love Chili’s,” one said.

“I want to go to Chili’s!” added the other.

Aaron chuckled loudly as we left the waiting room, me warm with their always welcoming chatter with Aaron…and Aaron walking with purpose now because finally we were going to lunch!  After all, eating out is the real objective of every doctor appointment, at least for Aaron.

Soon we were pulling under a shade tree in the Chili’s parking lot, where Aaron was quickly opening his door while I quickly told him to wait on me.  He did, thankfully, and together we walked in the door.  

Curious stares greeted us as Aaron barreled in and had eyes for only one thing…the toothpick dispenser.  You see, Aaron “collects” toothpicks, so he makes a beeline in every restaurant to the sharp little prizes he knows are on the front counter.  He proceeded to increase his collection while I trailed slightly behind him, trying to greet the host while simultaneously attempting to discreetly tug Aaron away from the toothpicks.  Aaron was unaware of the host saying hello or of the all-too familiar looks he was receiving from the puzzled host.  He was too busy stuffing toothpicks in his pocket, but he did have presence of mind enough to tell the host we wanted a booth while I reminded him that any seat was fine.  

I was just happy to finally be seated.  Our server appeared quickly.  I could tell right away that he was comfortable with Aaron, and I hoped that attitude would last.  We were still early into his Aaron experience and one just never knows.

“Hello,” he happily said.  “My name is Luke and I’ll be taking care of you today.”

“Can I have a salad with NO croutons and TWO ranches??!!” Aaron bellowed.  

And for at least the millionth time I reminded Aaron that our server was taking our drink orders now.  Food orders would come later.

“Oh OK,” Aaron replied as if this was new news.  

Our waters came and the instant Luke asked if we were ready to order…

“Can I have a salad with NO croutons and TWO ranches??!!”

I guess I don’t need to tell you whose order that was.

Luke was smiling broadly as Aaron continued his order.  Aaron always asks IF he can have the menu items he wants, as if he needs permission from the server.  I don’t even try to correct him anymore.  I figure it’s part of Aaron’s charm.

We munched on chips and salsa while waiting for our meals, Aaron pretty much talking non-stop.  Luke was very attentive and kind, checking on us often with a big smile. 

A few young men walked by our table.  The stare one of them gave Aaron made me want to tell him to take a page out of Luke’s playbook.  Aaron is NOT an alien so quit looking at him like he is, I wanted to yell.  Although as I have often said, Aaron would think looking like an alien is super cool!

 I did have to monitor situations sometimes as we sat in our booth that Aaron wanted.  He turned to stare at the people sitting near us, uncomfortably so, and I had to remind him to turn around and not to stare.  

“I just wanted to see what they were eating,” he explained.

Then came the reminder to not point at the large group of people behind me as he informed me that they must be having a party.

“But I just think they’re having a party,” he told me as he pointed again!

Luke stopped again to check on us.

“Can we have chips and salsa to take home??!!” Aaron loudly asked while I protested and Luke said, “Sure!!” much to Aaron’s happy laughing delight.

Finally, Aaron was full, and we were ready to go.  As we stood up, Aaron edged slightly close to the woman in the booth behind us as he stared down at her plate.  I was trying to gently pull him back.  Her husband eyed Aaron suspiciously and I hoped to catch his eye and apologize but he was fixed on Aaron.

I again explained to Aaron how inappropriate and embarrassing that was as we walked away while he again explained that he just wanted to see what she was eating.  

And again, I ran interference as we passed the hostess desk, and he smelled the scent of those toothpicks.  I succeeded in averting the toothpick theft this time as the eyes of the host eyed Aaron once again.

We made it inside our hot car.

WHEW!!

Another lunch on the books.  

Another group of people with varying impressions of our Aaron.

Another reminder that when an Aaron walks into your life for even this brief time, just smile like Luke…disregard Aaron’s pointing…understand that he is curious about other people’s plates and parties…and whatever you do…

DON’T STARE!!

I just might let him point at you and stare back!  

Burping and Serving

A friend posted a story on Facebook today that deeply touched me.  A prisoner talked about the huge impact made on a rough group of fellow prisoners and himself by none other than a nondescript janitor who had worked for years at the prison.  This little woman spoke to those hardened men as she held her broom and her words were used by God to pierce their hard hearts with the gospel.  

He said, “Because that janitor, a woman without a title, without a stage – she delivered a sermon that still gets me choked up.  She didn’t come to save us.  She came to serve.  And in doing so, she became the loudest gospel I’d ever heard.”

Our family has been through some tough times lately.  Even though the worst is hopefully over, by God’s grace, things are still upended in several ways.  Last week I knew that we were entering into a time where we as parents and grandparents would be needed daily.  I was wondering how we would do it all.  My wondering and planning were quickly turning into worry, and even into dread.

A week ago yesterday was the first day of our “new” duty, so to speak.  And in the very early quiet of that morning, God reached down through what I was already reading and spoke perfect words of encouragement to me.  

“Set your mind on things that are above…”. (Colossians 3:2)

God reminded me that what I needed to do was remember that every act of service I do is really for Him.  To set my mind on serving Him through even the most mundane acts is such a joy.  And truly, this week God has given me strength and peace and joy that can only come through Him.  

That very afternoon I had a call from a precious friend.  I was so excited to tell her how God broke through my dread and worry and instead gave me such settled peace and joy.  This friend cares for her family so well, including her special needs son.

“Why is it,” I asked her, “that we so often think we have to go to the mission field before we’re really serving the Lord when He gives us all these ways to serve Him in our own families?”

Every mile driven.

Every baby burped.

Every poopy diaper changed.

Every song sung.

Every story told.

Every ball thrown.

Every bubble blown.

Every meal cooked.

Every cheek kissed.

Set my mind on things above, God.  On You.  On the joy of serving You as I love and help my family.

That little prison janitor touched toughened hearts through her acts of service.  Her stage was a prison meeting room, holding her broom and mop, her dirty bucket of water sitting beside her.

God loves using the weak things of this world to confound the mighty.  

Jesus washed feet.  

He touched lepers and unclean women.

He ate with sinners, with those who were cast out of proper society.

What stage do you have today where God can use you to serve Him?

Holding a baby?

Holding a book to read to your child?

Holding a door for the one in the wheelchair?

Holding a crying friend?

Holding the hand of your dying spouse?

Oh, may we not desire the center stage with the lights and the applause.

May we instead desire, and fully realize, that serving God right where He has put us in the center of His will is the very best use of this life He has given us.

My Adornment

It was Christmas Eve morning, and I was preparing for a day full of cooking and family fun.  The day before, I had pulled off my plan for an “Aaron day” without a hitch.  I wanted him to have time doing what he loves before all the commotion of Christmas wreaked havoc with his routine and therefore with his behaviors.  Our son and his girlfriend, just in for the holiday, joined us at All Star Sports for some Aaron-style fun.  Afterwards, we ate at Old Chicago, a favorite of Aaron’s.  It was a great time!

But early the next morning I heard Aaron having a big seizure.  This was a bed wetting one.  So mixed in with my cooking and all the other Christmas prep, I found myself hauling loads of bedding to the laundry room.  My main emotion was sadness for Aaron that day as he had two more big seizures over the next several hours.  

Yet these moments also drive home to me the fact that caregiving is my life.  It’s a life I never envisioned for myself when I contemplated marriage and motherhood as a young starry-eyed woman.

Every mother lives a life of self-sacrifice in many ways but having a child with special needs of whatever kind increases that role in ways she never knew.  Any caregiving role is the same.

That is why I was so impacted by some verses I read one morning.  Paul was talking to Titus about practical ways that we as believers are to live out the gospel.  In chapter two of Titus, Paul gave instructions to older men and women as well as to the younger men.  

He ended that section by urging slaves to conduct their lives in a way that they would “…adorn the doctrine of God.”

In that culture, slaves were nothing.  They were the lowest of the low.  Yet Paul told Titus to encourage them to adorn the doctrine of God, the gospel.

This is a high calling for such a lowly people!

The word “adorn” carries the meaning of arranging jewels in a setting that displays their beauty.  

I love what John Stott said about these verses:  “…the gospel is a jewel, while a consistent Christian life is like the setting in which the gospel-jewel is displayed; it can add lustre to it.”  

Our human tendency is to equate importance with the “big things.”  Red carpets, book signings, conference speakers, a record contract.  

Not with wet bedding, doctor visits, behavior issues.  

Not with dementia, hospice, hospitals, infusions, cancer…

But the gospel shines brightest in the darkest places.  This is where God is especially honored and given great glory.

How?  By our faith being seen in our service to the ones we are caring for.  By yielding to God’s plan for our lives with trust and peace, even through tears or anger or resentment that inevitably comes at those vulnerable moments.  

It’s a matter of my heart, not my surroundings.  

“Slaves, in all things obey those who are your masters on earth, not with external service, as those who merely please men, but with sincerity of heart, fearing the Lord. WHATEVER YOU DO, DO YOUR WORK HEARTILY, AS FOR THE LORD RATHER THAN MEN.”   (Colossians 3:22-23)

Where do you find yourself today?  

Remember that the seemingly lowest place is the place of high calling in your life as a believer.  

Even if we feel like no one notices our service, God still urges us to shine with the beauty of the gospel.  God notices and that is all that really matters. 

 

Am I Ready?

It was November 7, 1984.  Gary and I lived in Colorado Springs.  I was one week into my 9th month of pregnancy with our first child.  Gary had just returned home from flying his Army Cobra helicopter.  I headed up our stairs when a pain hit me.  Gary saw me from our bedroom as he was changing out of his flight suit.

“Now?” he asked with surprise.  

I soon knew that, yes, the time was now.  We hurried to Fort Carson and just a few short hours later we welcomed Aaron into the world…into our world.  

I had been busy making all his nursery items.  The yellow and white gingham curtains, bumper pad, and changing table cover were waiting on Aaron.  But there were still things to do, like putting the crib together and finalizing all the other details of his cute yellow duck nursery.  We just weren’t all the way ready for Aaron to join us three weeks early!

In so many other ways over the 40 years of our life with Aaron, I have found myself still not ready.  Not ready for this journey of Epilepsy, Autism, and having our adult son still living with us.  Not ready for the hundreds of ways that our life is not at all what we thought it would be as we held our little 6 lb. 4 oz. squirming bundle in that old military hospital on Fort Carson.

In so many ways, Gary and I are set apart from our peers even at this stage of our lives.  We are not free to come and go as we might wish.  Aaron is entwined in every decision we make.  And when I meet someone new and we are getting acquainted, the usual response when I tell them that we still have our adult special needs son living with us is, “Oh.”  Most people don’t know what to do with that scenario and so they quickly move on to other topics. 

Aaron can be so funny.  He is just who he is, too, especially in public.  But even that can be a bit embarrassing to us as he does his Aaron things, oblivious to what others are thinking.  Like sitting in the grocery aisle to examine his latest food find.

Or sitting on the floor in every waiting room now so that he can work on his sticker book, even rearranging a chair or table if needed.

I have thought a lot about Mary especially now as we retell the Christmas story at this time of year.  When Gabriel told her that she would become pregnant and give birth to Jesus, God’s Son, she humbly said, “Behold, I am the servant of the Lord; let it be to me according to your word.”  

She must have experienced so much embarrassment as her condition became known.  Did anyone other than Joseph really believe her story?  The gossip, the looks, the questions…how she must have been set apart from everyone in that small town.  

Mary gave birth far from home, surrounded by animals in a dirty stable.  Not even her mother was there to help her.  I doubt that the scene was like the ideal pictures we see on our Christmas cards. 

Then the move to Egypt to escape Herod and coming back to their hometown of Nazareth a few years later where everyone knew Mary’s story of her past.  

Was Mary ready to be the mother of Jesus?  Ready for the turmoil that surrounded Jesus? Ready for the fear as she watched Him being hated and persecuted?  Ready for the extreme heartbreak as she watched him tortured and put to death?  

I doubt that she was.  But she had already made the most impactful decision of her life when she yielded to God’s will for her life.  

That same yielding to God is what brings me the deepest peace as well, even in the fear of Aaron’s seizures.

Peace, eventually, during the frustrations of his behaviors.

I know, and so can you, that “…the God of peace…even Jesus our Lord, will 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)

We don’t know what it is that will please God in our lives.  

But we can be ready if we know and follow Him, trusting our loving God as we, like Mary, say, “May it be to me according to Your word.”

The best gift we can give Jesus is our heart and our will.

May each of you have a very blessed Christmas season as we celebrate the birth of such a Savior!  

No Water! No Deal!

Wednesday morning seemed just like any other morning until my husband stepped out onto our back patio and discovered water bubbling up into our back yard and between our bricks on the walkway.  Oh boy!

Gary was able to cut the water off at the meter and line up a plumbing company.  They came, did a lot of looking and some digging and some poking and some figuring.  Then we did some questioning and some signing and some down payment paying…only to be told that they couldn’t get to the job until the following Tuesday.  What?!  

That’s a LONG time without water!

So, we did some calling and some discussing and some cancelling and some finding of new plumbers.  

We also did some filling of large water containers that Gary wisely has had on hand for just such emergencies, turning on the water just long enough to get the job done.

The new plumbers came the next day and got right to work.  They worked late, digging and examining in a trench that starts in our back yard, wraps around the side of our house, and ends near the street in our front yard.

There were bumps along the way, like damaging a sewer line that thankfully was an easy repair but meant no flushing all day Friday.  TMI, I know, but I’m just being real.  And it was getting real bad!  

Location services had to come out more than once to correct mistakes they made in locating the cable and other lines.  That’s comforting, right?

The workers were so nice and a pleasure to have around.  They worked very late Friday night and were able to get our water back on!  You can guess the first thing I did.  Actually, it was the first three things I did…flush our three toilets!!  And clean like a mad woman!

The plumbers were coming back on Saturday to hopefully finish the job, but heavy rains during the night and all day Saturday put a stop to that.  Now the trench is full of water and the continuing rains leave us unsure of when the work will be completed.

But we have water!!  And more importantly, Kansas has gotten some MUCH needed rain.  We are not complaining!

As this all progressed, we were concerned about how Aaron would handle it.  Having no water is a huge deal, and huge deals are often a no-deal to Aaron.  He surprised us, though, with how well he did.  He was intrigued with the digging and getting to see the pipes under the ground.  The workers were so kind to him.  They got a kick out of his excitement.  The supervisor even saved the ruptured piece of pipe to show it to Aaron and explain what had happened.  

But by Friday morning Aaron was close to being done with all the no water business.  I knew we were near a boiling point with him when he told me that he was NOT letting me have any of his Halloween candy like he had promised the night before.  

And to finalize his decision, he added:  “I am NOT making a deal with you, MOM!!”

Imagine my surprise when later he walked in the room and laid this on the desk in front of me.  

He chuckled and rubbed his hands together.  

“We don’t need a deal,” he said.  

“You want me to have this?” I asked.

“Yes!” he answered.  “Eat it!” 

He understood when I told him I would wait…that candy first thing in the morning is too much for me.  

All this situation with having no water, though, has made me think about something that has been on my mind a lot since the horrible hurricane damage in the southeast.  I have thought and thought about the impact of such terrible personal destruction on those with special needs.  

How on earth are they surviving?

How are families handling the upheaval and its effects on their special family members whose whole world has been turned upside down, destroyed, and perhaps forever gone?

My friend in western North Carolina talked to me about her daughter who has autism, how she stepped up to the plate at the beginning and was so helpful at home and with neighbors.  But as time went on it was getting harder and harder to handle the constant pressure and stress of routines being completely disrupted and of doing things not normal for her.  Then come meltdowns and anger, which are terribly difficult for the family already dealing with more difficulties than imaginable.  

I have wondered what Aaron would be like in a situation like this, where everything he knows and expects and demands is gone.  I can’t even fathom it.  A couple days without water and he was approaching the done point.  Imagine everything being gone for weeks and weeks, forever even, and what that would do to him.

Imagine the untold number of families in these areas whose special children or other family members are enduring just that, a million times worse than our small inconvenience.  

So many special needs individuals with so many needs that are special to them.  Needs they can’t control but that must be met as much as possible.  

How they need our prayers!  

Let’s not forget them.  

Lean On Me, Aaron

Yesterday Aaron and I went to his annual PCSP meeting.  How many years have we had these meetings?  More than I can nearly remember.  

His case manager and I decided several years ago to hold our meeting at one of Aaron’s favorite restaurants, Carlos O’Kelly’s.  Aaron really doesn’t like meetings that discuss him unless we’re letting him do all the talking about really important stuff.  You know – matters like whether Pluto is a planet or not, what solar flares are, and are black holes really sucking in stars?!  But mulling over matters of his likes and dislikes, what he is or is not allowed to do at his day group, what his goals are, and so on and so forth…well, Aaron would rather leave the room and find someone who IS wanting to hear him talk about planets, flares, and black holes.  But put a plate of enchiladas, chips and salsa in front of him and he’ll endure our needless talk.

Aaron had gotten out of bed super early the past two mornings.  Space videos on YouTube were calling to him, I guess.  As we sat in our booth munching on chips and salsa, he started leaning and leaning until finally he was resting against me like a little child.  

I eased him over and he sat straight for a couple minutes, but then he began leaning into me again.  I knew that he was sleepy from his very early mornings and from his meds, but still I kept propping him up so he could eat and participate in the meeting if needed.

Later, as I drove us home, I looked over at him sleeping soundly in his seat.

  

He is sometimes showing that age is creeping up on him.  He even seems a little feeble at times, like he did as he leaned on me during lunch.  I know that seizures are taking a toll.  He has memory loss, tremors, drooling sometimes, and other effects of both seizures and medicines.  

My heart is stirred with so much love for him.  So much concern for his life now, and for what the future will hold for him.

Yet there are those other moments, too…more and more, it seems.  Moments when Aaron is frustrated when things are not going his way at his time.  He is becoming more impatient with waiting, more set in his routine, and more expressive when those frustrations mount.

Therefore, Gary and I are finding ourselves more stretched on some days.  Our own frustrations mount along with Aaron’s.  Stress seeps through every crack in our strong armor.

I look at Aaron leaning on me, and I know that he needs me when he is struggling, both physically and emotionally.  His reactions are often beyond his control.  Sometimes that fact is hard to remember.

So, who do I lean upon?  

God.

Yes, Gary and I support each other.  I have amazing friends who walk a similar journey to ours.  I have great family on both sides.

But it is God Who leans down to me as He did the other night and fills me with deep peace even as the storm swirls around me…Who understands my struggles…Who speaks comfort to me…Who assures me with these words:

“Trust in the Lord and do good; dwell in the land and cultivate (feed on) faithfulness.”   (Psalm 37:3)

I can feed on so many things like anger, comparisons to others, resentment…the list goes on.  

Or I can obey God and lean into Him.  He understands my need.  And I must understand my need to trust Him and do good.

To feed on faithfulness even when I just want to walk away.

Faithfulness to God, and faithfulness to our Aaron.

Knowing that this is also true:

“Commit your way to the Lord, trust also in Him and He will do it.”  (Psalm 37:5)

Commit.  Lay on God’s shoulders the heavy burden.  

He is strong enough for all my burdens and He is there for me to lean upon when I am tired and done.

And oh, I cannot express enough about the grace that God gives me to continue putting one foot in front of the other, day after day with Aaron.

It’s not one bit about how strong I am or that God gave Aaron to such an amazing parent.

But it IS all about how God meets me in my most down moments with His sweet peace and His words that speak such joy and comfort to me.

And as I learn to lean on God, I can be there for Aaron when he needs to lean on me. 

God holds me up so that I can do the same for Aaron.  

That’s even more amazing than all the black holes in the universe!

Good in My Nazareth?

Tis the season for the Christmas story to be at the forefront of people’s lives.  And in the forefront of that story is the little town of Nazareth.  Gabriel was sent there to tell Mary that she was the one whom God had called to bear and give birth to His Son, Jesus.  

Nazareth…a very small dusty town.  Pretty much a place one would pass by rather than linger there for any reason other than to perhaps get a drink of water.  Larger, more exciting towns were nearby.  

Years later, when Jesus was calling His disciples, Philip went to find Nathanael.  He told Nathanael that they had found the One foretold by Moses…Jesus, of Nazareth.

Nathanael’s response?

“Can any good thing come out of Nazareth?”

That seems to be the reputation of Nazareth in a nutshell.

But Mary lived there, and her betrothed, Joseph.  Two unknown people in an unknown town…a town nowhere mentioned in the Old Testament or early Jewish literature.  

But the angel said that Mary had found favor with God.

How?  How do you make a name for yourself in Nazareth, of all places?

But that’s just it.  Mary didn’t set about to be noticed by God.  She wasn’t trying to do great things.  She simply lived her life for the glory of God in every mundane daily task that was a natural part of living in Nazareth.

Less than an hour ago I stood by Aaron as he had his third seizure in four hours.  This one was very hard.  My heart hurts.

Afterward, I sat by our Christmas tree and pondered this life that God has given me.  In many ways, I can say that this is my Nazareth.

I have had a taste of the “other” side of life.  Awards, travel, lots of ministry, etc., etc.  

But as time has gone by, my world has narrowed a lot.  The life of a long-term caregiving parent is not exciting.  It is not a life that others point to as they wish they had MY life.  

And all of my fellow caregiving friends know “the look.”  It’s the look that crosses a person’s face when they ask what you do or if you can join in this or that, and you tell them your situation.  So often there is no real understanding.  Sympathy, perhaps.  Compassion, sometimes.

But it’s like they don’t know what to do with you.  

Kind of like being from Nazareth.

But God has a purpose for each of His children in His kingdom.  Even us Nazareth folk.

For God says that He works all things for good in the lives of His followers.  

I have good purpose, right here in my Nazareth.

For every piece of wet bedding washed, every meal cooked, every bathroom cleaned, every doctor appointment, favorite show watched and game played, every story listened to for the 500th time – is just what God has for me to do where He has put me.

He put Aaron with us.  I can look at my life with him as my ministry or as a misery.

Human nature makes us feel that we’re not really being of value unless our calendars are full of events and we are free to come and go as we choose our opportunities.  And this is wonderful for many people.

But for my other Nazareth people…whatever your Nazareth is…know that there ARE good things that come out of Nazareth.

Claim your purpose where God has placed you!

Be faithful there in the messy and the mundane.

In so doing, you are bringing delight to God…and there is no higher calling.

Even in Nazareth.

Do You Know Me?

One evening last week, Aaron had a money gift burning a hole in his pocket.  He knew exactly what he wanted, so off we went to Walmart to look at throw pillows.  He wanted one to rest his book on while reading at night.  Soon we were walking down the main aisle toward the check-out lanes, Aaron happily holding his very soft black pillow.  

Walking toward us was a cashier whose lane we have used several times when we have checked out.   While in her lane, Aaron, as usual, talks and talks to her while she scans our items.  He discusses with her what we have bought..what he likes that we have bought..does she like those too?…what he wanted but Mom wouldn’t let him get…would she want those?…why or why not?…and anything else that he can quickly grab out of thin air before it’s time for us to walk away.

Aaron spied her as she walked toward us.  She gave us a nice smile.  I said hello and smiled in return.  Then Aaron stopped beside her and stared.  She wasn’t quite sure what to do.

“Do you know me?” he asked her.  

“Well, I scan your items sometimes and I remember you,” she replied, relaxing some and smiling at Aaron.

“It’s almost my BIRTHDAY!!” he exclaimed.

She wished him a happy birthday as I took his arm to lead him on and thanked her.

Oh, Aaron.

So unabashedly himself.  

Of course she remembers you, I thought to myself.  LOTS of people remember you.

But then it hit me.  It’s one thing to remember Aaron.  It’s quite another thing to KNOW Aaron.

“Do you know me?” he asked.

Aaron wasn’t diagnosed with autism until he was 14 years old.  We remember many incidents during those years before his diagnosis.  We remember his behaviors and quirks increasing but everyone attributing it to his seizure meds or the effects of the seizures themselves.  It was an extremely stressful time.

His autism diagnosis answered so many questions for us.  Off we set on this journey of understanding autism as it related to Aaron.

More importantly, however, we began to really understand Aaron through the tangled web of autism.  

In other words, we were getting to know Aaron for the complex person that he is.  

To REALLY know him.

It’s fun to know the funny side of Aaron.

We smile at the quirky side of Aaron.

And to enjoy the things that Aaron enjoys.

All those traits, and many more, are easy to roll with and relish.

But…and there’s always a “but,” isn’t there?

But there is an equal part of Aaron that can be very stressful and upsetting.

Sometimes, the upsets are mild, like when he uses multiple utensils for every meal.  Or doesn’t even use all of them but he needs each of them for reasons that are very real to him.  

Or how he can’t have just one CD of a particular artist that he is listening to but must have all of them out of the cabinet at the same time, strewn around the van or hidden under his bed.

How his routine and schedule are so important to him, to the point that he has a very hard time yielding any of it to our schedule, or to understand interruptions.

How hard it is so many times to wait on us when we’re going somewhere.  His impatience turns to anger, which can spread quickly to us.  

And then he carries that anger on some days to his day group, where he takes it out on others and has a no good, very bad day.  Here he is on one such very bad day.

It’s heartbreaking to see his struggles.  

“Do you know me?” I imagine him saying to us or to those who work with him.

Knowing Aaron…really knowing Aaron…takes lots of time and experience.  Lots of hard knocks and long nights and balancing acts.

Many days it’s one step forward and two steps back.

“Do you know me?” he asks again.

Sometimes we answer yes through gritted teeth, through tears, or anger and harsh words.

And then guilt.

Guilt that even though we know Aaron, we don’t always remember how he will react to even the most mundane things…things like a facial expression, a tone of voice, or a hand movement that pushes him over the edge.

But there is another thing we know.  

We know that God designed Aaron to be truly unique.  

God gave Aaron to us to love and to care for.  

And God knows that we need His strength and wisdom every single day.

“Do you know me?” Aaron asks again.

“Yes, Aaron,” we reply.  “We know you, and we will always remember that we love you in all your variety.”