Category: Caregiving

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.”

The Bitter Root

Several years ago, I had an experience with a small weed in one of my front yard flower beds. 

 I had become so busy with my other gardening that I had put off the task of pulling that little weed.  It didn’t seem like such a big deal. The outward growth, though, hid what was happening under the ground, out of sight.

 Here is what I wrote:

One hot day as I worked among my flowers, I looked down and saw that this little weed had grown significantly. Still, it wasn’t huge but it sure was larger than I had noticed before. Silly me, I thought. Why have I been waiting to pull this once-little weed? I just need to get rid of it now, I reasoned. I reached down and gave the weed a pull, and nothing happened. I pulled a bit harder, and still the weed didn’t budge. I gripped harder on the small growth, gave a firmer yank, and still it sat firm in its place in the dirt. This small, harmless weed was certainly being stubborn! It wasn’t letting go of its foothold very easily at all! I was so deceived by the small growth that I could see that I was in turn shocked by its apparently deep growth in the soil. I once again got a firmer hold, jiggled the weed back and forth, pulled with all my might and finally out came the root. What a surprise! The root was very long – much longer in proportion to the rest of the plant. While I had procrastinated about getting rid of the little weed or argued with myself about how harmless the little weed was, this small weed was growing a deep root system that could have damaged or killed my pretty Coreopsis. There was no excuse for my neglect – a wise gardener knows better.

Sometimes I let attitudes fester in my heart…attitudes that are, quite frankly, sin.  It’s easy to say, “Well, now, you have every right to feel that way.  Don’t be so hard on yourself.”

And every time I give myself that little pep talk, I am letting that root grow deeper and deeper in my life until it’s not so little anymore.

I have been keenly aware of this fact as Gary and I care for Aaron.  Usually after a stressful period, often involving Aaron’s anger, we find ourselves talking together as we try to understand him and handle his issues in the right way.  So often, solutions are hard to come by.  The effects of living long-term with him spill over into every area of our lives.  We go back 17 years to the time we were making decisions about his future.  

Did we make the right choices?  We were headed in one direction and the doors closed.  Or did they?  

I am constantly reminding myself that all those years ago we were seeking God’s will and we were desiring to walk in that path of God’s choosing for us and for Aaron.  I must consciously trust God today with our past decisions…decisions that touch us in ways today that we never dreamed.

The impact of having Aaron with us now affects our “golden years” in so many unforeseen ways.  We know that future decisions will be upon us some day, but there is a bigger issue for me right now.

That issue is bitterness.  How easy it is to find ourselves saying, “If it wasn’t for Aaron, we could do this or that, go here or there, etc., etc., etc.”  

And soon my eyes are on the hindrances of life with Aaron rather than the joy of being in God’s will…of doing His work within the walls of our home…of loving Aaron and caring for him.

We are physical creatures.  We get tired.  We get discouraged.  

And sadly, we compare ourselves to others in those vulnerable moments when we’re scrolling through social media or having conversations.

Before I know it, the bitter root is taking deeper root in my heart.  And while I understand that my feelings are normal, I also know that I cannot let myself perch there.  

I must not settle for a life of bitterness.

These verses spoke to me so deeply this morning:

“O Lord, lead me in Your righteousness because of my foes; make Your way straight before me.”   (Psalm 5:8)

My foes…my enemies…are those attitudes within me that contradict what God says is right.  A big one is this issue of bitterness over the result of God’s past leading.  

We trusted Him then to put us on the right path, and so we can trust Him now to provide all we need to face the results of walking on that path.

I need God’s leading and His righteousness to overcome that bitter root that seeks to take hold.  Here is the result of trusting Him:

“Let all who take refuge in You be glad; let them ever sing for joy; and may You shelter them, that those who love Your name may exult in You.”  (Psalm 5:11)

Paul told the believers in Ephesus that through the power of the Holy Spirit, they could be rooted and grounded in love.  

Not rooted in bitterness but rooted in love…the love of Christ seen in their lives.

I must stop and check where I am allowing my roots to grow.  We all do, right?  We have so many hurts in life…so many stresses that pile up around us.  

O Lord, lead me in Your righteousness.  Do not allow me to lead myself into bitterness.  

I love this old hymn.  The lyrics speak well to each of us, wherever we are in our life of following Christ.

He leadeth me, O blessed thought!
O words with heav’nly comfort fraught!
Whate’er I do, where’er I be
Still ’tis God’s hand that leadeth me. 

Refrain:
He leadeth me, He leadeth me,
By His own hand He leadeth me;
His faithful foll’wer I would be,
For by His hand He leadeth me. 

Sometimes ’mid scenes of deepest gloom,
Sometimes where Eden’s bowers bloom,
By waters still, o’er troubled sea,
Still ’tis His hand that leadeth me. 

Lord, I would place my hand in Thine,
Nor ever murmur nor repine;
Content, whatever lot I see,
Since ’tis my God that leadeth me. 

And when my task on earth is done,
When by Thy grace the vict’ry’s won,
E’en death’s cold wave I will not flee,
Since God through Jordan leadeth me. 

(Joseph H. Gilmore)

Act Happy, Mom!

Over the years of blogging about our life with Aaron, I have sought to inform and educate others about the complexities of autism.  There are so many parts and pieces to autism…so many ways that Aaron’s life, and therefore ours, is affected by how autism makes him function.

Oh, if you only knew how many times I have thought or even asked this question of Aaron:   “Can’t you just…….?”  

Fill in the blank.

I have even had that question asked of me concerning Aaron.

“Can’t you do something with Aaron?!”

Or this one:  “Have you thought about….?”

Or:  “Have you tried….?”

Now, I do not mind helpful advice or constructive criticism.  However, one must be careful to truly understand a condition before offering advice on handling that condition.

Even Gary and I, with our years of experience, can at times find ourselves floundering amid Aaron’s stubbornness about certain situations.  

Aaron is very wrapped up in his own comfort and routine, sometimes to the detriment of everyone around him.  Anger on his part can set in quickly when his perceived needs are not being met in the way that he wants them to be met.  

It’s narcissism at its finest…or not…but is born out of Aaron’s deep-seated requirements of life, not out of pure selfishness.  Some incidents seem incredibly selfish, though, and there are times to handle that situation.

Such was the case one evening not long ago.  I was preparing a meal for supper when Aaron came into the kitchen and asked what we were having.  The meal wasn’t one of his known favorites.  And he let it be known right away that he was having none of it.

I did not budge when he asked if he could have something else to eat.  I reminded him that I do not run a restaurant and that he could eat what we were eating.  I told him I knew he would like it if he just gave it a try.

He was most unhappy!  

After several trips into the kitchen, where he angrily informed me that he hated that food and would NOT eat it, I knew that nothing I said was going to turn him around.  In fact, any words from my mouth just added fuel to the flame.

This is when I have learned to shut down and no longer respond to anything Aaron says.  I do not talk to him or respond to him.

And he detests that.  It makes him very uncomfortable when Mom doesn’t talk to him, but the silence is the best way I have found to defuse him and to show him that I am done with this scene.

As supper was nearly ready, he began to follow me around, talking a lot and hoping for a response from me.  Finally, he asked a question that needed an answer, so I responded in a very flat voice.  Aaron knows that this voice of Mom’s is still an indication that he has crossed the line. 

“Mom!” he urgently said, “you should answer like you’re happy that I’m telling you!!”

I had to smile at that one and was glad that my back was to him.

But you see, Aaron is clueless about how his treatment of us affects us.  It’s good for him to see the effect in a tangible way, as in my silence and lack of enthusiasm.

He did eat a little dinner with us, and we were able to talk to him some about his attitude.

Then later, Gary and I slipped out to the porch for a little time together.  We both needed a breather.

But we weren’t stealthy enough, for Aaron heard us and soon darted out the door and made himself right at home with us.  There he sat, seemingly oblivious to what had happened earlier, all primed and ready for a long talk with his captive audience.

Of course, he didn’t talk about his earlier behaviors.  He didn’t talk about his feelings, and he most definitely did NOT talk about our feelings.

Aaron wanted to fill our ears with his latest discoveries from reading his book on UFOs.  He wanted to talk and talk and talk about Area 51, asking tons of questions and waiting for our answers.  

Ah, Aaron…slipping into his comfort zone and unaware of the fact that this is not our comfort zone at all.  

Such is the give and take of living with autism.  My silence had pushed Aaron out of his comfortable place.  Now his talk of aliens and UFOs and Area 51 showed us that Aaron was ready to get back to normal…his normal, that is.

And yet his normal has in a strange way become our normal, too.  We know that Aaron is happy again when his conversation turns in these strange ways.

I guess Gary and I have become a little strange ourselves sometimes.  

And strangely enough, we didn’t have to act happy.  

We truly were just as happy as little aliens in a UFO!

Complaining in the Rain

It’s been terribly dry here in Kansas for way too long.  The wells out in our “used-to-be-country” neighborhood are running very low.  Some have dried up.  Some of the ponds used for cattle are just puddles now.  And the wheat crop is predicted to be the poorest in 60 years.

Therefore, I was happy to hear a low rumble of thunder early this morning.  As I sat on our patio and finished my quiet time, the sky began to darken.  I was very thankful for the rain that began to fall.  It was a gift from God!

Aaron was out of bed not long after and he sat with me to enjoy the rain as well.  Soon we were both ready to head out the door for our Meals on Wheels delivery.  The once gentle rain was now a downpour.

“Well,” I told Aaron, “we really need this rain so I’m not going to complain about it.”

We picked up our meals, loading them into the van as the rain came down and our clothes began to get wet.  At our first house, I opened the side van door and bagged the food.  Rain was a cold presence on the back of my shirt as I tried to lean in the van.  Aaron had already run to the client’s door, so I juggled the bag of food and my large umbrella, getting even wetter.

We chatted a minute with our friend, Aaron crunched in the corner of the small porch under a tiny awning and me under the umbrella.  Rain washed over us again as we got in the van, feet now soaked from the standing water.

As we backed out of the driveway, I happily made a little rhyme.

“Oh, the rain is a pain but I’m not going to complain!” I sang to Aaron.

Amazingly, he tolerated my silliness and off we went to the next house.  More rain, this time with some mud from the unpaved road as well as huge drops of water landing on us under the very low hanging branches at her uncovered door…branches that caught my umbrella and made it useless.

“This is great!” I exclaimed as we handed her the food.  “We do need the rain!  See you next week!”

By the fifth house, the rain was coming down even harder.  We ran up the wheelchair ramp, where our client was already at her door.  She was taking the dog bones that Aaron handed her for her two dogs.  I handed her the rather soggy bag of food and asked her how she was doing.

“I’m doing just fine,” she said, her face glowing with peace as she sat there in her wheelchair.  

She looked then at Aaron.

“Thank you so much for the dog bones,” she told him.  “My dogs love you for that.”

Aaron beamed.  Then she handed him one of the bones so that he could give it to her rambunctious dog himself.   She smiled as much as Aaron as he so excitedly watched the dog eat his bone.  

“Thank you and God bless you,” she said as we turned to leave.  I noticed how pretty she looked…how content despite her situation.  

At the next house we got to see our friend who had a serious fall a couple months ago.  She has been in the hospital and in rehab, and today was the first time we have been able to see her since her accident.  

Her smile was huge as she greeted us.  I wanted to talk about how she is doing but she wanted to focus on Aaron, hearing all about his recent seizure fall.  I finally managed to ask about how she’s doing, and she too said that she was getting along fine as she downplayed all that she has been through.  She is a sweet believer, and her joy is evident.

My joy was getting harder to muster as we went once more out into the rain.

“Whew!” I said, “I’m getting tired of this rain.”

“But I’m glad we’re getting the rain,” I quickly added as I remembered my earlier determination to be thankful.

My heart felt that little pinch of the Holy Spirit reminding me of just how much this morning is a picture of my life.

Oh, it’s easy to be all spiritual and thankful while I’m sitting on the patio, protected from the rains of life.  I can be an observer and have all the answers with all the right verses and attitudes as long as I’m not actually getting wet.

But let me step out into the storm and see what happens.  Getting wet and cold and muddy can quickly begin to take a toll on my patio attitude.  Soon I’m not so thankful for the rain that I had earlier said I needed.

The splashing of life’s trials has a way of diminishing my once-strong faith.

I feel cold.  Tired. 

And the path can make my feet muddy.  

Misery sets in, no matter how much I said I needed this weather sent from God.

No matter how much I quote Romans 8:28.

And while I may not be actively shaking my fist at God, I find that the flame of faith and joy in my heart is flickering in the rain.

It’s difficult to stay strong and positive in the downpours, especially prolonged storms that have no foreseen solution or resolve.

Honestly, I have been struggling some with Aaron issues over the past few months. Feeling discouraged more than I should.

“Lord!  I know I said that I need whatever you send, and that I can trust you.  But I’m getting tired and wet and muddy and uncomfortable!”

Yet the Lord, in His patience, used my experience this morning to prod my heart.  

And He used the most surprising people to touch my soggy spirit…people who have every reason to be extremely tired of the rains in their lives.

“Rejoice in the Lord always; again I will say, rejoice! 

 Let your gentle spirit be known to all men.  The Lord is near.  

Be anxious for nothing, but in everything by prayer and supplication WITH THANKSGIVING let your requests be made known to God.

And the peace of God, which surpasses all comprehension, will guard your hearts and your minds in Christ Jesus.”

Philippians 4:4-7

Love, With a Little Sad

Recently, Aaron has been listening to the Phantom of the Opera movie soundtrack.  He has seen the movie and heard the music before, especially listening to the CD over and over.  But time has gone by, and Aaron doesn’t remember what the story is about.

During lunch a couple days ago, as he asked questions and I told him the story, I realized once again the sadness wrapped up in the Phantom’s life.  I couldn’t hide it from Aaron if I was going to tell the story correctly.

“You know, Aaron,” I finally said, “it’s really in many ways a sad story.”

Aaron thought for a minute.

“You have to see it as love,” he said.  “Love with a little bit of sad.”

His comment blew me away.  I was legitimately speechless.

I’ve thought a lot about what Aaron said.  I realize that he, in those few words, so perfectly described our life with him.

This life of parenting a special needs child is not a cake walk.  Yet we know that what God has allowed in our life is for a reason…and God’s reasons are always good.  Maybe His reasoning doesn’t make sense all the time, but God is good in all that He does and allows.

Gary and I have choices to make every day as we parent Aaron.  Yet no matter what moments we face each day, we love Aaron fiercely.

What is our focus?  Is it love, or is it sad?

We can’t ignore the sad.  That would be denial.

We’re sad when Aaron has seizures.

Sad when sometimes those seizures cause serious injuries.

Sad when his seizure meds make him so sleepy and tired.

Sad when he must be poked with needles so often.

We’re sad when his behaviors break his own heart.

Sad that he still refuses to travel to meet his new nephew.

But wait.  I need to remember what Aaron said.

Love, with a little bit of sad.

We want our life to be lived with a major on love and a minor on sad.

Like the love we felt for him last night as we stood outside watching the beautiful lightning to the west, hearing the distant thunder along with Aaron’s deep happy chuckle.  

Seeing the love he has for animals of all sorts.

The way he takes huge delight in the unusual.

We love the joy he shows in sharing.

And the big smile he gives when I pick him up from his day group.

I love how he looked on the exam table at his last doctor’s visit, reading his UFO book that he couldn’t wait to show his doctor.

I love how he leans way over to listen to the music that comes out of the self-checkout register at Dillon’s, oblivious to all the stares.

I love his random love notes. 

 

And that he’s willing to take an occasional picture with Mom.

I love looking out the window and seeing this scene.

I love that behind every hard, frustrating, stressful, and sad moment…I can hold on to this fact – that God has given us our special Aaron to love and care for.

We have to see it as love…love with a little bit of sad.

God Sees When I Cannot

Here was Aaron yesterday morning:

No, he didn’t have a seizure.  He was just having a very hard time waking up to start his day.  It takes patience and wisdom on my part to deal with him when he wants to sleep late.  Sleepy Aaron is almost always grouchy Aaron.

A scenario like this isn’t life changing.  But lately, Aaron has been unsettled and extra-easily upset.  Is it the new little member of our family that he is struggling to accept?  Is he trying to establish his place of importance at home and at his day group?  Side effects of the meds he takes?  Or just the way his autistic brain functions in our world which is not always his world?

Probably some of all the above.

It’s been wearing on Gary and me lately.  Tiring.

I walked back to my desk after several treks into Aaron’s room. 

It hit me how crazy it is that at my age I am still actively parenting our son.  This is not at all how I ever imagined my life would be.

Don’t get me wrong.  I realize how very blessed I am in so many ways. 

But some days I wonder…

It’s easy to get mired down in the stress and frustrations, to the point that I lose sight of the path.

I feel much like Job, which I just read that morning.

          “Behold, I go forward but He is not there,

          And backward, but I cannot perceive Him;

          When He acts on the left, I cannot behold Him;

          He turns on the right, I cannot see Him.”  (Job 23:8-9)

It’s not just the path that I lose sight of.  Sometimes it’s God Himself that I cannot see.

Our emotions have a way of doing that to us. 

Our disappointments can blind us to God in our everyday lives.

BUT!!!

          “BUT He knows the way that I take…”  (Job 23:10)

I may lose sight of God in front of me or behind me…to my left or to my right.

BUT…God knows the way I take!

God hasn’t lost sight of me!

That word “knows” in Hebrew means “designates.”

The word “way” means the “course of life.”

God has designated the course of my life. 

God IS love and I know deep in my heart that His every plan for me is designed and wrapped in His love for me.

God also knows that I am but human…weak…questioning…fearful…sometimes angry.

Questions come easily when I am vulnerable.

Why does Aaron have to suffer?

Could You not have found another way to grow me, Lord?

If I allow myself to keep going down those paths, though, I will soon be off the path that God has for me.

That’s never a good place to be.

I need to be like Job, who in all his terrible suffering still said:

          “My foot has held fast to His path;

          I have kept His way and have not turned aside.

          I have not departed from the command of His lips;

          I have treasured the words of His mouth more than my

          necessary food.”   (Job 23:11-12)

Some days and many moments I don’t FEEL like I am holding fast to God or treasuring the words of His mouth.

But deep, deep in my heart I know that I do desire God’s will and God’s way.

We all go through the tough times, don’t we?  Some are brief.  Too many are prolonged…lifelong.

Oh God, show us every day that even when we can’t see You…You see us!

You appoint our path, hard as it often is.

Because in the hard is where we do more clearly see Your hand.

We feel your breath upon our faces as we wait before You, drying our tears and strengthening our failing hearts.

Then may we be able to say with Job:

          “When He has tried me, I shall come forth as gold.” 

Photo Worthy

We just finished the Thanksgiving season with all the family gatherings, delicious food, and lots of photo opportunities.  Now the oranges and golds are being replaced by the reds and greens of Christmas.  More pictures to come, for sure!

Already our social media is brimming with the pictures that others are sharing of their Christmas decorations.  So much beauty and creativity!  I love doing that every year, sharing the warmth and glow of the season.

But the brightness all around us, even if we only see it in a photo, sure can make the other side of life seem even darker than usual.

Other’s picture-perfect moments, if compared to some of ours, seem off-the-chart wonderful…and ours.  Well, the line on our chart is going in the opposite direction.  Way down.

Several years ago, I saw this picture of Mary and Joseph after the birth of baby Jesus.  It’s probably the most accurate portrayal of the nativity that I have ever seen.

The call of God on their lives to be the earthly parents of Jesus came at a huge cost to them.  They knew that their reputations would forever be tarnished.  Gossip and judgmental stares would be their lot. 

But can you imagine the long trip to Bethlehem for the census?  The discomfort, hunger, dirt, and fear? 

Then the baby being born in an animal stable.  We don’t know for sure, but did they have help delivering baby Jesus?  How Mary must have wished for her mother to be beside her! 

Can you imagine how alone they must have felt?  No family that we know of to surround them with love and care.  No beautiful nursery ready for baby Jesus.  No comfort of a soft bed for Mary or Jesus.  No kitchen full of food, or a meal train at the ready.

Joseph and Mary submitted without reservation to God’s call on their lives.  That special call might seem sweet and incredible to us but to them I can pretty safely assume that on most days it was anything but that.

Over this past week, mixed in with all the beautiful pictures of family gatherings, I was receiving other pictures from our dear friends.

 Dan and Wendy have loved and cared for their Elijah (Speedy) for many years.  Speedy has an extremely severe form of Epilepsy.  He was hospitalized yet again during Thanksgiving, for six days.

Lots of tests.

Still, lots of unanswered questions.

Always, always there is so much love from these amazing parents for their Speedy.

But the pain…the grief…is so real. 

Raw…and deep.

Wendy and I talk a lot.  We speak the same language that comes from special needs parenting.  We can be real with each other.

We understand what Dale Davis was saying in his commentary on the book of Luke when he talked about the benediction in Hebrews 13:20-21…about the part that says may God “do in us what pleases Him.”

That part is scary because we don’t know what it is that will please God.

Can we be like Mary, though, and submit to God’s will for our lives?

“May it be done to me according to Your word,” Mary replied as she was called to be the mother of God’s Son.

“Submission is preferable to consolation, for consolation pleases us, but submission pleases God.”  (Thomas Hog, 1692)

Let that sink in.

There are so many times that I would far rather have the photo worthy moments of family and fun and excitement and adventure and beauty to be the posts of my life.

Not the incomplete family photos. 

Not the tiredness…anger…frustrations…comparisons…resentments that often accompany this special-needs life.

How about you?  What is it in your life that you feel isn’t photo worthy? 

What would you gladly trade in for a more beautiful shot?

Somehow, though, I know that God looks down on our broken and He sees the very people and things that bring Him the most glory and the most joy.

He sees way beyond this temporal into a plan for each life that goes far beyond what we will ever know on this old earth.

And that’s what is eternally photo worthy.

The Normal Road

As I drove Aaron to his day group one day this week, we passed a big traffic accident in the other lanes of the highway we routinely travel.  We took our normal exit, only to discover that the exit we usually take when getting back on the highway was closed due to the accident.  I told Aaron that I would need to go another way home after I dropped him off.  This concerned him but I assured him that it was no big deal.

All was clear on the highway and the exits when I picked Aaron up later that afternoon.

“Mom?” he immediately asked when he got in the van, “can we go up the road we’re normal with?”

It took me a second, but then I understood what he meant.  He was very happy as I turned into our exit that we could go up the road that we are normal with.

Aaron was completely unaware that he had just perfectly described his life with autism.  And he had especially given the perfect picture of why our recent trip to Texas was full of our usual Aaron ups and downs.

Aaron wants to stay on the road that he is normal with.  Any variation of that road will most certainly be full of potholes and unexpected detours. 

The road that Aaron is normal with is only at home.  It is only his room…his bed…his computer…his games…his food…his bathroom…his day group…his routine.

His desire for his normal is why he wants to take as much of his normal with him as possible when he travels with us.  He takes more books than he will read in three years.  More music than he will listen to in the week that we are gone.  Way more food than he will eat and way more games than he will play.

And he takes way more out of all of us than we feel that we can give.

Patience and understanding are our goal on every trip, but they are often stretched very thin.  If only my scales would show how thinly I am stretched!  😊

One evening we were setting the table for supper at our daughter’s house.  I gave Aaron one fork just like all of us were using.  But look at his place at the table after he ran back to the kitchen and corrected my silly mistake.

Always, always, Aaron will take two forks and two spoons and two knives.  He doesn’t use them but what we need to understand is that for some reason he does NEED them. 

Again, here is a perfect description of living with autism – this time in picture form.

You can see Andrea’s one fork beside Aaron’s multiple pieces of silverware. 

Aaron needs more.  He can’t even tell you why he does but he indeed must have more.

He must have more than the rest of us in so many areas of his life.  Sometimes it’s hard to remember that.  It’s hard to be patient with him and understanding of a need that we don’t have.  A need that seems so unreasonable. 

But the complexities of autism are not to be trifled with. 

There are many ways that we as parents can guide and train Aaron, and we have.

But we must be wise in choosing our battles.  Some battles we will always lose, and such a loss is not worth it.

The road that Aaron is normal with is also a road that Gary and I travel right alongside him.

I guess you could say that over the years we have a new normal…one we could never have dreamed of having.

Some days the trip is long, and we feel near empty.

Then we see a view like this, and our hearts are full again.

Under the Quilt

I heard Aaron’s first seizure at 12:38 this morning.  The second was at 2:37.  As I often say, Aaron would appreciate that I am using the precise time. 

Not long after 4:00 I heard him rustling.  It wasn’t a seizure.  I listened and knew that he was out of bed.  He went to the bathroom and then back to his room.  I heard his door close. 

I got up and went to his room, fairly sure of what I would find.  He had changed his pajamas and was getting ready to climb back into bed.

His sheets were wet.  Bed wetting seizures are common to Aaron. 

I had him sit in his desk chair as I changed his sheets.  He watched my every move, as he is not only bent on using precision with his time keeping but is also particular about his bedding being just right. 

I was thankful for waterproof mattress pads, and that we keep an extra one on hand.  Thankful for extra sheets and blankets, and for our washing machine and dryer.

There sat Aaron.  He was flicking his fingers together as he so often does now, more and more.  There was some dried blood on the corner of his mouth where he had bitten his tongue during his first seizure. 

He kept telling me that his head hurt.  He wondered if he would have to go to his day group. 

It always breaks my heart to see him like this.  Broke my heart, too, as I asked him if he would have slept on wet sheets if I hadn’t come in there.  He said yes because he didn’t want to wake us up. 

I told him he never ever had to sleep on wet sheets.

I was finally done with his bed.  It’s a stretch for Aaron to lay down under different covers than his usual ones.

“I want my Mario blanket,” he said as he looked at his bed all covered in a blanket not his own.

“But it’s wet,” I told him.  “Here, I’ll get you another blanket to use.”

I walked out into the hall and opened the linen cabinet.  I saw the quilt that we have had for many years and knew that the weight of it would be a comfort to Aaron.

As I carried it to his room and arranged it on his bed, I was thinking about the sweet memories of this quilt.  It was a wedding gift to me and Gary, made 44 years ago by the dear ladies at Needham’s Grove Baptist Church in Needham’s Grove, North Carolina.  My brother pastored there. The women in the church had gotten to know me while I was in Bible college not far away and would often visit on weekends.  

Finally, I was finished with Aaron’s bed.  He surveyed it as he stood up from his chair.  I smiled as he immediately pulled out some wrinkles in the quilt before he walked around to get back in bed.  He snuggled under the covers, and I pulled them up around his face, a soft smile of contentment visible on his lips. 

It wasn’t even 30 minutes later that I heard another seizure.  As I stood beside his bed, I looked at that special quilt again.  Each stitch was sewn by hand…hands of women who loved the Lord and loved to give. 

All those years ago, I had no idea what our life would hold.  We were dreamy-eyed newlyweds with our whole life before us. 

And now, under the quilt that we used to lay under, lay our special Aaron.  Never would I have imagined that we would still be caring for our 37-year-old son…that the quilt that covered us now covered Aaron.

I don’t know or understand the reason for any of it. 

But I do know my heavenly Father.

And I do know that He has stitched every little piece of my life and of Gary’s life and of Aaron’s life. 

God has stitched it in order to create a beautiful work.

Not an easy work.  And not the one I would have chosen if He had let me. 

But do I trust Him?

And if I do, at what point do I stop trusting?

I either fully trust God, or I don’t.

That means, that even through tears and disappointments and frustrations and exhaustion, I trust the God Who has promised to direct my steps.

Who has promised that “underneath are His everlasting arms.”

I am never lower than His arms that are always under me to hold me up.

And neither are you, my friend, if you know and trust this God Who loves you so much.

Who gave His own Son, Jesus, to die for you.

And Who is meticulously stitching the fabric of your life…of my life…of Aaron’s…into a work of art.

I want to rest under that quilt, handmade by God.