Category: Epilepsy

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.”

It’s Aaron

After being out of town for several days, Gary and I returned on Monday afternoon.  Aaron was happy, happy to have us home.  But by Tuesday morning he was wishing that we were gone again, and our friends were back at the house watching him.  Re-entry to real life is often difficult for Aaron.  

And he is not the only one who finds it difficult!

Aaron was belligerent on Tuesday when faced with the reality of returning to his day group.  He was very verbal and confrontational.  It’s the side of Aaron that tests my mettle to the core.

It’s hard not to respond in kind to him.  Sometimes I do say more than I want to say, sadly.  As we drove to his day group, I really laid into him.  Not in a damaging or harmful way, but in a truthful way about how his words hurt us and why.  There are concepts that he needs to hear about how to love us even when he is angry.  How to recognize and acknowledge all we do for him instead of thinking only of himself. 

The night before, I had watched a video with him about a triangle UFO.  It’s the last thing I wanted to do.   He had called us repeatedly while we were gone, talking about this UFO video he wanted me to watch with him.

“MOM!!” he exclaimed, “it’s a triangle UFO video that’s 44:42.  Would you watch 44:42?”

Those are the minutes and seconds that he memorizes on each YouTube video that he watches, by the way.

He was ecstatic that I agreed to look it up and then to actually sit through 44:42.

So, on that next morning full of anger, he was full of remorse as I spoke truthfully to him.  As we neared his day group, he spoke softly.

“I’m glad you looked up the triangle UFO video.”

I was quiet.

“I’m glad you looked it up,” he repeated several more times before getting out of the van.

It was Aaron’s way of trying to say he was sorry.

A few hours apart worked wonders for both of us.  He was very happy when I picked him up and I was responsive once more.  I took him to the lab for some bloodwork, where he had to be poked in each arm and he flinched…something he rarely does.  My heart went out to him.  He deals with so much, even more internally in that brain of his than outwardly sometimes.

The technician gave him the plastic tourniquet to keep.  He was delighted.  I watched him walk around WalMart later, both arms with band aids and the tourniquet dangling from his fingers as if it was a prized possession.

I thought of how those small gestures…those items insignificant to us…bring him such joy. 

And it hit me that there are countless times that the seemingly insignificant, daily actions of Aaron bring us such joy…of how much I need to focus on those moments rather than the outbursts that bring hurt.

It’s Aaron at Walmart trying to hide from me because he has BOTH crescent rolls and biscuits in his hand that he wants me to buy.

It’s Aaron sitting on the floor of the store, totally oblivious to anyone around him as he checks out the peanuts on the bottom shelf.

It’s Aaron hardly able to wait until he could show me how much his sunflowers had grown while we were gone.

It’s Aaron helping clean under the kitchen table after supper.

It’s Aaron telling me he took his snacks to the snack drawer before bed.

It’s Aaron thrilled to pieces that I let him buy TWO boxes of Texas Toast.

It’s Aaron loving to do science experiments.

It’s Aaron super excited about his new volcano lamp.

It’s Aaron overjoyed because he won this light-up bouncy ball in Bingo, which he took today to show all our Meals on Wheels clients.  

It’s Aaron sitting alone in the mulch, breaking pieces into a container the same way he has done since he was a little boy.  There goes my heart.

It’s Aaron’s unique sense of style, unaffected by current trends or other’s opinions.

It’s Aaron’s unique impact on my life that I want to treasure and relish each day, even despite the hard times.  

After The Storm

Two nights ago, I awoke to bright lightning flashing outside our window.  Then came the crashing thunder.  Two hours later, we had a repeat as another storm roared through.

A few hours later, the sun was shining as I looked out my favorite window.  The view was so beautiful.  The leaves on our huge oak tree looked crisp, the grass was so green, and the sky was beautiful with unthreatening clouds.

Even though the storms earlier were loud and a little scary, the benefits were well worth the dark experience of the night.  We need the rain.  And I was so blessed by the very pretty view that morning.

So often, the aftermath of a storm carries with it refreshment and joy.

The same is true in the life of a believer.

We don’t often understand this side of heaven just why we go through trials of life.  But what we do know and understand is this:

“…I am the Lord and there is no other, the One forming light and creating darkness, causing well-being and creating calamity; I am the Lord who does all these.”   (Isaiah 45:6-7)

These promises to Israel continue:

“For thus says the Lord, just as I brought all this great disaster on this people, so I am going to bring on them all the good that I am promising them.”   (Jeremiah 32:42)

The God of Old Testament Israel is our God today, and His character and purposes have not changed.  He has a reason for every circumstance and event in the life of those who know and follow Him.

“And we know that God causes all things to work together for good to those who love God, to those who are called according to His purpose.”   (Romans 8:28)

There is so much work that God wants to do in us.  Even Jesus learned obedience through the things which He suffered.  (Hebrews 5:8).  How much more do I need to learn the same?

Let me close with sharing one recent experience.  We were having a particularly rough behavior evening with Aaron.  We couldn’t understand why.  Then after supper, while I was at the kitchen sink and Aaron was a few feet away, he suddenly went into a seizure.  These drop seizures are both terrifying and dangerous.  He falls like a tree and has been injured several times over the years…staples, stitches, a lost tooth, CAT scans to check for concussions, and so forth.

Because I was so near and heard the seizure start, I was able to turn to him and grab him as I yelled for Gary.  I lowered Aaron to the ground as he fell while Gary ran in and was able to help.

Later, feeling depleted and very emotional, I sat in a chair near Aaron as he slept and recovered.  And I prayed.  I was able to practice what God has taught me over the years.

“Let the peace of Christ rule in your hearts, to which indeed you were called in one body; and be thankful.”   (Colossians 3:15)

I was able to be thankful…thankful that I was near Aaron when the seizure started…that Gary was able to help…that Aaron was not injured…and that later he was his happy self again.

Honestly, I don’t say, “I’m so happy that Aaron has seizures!”

No.  But I can, because of what I know about God, be thankful for both the ways that God takes care of Aaron and for all that God has taught me over the years as I have learned to completely trust Him with this son whom we love so much.

It’s like looking out that window after the storm and seeing that the storm has brought to me another layer of growth and beauty despite the fear and struggles.

I pray the same for each of you today as you gaze out the windows of your life at the works that God has done because of, and after, the storms.  

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.

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 Sudden Dark Clouds

The other morning, I looked out my favorite upstairs window and saw this very pretty sky.  The puffy clouds and the sunshine reminded me of summer.

Not long after, however, I noticed from another room that it seemed darker outside.  I went back to the window and was shocked at what I saw.

Whoa!  In such a short time the scene had totally changed.  We went from bright and happy to dark and foreboding very quickly as a cold front began blowing in.

I have had those sudden dark times in my life. 

That Sunday years ago when our normal day turned into terror as Aaron lay on our kitchen floor, seizing violently.  The blur of a frantic call to the medical clinic…the ambulance…the German children’s hospital.  The stabs of deep fear mixed with the frustration of the language barrier and the culture that was in many ways unfamiliar. 

We went from worshipping God at church that morning to being blind-sided by a situation that we were totally unprepared for.

But let me tell you that Psalm 18:28 is true!

            “The Lord my God illumines my darkness.”

He was there with us in that foreign hospital room, during all the tests, and the diagnosis…and He has not stopped walking with us on this road of special needs.

My prayer list keeps getting longer with names of so many who are hurting and struggling through various sudden changes.

Gary’s cousin, now a much-too-young widower whose precious wife collapsed and was gone.

A friend’s daughter…a young wife and mother…fighting cancer.

A cousin and a friend recently widowed.

Jobs ended.

Marriages over.

Cancer returning.

Listen to what else David says in Psalm 27:1:

            “The Lord is my light and my salvation; whom shall I fear?”

God brightens the unknown!

His light shines brightest in the dark.

His character positively glows in our deepest hurts and with our tear-stained cheeks.

And we have no reason to fear because He is fighting for us.  Psalm 27:1 continues:

            “The Lord is the defense of my life; whom shall I dread?”

I love the song, Blessings, by Laura Story.  Read the lyrics:

We pray for blessings, we pray for peace

Comfort for family, protection while we sleep

We pray for healing, for prosperity

We pray for Your mighty hand

To ease our suffering

And all the while, You hear each spoken need

Yet love us way too much to give us lesser things.

‘Cause what if Your blessings come through raindrops?

What if Your healing comes through tears?

What if a thousand sleepless nights are what it takes to know You’re near?

And what if trials of this life are Your mercies in disguise?

We pray for wisdom, Your voice to hear

And we cry in anger when we cannot feel You near

We doubt Your goodness, we doubt Your love

As if every promise from Your word is not enough

And all the while, You hear each desperate plea

And long that we’d have faith to believe.

‘Cause what if Your blessings come through raindrops?

What if Your healing comes through tears?

And what if a thousand sleepless nights are what it takes to know You’re near?

And what if trials of this life

Are Your mercies in disguise?

I saw this beautiful scene a short time later, after the scary dark clouds had gone away, and I was reminded that God is still our light and our salvation.

Don’t fear, dear ones.  God is still there in the clouds, and He WILL illumine your darkness with His sweet presence.

The Flip Side

I’m old enough to remember 45 rpm records.  On one side there was the recording of a major hit, usually a #1 song.  But then there was the flip side.  The song on that side wasn’t known well or at all, usually, and wasn’t talked about nearly as much as the other popular song.  Everyone wanted to listen to and talk about the fun, well-known song.

I started writing about Aaron and our life with him over 10 years ago.  My desire was, and still is, to show the amazing way that Aaron thinks and especially speaks.  I wanted others to see the absolutely unique and often hilarious way that Aaron expresses himself in order to gain an appreciation for all those with autism.  I love sharing our life with Aaron, especially the laughter and the wonder that he brings to us.

Yet there is a flip side, just like those 45 rpm records.  I have written about it many times over the years but don’t want to focus on the negative.  Just like the popular #1 song, it’s fun to hear the funny side of our life.  But that flip side is just as much a part of Aaron as the other preferred side.

Yesterday morning the song on the flip side was playing loud and clear at our house.  I didn’t turn Aaron’s record over.  Believe me, I far prefer that first side!  But turn over it did! 

For some background, most autistic persons have obsessions that they have a hard time…or totally cannot…control.  Some obsessions seem to be permanent, and others might come and go. 

One cannot tell an autistic OCD person to “just get over it” when he is obsessing over his obsession.  I may as well tell one of Aaron’s friends in a wheelchair to just climb up our stairs.  It’s not going to happen.  And neither will Aaron “just get over” the angst that he experiences when one of his obsessions becomes disrupted.

During the past two years, a staff member at Aaron’s day group has taken him to Quik Trip to buy whatever he wants to eat.  It has become THE highlight of Aaron’s day.  He is completely fixated on this fun, simple outing.  Often some of his friends go as well, which makes it even more fun for Aaron.

So, there is the obsession.

Now for the disruption.  A meeting. 

Meetings to discuss Aaron’s services, plans, health, etc., are a necessary part of every year. 

Aaron hates meetings.

The only meeting he likes is the one with his case manager because we gather at Carlos O’Kelly’s for lunch.  Aaron cares not about one word that is said at the meeting.  He is too busy eating yummy food and trying to monopolize the conversation. 

I had told Aaron that we were having a zoom conference on Wednesday morning at his day group.  I told him it wouldn’t last long and that he wouldn’t even need to be present for the entire call.

But on that morning, nothing mattered but Quik Trip.  He was super angry before he even got out of bed.  Nothing I said helped him.  He was sure that QT was out of the question…sure that this dumb meeting was going to keep him from QT…positive that his day was completely ruined with no QT…very angry that he had promised Myra she could go to QT but now it wouldn’t happen…what would Antoine think about not taking Aaron to QT…

On and on and on he went, accelerating into yelling.  He broke his closet door.  He hated this meeting.  He hated me. 

Then he cried.  If Aaron cries, he is genuinely and deeply upset.

I texted Barb at Paradigm, who can calm Aaron like no other.  She facetimed with Aaron, and he started settling.

As I fixed my hair a short time later, Aaron walked in the bathroom, fresh tears in his eyes.  In a voice thick with emotion and with total sincerity, he said, “Mom, I’m sorry.”

Then tears filled my own eyes.  I was spent but I was so touched at his apology, especially since I had not asked for one. 

I gave him a hug, which he allowed to last for maybe three seconds before he squirmed out of it.  😊

So why am I telling you all this? 

It’s not because I like talking about Aaron’s flip side.  But this is our reality, especially Aaron’s reality. 

And the reality for so many other families that I know. 

Seizures are hard.  Other health issues are hard.

But behaviors…they are in many ways the hardest.  What a toll they take on the Aaron’s of the world, and on the families who care for them and love them.

And on the staff at all the places that also care for our special ones.  Imagine having dozens of persons together, many of whom have these OCD issues and meltdowns.  I saw one yesterday when I was at Aaron’s day group, and I saw the response of the staff.  Being spit on and kicked is not pleasant yet these amazing people stay the course.

Seizures cause brain damage that worsen the situation.  Seizure meds compound the problems with side effects that include worsening behaviors. 

How complex these things are!

How life-altering for the families!

How we love Aaron! 

We hurt when he hurts.  We struggle when he struggles.  We mess up and need to ask his forgiveness, as well. 

We all need grace, God’s and each other’s.

I have to fill out this behavior chart about the whole hard ordeal.  Stats and records must be kept.

What can’t be measured in any metric or logged on any chart is the love we have for Aaron and that he has for us when the dust has settled and the tears are gone.

I wish I could check a box that explained his sadness at his own behavior.  One that would record his heartfelt apology, the tears in his eyes…in my eyes…and the lasting impact that yet another hard moment has left with us.

I’m thankful that God knows and that He gives His grace for each day.

And thankful for our complex and amazing Aaron…both sides.

I Can’t Wait!

Waiting patiently for anything is not a strong suit of Aaron’s.  Whether he is waiting for me to get off the phone or waiting on a huge surprise, it doesn’t matter.  Patient waiting is a foreign concept to him.

This is why we often don’t tell Aaron of an upcoming event until shortly before it actually occurs.  Too bad he knows when his birthday is because he is in planning mode for months before the big day. 

Earlier this year, a big dinosaur exhibit was coming to town.  Gary and I decided to take Aaron and to make it a surprise, more for our sake than anything.  The big day came…tickets were bought…plans were in place…and finally I told Aaron that we were taking him on a surprise adventure. 

It wasn’t THAT long before we were leaving that I broke the exciting news to him, but oh my goodness!  I quickly realized that I should have waited until we were in the van and on our way before uttering a word about our surprise trip.

Aaron can hover better than any hummingbird or helicopter.  He hovered outside my door as I got ready.  He knocked and knocked on the door, asking if it was time to go yet.  He lingered outside the bathroom door as I dried my hair.  He stood right beside me as I brushed my teeth, asking questions and wanting me to answer even with a mouthful of toothpaste. 

“Aaron!!” I finally said, “quit being so impatient!!  Leave me alone and let me get ready.”

I enjoyed a few moments of blissful quiet…until he once again knocked loudly on my door.

“But MOM!!”  he exclaimed, “I don’t have anything to DO while I’m being impatient!!”

Let me say, I am so much like Aaron when God has me wait for something, especially something that I have prayed about for a long time.

Look at Isaac and Rebekah.  Isaac married Rebekah when he was 40 years old.  No children came, however, because Rebekah was barren.  In Genesis 25 we read that Isaac prayed on behalf of Rebekah and she conceived.

But guess how long it was before that happened?

20 years!

YEARS!!

Can you imagine the disappointment, over and over and over?

The sadness?

The comparing themselves to others who had HOW many children during the time that they waited…and waited…and waited on God to keep His promise.

As Dale Davis points out in God’s Rascal, The Jacob Narrative, Isaac’s non-chosen brother Ishmael had 12 sons.  What’s up with that?!

But Isaac didn’t just idly or impatiently wait.  We’re told that he prayed on behalf of his wife. 

The Hebrew term used there means that Isaac didn’t just pray FOR his wife.  It indicated that he prayed in front of her…in her presence.

I found Isaac’s action in prayer to not only be very encouraging but also very precious.  He led Rebekah and he joined her in her pain…in their pain…as they waited for God’s answer.

Sometimes things seem so hopeless.  We don’t see answers coming.  It’s so easy to lose heart, especially when we have prayed and prayed and prayed.

I love this verse.

Right now, Aaron is laying on our couch downstairs.  He had three seizures this morning.  He is almost 38 years old and has had seizures since he was 7 years old.

I look at him as he ages, and I see the effect of all these years of seizures…of the toll they have taken on his body and on his mental abilities. 

But I know that as much as I love Aaron, God loves him even more.  And God loves me. 

He loves us and He has a reason that I will probably never know on this earth for all that Aaron has suffered.

So, I cry out to God.

And I know that God’s inclination is to lean down and hear my cry. 

Isn’t that a precious picture?

He joins me in my pain and in my waiting.

Am I always patient as I wait on God?

No!

But unlike Aaron, there IS something I can do while I’m being impatient and that is to pray.

And to praise, as David continues in Psalm 40.  Sing a new song of praise, which will be a testimony to others.

After all, “How blessed is the man (or woman) who has made the Lord his trust.”  (Psalm 40:4)

Gotta run.  Aaron is awake now and is planning our evening already.  😊 

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.