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.

Pharaoh Aaron

I see lots of people are putting up their Christmas trees and listening to Christmas music, and here I am just now finding a little time to write about Aaron’s Halloween.  Story of my life.  I’m usually a few days late and lots of dollars short!  😊

But I just couldn’t pass up the opportunity to share about Aaron’s very happy day, so here goes.

About a month before Halloween and based on his ongoing up-and-down obsession with everything Egyptian and King Tut and pharaohs, he decided to browse through Amazon where he found a pharaoh costume.  We were easily talked into buying it and Aaron was over-the-moon excited at the thought of wearing it to his day group’s Halloween party.

The fact that Aaron would even wear this costume was a miracle.  He doesn’t like how unusual clothes feel on his body or the attention he gets from others if he dresses differently, but for some reason he was totally pumped about this costume.  Just look at him!

He did say he wanted people to bow to him so that might partly explain his enthusiasm.  We quickly nipped that idea in the bud, however…and also refused to give him a staff to carry.  Multiple scenes of forced homage played through our minds as we gave him a determined, “NO!”

Aaron was very excited about wearing his “uniform,” as he called it, on the morning of the party.  I wondered what people thought as I drove down our city’s main highway with a pharaoh in the front seat…especially one that kept rubbing his hands and fingers together the way our Pharaoh does.   😊

Aaron was pretty nervous, though, as we parked at Paradigm.  I had reminded him several times that everyone would love the costume and would make lots of comments, and that he needed to be nice.  Aaron doesn’t like such attention even though he does plenty to deserve attention that has nothing to do with dressing as a Pharaoh.

Just as soon as we got out of the van, there was one of his staff in the parking lot. 

“Aaron!” she exclaimed, “I LOVE your Pharaoh costume!  You look awesome!!”

“Shut up,” he softly replied.

And there we go, I thought. 

Another lecture from me and inside we went, with me more nervous about it all than Aaron at that point.

Aaron had said he only wanted to stay for a few minutes and then go back home with me.  But once inside, as he heard everyone’s excited comments about his costume, he started to relax and enjoy himself. 

He finally decided to stay for the party, so I eased out and drove home, fully expecting to soon get a call from him begging me to come pick him up.  But that didn’t happen!

Instead, when I picked him up later that afternoon, several of his friends came running to the van.  All of them said the same thing.

“Guess what?!” they said, “Aaron won first place in the costume contest!!!”

It was so touching!  There they were, most of them in their own costumes, genuinely thrilled that Aaron had been the one to win first place. 

If anyone wants to see some amazing examples of true friendship, come with me to Aaron’s day group and I can show you plenty.

Finally, Aaron made it to the van – a HUGE smile on his face. 

“MOM!!” he almost yelled, “I won FIRST place, and I got THREE dollars!!!” 

It may as well have been a million dollars.  To him, it was! 

And to me, there was no dollar amount that could be placed on the joy I felt to see him so happy, and to see his friends so happy FOR him.

But his happy day wasn’t quite over.  I had to pick up a few things at the grocery store.  I offered to take Aaron home to let him change first, but no, he wanted very much to go inside Dillon’s and show everyone his costume.  I, on the other hand, was more than a little hesitant to go inside with Pharaoh Aaron.  Regular Aaron attracts enough attention.  Pharaoh Aaron…well, that puts the “Wow, look at him!!” stares I knew we would be getting on a whole new and very high level.

But hey, I’ve learned to just smile and enjoy the ride as much as possible so off we went.  Pharaoh Aaron and I marched in the doors like it was just another day in ancient Egypt.

And yeah, we got plenty of looks.  Aaron laughed and rubbed his hands together all the way through the store.  He saw and talked to Jody first at customer service…then turned to see Harold at self-checkout bowing to him (absolutely perfect!!)…ran to the pharmacy where Marc and Greg and most of the staff laughed and where Marc talked to Pharaoh Aaron like always…then all the way across the store to the deli where Cassandra and Blake were appropriately impressed…

 He did hear several people say, “Good job!” or “You look great!”   But most of the time he was blissfully unaware of the many stares and huge smiles left in his wake.

But I was very aware, and so very happy that I had decided to let Pharaoh Aaron go with me into the store.  I imagine he brightened the day for lots of people. 

And for those who just stared at him as if he had landed on earth from Mars…silly people. 

I should turn Aaron loose on those people.  He could most definitely educate them on both Mars AND Pharaohs. 

There are no Pharaohs on Mars!

But we sure enjoyed our day here in Kansas with Pharaoh Aaron!

To Tim and Alicia

Tim, our hearts are across the country with you and the family today as you celebrate Alicia’s life.  We are with you…with Bryson, Brayden, and Willow Grace…as you honor your amazing wife and mother.

I wish I had all the answers for you and the children about why God took Alicia so suddenly and so soon.  Of course, I don’t.  No one on this earth does. 

Only God.

I wish I could take away your pain and deep grief.  Of course, I can’t.

Only God.

What I do know is that God is with you.  I know you know that, too.  You may not always feel it right now, but you know it.

I thought of you this week as I read Genesis 46, about Jacob traveling down to Egypt to see the son whom he thought was long ago dead.

Jacob was settled in Israel, content there, and old.

Israel was the land God had promised to him and his descendants.

But now Jacob was faced with the inevitable…traveling down to Egypt to see Joseph. 

Egypt. 

Egypt was the enemy.  Egypt was a place of fear…unfamiliarity…full of danger and totally distasteful to Jacob.

But God told Jacob, “I am God, the God of your father; do not be afraid to go down to Egypt…”

And God continued, “I will go down with you to Egypt, and I will also surely bring you up again…”

Tim, as the dust settles, and your life continues…but without Alicia…I pray that you and the children will know that God has gone down with you to this Egypt.

“Where can I go from Your Spirit?  Or where can I flee from Your presence?

If I ascend to heaven, You are there.  If I make my bed in Sheol, behold, You are there.

If I take the wings of the dawn, If I dwell in the remotest part of the sea,

Even there Your hand will lead me, and Your right hand will lay hold of me.

If I say, surely the darkness will overwhelm me, and the light around me will be night,

Even the darkness is not dark to You, and the night is as bright as the day.

Darkness and light are alike to You.”   (Psalm 139: 7-12)

Tim, God is with you and the children in this Egypt.  And just like He promised Jacob, He will bring you up again. 

God will heal your hurt.

God will comfort your deepest sorrow.

God will walk with you each step of this very hard road.

God understands the question, “Why?!” 

Alicia, last week Tim messaged me and said that more than once you said you would love to have met me. 

Let me tell you, that I have always wished for that as well…and never more so than now after reading the multitude of posts about how many lives you touched.

Tim said you were the kindest lady he had ever known and that he was blessed to have been loved by you.

I have seen this week that this is the lifelong impact you have had on many lives as a wife, mother, sister, friend, and a brand new RN. 

And especially as a follower of Christ, your kindness and love will live on in the hearts and lives of so many people. 

Death has not…and will not…dull your testimony.

In fact, I do believe that God will use this as the means to show us all how very important it is to know Jesus personally…to shine brightly for Him…and to always be ready to meet Him.

Speaking of meeting, you and I WILL meet one day…of that I am very certain.  I look forward to that day in heaven when I do finally get to give you a big hug and to thank you for the impact you have had on my life even from afar.

Tim, Bryson, Brayden, and Willow Grace – you are covered in our prayers.

May you, as time goes on, be able to say with Jacob, “God answered me in the day of my distress and has been with me wherever I have gone.” 

We love you.

Aaron’s Tears

Let me say right from the beginning of this blog post that I am sorry for writing another sad Aaron story.  As if The Flip Side – my previous blog – wasn’t enough, here I go again.  But I promise to have happy stories and huge Aaron smiles coming up.  After all, Halloween is right around the corner and Aaron is nothing short of over-the-moon excited about all things Halloween and pumpkins and…for the first time ever (really!)…a costume that he cannot WAIT to wear!!

In my last blog I tried to explain the impact that Aaron’s obsessions have on his everyday life.  In true autistic fashion, he will become hyper-focused on something that soon controls his decisions and his emotions. 

Water, as in the drinking of water, is another of Aaron’s obsessions.  Years ago, our daughter told him that there was such a thing as drinking too much water.  She was right.  In 2015, Aaron ended up in the hospital.  He was incoherent and unable to walk.  His sodium was dangerously low.

Over the years we have attempted to control his water urges but it’s very difficult to do so with a grown man who is able to get his own water…and is very sneaky about hiding water bottles, especially at bedtime. 

Three weeks ago, after routine bloodwork, I got a call from his doctor informing us that Aaron’s sodium was low again.  Aaron did a great job of reducing his fluid intake and in only one week his levels were normal again.  We praised Aaron for the good work, and he was quite thrilled.

But water obsessions are like an addiction.  The urges for lots of water returned, along with our removing bottles from his room and threatening to lock the garage refrigerator with all the water bottles inside.  Gary and I hadn’t figured out what to do about the faucets or the fridge water dispenser.  Ugh!!

Aaron has been doing better the past few days, though, and so we can only hope that he is learning to control himself.  But this past Monday at his day group was rough.

Aaron got some coffee at QuikTrip, and it accidentally was kicked over by a friend.  It spilled all over the floor.  He had taken water with him that day, but decided he wanted a bottle of water that was inadvertently offered to him.  A staff reminded him that he couldn’t have more water.  All of this was just too much, and the tears came.

He was totally dejected.  A staff took this picture of him in her office.

At first I smiled, but then I zoomed in, and the look on his face…

Well, it broke my heart.  And then I was crying.

If there was ever a picture of Aaron’s deep frustrations, this is it.

But why do I share this? 

Because I want others to know that these fixations of Aaron’s…and of so many others with autism or other issues…are life changing for them and are not to be flippantly brushed aside with a, “Oh, just get over it, Aaron.”

He can’t “just get over it.”

He is so deeply affected by his own fixations.

My blogging friend, Nancy, commented on The Flip Side that I wrote last week. 

“Dear Aaron,” she wrote, “it must be SO frustrating to deal with uncontrollable urges.”

Her comment touched me so much because she acknowledged that Aaron’s urges…his obsessions…are truly uncontrollable.  And she expressed empathy for that side of Aaron because of how deeply impacting it is in his life. 

How frustrating it is for him.

And I know that if I can look at Aaron through eyes of understanding and compassion, then hopefully he will see and feel the fact that he is understood and loved. 

Easy?  No.  Especially in the heat of the moment, or late at night when I am carrying three water bottles out of his room while he loudly protests.

Yet again, though, Aaron has shown me how much I am this way with my heavenly Father.  How I let my obsessions for things that aren’t good for me control my thoughts and my actions.

The mercy and grace that God gives to me is exactly what I need to show to Aaron. 

I goof up and God is there to forgive and to instruct, and to patiently love me through the repercussions of my repeated actions.

 I must do the same for Aaron…forgiving and instructing and most importantly, loving him through the repercussions he might face.

And maybe look into a water sniffing dog, as well?  😊

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.

The Happy Uncle Aaron

Aaron has difficulty understanding family relationships.  He understands Mom and Dad, and brother and sister.  He struggles, though, with titles outside of our immediate family.  Sometimes his given titles for family members can be hilarious.  Such was the case when his sister, Andrea, was engaged to marry Kyle.  Aaron thought that Andrea would no longer be his sister, and this thought was intolerable to him.  One day we tried, yet again, to explain that he would not lose his sister but would instead gain a brother. 

“Well, I don’t NEED a Grandbrother!!” he angrily declared.

We waited to laugh until Aaron had left the room.

Other times, Aaron’s descriptions of family relationships can be suspicious.  This happened one recent evening as Aaron was trying to tell me something about Kyle.  You know…Kyle.  Aaron’s Grandbrother.

“Kyle,” Aaron said, “who lives with Andrea.  Dad said he’s the brother-in-law.”

“He is to you,” I replied.

“So Kyle,” Aaron continued, “Andrea’s father…..”

“No!” I interjected, “he’s her husband.”

“So Kyle,” he began again, “Andrea’s father-in-law….”

Please, if Aaron is ever trying to explain our family to you, come to us for clarification before you ever repeat what you think you have learned.

But Aaron’s new position as UNCLE Aaron has taken root in Aaron’s mind.  I’m still not sure he grasps exactly why he is the uncle, which is based on the fact that he is Andrea’s brother and as such then he is automatically the uncle of their soon-to-be born baby boy.  All of this gets pretty complicated to him.

Yet he has taken on the mantle of The Uncle as if it is his new designated title…something like The Duke or The Earl. 

Aaron is The Uncle.

Here is a typical conversation that Aaron might have with people.  Literally, with anyone he encounters, even strangers. 

“My sister is having a BABY!” he exuberantly declares.  “And I’m The UNCLE!!”

He makes this declaration loudly while bending over, rapidly rubbing his hands together, and grinning as broadly as he can possibly grin.

To say it’s surprising to all these random recipients is putting it mildly.  Yet it’s also endearing and precious.  Most folks respond with a huge smile and congratulations.  Bless them.

Time for me to insert a couple pictures taken last week when I was in Texas for Andrea’s baby shower.  😊

As you can see, the time is getting closer for Baby Boy to arrive.

And it seems that Aaron is getting a little nervous about what is expected from him in his new role as The Uncle.

“I’m not sure I want to be The Uncle,” he sometimes says.

“I’m scared to be The Uncle,” he has also said.

“I don’t know what to do as The Uncle,” he adds.

We assure him that being The Uncle simply means that his job will be to play with Baby Boy.  To love him.  To read to his nephew.

Oh wait.  We haven’t used that term yet…nephew.  Let’s not push these concepts too far.

After Andrea sent us her latest sonogram pictures, I shared them with Aaron.  He especially loved seeing Baby Boy’s foot…

And his hand.

Not long after, as we talked to our neighbor, Aaron remembered what he had seen.

“Andrea sent more pictures of the baby and I saw his hand and his foot!!” he very excitedly said.

“Oh Aaron,” Amanda replied.  “That’s so wonderful!”

“YES!!” he declared as he bent over and rubbed his own hands together.  “And now I’m HAPPY to be The UNCLE.”

There was that grin, huge and so cute!

Aaron will most assuredly have his fluctuations about all this business of his new title, The Uncle, being bestowed upon him.  As long as he continues to talk to us about his feelings then all should be well.

And most assuredly, he will continue to do just that. 

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.  😊 

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.