Yesterday – A Part of Today and Tomorrow

I opened my desk drawer not long ago, pulling it way out and getting a rare glimpse into that dark corner that rarely gets my attention.  I saw the stack of old calendar planners that I had saved.  You know how it is.  I saved them just in case I ever need a piece of information that they might contain.  Maybe the date of a doctor visit or a surgery or a test of some sort.  The ones that I eventually pulled out of two separate drawers went back to 2002.  Seriously?  I had no idea how much time had passed.  Did I really need to keep my planners from 12 years ago? 

 
I gathered the ones together that I had no intention of keeping and decided to take them downstairs to throw them in the kitchen trash can.  But before I did that, as I sat at my desk chair, I opened one of the oldest planners.  I was quickly pulled back in time as I flipped through its pages.  So many memories came rushing in.  I reached for another planner, and another, as I sat there lost in memories. 

We were in the midst of life with busy kids, that’s for sure.  I was homeschooling all three of them, with our friend Amy helping to tutor Aaron.  Then I saw the transitions that we were going through with Aaron as we had him tested, enrolled him in the local high school here, and had him then admitted to a Wichita school for special needs life skill training.  All the appointments that I had written down brought back so many recollections of that time.

 
There were football practices and football games for Andrew.  I remembered all the times that Gary took him to practices, or I did when Gary was at work……as well as the year that Gary helped coach Andrew’s team and the hours they spent together that year.  Then later came the wrestling practices and many wrestling meets.  And after that came track for Andrew.     

With Andrea, it was largely her music that kept us on the road.  Piano and violin lessons, recitals, and special events related to her music.  Then there was the season that she and a friend tried volleyball.  Oh yes, how well we remember that experience! 

All the doctor appointments for each of them, much less for me, were meticulously recorded.  Dentist visits, physicals, wisdom teeth surgery, orthodontist visits for Andrew…………and so many more.   For Aaron, there were the specialists, of course.  The EEGs, the MRIs, the VNS surgery, the five day video EEG in the hospital……..all of it.  I smiled at the ER visit for him when he picked up a snake and it bit his hand.  I remembered that I wasn’t smiling that day.  And his broken wrist surgery was there as well, of course. 

We spent countless hours in the car as I drove them all to their activities, especially Andrea and Andrew.  I drove them to practices……….I drove them to jobs……..I drove Andrea to college in the early days before she got a car.  I drove Andrew to and from our local high school when he went there to finish school, before we got him his truck.  It seems so long ago! 

I saw records of so many church activities for all of us.  Ministry and growth and friendships were all over those pages, for each of us.  And there were other treasures as well, such as the visits from friends or family over the years.  These people arriving on this day and leaving on that day.  Or our trips back home, for many happy visits and then as time passed, the trips that were ruled by sad and hard times. 

I saw the date on which I had written that my dad was starting yet another round of chemo.  Just three little words – Dad starts chemo.  Then a year later, all the blank pages during the month that I stayed in West Virginia with him and mom the month before he died.  The same blank pages were there from the year before when Gary’s mother died……and a year later when Gary’s dad died, two months before I lost my dad.  So many long trips home………so many blank pages when our normal schedule didn’t matter.

These planners that I held in my hands held far more than dates and times and schedules.  They held precious memories of a life that is now in the past for us.  The words in black and white…….the scribbled times and the jotted notes………were full of meaning for me.  But they didn’t hold emotion or feeling.  The feelings are in my heart, stirred alive as I read the facts of our busy life being lived during those active days. 

And I would not take back one second of it!  No written words in a planner can convey the bonding that was occurring during all those endless hours of time spent together………….whether it was in our van, or in a waiting room, or sitting on bleachers, or nursing one back to health after surgery.

Behind all those sterile words on those lined pages, there was sharing.  Talking about relationships as we drove along, or what God would want one of them to think or to do, or what their dreams were.  There was laughter…..so much laughter.  We still laugh about some of those moments today.  If I said to Andrea, “You sophomore or junior?”……she would laugh and laugh about that moment.  Or to Andrew, if I said, “I laugh in the face of G-forces.  HaHaHaHa!!!”……he would laugh, or at least give me a patient smile while he rolled his eyes. 

There was plenty of embarrassment as well, trust me.  Andrew’s embarrassment at having his mother drive him to and from school for several months is the stuff of legend……….but there was a lesson to learn.  The same for Andrea during her first few months of college. 

I wondered, as I read, where I got the energy for those extremely busy days.  I was younger and it was just life, how we did it, and I didn’t think a thing about it.  Now it would be daunting.  Then, it was normal.

While that life is in the past for us now, I know that the time spent together put down roots in their hearts that are still growing today.  What occurred in the past is still a part of their present……our yesterdays are a part of their today’s.  It’s helped them be who they are, and who they are yet to become.  So our yesterdays are also still to be a part of their tomorrows.

To young parents who are now where I was all those years ago, I would say:  Look at your children with fresh eyes.  See and know that one day, in what will seem like the blink of an eye, your little ones will be driving away to begin their own lives.  The time spent with them now can never be reclaimed or lived again.  We can never re-live today.  Each day, each moment, each event, each conversation, will make them into the adult that they are yet to become.

And so many of these moments and these conversations happen in the dailiness of our lives…….the routine that can become too routine and tiring on some days.  Treasure the moments………claim each opportunity to learn and to laugh together. 

Some day you might open up your old planners, if you have them and keep them, and smile at the memories.  Maybe shed a tear or two.  But hopefully you will be mostly thankful for days well spent in the lives of your children and your families. 

You Voted For the Wrong Team

Yesterday was Super Bowl Sunday, a day which does not impress Aaron in the least.  He doesn’t care one bit about sports on most days, and certainly he does not see anything at all super about the Super Bowl.  Even the food I made didn’t greatly impress him.  Gary made some awesome special hamburgers on the grill, but Aaron just ate one of the regular burgers with a little ketchup smeared on it.  He didn’t care at all about the cake I made but instead munched on some Rice Krispie treats from the day before. 

He was pretty grouchy just before supper because he felt like Gary didn’t want to look at yet another clip from the War of the Worlds movie.  He was right.  Gary, nor I, had any desire at all to look at anything else related to War of the Worlds, but Aaron was very upset by that.  So after supper, dear Gary went up to Aaron’s room and watched another short clip………and Aaron was happy.

Gary and I settled in to watch the game.  It wasn’t too long before Aaron bounded into the room, asking his usual questions.  What teams are playing?  Which one are you voting for?  What color are they wearing?  It looks red to me, not orange, he said.  So are you voting for the team that has a zero for their score?

That’s about enough, Aaron.

I offered to tickle Aaron’s back, so he got the back scratcher tickler………and his animal print blanket that must always go over his legs……….and his bag of peanuts……….and his bowl for the peanut shells.  He sat on the ottoman near me and I began tickling his back, which he loves, as he watched the Super Bowl, which he doesn’t love. 

I kept having to remind Aaron that this tickling of his back was not another opportunity for him to talk incessantly about War of the Worlds.  This was our time to watch football and to listen to all the commercials, neither of which interested Aaron in the least.  Yet he was watching the game.  Aaron is always observing, whether he particularly enjoys the said activity or not.

His first astute observation didn’t take too long in coming.  “Mom, I think you and Dad should vote for Seattle.”

Yes, we knew that he was watching the game and that he was keeping track of the score. 

He wondered why the players were yelling, and what were they yelling, and were they mad.

He observed that lots of football players have long hair.

But the best question by far:  “How come football players look like they’re wearing a pacifier?”

At least he gave Gary and me something to laugh about as we watched the team we were voting for miserably lose.  Aaron thought that it was pretty funny that the team we voted for lost the game.  He has no team loyalty and no interest in that fact that we do.  It’s black and white to him.  We voted for the Broncos.  The Broncos lost.  We voted for the wrong team.  Period.

I would say that this Super Bowl business has given us a slight reprieve from all the War of the Worlds talk.  Very slight, but still a small break nonetheless. 

Shortly after he came down to the kitchen this morning, I heard his low chuckle.  I asked him what was funny, and he answered, “I’m laughing at your Super Bowl because your team only got eight points.”

See what I mean?  He has no sensitivity concerning team loyalty and team disappointment.  It’s a good thing that Gary and I don’t take all this football Super Bowl stuff very seriously.

And Aaron continued.  “You should have obeyed me and voted for that other team.”

Whatever.

But Aaron wasn’t quite done for the day.  At supper, Aaron once again laughed and then told us about one of the staff at his day group.  “Andrew voted for Seattle and they won.  I told him that my mom and dad voted for the Broncos.  You all should have voted for Seattle!”

OK, Aaron.  Well, let’s talk about something else. 

Have you seen any good alien movies lately?

 

I Survived…….WOW!!!

I am reporting in to all of you who might be wondering how I am doing today.  Many of you read my last blog and you know that I was committed to having a WOW day yesterday. That’s War of the Worlds to those of you who may have missed that bit of info.  All day long, Aaron asked many questions.  Are we watching War of the Worlds?  What time are we watching War of the Worlds?  Are we watching Wheel of Fortune?  Then after Wheel of Fortune are we watching War of the Worlds?  What time will that be?    Did you know that War of the Worlds is one hour and fifty-seven minutes long?  Are you sure that one hour and fifty-seven minutes is not too long?  Can I eat my peanuts while we watch War of the Worlds? 

I was exhausted before our one hour and fifty-seven minute movie even started.

And one hour and fifty-seven minutes was looming over my head, seeming very, very long indeed.

I had told Aaron that we would watch the movie after Wheel of Fortune, which would be 7:00.  But in order to cover all my bases and to prevent a total meltdown from Aaron, I made sure he understood that IF something came up that required my attention, then we would watch the movie as soon as that something was taken care of by me.  I know that I must always give myself an out with Aaron so that he……hopefully……..will cooperate in the event of a change to our plans. 

Sure enough, we had a change in our plans.  Andrew called, so I told Aaron that as soon as Dad and I talked to Andrew, then he and I would begin our WOW evening.   Just as I expected, Aaron was soon hovering around us as we sat on the couches downstairs and talked to Andrew.  I waved my hand and shooed him off, but soon he came back……….and left the room………and came back again………several times.  Aaron thought that this phone call was taking entirely too long.  Before the call was over, Aaron was sitting cross-legged on the floor………sighing and rolling his eyes…….and making comments about how he didn’t care about Andrew calling and that he knew Mom wasn’t going to watch War of the Worlds after all.  Even my evil eye was having little effect at this point.  The zapping power of the WOW aliens was more and more appealing to me, to be honest. 

 
We started the movie a little after 8:00.  Aaron had his animal print blanket all spread out and his bag of peanuts ready and his bowl there for all the peanut shells.  Oh, and his back scratcher that he uses to whack the arm of the couch when he gets really excited……which was often on this WOW evening.   He was beside himself with excitement as the narrator began talking about those that were watching our world from outer space………watching with cruel and unsympathetic eyes. 

“See Mom?!” Aaron exclaimed.  “Now we know they’re unsympathetic!”

Yes, Aaron, they are.

“So what does that mean?” he asked.  And I tried to explain this emotion to him for the umpteenth time, as well as the concept of cruel eyes.  But he was already off on something else, rubbing his hands together in excitement.

“Mom, that’s Ray!”      “That’s Ray’s son!”    “That’s Ray’s house!”   “That’s Ray’s daughter!”

I know, Aaron.  Just be quiet and let’s listen.

“Mom!!!   That’s my favorite part!”  he yelled as the lightning started.

CLAP!!!!!!!!!!

As if the movie isn’t loud enough, Aaron.  QUIT CLAPPING!!!!

“Watch this, Mom!   That’s my favorite part!”  he yelled again as the ground cracked open.

“MOM!!!!   The alien ship is coming out of the ground!!  Now that’s my favorite part!!!”

Good grief, Aaron, how many favorite parts do you have?

“I have other favorite parts!” he declared as he rubbed his hands together again in great excitement.

“Oh, Mom!!  Look at this!  They’re going to zap everyone!”

And yes, the zapping began in earnest.

“This is my ALSO favorite part!!  Get it??!!”  he nearly yelled.

Oh my word.  How many minutes are left?  Is this just the famous chapter six out of how many chapters?!

But I did survive, along with Tom Cruise and his two children, of course.  The lightning and the aliens and the overturned ferry and the near drowning and the fires were not a big deal.  Aaron’s incessant talking and his very loud clapping and rubbing his hands together, however, nearly did me in.    My WOW evening was nearing an end when Aaron said, “Now do we understand this movie now?  They were unsympathetic and cruel!”   Aaron loves that phrase for some reason.  And I knew that I would be explaining it over and over before his fascination with this movie was over.

Earlier, he had decided to quit his rapid eating of all those peanuts.  His bowl was full of peanut shells as he set it to the side and said, “Are you glad I got off the peanuts?” 

I wish it was as easy for him to get off this WOW movie.  This morning he was at it again, asking tons of questions and clarifying all the points that I thought we had already clarified and re-hashing their unsympathetic and cruel eyes. 

He would make a statement and then say, “Is that how you would put it?” 

Oh, Aaron.  I am so ready to put it away.  Let’s talk about something else.  We had our WOW evening.  Can that be enough?

We got home from church and I heard a sound coming from Aaron’s room.  I peeked in, and sure enough, he was watching a scene from WOW. 

Wow!

When will it end?  When will he have had enough? 

Not as soon as me, I can tell you that.  We never know with Aaron.

He wanted me to come and look at this scene again with him, the one he was watching right then.

Do I tell him that at this point, I have cruel and unsympathetic eyes?   So tempting………

WOW!!

Autism 101:  Individuals with autism, particularly Asperger’s Syndrome, tend to have “eccentric preoccupations or odd, intense fixations.  They tend to lecture on areas of interest; ask repetitive questions about interests; have trouble letting go of ideas…..”   (Karen Williams)

WOW!   Not wow in the sense of……..well, wow………but WOW in the sense of today is War of the Worlds day.  Therefore, I have labeled our day WOW day.  In more ways than one.

I must watch War of the Worlds with Aaron if I am to have any peace in my life.  His intense fixation with this movie must end, and the only way to head toward that goal is for me to honor my word and to watch this movie with him.  Perhaps then, after seeing WOW, he will let go of all the WOW talk and all the WOW questions and all the WOW lectures.  Of course, he will eventually move on to a new focus.  It may be a new movie………it may be a news headline…….it may be a game………..it may be ANYTHING.   Sigh.

It is funny, if I can just remember to keep my sense of humor intact during the endless WOW talk.  This morning he joined me at the kitchen table, early.  He didn’t sit down but he stood there peering at me.  I greeted him with a good morning, and he smiled……….and then said, “Mom, in chapter six…………”  War of the Worlds, first thing on a Saturday morning.  It must end.  I hope.
 

“In chapter six there were lights.  Why were there lights?”

“What was that screeching noise?”

“Why did that screeching noise bother people?”

“Why was that guy taking pictures?”

Coffee helps.  I got up to make a fresh pot.  I had already poured a cup for Aaron, but seeing the fresh pot starting to perk made him want more. 

“Mom, I’ll get it when it’s over.”  Seeing my clueless expression, he continued. 

“You understand?”  And it hit me that he was talking about the coffee.  When it was over……when the new coffee was brewed…….he would get another cup. 

Yes, there is much to understand about Aaron.  He was soon back at the table where I was sipping my own coffee.  “Mom, if you want to watch War of the Worlds, come and get me.  OK?”

OK, Aaron.

“Come to my room and get me.”

All right, Aaron.

“Will you come to my room?”

YES, Aaron!!!!

 
Understanding Aaron is key to living with Aaron.  It doesn’t always make it easy, but it does help to understand how his complex and amazing mind works.  His connections are not like yours and not like mine.  They are Aaron’s.  For whatever reason, War of the Worlds is the focus of his life right now.  Therefore, it has become the focus of mine as well. 

I redirect his thinking when I can.  I talk about other things……….I tell him that we will discuss this movie at another set time………..and other “tricks of the autism trade.”

But nothing will erase Aaron’s fixation on this movie at this point in his life.

Wow!

And WOW!!  So today is WOW day and one way or the other, I will watch WOW, and I will listen to Aaron’s yelling, and to all of his comments, and his questions, and to the LOUD clapping that is sure to come. 

And I WILL sneak the remote away from his sight.  There will be no pausing of this movie in order to inspect every remote element of every scene.  Especially in chapter six. 

I am a survivor.  I will survive this day and this movie.

WOW!!!!

What Was I Thinking, Indeed?!

I know that as parents we often wish we could go back and change some things.  We wish that we could say something we didn’t say, or take back something that we did say.  This is how I am feeling tonight……….kicking myself for something I said to Aaron.

I told Aaron that I would watch War of the Worlds with him.  Not that I might watch it.  Not that I would think about watching it.  Not that I would see if I could watch it someday.  I told him flat out that I would watch War of the Worlds with him.

What.   Was.   I.   Thinking.

Aaron is literal.  Aaron doesn’t forget literal comments.  My comment was literal.

He and I were watching Wheel of Fortune.  Well, I was watching Wheel of Fortune.  Aaron was busy shelling peanuts, happily dropping the shells into his bowl (of course), chewing the peanuts thoroughly, and trying to slyly brush any stray shell pieces off into the floor and then further brushing them under his chair.  Shell, drop, chew, brush…….shell, drop, chew, brush.  Over and over. 

When he wasn’t chewing….or often when he WAS chewing……..he was talking about War of the Worlds.  Every aspect of the spaceship and the aliens was being discussed as I tried to watch Wheel of Fortune.  I’ve become quite attached to this game show.  Aaron is mostly attached to the snacks he eats during this game show.  Anyway, I was halfway answering his questions as I watched Vanna turn the vowels and “constanents,” as Aaron calls them. 

I told him a few days ago that I remembered (sort of) watching War of the Worlds when it came out several years ago.  I told him that I thought it was a good movie as far as alien movies go.  Aaron thinks that ALL alien movies are good, but he knows that I don’t agree.  So for me to say that I thought War of the Worlds was pretty good is like throwing gas on a fire.  Aaron is on fire!  He thinks that not only should I remember every detail of this movie, but that I should want to talk about it over and over and over again. 

As he kept his War of the Worlds monologue going during Wheel of Fortune, I heard him ask something about us watching this movie together again.  Before I knew what was happening, the words had come out of my mouth.  “Yes,” I heard myself say, “I’ll watch War of the Worlds with you.” 

When Aaron’s head shot up, I knew that I was in over my head.  I had made a definite commitment.  I had said this thing that I could not take back.  Aaron had processed my comment and filed it away before he even popped the next peanut in his mouth. 

Oh boy.

It didn’t take long for the inevitable to start happening.  “So Mom,” Aaron excitedly said, “when do you want to watch War of the Worlds?”

I don’t know, Aaron. 

“How about tomorrow night?” he asked,

Probably can’t do it tomorrow night, but I’ll let you know when I can.

“OK,” he said.   Pause.  “When do you think you can?”

Aaron, I’m not sure but I’ll let you know.

Thankfully, we were interrupted by a visit from friends…….but I eventually did have to go back into the family room, where Aaron was still busily eating those blessed peanuts. 

There was peace for a minute or two.  Then…….”You want to watch War of the Worlds, right?” 

Right.

“Do you know when?”

No, Aaron, I’m still not sure about that. 

“I was just wondering,” he said.

Soon he went downstairs to discuss something with Gary, and then when he came back upstairs and turned the corner into the family room, he interrupted my basketball game with, “Mom, you just let me know when you want to watch War of the Worlds.”

Yes, Aaron, I will.

Thump, thump, thump up the stairs he went.  Not even two minutes went by.

Thump, thump, thump down the stairs he came.

“Mom, we can watch War of the Worlds some night.”

Just this flat statement.  And I just as flatly answered that we would watch War of the Worlds……..some night. 

“You don’t know when?”

I wanted to tell him that if he didn’t hush, there was going to be a war in our world.  But I didn’t.  My mouth had already gotten me into too much trouble tonight.  I just told him yet again that I did NOT know when. 

Thump, thump, thump……..and I remembered that I needed to do a couple things in the kitchen.  The peace I was enjoying was short lived.  Did I hear………yes, I did………thump, thump, thump. 

“Hey, Mom!  Chapter six in War of the Worlds is my favorite chapter.  Is chapter six your favorite?”

Aaron, I have no idea if chapter six is my favorite.

“Well, you should watch it to see.”

Touche, Aaron, touche.  That was clever. 

And don’t you know it wasn’t long before I was sitting on the edge of Aaron’s bed, watching the big scene from chapter six that made it Aaron’s favorite chapter? 
 

When we DO watch War of the Worlds, will he let us fast forward through this scene in chapter six since I just watched it with him?  Not likely.

I also sat there and watched how the grenades blew up the alien ship and killed the alien…….like reading the ending of the book first.  Can this count for watching the whole movie?  Not likely.

As we got ready to play a quick game of Skip-Bo later, he told me that a woman did such-and-such in chapter 10, and this happened in chapter 22, and something else in chapter 19.  Good grief.  How does he remember all that?

The same way he remembers that I made one brief little comment about watching War of the Worlds and I forgot to insert the word “might”…….or “maybe”………or “perhaps”……..

Tomorrow he has a dentist appointment.  I might have 15 minutes of peace.  Maybe 15 minutes of Aaron not being able to talk about War of the Worlds. 

Perhaps. 

 

Little Is Much

We live in a world where bigger is usually seen as better.  A bigger house; bigger job; bigger bank account; bigger TV screen; bigger stores; bigger selections; bigger sales; bigger churches; bigger buildings; bigger budgets.  It’s not that these things are bad, but I was thinking this morning about how God likes to use the little.

A little couple in the Garden of Eden; a little Joseph being thrown in a pit; a little baby Moses in a basket; a little David watching sheep and slinging little stones; a little Moabite girl named Ruth; a little Jewish girl named Esther; a little widow with a little flour and a little oil; a little servant girl of Naaman’s wife; a little young man named Daniel; a little town of Nazareth; a little couple named Joseph and Mary; a little dirty cave; a little carpenter family; a little boy with little loaves and fishes; a little woman of Samaria; a little group of disciples; a little man named Paul; a group of little churches; a little man named John banished on the little isle of Patmos………

It’s a pretty big list of little things and it isn’t nearly complete.  We could add some things today. 

A little mommy singing little songs to her little children.   A little daddy reading from a little Bible as they gather around a little bed at night.

A little smile to a little stranger.

A little card in the mail.

A little phone call to encourage.

A little hug.

A little prayer.

God uses the weak, the little, to confound the mighty.

Let’s remember the words to that old hymn:  Little is much, if God is in it.

God wants us to give Him our little and watch Him use it in a big way. 

Back to Normal, For Now

This has been a wonderful weekend for Aaron, especially compared to last weekend when he was feeling so horrible with all the seizures he had.  And the weather has been pretty and warm, so he was able to get outside for his relaxing time in the mulch.  Sorry for the picture through the screen.  Aaron is getting a little tired of all the pictures that Mom wants to take, so I didn’t let him see me taking this one.  J 

He enjoyed a trip to Dillon’s, where we had fun looking at pomegranates and kumquats……..and where he got to buy some of his favorite croissants (pronounced as croysants if you’re Aaron).  His eating has improved over the course of this week, but it’s been slow in coming.  And he’s been so slow all week in every way – in his movements and his speech and his eating and his thinking. 

He’s getting tired of us mentioning anything remotely to do with his health or with how he’s feeling.  Last night he got his bed ready in the meticulous way that he does.  There’s Mr. Snake, who will be moved under the covers beside Aaron when it’s time to go to sleep.  This is Aaron’s pre-sleep set-up that he has as he reads his Handy Answer Book.  He changes everything when it’s time for actually sleeping.  Routine, routine, routine.  So anyway, I mentioned something last night before I left his room that made him think I was going to talk yet again about how he was feeling.  He said, “Stop with all the how I’m feeling stuff!”  I think he’s on overload and ready to get back to normal.

He clipped all my coupons today even though there were lots of them, and he did it without taking a break.  He’s back to clapping loudly when he watches television, especially Wheel of Fortune.  Man!  Tonight I had to tell him to stop, but it felt nice to actually hear him clapping, if that makes sense.  He’s been yelling as he watches a movie in his room, and talking our ears off about the latest alien plot that he’s trying to figure out.  Annoying sometimes?  Yes.  But right now it’s a welcome sign that Aaron is back to his normal self, and we’re thankful.

We took a walk around our neighborhood circle this evening.  It was a beautiful evening for a walk, so we stopped by the lake and snapped a few pictures.  When I compare last week’s picture, taken at about this very same time of day as today’s shot, I’m very thankful for the huge difference.  

 
Aaron and I will see his autism doctor tomorrow.  We’re continuing to pray for wisdom and direction as we talk to her, and then to Aaron’s Epileptologist in February. 

And Aaron……..he’s planning where we will eat tomorrow for lunch, when he’s not talking about aliens.  I was so bogged down in aliens as we took our walk that I had to re-direct him to the first thing that came to mind, which was naming various restaurant possibilities for tomorrow.  But he’s talking, which he can’t always do after some of his seizures, so again I’m thankful. 

Sometimes the hard times change our perspective on thankfulness.  What we took for granted in the normal times becomes huge when it’s taken away, and if it’s restored then we just well up with thanks.  I know myself, and I know that I’ll end up taking things for granted or I’ll get irritated too often again as I tend to do. 

Like yesterday……when Aaron was eating lasagna………and I stepped out…….and Jackson the lucky Great Dane had a nice piece of lasagna for his lunch. 

Aaron!!! 

Footprints in the Water

Israel was in bondage in Egypt when God raised up a deliverer, Moses.  The people watched with wonder as God performed miracle after miracle.  A staff that turned into a serpent;  water turning to blood; frogs; gnats; flies; locusts…..   So many signs and wonders God performed.  So many tangible evidences of His might and power.  Then at Passover, the application of the blood on the door posts, the deaths of the first born of the disobedient – more evidences of God’s working.  He was there with them, unmistakable, and working among Israelites and Egyptians alike.  The proof was everywhere to be seen.

Finally Pharaoh let the people go.  They left Egypt quickly, trusting in God’s power to protect them.  God led them by a pillar of cloud during the day, and at night a pillar of fire.  This was just even more evidence of God’s plan being fulfilled for Israel, and more proof to these weary people that God was leading them forward.  They were progressing onward, yes, but they had no idea of what was just ahead.

God told Moses to have the Israelites turn back from where they were and to encamp by the Red Sea.  I wonder how many Israelites had serious doubts about this decision that God had made.  Still they were safe, though, because there were ways around the sea.  That is, until they looked out on the horizon and saw the hordes of Egyptian soldiers bearing down on them.  There was no way of escape now.  They were surrounded by water that was impassable, and by soldiers that were impassioned, and by a situation that was impossible!

The people of Israel feared greatly at this reality.  Gone were the thoughts of locusts and frogs and water turning to blood.  Gone was the trust that we think they should have shown in the God Who had led them this far by performing so many miracles.  All they could see was the hopeless situation all around them, and the doom they knew was impending.  They cried out to the Lord and to Moses in their fear and anger.  “What have you done to us in bringing us out of Egypt?  It would be better for us to serve the Egyptians than to die in the wilderness!” 

Moses replied, “Fear not; stand firm, and see the salvation of the Lord which He will work for you today.  The Lord will fight for you and you have only to be silent.”  What?  Be silent?  We’re all going to DIE!!!!  Those are my words because I imagine I would say something like that in this situation……which is why I was so struck the other  morning as I read Psalm 77:19:  “Your way was through the sea, your path through the great waters; yet your footprints were unseen.”

God’s footprints were all over the place as He brought plague after plague upon the people of Egypt.  It’s comforting to have footprints to follow when you’re going through a hard time, even if you’re not exactly sure where they will lead.  The Israelites never dreamed that God would lead them to the Red Sea and then leave them there as they were surrounded by the blood thirsty Egyptians.  They forgot God’s power as they looked at their seemingly impossible situation.  They forgot to trust when God’s footprints were unseen in the water.

Yet God’s way for Israel was through the sea.  His path for Israel was through the great waters.  Sometimes that’s where my path leads, too – up against situations and events that are deep with trouble or fraught with questions.  God wants me to venture forward, trusting in Him even when I can’t see his footprints in the water.  You see, it’s not the footprints I need to be trusting.  It’s God Himself that I need to lean on with faith and obedience. 

And I can fully claim the promise of Isaiah 43:2:  “When you pass through the waters, I will be with you; and through the rivers, they shall not overwhelm you.”

 

 

Let’s Get This Working!

Aaron has had epileptic seizures since he was in the first grade.  While I can’t say that we ever get used to seeing him have a seizure, we are used to the fact that he has seizures.  They’re all difficult to watch, though – very difficult.  For the past few years, the majority of his seizures are at night.  On a rare occasion he might have one during the day while he is napping.  We keep a baby monitor on our nightstand so that we can hear him if he seizes during the night.  We just got a new monitor with a talk button that we can push down and then talk to Aaron in his room.  At first he didn’t like this.  He said that we were spying on him.  But now he thinks that this is pretty cool, and on the occasions that I have talked to him, I can hear him chuckle.  

His seizures have been spaced weeks apart for quite a long time.  We’ve become comfortable with this level of seizure control.  But over the past two months or so, his seizures have become more frequent.  Now they have been occurring every 10 to 12 days.  This isn’t good for many reasons, and of course we wonder why there is an increase.  We recently put him on a medicine to help control some of his impulsiveness and anger outbursts.  We wouldn’t do this unless these issues – these behavior issues – were interfering with his life and happiness………and they do just that.  However, many of these drugs can also lower the seizure threshold in those already prone to having seizures.  The medicine that Aaron takes only has a .1% chance of having this side effect.  We hoped that it wouldn’t increase his seizures.  We still don’t know if it is.  We are now removing him from this medicine, will see his two specialists soon, and will have many decisions to make.

Poor Aaron.  Sometimes I feel like he’s a pawn in this great guessing game of medicine controls.  It’s a huge responsibility for us as parents, as any parent of a child with medical issues can attest.  Aaron’s health and safety and happiness are our primary concerns.  It’s just very hard to know if we’re going in the right direction to achieve those aims or not.  What helps might also hurt.  There is so much weighing to do…….so many decisions to make. 

Early this past Sunday morning I heard that awful sound on the monitor by our bed that told me Aaron was having a seizure.   It was just after 3:00 a.m.  Then again he seized almost exactly 2 hours later, and again 2 hours after that.  3:00…..5:00…….7:00.  His poor body.  Aaron’s seizures are hard, and sometimes last for close to 3 minutes.  He made his way down to the kitchen sometime after 8:00 that morning, all groggy and with a terrible headache.  I had him take his pills, but right away he laid on the couch and told me he felt sick.  I ran for the trash can and he promptly threw up all his pills.  He spent the entire rest of the day sleeping, throwing up when he was awake, and managing to keep down a little ginger ale.  Did he have a stomach virus along with the seizures?  Sometimes he throws up after seizures, but this was extreme.

 
At 5:20 that evening, Gary and I watched him have another seizure.  Afterwards he was totally limp, and later when he awakened some, he couldn’t speak.  That’s always a hard thing to see.  At 10:00 he took his night pills, threw them all up, and later was able to finally keep a second set of pills down.  And he slept all night…………no more seizures and no more throwing up.  I was amazed at all that sleeping! 

On Monday morning I went into his room several times to check on him.  Finally, I made some noise and he woke up, giving me an Aaron smile as he stretched his arms and legs.  He made it out of bed, and I had him scoot down the stairs on his bottom while Gary stayed in front of him to catch him if he fell.  He was just too unstable to walk down a flight of stairs.  He was much more coherent and alert, though still slow.  I knew he was hungry after not eating for 36 hours.  He said that some applesauce sounded good, so I fixed him some and watched him as he slowly ate……..and stared……..and leaned over………..and ate some more.  Feeling that he was tired, I told him that he could take a break and have some more applesauce later.  “How ‘bout I do it now?” he asked.  So hungry Aaron ate more applesauce, of course, and then drank coffee.  He was feeling better by the minute!

He had a good day……..slow and quiet, but very good compared to the day before.  That evening I asked him if he wanted a haircut and he quickly agreed.  I know it felt great to him to get out of the house, and he always loves getting a hair and goatee trim.  Then we walked down to Papa Murphy’s and got his favorite pizza for supper.  Later, he very slowly ate his piece of pizza.  I commented to Gary that I could tell Aaron didn’t have an appetite because of how slowly he was eating and because he had said he just wanted one piece of pizza…….unheard of for Aaron!  Very softly he said, “I have an appetite.”  And I assured him that it was fine to not want to eat much.  Then he reached for another piece of pizza, which I knew he didn’t want, as he repeated, “I have an appetite.”  It’s OK, Aaron.  You don’t have to eat.  And later, as he was settled in his chair to watch Wheel of Fortune and I was cleaning the kitchen, out-of-the-blue he said, “Mom!  I have an appetite.” 

Yes, Aaron, we’ve established that.  And I’ll know next time not to accuse him of losing his appetite!

He’s been doing fine yesterday and today.  He went to his day group both days.  He’s still very slow, almost like he’s in a daze.  He doesn’t have his usual bounce and hasn’t been talking much.  As I’ve said before, this quietness is a side of Aaron that is always concerning. 

Last week he came home as the proud owner of a new Whoopie Cushion.  I believe one of his day staff won it at All Star Sports and gave it to Aaron.  He hasn’t wanted to open it or to use it.  Does he remember the last time he had one?  We all laughed and laughed together as we each sat on it, including Aaron.  But then Aaron put it on the floor and from a standing position he sat on it with full force.  It exploded!  And we all nearly died from laughter.  Maybe Aaron is now cautious about his Whoopie Cushions after such an explosive event.

 
Last night as I helped Aaron get his bed ready, he reached over on his bookshelf and held up the still packaged Whoopie Cushion.  “Mom, I hope we don’t get this working!” he said with a smile on his face.  No amount of talking on my part could convince him to get the Whoopie Cushion working.  He tucked it back onto his bookshelf and headed for bed.

Who can tell what Aaron is sometimes thinking?  And I’ve been thinking about that statement today.  I DO hope that we get Aaron and his body working again the way it should………the way that is safe and healthy for him.  I also hope that his fun personality comes back, not in an explosive way but in the amazing way that is so Aaron.  His unique view of life……..his funny comments………his amazing insights.  All of these traits are what make Aaron such an interesting, and sometimes frustrating, person to live with. 

He just came home from his group, immediately coming downstairs to find me.  “Mom!  Barb said I made a new friend today.”  Then he told me about J., whom he hasn’t gotten along with too well.  “J. had some silly putty and he put it over his mouth.  Then it made farting noises!”  Aaron was laughing as he told me, and apparently was laughing a lot at J. as he did this….and J. was laughing as well.  “Those farting noises were funny!”  Aaron said.

I think Aaron’s coming back.  I’ll take it…….I think. 

 

Getting Back in the Groove

I have definitely been out of my groove lately……and when mama is out of her groove, Aaron responds.  Both of us being out of our groove makes for some interesting times around here.  Both of us have been physically down at one point or another since before Christmas.  I was sick before Christmas, the week after Christmas, and again this week with my first ever sinus infection – for which I got an antibiotic that I hope will completely remove whatever bug is in my body for GOOD!  Aaron has struggled with some seizures; a bad sore throat that I shared with him because I’m nice that way; and an upset stomach that caused him to completely lose every bite of his favorite lasagna immediately after he got up from the supper table last night. 

Can we be done now?  I certainly hope so.  Yet I don’t want to complain.  We enjoy very good health most of the time.  And Gary has remained healthy through all this, which has been a blessing. 

Aaron isn’t used to seeing me sick.  I mean, he’s seen me not feeling well but to see me in bed in the middle of the day is unusual for him.  To see me cuddled under a blanket on the couch when it’s dinner time is highly unusual.  And of course, if something affects Aaron in a negative way then he will react.  And his reactions are not of the kind and caring variety, hardly ever.  He would have a very difficult time portraying care for me, although he has done that on occasion with a hug or by sharing a band-aid. 

On Monday, however, when I felt my worst and had been to the doctor, Aaron was at a loss.  This was the day that I was on the couch while Gary fixed Aaron something to eat.  When Aaron walked through the family room, I saw his eyes dart quickly over to my huddled form……..and then look away again just as quickly.  He had that familiar scared look on his face that I’ve seen so often…….the look that tells me he is uncertain and uncomfortable.  He cannot bring himself to express feelings like you and I can, but he must show something………and so he shows a measure of fear.  And also anger. 

I understand this about Aaron but it still puzzles me sometimes.  That evening as he walked several times through the family room, he made some comments or asked some questions.  I don’t even remember what they were, but I remember that he was mad.  I watched Wheel of Fortune with him, which I thought might help, but he was still showing frustration toward me.  Actually, though, the frustration was really aimed at the situation.  Mom being sick and out of commission made Aaron feel insecure.  His insecurity is shown by frustration, which is often exhibited with anger.  That night was no exception.  It didn’t get out of hand but his anger was evident in his tone of voice and his impatience.  I knew to just let it ride and to give him space, not asking lots of questions or trying to engage in much conversation.

Of course, the next morning he hoped that my sickness would mean that I couldn’t drive him to meet his day group, and therefore he would have an unexpected day to stay home.  When I told him that I was feeling better and that I could indeed drive him, he was suddenly wanting Mom to be sick again.  So funny how that works!  Again, Aaron is all about Aaron most of the time.  That night I knew that some one-on-one time with Aaron would mean a lot to him, so we played Skip-Bo……..and he was very happy!  It did us both good to spend that time together, despite his attempts at cheating.  He is quite adept at picking up extra cards or digging under the pile for a card instead of getting the one on top or any number of other cheating techniques.  I don’t dare turn my back on him during a game!

 
Two days later, though, Aaron for some reason had a very sad spell at his day group.  He cried there, wanting to come home so that he could “have fun”, and when he walked in the door at the end of the day he was a mess.  His eyes were swollen and blood shot, his neck red from rubbing his jacket back and forth over his skin, and he continued to cry as we talked.  When Aaron cries, then we know that he is extremely frustrated.  He kept declaring that nothing happened, that his friends were very nice when he started crying, and that he just wanted to come home.  He was somber at supper and for the rest of the evening. 

The next morning, Friday, he came downstairs fairly early.  He was still very quiet, and asked if he had to go to his group.  I said yes, which he calmly accepted – much to my surprise.  We talked about things Aaron likes to do at home and I told him that he should read more than just before bed……the only time that Aaron will read.  He said, “Like now?”  I said yes, and so he went up to his room, soon returning to the kitchen table with his Handy Answer Book and his watch, of course.  Keeping track of time is very important, you know! 

 
This was such an unusual moment!  For one thing, I was clipping some coupons I had hidden from him because he thinks he must clip ALL the coupons, but gets angry when he’s tired of all the cutting.  So I had hidden these and he caught me with them.  He asked about them, but he didn’t insist on doing them himself.  And the other thing was the simple fact that Aaron was reading his book in the morning!!  Not at night before bed, but in the morning……….gladly sitting across the table from me, seriously reading his book, with his watch perched near him so that he could see the time.  It was all very sweet and special to me.

I told Aaron that I would fix him his favorite lasagna for supper, and he was happy about that as we later drove to meet his group.  When he got home, he still seemed unusually quiet and remained so at supper.  He hardly said a word to Gary and I as he carefully took the top layer of cheese off of his lasagna, like he always does………because he saves eating it till last.  He was so quiet that we were a little worried, and then really worried when he didn’t want his salad, which he loves.  And he only wanted one helping of lasagna.  He laid on the love seat after supper, and within a minute he asked for a trash can…….and Gary and I ran, with Gary barely making it in time to hold the can for Aaron to use as he threw up all of his lasagna. 

Well, maybe that explained his somber mood over the past two days and his very quiet demeanor.  He dozed on the couch but didn’t throw up anymore.  The rest of the evening still found him being very unlike himself.  He was happy to go to bed and he slept well all night.

When he came downstairs this morning, his eyes were bright and he had a big smile.  “Mom!” he exclaimed, “I was upstairs watching a movie.  I have been not asleep!”  And I knew that Aaron was back.  He was talkative and happy, and proud of the fact that Mom probably thought he was up in his room sleeping late, but he had “been not asleep.”  I love the way Aaron arranges his words, and I love to hear him talk (most of the time!), and I love to see him happy and chipper.  He has been bouncy today, and full of talk, and he laughs as he tries to whack us when we walk past him.  Typical Aaron!

A while ago I put a load of clothes in the dryer and turned it on.  Right away I heard such a loud racket that I opened the dryer door to investigate.  Soon I found the cause of the noise…….a huge plastic die from a game of some sort.  And yes, Aaron had brought it home in his pocket……….his often bottomless pockets that hold his many found treasures.  And yes, he grinned broadly when I showed it to him and yes, he objected when I told him that he must take it back to Paradigm.  This is all so true to Aaron’s nature.

 
And I thought of how Aaron’s talking and all his noise and clatter are so typical of him………so true to his nature.  I miss it when he’s too quiet.  I don’t like it when he’s serious and somber.  I’ve gotten used to the loudness that is Aaron, and to all the clatter that tells me Aaron is fine and Aaron is being………Aaron. 

I’m thankful that he and I are both feeling better, and that we’re both getting back in our groove.  Sometimes I crave the alternative with Aaron…………quietness……….but I realize it’s not natural and I don’t like it at all.  The breaks I get from Aaron are needed and good, but when Aaron comes home, I want the real Aaron.

Loud clattering and chattering and all!