The Introduction

Sharing stories about Aaron is a good way to have insight into how Asperger’s Syndrome affects not only him, but all those who live and work with Aaron.  A key to surviving life with Aaron is to understand what makes him tick.  Then you can better function yourself, and not live in constant frustration or bewilderment.  Training and directing him is also accomplished with better results when you can get inside his head and realize just how and when to redirect, or when to wait it out. 

But then there are those times when you have no idea what is going on inside that head of Aaron’s until it’s out there for all the world to see and hear.

That scenario happens often with Aaron and us. 

We moved to Wichita (Goddard), Kansas in 1999 when Gary retired from the military and accepted a job here.  A couple years later we enrolled Aaron in a school here that offers training to high functioning special needs students.  This training prepares them, hopefully, for the job market upon graduation.  There were many great aspects of this school and its program, but it never was a good fit for Aaron.  

I’ll never forget the open house and parent night during Aaron’s first year.  The students were to accompany their parents into each of their classrooms and introduce us to their teachers.  The students were treated as adults and so were to address each teacher by their first name.  The evening was going very well and Aaron was doing a great job.  It was nice to meet each teacher and to see his new environment that he was to be a part of now. 

The evening was winding down and we had one more teacher to meet.  As we stood in the hallway, waiting for the family ahead of us to come out of the room, Aaron was beside himself with excitement.  When he’s excited he bends over and rubs his hands together, over and over.  He hadn’t acted this way with any of the other teachers and so we were perplexed at this behavior.  We tried to get him to calm down but to no avail.

Finally, the room was empty and we walked inside.  There stood his teacher, with a very pronounced spiked haircut.  Remember how Aaron is attracted to the unusual?  Well, Aaron thought that her hair was just that……very unusual.  Of course, Aaron had not shared anything with us about her hair.  If he had, then perhaps we could have averted what happened next.  

Aaron quickly walked over to her, rubbing his hands together, and said, “Mom and Dad, this is Cindy (name changed).  She looks like a hedgehog, doesn’t she?!”  

Oh.  My.  Goodness.  Time stood still.  We were horrified.  Aaron was delighted.  Cindy was unhappy.

I’m surprised that I’m still living, as many times as Aaron has caused my heart to nearly stop. 

Her reaction told us that things would not be easy for Aaron in this school.   I’ll just say that it was a very long two years. 

But Aaron did LOVE that haircut! 

For the whole two years.

Trust me.

The Picture We Leave

Today I have found myself, several times, with tears in my eyes.  We all have days where emotions are close to the surface, don’t we?  Maybe it was the very, very touching video I watched today of how some boys reached out to their neighbor who was their age and in a wheelchair.  If Aaron hadn’t been with me, I would have cried much more after watching that clip than I allowed myself to cry.

Maybe I was teary today because of stories I’ve seen of others who are bearing sorrows and pains of this life.  Some hit close to home when the stories are from ones I know and love. 

Maybe I was feeling vulnerable today because Aaron had a small but hard seizure very early Sunday morning.  He was fine all day yesterday, but threw up last night.  A bug?  Or the amount of pizza he ate for lunch?  He stayed home today, not feeling too great yet, and had another seizure this afternoon…..a hard, three minute seizure.  My already raw emotions were knocked around even more during that seizure, which isn’t usual for me. 

I know, though, that the real reason for my unsteady emotions goes back to a picture in my mind…..a snap shot of Aaron on Friday afternoon, in Subway.  Aaron wanted a sub for his special Friday supper.  I always hope that there won’t be anyone in front of us because subs take a while to fix…..and Aaron is usually talkative, loudly, with me never knowing what he will decide to discuss there for everyone to hear. 

As we pulled in and parked, though, I saw that there were several cars in the parking lot.  A young family was walking in just before us.  Dad and Mom were each holding a young daughter.  There were others in front of them.  I asked Aaron if he was sure he didn’t want a pizza instead, but of course Aaron’s heart was set on a sub. 

As we stood behind the young family, the little girl that was being held by the dad caught Aaron’s attention.  I looked over and saw that Aaron was looking at her, and then leaned around him a little to see that he was holding his hand up.  He was showing her his favorite thing……the peace sign.  She wasn’t sure what to make of that, or make of Aaron.  She may have been three or four years old, and so I’m sure that Aaron’s peace sign meant nothing to her. 

It really was funny……Aaron standing there holding the peace sign steady, with a very serious look on his face.  No smile for the little girl……no emotion……no explanation.  Just somber Aaron doing all he knew to do…..spread some peace, thankfully.

The little girl thought that maybe Aaron wanted to play peek-a-boo, but Aaron didn’t cooperate.  He was just a statue, with a peace sign displayed.  So I played peek-a-boo with her as she tried to hide behind her dad’s shoulder.  Aaron was still in peace mode. 

But then, while I was immersed in this cute little girl’s smiles, Aaron quickly unzipped his wallet.  Before I knew what he was doing, he was holding his open palm out for the dad to see.  And in Aaron’s open palm was the rest of his money left over from his day at Paradigm.  Three cents.  Aaron was trying to give this young dad his money…….all three cents……but a fortune to Aaron. 

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Aaron loves to give things to people.  He really loves giving money away to others.  So he had decided to give this dad his money to help him pay for their dinner.  I knew all this in the split second it took me to see what Aaron was doing……and to also see that this young dad was completely uncomfortable with what was happening.

The dad was looking down into Aaron’s palm but he didn’t say a word.  I thought for sure that he would thank Aaron for the offer but then tell him to keep his money.  I thought he would look at Aaron and smile and be kind to special Aaron.  But no, he just looked at Aaron’s three cents and kept looking down, not making eye contact and not saying a single word. 

It was so awkward and so sad……and honestly, pretty hurtful to me.  I doubt that this young man had any idea that it was hurtful.  He was just clueless about what to do.  I find that amazing, though.  A kind word, a look in Aaron’s eyes, a thank you, should not have been that hard to do.  Right after that, this dad moved away from Aaron and then eventually went with his little girls to sit in a booth while his wife ordered.  I don’t know if it was because of Aaron or not.  But he sure did miss a great opportunity to show Aaron some kindness, like Aaron was showing to him. 

But it’s made me also think of another quite opposite experience that we had when we were home in West Virginia for Thanksgiving.  We had recently gotten Aaron a Nintendo 3DS game for his birthday.  We let him play it at our family gathering, which wasn’t the best idea because it was all he wanted to do.

Anyway, when the time together was wrapping up, the sweetest thing happened.  Young Moira……granddaughter of my cousin Jim and his wife, Patti……daughter of Kat and Farman……walked over to Aaron.  She said hi to him and then she asked him about the game he was playing.  She asked what it was called and wondered if it was fun.

I held my breath for a second, hoping that Aaron would be nice in return.  And he was!  He was really happy that someone had asked about his game.  He told her what it was and then he actually asked her if she wanted to see it. 

Moira said yes, and Aaron very proudly opened his game and let her play it for a few minutes.  It was so sweet!  I was glad I captured some pictures.

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Moira is being raised well.  She wanted to engage Aaron, you could tell.  She thought that asking about his game would be a good way to do that…..and it certainly was! 

But more importantly, Moira showed that she has a heart for others……especially others on the outside.  What maturity, way beyond her years!  That simple interchange meant more to me, and to Aaron, than Moira knows.  Or maybe she does know.  Ones with that kind of heart often do.

All of us can take a minute to follow Moira’s example…..to look every day for ways to love and bless someone around us.  And even if it pulls us out of our comfort zone, like the young dad in Subway, a simple smile and a kind word is all anyone needs to see and hear.

So thank you, Moira.  I haven’t forgotten your sweet heart that you showed to Aaron.  And on a day like today, when my heart is tender, I can choose to see your picture that makes me happy instead of the other one that causes me some hurt. 

Remember, we are all leaving a picture in the minds of others that we meet.  Let’s make it a good one. 

 

How Aaron Rolls

Aaron and I had a day together on Thursday.  It was a day full of things that he loves…..pizza, buying a DVD, going to see a movie, watching Wheel of Fortune, and a back tickling session before bed.  Oh, and a doctor visit first thing…..which is the most important thing, but only to me.  That is definitely not the most important thing to Aaron.

We were having Aaron’s first visit with his new Epileptologist.  That’s a mouthful!  At least his name is easy…..Dr. Lee.  I never know if a new doctor is one that we will like and trust.  I also never know if a new doctor will like and understand Aaron, which is nearly as crucial in Aaron’s treatment – in my opinion – as his knowledge of medicine.

Aaron was his usual impatient self in the waiting room.  Aaron doesn’t tolerate waiting very well.  We should change the name of the room to the sighing room…..or the grumbling room…..or the impatient room.  And don’t think that Aaron doesn’t notice who came after us but is called before us!  Observant Aaron indeed notices, and indeed doesn’t care for my reasonable explanations.  This is one reason I carry a supply of mints in my purse.  They help a tiny bit to ease the pain of waiting, for Aaron and for me.

A nurse called us in, a new nurse to us.  We missed you, Jen, if you read this!  Aaron sighed as he passed her, and he sighed as he stood on the scales……after removing his shoes, of course!

“I’m tired,” he grumbled.  He wasn’t even particularly excited to see that he had lost some weight.  Why is weight loss wasted on the unappreciative, I wonder?

Aaron got up on the table and promptly lay down, but I promptly told him he had to sit up for his blood pressure check.  Watching him sit up was quite a sight for new nurse, with Aaron nearly rolling off the table……new nurse trying to help him sit……and him finally sitting upright after a few kicks of his legs.  Wow!

New nurse and I were filling in the blanks about Aaron’s meds and doses, and of course Aaron plopped back down on the exam table.  Now I was sighing.

New nurse left and soon in walked a young medical student.  He had questions of his own, some of which he asked me and some of which were unspoken but were written all over his face as his eyes darted off and on to Aaron.  He was kind, but young and inexperienced, I imagine, in the ways of special ones like Aaron.  It’s so interesting to me, and actually amusing, to see the looks on the faces of those who are trying to decipher Aaron.

By this time, Aaron was totally comfortable on the exam table.  This is how Aaron rolls.

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Medical student left, and soon Dr. Lee knocked softly and entered the room.  Medical student was with him.  Dr. Lee was instantly comfortable with Aaron, shaking Aaron’s hand as Aaron rested on the table and then shaking mine.  I knew right away, as we first spoke, that I liked him.  He was thorough, knowledgeable, in charge but in a soft way, and very good with Aaron.  He even did Aaron’s exam while Aaron remained in his prone position.   He went over lots of Aaron’s past history, and had a plan for future treatment as we talked.  But nothing new will happen until Aaron has a video EEG in June, which will require a hospital stay of several days while Aaron hopefully has some seizures after meds are removed.  Stressful, but a necessary and needed way to see what’s going on in Aaron’s brain now as compared to his last video EEG years ago.

Aaron was happy to finally struggle up and off the exam table, get on the elevator, in the van, and go to Sam’s for a quick pizza lunch.  Home to let the dog out, a run into CD Tradepost for his DVD, and finally we were at the theater.  We were finally going to see Rogue One!

I paid for our tickets, with Aaron standing close and observing everything carefully.  As I signed the receipt, I noticed that the girl behind the counter was having a bit of a struggle with our tickets.  She was holding one ticket, but seemed to be tugging on something under the counter where our other ticket should have been printed.  Soon she was on her knees, working on the ticket machine, I guessed.

“Sorry,” she said as her eyes peeked over the counter.  “My machine isn’t working.  It’s actually totally stopped.”

It did not escape Aaron’s attention that Mom was holding only one ticket.  His mind was calculating the fact that we needed TWO tickets.

“You mean we can’t go to the MOVIE??!!” he asked in a panic.

The girl assured him that we could go.  She was in the middle of calling the ticket taker on her walkie talkie to explain things.

“We can’t go to the MOVIE?!!” Aaron asked again.  And I scooped up my receipt and my ticket……ONE ticket……as I thanked the girl and turned to leave, taking Aaron’s arm as I wondered why this had to happen to us, of all people.  To Aaron, who must have everything just right……and a jammed, turned off ticket machine is anything but just right!

We walked toward the second most anticipated feature…..POPCORN!!  All the while, I was explaining to Aaron that all was well…..that we could go to the movie…..that the ticket taker knew we had both paid.

“But you only have ONE ticket!” Aaron argued.

I explained again as we stood in line.  It was a fairly long line for a school day, I thought.  And so did Aaron, who proceeded to sigh again.

“So we can both go to the movie?” he queried as we waited our turn.

I told him yes, very thankful that a second line opened.

“CAN I HAVE A LARGE POPCORN??” Aaron bellowed as we stepped up to the counter.  There was that look on the young man’s face, so I smiled and put him at ease.  Aaron was not going to jump over the counter, I wanted to tell him.

“So we can go to the movie?” I heard Aaron ask again as I juggled our popcorn order, cups of water, Aaron getting straws, and Aaron getting a HUGE wad of napkins.  HUGE!!!  Why does he always do that?!!  How many other people saw that?!

But that’s how Aaron rolls.  It’s like napkins are a security to him.

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He was super happy that we both made it through the ticket taker matter, and that our theater was only a short walk away.   I was super happy to see only two other people in the theater.  And VERY SUPER happy that we got the seats on the very back row, with the wall behind us.  Aaron could stretch, and make minor noises without disturbing anybody.  He couldn’t kick seats in front of him, or pull on them if he got up or got excited.

We sat down.  I exhaled, leaned back, and totally relaxed.  Only three more people came in, for a grand total of seven movie goers on this day.  Another reason to relax.

But Aaron was not sitting back.  He was not totally relaxed.  He had placed his popcorn on the floor, not to be picked up and eaten until the movie actually started.  Not when the lights dimmed.  Not when the movie instructions about talking, cell phones, etc., started.  Not when the movie trailers began.  Only when the Rogue One movie was actually and for real on the big screen would Aaron pick up his popcorn and start eating.

In the meantime…..

As soon as we sat down………popcorn placed on the floor………napkins squished in one cup holder……..water in the other cup holder…..Aaron pushed up his shirt sleeve in order to see his watch, which is always pushed halfway to his elbow.

“It’s 2:02,” he said.

“OK,” I answered in my relaxed mood.

“When it’s 2:02,” he asked, “does that mean it will start soon?”

I knew we were in the countdown.

“It won’t be long,” I assured him.  “It starts at 2:15.  So how many minutes is that?” I asked him.

“Thirteen minutes,” he flatly answered.

We sat there in blessed quietness, me continuing to relax.

Aaron pushed his shirt sleeve up again.

“It’s 2:04,” he informed me.

I just shook my relaxed head.

And munched popcorn…….because I have no strict rules about the proper popcorn eating time.

Soon, the sleeve pushing happened again.

“It’s 2:10,” I heard in my relaxed state.

I guess it was 2:15 when the lights dimmed and the announcements started and the trailers played and all the other stuff happened on the screen.

The movie started, FINALLY, and Aaron promptly reached down for his popcorn.  It was only then that he leaned back, partially, and ate to his heart’s content.

I only had to hush Aaron a few times, and try to answer questions a lot of times, and wonder why Aaron was so obsessed over whether Luke was in this movie!!

“Where’s Luke?”

“Is that Luke?”

“Maybe he’s Luke?”

“Will we see Luke later?”

I am THE most uneducated person to ask about Star Wars, but Aaron will ask anyway.

But it’s OK.  We were on the back row, all relaxed…..with popcorn…..and a wad of napkins……and water to slurp with his straw……which is how Aaron rolls.

Actually, I’ve learned to roll with Aaron in most situations, relaxed or not.  That’s because Aaron is going to roll the way Aaron rolls, and usually there isn’t a lot I can do about it.

May as well roll with it, and smile, and enjoy the ride with Aaron……Aaron’s way.

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Depressed? Feeling Sad?

Aaron had a blast on this day as he answered questions at his doctor visit. I still wonder what went into his chart!

He Said What?!

Yesterday I drove Aaron to McConnell Air Force Base for a doctor visit.  He loves this time together.  We listen to music and there is much for Aaron to see and to talk about with mom…….who can’t go anywhere else but in the driver’s seat right beside him as he talks and talks and talks.  He talked about road construction and house remodeling that we passed; he talked about trucks that we passed; he talked about the purpose of U-Hauls; he talked about RVs and what they are and what they’re for and what they look like inside and do they have a bathroom and can we get one to take on our next trip back east; he talked about storage buildings and what people do with them and he remembered our storage building in Arizona; he talked about the guards at the gate going on to the air base…

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Some Best Gifts

Tomorrow is Valentine’s Day.  It’s nice to have a day to declare our love for the people in our lives that mean a lot to us.  I’ll admit that I have loved every flower and card and box of candy that Gary has given me over the years.  But in the past few days, I’ve once again seen that the best gifts my husband gives is what he gives of himself, over and over and over, as we walk this life road together with our Aaron. 

Gary and I love Aaron.  We have chosen at this point in our lives to keep Aaron at home with us.  It’s not always easy, but we wouldn’t have it any other way.  However, there are two attitudes that help tremendously as we care for our son.  The first one is humor.

I’ll be honest and say that I like it when I pick Aaron up from his day group, and hear him say, “WHEW!!  I’m stuffed!!”  He then tells me what he ate for lunch that day, usually something on the large side.  So I casually ask if he wants supper and he often says no. 

Now, I don’t mean to sound mean, but Gary and I do enjoy eating dinner alone.  Just the two of us, enjoying casual conversation and pauses of quietness……blessed quietness.  Because if Aaron is with us, he loves to talk about his day and his recent activities and what he ate and what he said and how he was just teasing this person and how he got in trouble and what movie he’s watching and what aliens he’s interested in and what game he’s playing, etc., etc.  He watches for the slightest pause in Gary’s and my conversation, or maybe not even a pause at all, and will jump in quickly. 

“AND……guess WHAT?!!” he’ll interject.  And he’s off and running with another tale that he knows we MUST hear.  There is a time and a place for us to hear from Aaron, but we also enjoy each other’s company at least a few times a week.

The other night Aaron wasn’t planning to eat with us.  Gary came home to two place settings on the kitchen table.  We soon sat down to eat, just me and Gary, when we heard that all too familiar sound of Aaron’s heavy footsteps on the stairs.  How does he do that?  How does he just KNOW that we are sitting down to eat? 

Gary asked the blessing as we held hands, with Aaron hovering there between us.  As soon as the “Amen” was said, Aaron launched in.  “DAD, guess what?!”

“Aaron,” I interrupted.  “I thought you said you weren’t going to eat.”

“I’m not,” he replied.  “DAD, guess what?!”

So there we were, Aaron’s captive audience.  It’s always a struggle for us to know how blunt to be with Aaron.  We don’t want to make him feel like he’s not wanted with us.  But, really, we didn’t want him to stand there the whole meal and talk up a storm……and he would.  He was well on his way to doing just that. 

Finally I said, without terrible bluntness, “Aaron, now you’ve talked enough.  You need to let us eat.” 

“OK,” he said.  He walked over to the counter, picked up a pineapple that he noticed, and brought it over to us. 

“DAD!!  Look at this!!  Mom got a pineapple today!”

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In Aaron’s mind, he WAS letting us eat.  I didn’t want to be so blunt as to say, “AARON!!  QUIT TALKING!!”  So I told Aaron to let us eat, and he WAS letting us eat while he continued to talk.

Gary, also not wanting to be too blunt or hurtful to Aaron, looked at me and said, “Your clarification of your wishes would greatly enhance your desired results.”

Aaron had no idea what Gary was really saying.  Gary and I laughed and laughed, which made Aaron think that we loved what he was saying about pineapples……so he continued his talking while he let us eat, just like I had told him to do. 

Next to humor, patience is another important gift that Gary gives as we live with Aaron…..or he lives with us. 

Gary ordered two updated Star Wars games recently for Aaron’s computer.  He installed them for Aaron on Saturday.  Then came Gary’s strict instructions to Aaron about not changing settings or doing any other things to mess up what Gary had taken time to do.  We have lots of experience with Aaron doing just that.

Gary and I came home from church the next day to find Aaron telling his dad that something wasn’t right about the games.  Without even looking, Gary knew…..and he was right.  Aaron had tried to put some codes in or something…..it’s all Greek to me……and he had jumbled things up.  Gary had to sit down and re-do much of what he had just done the day before. 

It was a resounding GRRRRRRRRRRRRRR moment, for sure.  And Aaron knew it…..knew he had blown it and knew we were frustrated.

Aaron finally came in my room and said, “Nobody forgives me!”  Can we spell the word D-R-A-M-A?

The game was eventually back up and running.  Gary had slipped outside to take Jackson, our Dane, for a walk.  The walk was, I’m sure, doing more good for Gary than for the dog. 

Enter Aaron……into the kitchen, looking for Gary.  Gary, who was nowhere to be found.  Aaron asked me and I couldn’t lie, so with resolute steps Aaron was out the back door and striding across the grass to catch up to Gary and Jackson.  I felt badly for Gary.  I knew he wanted some alone time. 

Soon I looked out the window, watching them come from behind the tall evergreens into my view.  They walked slowly, Gary and Aaron, with Gary talking and engaging with Aaron.  It warmed my heart, as I am quite sure it did Aaron’s as well. 

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Gary’s love for Aaron is a great gift to me.  His humor and patience often come at times that we both need them the most.  Often when I am tired…..done…..ready to check out emotionally……Gary will step in and save the day for me.  Those are some of the very best gifts that he gives me, and they’re not just on one special day or two a year. 

Of course, I do still love flowers……just in case he reads this, you know.   🙂

 

 

 

The Bedroom

Aaron went to the Goddard Day School for three years, graduating from there at the age of 21.  His teacher, Tom, was just wonderful with Aaron and with all the students.  Tom would have one-on-one time with each student.  He would fix tea, sit with each one, and just talk and connect.  Tom called that time Tea with Tom.

When Aaron was a senior and ready to graduate, he was allowed to quit going to school earlier than those students who weren’t seniors.  Tom was still teaching, so one day he contacted me and asked if he could have one more Tea with Tom time with Aaron.  He said he would come to our house, so we agreed on a day for Tom to come. 

On the morning Tom was to arrive, I had things ready for our Tea with Tom.  Tom wanted me to join him and Aaron.  Gary was at work, even though he had a bad cold, and couldn’t be there for our tea time.  That little detail about Gary having a cold is important.

So is the fact that off our kitchen, down a couple little steps, is a guest bedroom.  And a small bathroom.  Because of Gary’s bad cold which made him cough all night, he had been sleeping in that guest bedroom.  This is another important detail to know. 

Tom, Aaron, and I were enjoying our tea as we sat at the kitchen table.   Aaron was full of non-stop talking, as always, and Tom was his usual patient self. 

Tom turned to me at one point and asked if he could use our bathroom.  I pointed him in the direction of the small bathroom.  As he headed that way, he saw the bedroom and for some reason he commented about it.

“I didn’t know you had a bedroom there,” Tom innocently said.

And before I could even reply, Aaron answered.

“Yeah,” he flatly replied to Tom.  “That’s where my Dad sleeps.  He doesn’t sleep with my Mom anymore.”

Well.

There it was, on the table……like a family secret thrown out there for Tom to know.

I was horrified.  Mortified. 

I looked at Tom, my face flaming at this point.  But Tom had turned and was heading for the bathroom.

“It’s not that way,” I somehow managed to say.

“You don’t have to say a thing,” Tom answered.

“YES, I DO!!!!” I blurted out.

So I explained Gary’s cold…..and his coughing……and his thoughtfulness in sleeping in the guest bedroom so as not to bother me……and that he and I were fine. 

Why was I having this conversation with a man??!!

And Aaron, as usual, was oblivious to my embarrassment and to Tom’s discomfort with the direction this conversation had taken. 

When Tom returned, our Tea with Tom resumed.  We chuckled and nothing else was said about this family secret, at least not that I remember.

Some things are best forgotten. 

Some things still make us laugh, years later. 

And Aaron…..nothing much escapes his notice. 

And he will tell it…..sometimes yell it. 

Every.  Single.  Time.

 

He Was But One

He Said What?!

We live in a culture where bigger is better and where a person’s list of accomplishments is what garners respect in many circles.  Unfortunately, even as followers of Christ, we sometimes fall into that same mindset.  Whether it’s in our churches or in our personal lives, often our feeling of worth and value to God is based on our list of “service” responsibilities.  In our individual lives, too, we look around and so often begin to measure ourselves……usually based on comparisons with others.  It’s a discouraging trap, one sure to bring defeat.

So often life doesn’t go the way we think it will.  So many of us one day find ourselves looking around at our lives, maybe discontent and feeling of little use to anyone.  Our past or current list of involvements may be small compared to so many others.  We feel unimportant.  Who wants me to fill that position? …

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