The Beauty IN The Beast

My phone rang this morning, and there on the line was my very dear friend, Wendy.  I knew right away from the sound of her voice that something was wrong.  It was Elijah, Wendy said, her tone flat and exhausted.  He had run away again, on his bicycle, and had almost gotten on highway 24.  Somehow Wendy got him back, although we didn’t go into all the details of that.

Elijah, who turned 20 years old yesterday, suffers from the worst form of Epilepsy there is.  He has horrible seizures that often require oxygen, and sometimes require strong drugs to just stop the awful seizing.  Those drugs may help to save his life, but they also cause his life to be miserable after the seizures stop.  Life saving drugs like that are also life changing drugs because of the terrible behaviors that usually follow their use.

It’s an awful catch 22……a dreadful dilemma for Dan and Wendy, his loving parents.  And for Elijah……and the whole family…….they live between a rock and a very, very hard place.

Seizures cause changes in the brain.  These changes can contribute to behaviors that defy reason.  Drugs to control the seizures often have the very unwelcome side effect of causing even more behaviors.  Add to all this the sometimes necessary brain surgeries that children like Elijah have had…..multiple brain surgeries…..and the mix is indeed toxic when it comes to the brain being able to make the connections that you and I take for granted.

Gary and I face these same dilemmas with Aaron, trying to find the balance between seizure control and quality of life……both Aaron’s and ours.  Yet preventing or lessening seizures is of paramount importance.  It’s literally a life or death situation.

But so are behaviors, sometimes, when those behaviors can be as dangerous as Elijah’s.

And let’s not forget autism.

BLAHHHHHH!!!!!

Sometimes it’s just too much!

No disease or syndrome of ANY kind is easy to bear.  But some are, sadly, easier to explain.

I do believe that explaining……let’s just say it……bad behaviors…..is tremendously embarrassing and frustrating to us parents who find ourselves having to do it over and over and over.

We get “the look.”

We get the questions, spoken or not.

We get “the talk” from teachers or our friend’s parents.

And sometimes we DON’T get…..the party invitations…..the friendships……the understanding…….the listening ear……the sympathy, that we so desperately need.  That our special children desperately need.

It was just last year that someone came up to my car window, and with great exasperation, said, “Can’t you DO something about Aaron?”

I looked at her in disbelief and said, “Do you have ANY idea what all we have been doing with Aaron for over 30 years?!”

Today I gave our Aaron a fun day after his four days in the hospital.  We went to see Beauty and the Beast.  Aaron wasn’t totally sure that this was prime movie material, but the thought of popcorn and time with Mom won him over.

As the movie progressed, I was pretty amazed at Aaron.  He was completely enraptured by this movie.  He was so still and quiet, except for the rubbing of his hands together that is just so Aaron.  He rubbed his hands softly, unless there was a very exciting piece of action.    He ate his popcorn but didn’t even want a second tub.

As I glanced at him during the movie, I saw him smiling.  His eyes were big and focused totally on what was taking place on the screen.  He loved the characters and the drama and most definitely the music.

But the character he loved the most was the Beast.  Aaron was registering in his mind every nuance of the Beast……his anger at the first, his softening as the movie progressed, his smiles, and his joy as he fell in love with Belle.

Aaron at one point simply said, “I love this movie!”

And when he said it again, a little later, Aaron laid his head on my shoulder.  It was pretty incredible.

Aaron wasn’t the only one, though, that was completely taken by parts of this love story.  I was, too, but for reasons that went far beyond Belle and The Beast.

I was looking at what can transpire when a Beast – or a person – is loved.  Is truly loved and valued for who they are under their rough exterior.

Wendy’s sad and tired words played through my mind as the music played on the big screen.  My own sometimes weary burden over our Aaron’s behaviors was heavy on my shoulders.

Elijah and Aaron are so much like the Beast in some ways.  They can evoke a measure of disbelief in how they act and in what they say or do.  They are at times unlikable, impossible to understand, and downright annoying.

images

But there is another side to them, and to so very many others with these same issues.  A side that blooms under love and understanding, as much as possible.  And when we, or others, can’t really understand we at least know deep down that many actions are beyond their control.

the beast

All of this was playing in my mind as the movie played today, with Aaron’s gently rubbing hands and big smile beside me.  And it’s why tears rolled down my cheeks as the words of this song, Something There, burned into my heart.

            There’s something sweet

            And almost kind.

            But he was mean and he was course and unrefined.

            And now he’s dear,

            And so I’m sure,

            I wonder why I didn’t see it there before.

            New and a bit alarming,

            Who’d have ever thought that this could be?

            True that he’s no Prince Charming,

            But there’s something in him that I simply didn’t see.

Aaron and Elijah, and many like them, have so much more in them than we often see.  They are wonderful and funny and smart and have so much to offer to the world……and the people…..around them.

They need what the Beast needed.  They need the “something there that wasn’t there before,” as the Beast’s friends sang at the end of this song.

That “something” is love.  Some days the love is harder in coming than on other days, but even when our boys aren’t being Prince Charmings, they still deserve as much love and understanding as possible.

Belle and Beast

Aaron and Elijah have lots more awareness than we realize.  Aaron has always known who is real and who is not when it comes to how they react to him and interact with him.

You know what Aaron said tonight?

“Mom, Gaston fake loved Belle.”

Aaron gets it.

He knows very well that the Beast loved Belle for who she was as a person.  That’s real love.

And it’s the love our special kids need……the love for who they are, deep under all the medicines and conditions and labels and diagnoses.

I’ll be the first to say that it’s easier to write the words than it is on some days to live it out in real life.

But our kids will grow under unconditional love, some days more than others.

And all of us giving them real love…..not fake love…..will grow even more.

There truly is beauty in the beast, if we just love and look.

WP_20170512_16_26_43_Pro

Houston and Home

Gary and I just returned yesterday evening from a trip to Houston, where we got to see our daughter and her boyfriend, and our son.  Aaron stayed in Wichita, where our friend Amber and her family provided excellent caregiving for him.  He has so much fun eating out, watching movies, and just generally being the center of attention.  And we have so much fun seeing our other kids, and having some time to ourselves.  It’s a win-win.

Before we leave on a trip, Aaron is very excited at the prospect of us being gone.  Remember, no filters equals complete honesty from Aaron.  But of course, while we’re gone he calls multiple times every day.  I had told him over and over that while we were at the race track where our son works that I wouldn’t be able to answer the phone because it was too noisy to hear.  That didn’t deter Aaron one bit.  He never left a message, but just pursued calling until eventually, even hours later, I would answer the phone.

“HEYYYYYY!!” Aaron would say with great enthusiasm……as if we hadn’t talked in weeks instead of it being just hours.  And then he would launch into the story of his latest happenings at home or at his day group……what he had eaten and where……what Amber or one of her kids or her husband had done……what our Great Dane was up to……..what movies they had watched……and various other stories and comments.  He never asked what we were doing or how we were, and I certainly would be surprised if he did. 

In between all his phone calls, we did have a wonderful time in Houston…..despite the horrendous traffic that we often found ourselves a part of……and seeing or hearing of multiple fatality accidents, with detours and delays.  Oh Houston, you are so huge and exhausting!

We got to see Andrea’s genetics lab that she has gotten up and running.  Quite an accomplishment!!  She is now the lab manager.  We were privileged to meet her genetics director and hear some very affirming things about our daughter, which thrills the heart of any parent. 

WP_20170421_12_11_17_Pro

WP_20170421_12_13_43_Pro
Andrea and Gary

We got to spend some precious time with Andrea’s boyfriend, Kyle, who is working hard to complete his degree as a ship’s captain.  Between his studying, projects, and work, we were very happy to see him when he could spare the time.  We also got to eat dinner our first night in Houston with him and his dear parents, Kent and Marie.

 

WP_20170422_11_58_49_Pro
Andrea and Kyle

 

We got to spend time at the NHRA racetrack in Baytown, watching Andrew as he works with Cruz Pedregon Racing.  We saw Cruz run his career best time!   And again, we heard such nice comments about Andrew and were thankful for the impact he is having on others there. 

18076979_1212756745488386_1368209846441181859_o

WP_20170423_14_48_00_Pro

WP_20170423_10_23_27_Pro

And let’s not forget that we got see our adorable granddogs, Darcy and Oakley.  We also got to see Aries, Kyle’s dog, but silly me forgot to take a picture!

WP_20170420_21_52_00_Pro

 

WP_20170420_21_53_59_Pro

Andrew got to have some rare time for us to get together on Sunday evening for a visit to Andrea’s apartment, and then dinner with all of us together.  Times like this happen so seldom for us, and we were very thankful for every single minute together.

WP_20170423_18_18_02_Pro

WP_20170423_19_58_16_Pro (2)

Aaron was happy to see us when we got home, although he didn’t want to hug and he didn’t want to act TOO glad to see us.  But he followed us around most of the evening, talking and talking.  Then this morning……did I really hear Aaron get out of bed at 5:25?!  And did I really hear Aaron NOT go back to bed soon after?!  Yes, indeed I did!  I was looking forward to sleeping in just a little instead of getting up at my usual 5:30, so I closed my eyes and hoped……

But no, Aaron was awake for good.  Gary was downstairs, where Aaron went at first, and then back upstairs he thumped.  I got out of bed a little after 6:00 and walked into the kitchen to the beaming face of Aaron.  My, what bright eyes he had on this VERY early morning!! 

Gary had gotten Aaron’s coupons from the Sunday paper out for him to cut, and so his coupon cutting station was all set up on the floor in front of the television.  This gave me some time to read my Bible and drink some coffee, preparing myself for the Aaron onslaught I knew was soon coming.

Sure enough, as soon as Aaron heard the door open and knew I was finished, up the stairs he lumbered and into the room he came.  I was getting ready to iron Gary’s work clothes, so Aaron sat on the bed where he could look at me and talk to his heart’s content. 

WP_20170425_07_19_10_Pro

I decided to write down a few of the things Aaron said while I ironed and then on through the morning so you can get an idea of what I mean when I say that Aaron talks a lot.  I mean, a LOT!!  This is only a mere fraction, mind you.

Aaron, while on Andrea’s bed watching me iron:  “The big slug aliens, they had also legs.  They screeched!!”

“This is how I sit when I cut coupons.  Then my leg hurts!”

“You want me to cut diaper coupons?  Do you want me to cut wipes coupons?”

Then back downstairs, where he was watching the movie Battle of Los Angeles:  “Mom, this is the OLD movie.  The new movie doesn’t have ‘of.’  It was only Battle Los Angeles.”

“Where is Los Angeles?”

“The hideout that comes down to earth, that brings their little ships.”

“Why does the military go in the hideout?”

“They put detonators in there and blew up the hideout!”

“The woman military is cute.”

“I didn’t know a woman could be a fighter!”

“Why do they make every alien giant and look like a slug?”

And on and on and on and on he went, until finally I was able to make a legit exit to my bedroom and lock the door while I got ready.  But eventually I had to unlock the door, where Aaron promptly entered and continued his monologue as if nothing at all had interrupted him.  Finally, it was time to take him to Paradigm.

“Guess what time Amber took me to Paradigm?” he asked.

And before I could answer, he breathlessly told me.

“9:13!” he exclaimed. 

He waited for my sure response, as if 9:13 was the most amazing time to leave for Paradigm……and mom’s usual time is, of course, very sub-par.

“9:13?” I asked.

“Yes!!” he replied.  “She took me at 9:13!”

I’m still not quite sure what magic there is in leaving at 9:13, but to Aaron it was impressive and he wanted it to be for me as well.  That, along with giant slug aliens that had also legs and the woman military who was cute and could fight and ships and detonators and diapers……it was just altogether a very impressive morning, let me tell you.

Home sweet home in Kansas…..where the wind blows a lot and Aaron talks a lot.

Sometimes refreshing and sometimes it rattles the nerves, but it’s home. 

And we’re thankful.

 

 

 

Take Time

Last year, especially in the fall, we were having a terrible time with Aaron’s behaviors.  He was generally miserable, and so therefore everyone around him was miserable as well.  Poor behaviors, no filters, and an inability to figure out cause and effect, can certainly produce some headaches for everyone.  It’s the side of autism as well as the effects of seizures, at least for Aaron and for others that I know, that is most difficult to understand.  Difficult, too, to have compassion and empathy for our adult Aaron when he is hurtful with his words and careless with his actions. 

Aaron seems so high functioning.  He is, in many ways, just that.  So it’s very hard to decipher when he is manipulating us and being willfully disobedient, and when he is truly on a track that he just cannot control. 

We see a wonderful psychiatrist for Aaron’s autism.  Gary and I resisted any drug intervention for a long time, but eventually years ago we decided it was time to see if medicines would help Aaron.  Several have been tried over the years. We feel that we have found a beneficial drug now.  The change in Aaron has been dramatic, for the better.  Perfection?  No.  But the improvement we’ll take, for sure!

Since we increased Aaron’s dose of this medicine in January, he has done so well at his day group and at home that it’s been like a vacation.  Well, not totally – but definitely we have seen positive strides. 

But then this week happened.  It’s not been over-the-top awful with Aaron, but he hasn’t been his chipper and happy self as much as in the past few months, either.  He had been collecting steam for two days, disgruntled in the mornings and just very edgy.  Yesterday morning he was fully on track for a bad day, and I didn’t have the ability to derail him, try as I might. 

To add to the volatile mix, I am very vulnerable right now.  Honestly, I don’t handle holidays very well sometimes.  That’s because I miss our two kids who live too far away to come home quickly.  My loneliness for them runs deep during holiday time…..any holiday……and I am more emotional.  Easter is this Sunday.  I love what this time of year is all about.  I long to live every moment in the victory that is mine in Christ.  Then along comes Aaron…..

God bless him!  I picked him up from his day group yesterday.  For maybe one minute things were fine.  Then he told me that he had given his money away….again….and that he did do this and didn’t do that.  And I was just done.  I didn’t yell, but I lectured, which is almost always ineffective with Aaron.  We can do this and we won’t do that and maybe so-and-so……  And I was cold and distant, which makes Aaron feel abandoned. 

We were home, I was in the kitchen, and Aaron kept coming in to say one more word…..to throw one more barb at me.  It’s amazing to see how he thinks.  How I can be making a profound point, eyeball to eyeball with him, and then to have him open his mouth and still be way back at where he was in the beginning, totally not connecting things the way most of us would. 

He finally bent over, hands rubbing furiously together like he does when he’s excited…..but this time he was NOT excited……and his eyes were wide and wild. 

“I don’t love you anymore!!” he said through firm lips. 

And he waited for my response.  I turned my back and it hit me.  I am vulnerable.  I am tired.  I am emotional. 

It’s the perfect time for Satan to attack.  He is no gentleman.  He loves to kick Christians when we are down.  I knew that the adversary of my soul would have been thrilled for me to lash out at Aaron with my words……to release all my pent up anger at him……and then to blame my reaction on Aaron and on my emotions and even on the upcoming holiday! 

I had asked some friends earlier in the day to pray for Aaron.  I know they were praying for me, as well.  And there in the kitchen, with my back to angry Aaron, I prayed, too.  I asked God for peace, for wisdom, and especially for Satan to be defeated right then and there.  I claimed God’s power over our home and over this situation, recognizing that His power was and is all that I need. 

I hoped for time with Gary alone when he came home from work, before Aaron bombarded him unexpectedly with all the sordid details of the day.  That doesn’t often happen, but God was so good.  Aaron was busy in his room when I saw Gary’s truck pull in.  I was able to meet him in the garage, where he knew right away that something was wrong.  We had alone time to talk before Aaron burst through the door.  Gary was ready then, able to be kind and calm, with understanding. 

I was amazed at the happy Aaron that came in the house soon after!  He ate supper with us and acted as if nothing happened.  I was so thankful!  And after Gary and I cleaned the table, Gary told me to come with him as he headed out the door for a walk around the yard.  That sounded wonderful to me!

But it also sounded wonderful to Aaron, who of course knew what we were doing.  My heart sank a little as he followed us outside.  He didn’t care that he was wearing his pajamas already…..didn’t care who might see him……didn’t care that he wasn’t wearing shoes.  So I told him to take off his socks, and he happily joined us for a stroll outside. 

WP_20170412_18_02_13_Pro (2)

 

It actually turned into a very sweet time.  Gary showed Aaron the sunflower plants that were popping up in the garden from last year’s seeds that had dropped in the soil.  Gary pointed out the deer tracks all around, the toad jumping in the water, the clearing he’s been doing out back, and the new grass seed planted.  He pointed out an ant hill and how busy the ants were working.

He showed Aaron how the oak tree is budding and how the buds look like baby pineapples.

WP_20170412_18_11_59_Pro

He showed Aaron the oak tree seed pods that fly like a helicopter when you throw them in the air…..things that Aaron knows but that are fun to see again with fresh eyes.  Then Aaron threw one up and watched it land.

WP_20170412_18_12_59_Pro

 

WP_20170412_18_13_03_Pro

Suddenly Aaron remembered something that HE wanted to show Gary.  It’s something that I had pointed out to Aaron a couple days earlier. 

“DAD!!!  Come look at this plant!” Aaron insisted.

We followed Aaron, with me knowing where he was headed, and we found him standing there just staring at the Lilac bush.  I love the way he stops and stares at things that interest him, as if he’s absorbing every detail…..which he probably is.

WP_20170412_18_14_55_Pro

Aaron then leaned over and smelled the sweet lilac scent, and Gary and I followed. 

WP_20170412_18_15_00_Pro

I was filled with more than the smell of lilacs.  I was filled with reminders of how important it is to give Aaron time…..time to work through his frustrations and anger without losing mine.  Time to hopefully express himself better.  Time to join Gary and me in a few moments of simple pleasures.  Time for him to see and to know that he is loved.  Time to hopefully show him how to live in thankfulness for all that God has given him. 

If I’ve learned anything with Aaron and with autism, it’s that taking time is absolutely necessary. 

Take time to smell the flowers.

Take time to understand our Aaron.

The One More

Aaron came into the kitchen this morning, a little after 11:00, so I asked him if he wanted some left over pizza for lunch.  He said yes right away, but then I saw his eyes dart to the clock on the oven.

“It’s not lunch time yet.  It’s 11:06,” he flatly declared.  “When it becomes 12:00, it’s lunch time.”

He turned and left the kitchen, happily despite being hungry, because hunger is easier for Aaron to handle than eating lunch at the ungodly hour of 11:06!!  And no matter how many times this scenario is played out in our home, it never gets old or tiresome to me.  I mean, some of Aaron’s rigidity or habits can at times wear me down, but his precise keeping of times in his life nearly always makes me want to laugh. 

There are some things that Aaron is going to do because Aaron’s just going to do them, almost every single time that he is given the opportunity. 

Will Aaron pull just one wipe out of the dispenser at the grocery store?  Well, no!  One wipe is so boring and useless!

wp_20161108_11_49_47_pro

Will Aaron be happy having one fork with his sausage at breakfast?  No, never!  He even gets out a spoon when he’s eating pizza!!

wp_20170301_08_00_40_pro

Does Aaron want to vary the route we take as we drive to Paradigm every weekday morning?  Are you kidding?!  He thinks his way is faster.  But I did take a quicker route on Friday, to his great dismay.  I asked him why he doesn’t like going my way and wants to go his way. 

“Because this way is far away from the short one!” he answered.  Which still left me puzzled, but I do love how he expresses himself.

A few evenings ago, he was concerned about running out of toilet paper in his bathroom.  He kept talking about it, and I hadn’t gotten a new package out yet.  We were getting his bed ready for the night and toilet paper was still on his mind.  I told him to go check his bathroom cabinet for toilet paper.  Soon he was back in his room, happily holding a single roll of toilet paper.

“There was one more left and this is the one more!” he declared, quiet relieved.

So the next evening I carried up the big package of toilet paper, which Aaron watched me open.  He watched me put two rolls in the guest bathroom holder, and then wanted to carry four rolls to his bathroom.  We settled on three rolls instead, and Aaron very seriously offered to take them upstairs himself……probably more to be sure the job was done correctly than anything else.  I mean, toilet paper is important, right?  It certainly was to Aaron at that time.

wp_20170301_20_12_48_pro

I can count on Aaron making something random like that of utmost concern, and then not getting it off his mind until the situation is resolved in the way that’s needed……or in the way that gives him peace, thereby giving all of us peace!

Let’s see…..what else can I count on Aaron doing?

I can count on him every night, after we watch Wheel of Fortune, changing the channel to Fox News.  He sits in his chair, eyes on the screen, watching and waiting for what he knows is coming.

And when he see Bill O’Reilly on the screen, he smiles, still waiting expectantly.  Bill talks for a minute, introducing what’s coming on the program that night…..and Aaron stares, a slight smile on his face.

wp_20170302_19_00_14_pro-2

And THEN, it happens!  O’Reilly sweeps his arm around and points at the camera.  “CAUTION!!” he says.  “You’re entering the no spin zone!!” 

wp_20170302_19_01_04_pro-2

Aaron laughs and laughs, loving every second of it.  Every night that O’Reilly is on, this is what Aaron does. 

And I laugh, too, because seeing all of this through Aaron’s eyes is so much more fun than just seeing it as “same old, same old” every night.

We can count on Aaron talking to us until our ears are totally exhausted.  This is especially true if we are a captive audience, with no place to run, like we were in our hotel room during our Thanksgiving trip.  Oh my, did he talk!!

wp_20161124_10_20_46_pro-2

And he will also tell everyone of his latest exciting happening, which also happened during Thanksgiving.  Poor Aaron slipped in the hotel tub, cutting the bottom of his foot on the drain stopper.  This was momentous to Aaron and he felt that everyone else would think it was momentous, too…..especially when he told them about it.  But he doesn’t just tell.  He likes Show AND Tell.  And my very sweet sister, Mary Beth, was the recipient of not just the telling, but also the showing, as you can see.

wp_20161124_13_41_23_pro

HaHa!  I can still see her caring face and hear her wonderful laughter. I can also still hear my surprised gasp when I looked over and saw Aaron with his sock off……and blood on it that had seeped through the bandage…..and him sitting on the floor, not a care in the world but to show Aunt Mary Beth the whole gruesome wound. 

At least it wasn’t like his VNS surgery years ago.  The scar was on his upper chest, so several people had the unexpected treat of Aaron quickly pulling up his shirt in order to show them the evidence of his surgery.  The whole thing was just a tad…..shocking…..but not to Aaron.  Not at all to Aaron.  It got to the point that every time Aaron started telling someone about his VNS and his hands headed toward the bottom of his shirt, I yelled, “NOOOO!!”  I got some strange looks for that response, but those people have no idea what I had just spared them from.  No idea at all, really.

But you know, it meant a lot to Aaron that Aunt Mary Beth enjoyed seeing the cut on the bottom of his foot, blood and all.  He didn’t think it to be the least bit strange that he sat on the floor with people all around and pulled off his shoe and sock.  And Mary Beth rolled right along with it, loving every minute and loving Aaron, most of all.

That’s what we have to do.  Roll with Aaron, expect the expected, and brace ourselves for the unexpected.

Speaking of roll, remember the one roll of toilet paper?  “There was one more left and this is the one more!” Aaron declared.

Aaron is our “one more.”  He always has one more routine…..one more thing to tell…..one more surprise…….one more way to make us laugh or sigh or roll our eyes or want to scream.    

And tomorrow is one more day for us to see what Aaron has in store.  One more day for us to see the world through Aaron’s eyes, like it or not. 

One more day to hopefully have the unexpected joy I had today when Aaron put his arms around me from behind, laid his head against my back, and said, “I love you, Mom.” 

I’ll take one more of those moments any day!

I love you, too, Aaron!

 

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.

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.

wp_20170216_11_34_58_pro

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.

wp_20170216_14_03_51_pro

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.

wp_20170216_14_03_25_pro

 

 

 

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!”

wp_20170201_18_02_07_pro

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. 

wp_20170212_12_30_16_pro

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.

 

IMG_1941

 

Mama Rachel: A Life of Forgiveness

Everybody has a story.  I’ve always found it so interesting to hear people’s stories.  Biographies are some of my favorite books to read.  Nothing, though, can compare to listening to someone tell their story…..their real life story.  I’m not talking about famous people.  I’m talking about common, everyday people like you and like me. 

There is a story……an all too true story……that I have wanted to tell for a long time.  A story of love, of sadness, of betrayal, and of ultimate forgiveness.

The story of Rachel and Leah.  But not the Rachel and Leah you might be assuming I mean.  This is not the Rachel and Leah story found in the Bible.  No, this story is one that is all too close to my husband’s family.  You see, this Rachel of whom I speak is Mama Rachel……the affectionate term by which Gary’s Grandmother, Rachel, was known. 

Her story begins in the year 1905, when Leaketh Rachel Eller was born to Joseph Adam Eller and Florin Bavaria Moten.  I include their full names because I find those mountain names to be so intriguing……so full of the rich heritage of the Smoky Mountains where they lived.  It was in Weaverville, North Carolina, where Rachel was born.  This little mountain community in western North Carolina was home to the Ellers.

They later moved to Flat Creek, not too far from Weaverville, where Rachel was raised……along with Robert, Roy, Mary Jo, Leah, John, and Jack.  At the age of 12, Rachel went forward in their small country church and made a profession of faith, as it is often called.  But Rachel would later tell everyone that she really wasn’t saved on that day.  She made a firm decision to follow Christ two years later, at the age of 14, after singing in the church choir and being under great conviction about her sinful heart.  That day, after she had washed the Sunday dishes, she went out behind the house.  She walked up through the garden into a clearing in the pine trees.  There she knelt on a large granite boulder and repented, promising the Lord to faithfully follow Him all the days of her life.  Her commitment to follow Christ and His desires for her life that day never waned.  She lived that life both publicly and privately before her acquaintances, her friends, and more importantly, her family.  That decision to follow Christ totally  changed her life, evident more than ever in the coming hard years. 

 

mom-rachel-001
Rachel

 

There was a man in those mountains, a good man, named William Edgar Edmonds.  Edgar had been in the army, fighting in Mexico against Pancho Villa.  When he was discharged from the army, he became a structural steel worker.  And somehow he met Rachel. 

 

mom-rachel-edger
Edgar and Rachel

 

Edgar and Rachel, he twelve years her senior, fell in love and were married in 1922.  Rachel was only 18.  Edgar was 30.  Edgar lovingly called Rachel “Puny” because she had appendicitis shortly after they were married.  Another, deeper pain entered their lives when Rachel lost their first baby.

 

mom-rachel-002
Rachel

 

But more children followed.  Willene, Jay, Betty, and Mary Leah were born while Edgar and Rachel lived on Balsam Avenue in Asheville, North Carolina.  Edgar was a hard worker whose steel jobs took him far away from home for extended lengths of time. 

Edgar left the steel jobs to take over a service station and garage so he could be home with his family. One autumn day he came home for lunch and told Rachel that he was going hunting with two friends.  The three men later got in a small boat and proceeded to cross the French Broad River.  Recent heavy rains made the river run high and the current strong as they set out in their boat.  There is much mystery about what really happened that day, but the tragic end was the same…..Edgar fell, or was pushed, from the boat and drowned.

It was November 19, 1932.  The first policeman who went to Rachel’s door to give her the horrible news couldn’t bring himself to tell her, so a second policeman broke the awful news to her.  Rachel was holding 3 month old Mary Leah, and in her shock she threw the baby in the air.  Rachel’s sister, Mary Jo, was there and caught Mary Leah in her arms. 

The heartache was made even worse by the fact that Edgar’s body couldn’t be found.  The raging river made it impossible for searchers to find his body, even after using grappling hooks and dynamiting the river bottom.  Rachel’s grief was deep and unending.  For weeks, she walked the river banks looking for her Edgar. 

Finally, on April 8, 1933, three boys decided to go swimming in the French Broad.  They held hands as they waded in the cold water, daring each other to get wet.  One of the boys stepped on something, looked down, and told the others that he had found Ed.  Later, one of Rachel’s brothers identified Edgar’s body.  No one would let Rachel see him, though she tried.  And so she began her life for real as a widow with four young babies to care for. 

It wasn’t easy for a young widow in those days to provide for herself, much less for herself and 4 children.  Rachel was fortunate to have a mother and father who were still living and who loved her.  They built her a house on Flat Creek, where she moved and where she set out to raise her children.

There was another man in those mountains……a man quite the opposite of Edgar.  This man’s name was Wayne, but he is known by family simply and disdainfully as The Preacher.  He did go around the mountains preaching, but by absolutely no means did this man know the Lord personally.  You will understand soon why I say that.

The Preacher carried the mail in those mountain communities.  He was married to a woman, but one day he told her that he had met another woman that he wanted to marry.  He said that her name was Leah.  Leah……Rachel’s sister.  But in the meantime The Preacher found out about Rachel, now a widow, and probably assumed that Rachel had insurance money.  So he wooed Rachel, all the while seeing Leah.  Rachel, unaware of any of this……and probably in some desperation over her situation…..married The Preacher.

Rachel and The Preacher lived at Flat Creek where a son, Wayne, was born to them.  The Preacher began moving his other chidren to Flat Creek.  Yes, there were other children up in those mountains……children that Rachel knew nothing about……children that she began to care for. 

The Preacher eventually moved the family down to South Carolina for a period of time.  He made the children work in the cotton fields…..hot, hard work in the summer sun.  Then he moved them all back to Flat Creek, where later a son was born to unmarried Leah.  Rachel and her mother were both with Leah when her son was born.  Unmarried Leah…..but they all knew that The Preacher was the father of this new baby.  And in anger, justifiably, Joseph Eller disinherited his daughter, Leah.

The Preacher moved Rachel and the children to Bryson City, west of Asheville, deep in the Smoky Mountains.  Then came the war, and The Preacher moved to Akron, Ohio.  Rachel finished training as a machine operator so that she could help during the war, so The Preacher sent for her and some of the children to come to Akron.  Rachel boarded a bus for the long trip to Akron.  She finally arrived, exhausted no doubt, and stepped off the bus.  There stood The Preacher…..and beside him, to Rachel’s shock, stood Leah…..holding a baby.

Leah lived there in Akron with Rachel and The Preacher.  It’s hard to imagine how difficult that was for Rachel.  At some point, The Preacher came back to Bryson City.  Later, he told Rachel he had a heart attack, so she returned to care for him.  Leah returned to Flat Creek. 

The following years were full of great hardship and terrible times.  When he was home, The Preacher was mean and selfish.  Then he would be gone for long periods of time, saying he was preaching revivals.  Rachel did what she could to make ends meet.  She was a mail carrier, even traveling over the mountains to Asheville.  She was a seamstress……a maid at a hotel…..worked in factories……and gardened and canned at all hours so that she could feed her children.  And feed The Preacher’s children, whom she still kept with her. 

Finally, one day Rachel had lived in that desperate situation long enough.  The Preacher came home, yet again, but this time Rachel told him to be gone when she got home from work.  Whether it was in the way she said it, or some other reason, The Preacher did leave and never came back. 

Years later, Rachel and Leah’s mother, known as Granny Eller, decided to try to find Leah.  She was ready to ask law enforcement for help, but guess who stepped in and found Leah?  Rachel. 

Rachel contacted Leah, living in Arkansas with The Preacher, and told her that she needed to contact their mother, now very old.  Leah eventually came home to North Carolina for a visit.  None of the family wanted anything to do with her, except for one sister.  Rachel.

Over the remaining years of Leah’s life, Rachel kept in touch with her.  The one person that you would think would never want to talk to Leah again, much less see her, was Rachel.  But Rachel had learned some lessons since she gave her heart to Christ at the rock behind her parent’s house on Flat Creek.  That young 14 year old girl never dreamed the turn her life would take, but she had given her life to Christ and by doing that, she walked on a narrow path not traveled by many.

It was a path of some joy, yes, yet for much of her life it was a path marred by pain and hurt for which she could never have prepared herself.  But she was kept on that path by the God she knew and loved, to Whom she was always faithful, and Who taught her about forgiveness.  His forgiveness of her, and so her responsibility to forgive those whom had hurt her so deeply.

scan_20151128-4

I met Mama Rachel in 1978, when Gary and I were dating.  I loved her from the start.  She was kind and she was wise.  She loved telling stories, with a sparkle in her eye and her mouth turned up in a grin before she would often let out her wonderful laugh.  She was a faithful saint, a woman of prayer……and her prayers and her love are the reason that Gary came to know Christ.  I never detected an ounce of bitterness in her.

mama-rachel-1979

 

When later I listened to this story of her life, I was stunned.  Just stunned that she had endured such awful things, but more so that she wasn’t angry or bitter.  She wasn’t angry or bitter because she had learned how futile and disobedient it was to live that way.  To follow Christ meant you let Him have charge of it all, even forgiving the ones that to us were the most unforgivable of all.

To follow Christ also meant loving everyone, including Leah’s three boys.  Mama Rachel always let them know that they were cared for by her and welcomed in her home.  She also did the same for the preacher’s other children, laying aside any heartache she may have felt in order to help each of them.  They sometimes lived with her and continued to visit her for the rest of her life.  The fruits of her forgiveness were seen in the love that these children had for Rachel. 

On January 21, 2005, Mama Rachel celebrated her 100th birthday.

mama-rachel
Mama Rachel on her 100th birthday, 2005

 

 

birthday-cake

 

Then 10 days later she entered heaven, free at last from age and pain and the hurts of her life.  She was truly an amazing woman in so many ways, but none more so than in her ability to live her life in forgiveness…..and model to all of us how to do the same. 

Well done, Mama Rachel!  Such a good and faithful servant.

 

her-children1-2
Mama Rachel with Willene, Betty, Jay, and Mary Leah

 

mama-rachel-at-our-wedding
Mama Rachel at our wedding, 1979

 

momrachel-w-adm-and-abm-2
Mama Rachel with Aaron, Andrew, and Andrea

 

 

 

 

New Year, Old Ways

A new year is upon us!!  Welcome, 2017!

A fresh start can be so nice.  New everything.  Out with the old, right?  Well, not always, as I have seen on the past two days.  We all know that to be true.

I ended my old year on a most familiar note…..playing SkipBo with Aaron right before bed.  I guess that’s our version of a party, which suits Aaron perfectly as he really does NOT like parties.  Parties have too much noise and emotion for him, thank you very much.  But SkipBo with Mom is orderly, predictable, with nice piles of sequential numbers, and plenty of opportunity to cheat.  Yes, cheat, of which Aaron is a master if not watched closely.

wp_20161231_20_43_31_pro

The next morning, our New Year morning, saw Aaron blandly staring at me as I very happily wished him a Happy New Year!!  His lack of expression at these moments is often hilarious, but I can’t always laugh because he finds that emotional expression irritating or he thinks I am laughing at him.  Which at times I am, but in a good way that he just wouldn’t understand.

Anyway, Aaron’s main concerns on our New Year morning were:

1)      Can I have FOUR cups of coffee?  (Don’t worry.  The cups are half full).

2)      Are there coupons in the newspaper for me to cut?

3)      What time are we going to Chili’s for lunch?

Aaron had opened a gift during our family Christmas Bingo game.  The gift was a Chili’s gift card that was burning a hole in…..well, in my wallet because I don’t dare give Aaron gift cards to keep.  They won’t keep with him.  They will be lost or given away.

I told Aaron that we would go to Chili’s after church.  He wanted to know the exact time, so I gave him my usual ball park figure and he was happy.  He was not so happy with the coupons in the paper for some reason.  Still slow from his cluster of seizures on Friday night, the coupons did not make him show his usual sense of purpose.  However, he settled in on the floor with his coupon trash cans as he sat on his coupon pillow with his coupon scissors…..and his FOUR cups of coffee on the bench nearby…..and he began to clip the coupons, very slowly.

I was in the bathroom later when Aaron came to the door.  “Mom,” he slowly began.  “I was cutting coupons but there were too much.”

Pause.

“OK,” I responded.

Pause.

“There were too much,” he repeated.

“Yes, there were a lot today,” I replied.

Pause.

“There were too much coupons,” he said again.

Pause.

“There were too much,” he once again asserted when he got no Mom reply.

Pause.  Sigh from me.

“Aaron, just take a break.  You can finish them later,” foolish Mom said.

Pause.

“I ripped them,” Aaron flatly replied.

Pause.  Another sigh from me.

I was following Aaron’s train of thought, one all too familiar.  He didn’t want me to cut those coupons.

“Because you don’t do them right,” he continued.  “You don’t cut them straight on the line like I do.”

He made his exit on that note.  No surprise from me.  It might be a New Year, but we are still living in our old ways…..always, always.

And sure enough, there on the family room floor lay his unfinished little stack of coupons……ripped, just like he said.  Aaron’s thinking has always been this…..that if he can’t cut the coupons, NO ONE will cut the coupons.  Especially Mom, who is a dismal failure at coupon cutting.

wp_20170101_12_03_32_pro

Those ripped coupons were a stark reminder to me that just under the surface with Aaron there is always that issue of how he handles stress in his life.  He reacts, and often his reactions are very inappropriate.  His behaviors are a huge concern to us.  So I stood there being reminded that we were on our first day of a brand New Year, brand new beginnings, brand new opportunities……and here we were, being slapped into our old reality of life with Aaron.

Some things just never change.  We know that.

But there were other reminders of wonderful things that never change, either.  Gary and I finally got to church on time.  Yes, we were one of THOSE people who totally didn’t see the memo on the changed time for church……one of THOSE people who didn’t give New Year’s Day a second thought…..and so on this New Year’s morning we drove to church TWICE.  And we laughed at ourselves.  We’re HOW old?!

Anyway, we walked into church to the hugs and handshakes of sweet friends.  And there was Joyce, who handed me a bag containing a huge bag full of Tootsie Rolls…..for Aaron, because of my recent Tootsie Roll blog.  How unexpected and sweet, in more ways than one!  Later, Aaron was also surprised and full of smiles at this kind gift.

wp_20170101_13_32_06_pro

The care of friends is unchanging in our lives.  Such a blessing!

The worship and the message on our New Year’s morning was encouraging and challenging.  And we sang one of my most favorite songs – Great is Thy Faithfulness.  What a wonderful reminder of God’s unchanging faithfulness in our lives!

And later, as we sat with Aaron at Chili’s, Gary and I watched him ever so slowly eat his enchilada lunch and his salad.  His joy at eating out was very evident.  Never changing, his love of restaurant food!  And seeing that joy is always fun for us, despite our constant reminders to him that he doesn’t need to take 17 toothpicks…..don’t stare at the other people and their food……don’t make noises…..don’t clap…..please don’t loudly stretch when you get out of the booth.

Never changing.

I was able to salvage a few coupons later from the ripped pages.  I didn’t let Aaron see me as I quickly cut them out behind his back.  And I know that we will continue to try to salvage good out of the bad days that Aaron will surely have this year.  It’s our reality with Aaron, New Year or not.

But through it all I know, like that favorite old hymn says, that God will remain the same, too.  Faithful to us, as always.

 

            Great is Thy faithfulness, O God my Father,

            There is no shadow of turning with Thee;

            Thou changest not, Thy compassions they fail not;

            As Thou hast been, Thou forever wilt be.

 

            Great is Thy faithfulness!  Great is Thy faithfulness!

            Morning by morning new mercies I see.

            All I have needed, Thy hand hath provided.

            Great is Thy faithfulness, Lord unto me.

 

wp_20170101_12_22_50_pro