Green Coffee and A Good Book!

I just wanted to quickly share with you the day that I shared with Aaron this week.  On Tuesday, he had a dentist appointment so of course that also meant that we ate out for lunch.  He came out to the van carrying his new book that he got for his birthday.  He hasn’t been reading much lately, so when my niece had an Usborne party I ordered Aaron a few books.  The one he chose to read first is about true survival stories.  I thought he might like that subject, and I believe I chose well.

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We ended up at our new IHOP for lunch.  It’s near our dentist’s office, I had a free coupon, and Aaron was agreeable.  Perfect!

We ordered some coffee right away on that cold, drizzly day.  I poured some creamer into Aaron’s coffee, under his watchful gaze, and then he thought that Mom might need some further instruction.

“Can we twirl it and make it green?” he asked in all seriousness.

Interpretation:  Could I stir the creamer into the coffee?

Further interpretation:  Aaron is color blind, so just like my dad – the light brown color of coffee with stirred-in creamer is…green. 

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I didn’t even bat an eye at that, but I did chuckle. 

Aaron is so unique on several levels, that’s for sure!

He finally narrowed down his food choice after much discussion, turning of menu pages, and closely examining every available picture. 

Fried Chicken Breasts….crunchy!

Mashed Potatoes.

No.  French Fries.

No.  Back to Mashed Potatoes!

No Broccoli.  (But broccoli came anyway and it was the first thing he ate.)  (Only one food at a time for Aaron.)  (You never mix foods!!)

Honey Mustard sauce for dipping the crunchy Fried Chicken Breasts.

And…the requisite Side Salad, with NO croutons.

So after the lunch was ordered and his coffee was a comforting green, Aaron reached over and took his book that he had carried in with him, opening it to the first chapter. 

He was serious in his reading, and the quietness of those few moments was very unusual for me.  No talk of aliens…Captain James T. Kirk…Darth Nihilus…Malek…  Just quiet reading.

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I loved it!!

And then his salad came, so the True Stories of Survival book was closed after he carefully inserted his bookmark…a random card of some sort that he had scarfed at some business and put into his pocket. 

Every bite of salad and broccoli and mashed potatoes and chicken was eaten and totally enjoyed, as well as more green coffee.  Aaron was very happy!

Off we drove to the dentist, where Aaron marched in with not only his new book, but also a DVD and a CD that he wanted to have close by for some reason.  He immediately claimed his couch, crossed his leg, and opened his books.  He was very serious and full of purpose.

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Until he spied Tammy behind the counter!

Fresh ears!!

So up he hopped and with even more purpose, while ignoring my pleas for him NOT to bother the staff, he proudly showed her his new book.

He told her to read it.  And she, as patiently as if she had all the time in the world, opened his survival stories book.  She read a little, turning the page, and expressing great interest in his book.

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And Aaron expressed his great excitement by rubbing his hands together in typical Aaron fashion.

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“Read it!” he kept insisting.

But I kept insisting that he let Tammy get back to her job, so he finally took the book while Tammy told him how interesting it was.

And I was thinking of how interesting Aaron is!  And how interesting he makes my life as he takes me along with him in every unusual and unique moment.

He wanted to read his book while he got his teeth cleaned.  But the logistics of that wasn’t going to work, he realized, so he was content to supervise me as I put the book on the windowsill along with the DVD and the CD.  But only after Shelly, his hygienist, had also taken a look at the first pages of his very important new book.

God bless the kind staff who didn’t act the least bit hurried or uninterested!

And God bless Aaron, who makes normal old IHOP and dental visits anything BUT!!

And who gives us yet another of our very own survival stories! 

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The Best Gifts Aren’t Wrapped!

Aaron had a birthday last week…his #33!!  My goodness, when did THAT happen?!  Of course, you know what that makes me…but since I’m the one choosing the subject of this blog, I choose not to choose to talk about ME, and MY age!!

Aaron unabashedly loves his birthday.  It’s one of the treasures of his way of thinking, that he doesn’t outgrow the pure joy of his special day.  Yet he also shies away from too much attention, too much hilarity, too much of anything that makes him feel like he must do something that he’s not quite sure how to do.  Yet this year, he was more relaxed with all the excitement and well wishes from others.  He showed it in several ways that were out of his norm, and it was wonderful to see. 

Yet the very best part of his birthday were the gifts.  Oh, I’m not talking about his presents and cards from family and friends…though they were great, and Aaron loved every single one. 

The absolute best part of this birthday, as the celebrating carried over for several days, was for me to sit back and watch the priceless gifts from some amazing people in his life.  I’ll try to let my pictures do most of the talking.  And speaking of talking, I did not get pictures of him talking to his sister, Andrea – or his Aunt Sandra.  But the smiles on his face and the conversations were very sweet indeed…even when he interrupted Andrea in the middle of her sentence to give me back the phone.  We got a great laugh out of that one!

His long and special friendship with Rosa continues as each year they make time to share their birthdays with each other at Chili’s.  Rosa’s mother, Louise, has become a dear friend of mine, as well.  They are a gift!

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I think it was Rosa who suggested that the servers sing to Aaron.  And Aaron, who has never wanted that attention, agreed to it.  Their gift to Aaron was fun…our server there in the middle was wonderful…and look at the joy on Aaron’s face.

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What can beat the gift of sharing birthday ice cream with your very special friend?

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On his actual birthday, Aaron agreed to take cupcakes to his day group.  He has NEVER wanted to do that!  I was so happy! 

We stopped at Sam’s on our way to Paradigm. Aaron, in his typical way, grabbed the attention of someone who works there and asked them where the cupcakes were.  That someone was one of the butchers, and as I tried to tell Aaron and the butcher that I knew where the cupcakes were, Aaron excitedly said to him, “TODAY is my birthday!!”  So this very kind young man told Aaron to meet him at the bakery down the aisle, and he gave Aaron two free cookies.  Look at the joy!

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There is the gift of the very patient therapy dog at Aaron’s day group.

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And the gift of our own Jackson that we took on a walk that afternoon.

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There was the look of total delight as he held his sister’s gift to him.

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And laughter as he later opened his brother’s Artsy Fartsy card…complete with fartsy sound effects.

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There was the gift of Barb, from Paradigm…and her daughter, Casady, coming for lasagna.

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And Aaron wanting Casady to help him open a gift.

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One of the most touching pictures on his birthday was this picture, sent to me by Barb…taken at Paradigm…of Aaron and his friend, Koren, with good old Piper.  To me, it sums up how impacting and touching are the friends in Aaron’s life. 

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How much our special one’s desire to have love! 

How many ways that love can be shown in their lives, even by perfect strangers! 

 Aaron may not always give a verbal thank you very easily, but the smiles on his face last week told it all. 

And that is a wonderful gift for me and Gary as well.

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Things Done Well

I’m sitting here in the few moments I have before I wake Aaron up for the day, listening to my Dino Piano Pandora radio station.  The song?  “For I know, whate’er befall me, Jesus doeth all things well.”  Old language, yes, but beautiful in its reality for all of us who know Jesus.  He DOES do all things well, whether it’s in His beautiful creation all around us…or our new day that stretches before us. 

None of us knows what a day will hold.  But we do know that God holds us and holds this day close to His heart.  He ordains and directs every minute.  It’s up to me to claim this reality, no matter how large or how small are my moments in this day. 

Aaron provides both of those kinds of moments for me…large and small.  I never know when I open his door to wake him up just what our day will entail.  Happy Aaron?  Angry Aaron?  Sad Aaron?  Giving Aaron? 

It’s always a balancing act, based largely on Aaron’s attitude but really, even more so on mine.  It’s sometimes tough, really tough, to be patient and kind when Aaron is anything BUT that!  I often blow it.  But God is faithful and patient with me, and to Aaron, and for that I am very thankful.

Aaron asked on Sunday if he could take flowers to his favorite Paradigm staff and second mom, Barb.  So on Monday he fought off the early morning grouchies as I reminded him of his flower plan.  And later, after I checked the wait time, I threw in a haircut to boot.  Now I had a very happy Aaron!

A haircut and beard trim improved his looks, and then picking out some flowers at Dillon’s improved his Monday attitude.  A cup of coffee from Quik Trip finished it off perfectly!

Of course, he wanted me to go in with him to Paradigm and watch him give Barb the flowers.  When we walked into her office, we found her on the phone so Aaron had to wait – which is something he rarely does well.  But there stood Ashley, his friend…or I should say, his “sometimes” friend.  They sure can go around at times, getting very angry with each other, but look at what they did that morning.

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A HUG!!  So sweet!  And so unexpected that even Barb, though on the phone, reacted as I did.  “Awwww!” we both expressed. 

And then when Barb was off the phone, the happy flower giving took place, with more “Awwwws,” and smiles, and hugs.  I drove away with a peaceful heart.

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I picked him up that afternoon, still happy and with tales of all the French fries he ate for lunch.  At least that’s the story he told me.  I never quite know if his food exploits are all true, because sometimes he loves to give away money as much as he loves to give away flowers.  He knows that giving away money is not allowed, so he’s become adept at telling me what he knows I want to hear instead of telling me what he really did with his money.  In other words, he has become a gifted liar at times, sad to say.

So I balanced my skepticism of his story with relief at seeing him so happy, not wanting to discourage him or accuse him, yet still driving home the point that I do hope he really DID eat French fries.  But he was already off on his next topic, reminded by his food story that the next day was doctor appointment day…and doctor appointment day means eating out day.  Doctor visits take a major back seat to the real purpose…for Aaron…of doctor days.  They are restaurant decision days!!

Aaron had a difficult time getting out of bed the next morning for his doctor appointment.  It didn’t matter that I had well prepared him the night before concerning the time we would need to leave.  He finally was able to push back the covers, take a shower (possibly! I never know for sure!), drink his coffee, and climb in the van.

I could tell that Aaron was very, very tired.  On many days, he seems to be over-drugged.  Sluggish…slurred speech…very heavy eyelids…wobbly in walking.  This doctor day was such a day for Aaron, but I was actually glad.  Now the doctor could hopefully see what I have told him…that I think Aaron’s weight loss is impacting his medicine dosage.   

Again, more of what we must balance with Aaron.  Seizure control balanced with his ability to function as normally as possible.  Medicine’s benefits balanced with sometimes detrimental side effects.

Aaron is on a new seizure drug since his hospital stay in May for his video EEG.  His seizures are much better on this new drug.  We increased the dosage after one month, but then a few weeks ago we had to decrease the dose back again after he became too slow and sleepy.  Yet still, Aaron continues to have many days and moments of still acting like he is too drugged.

Aaron was still droopy and tired when we arrived at the doctor’s office.  Even seeing some of the staff dressed for Halloween didn’t inspire much of a response. 

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This look at Aaron shows how he really felt that morning.

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The weight loss combined with the tiredness did concern the doctor.  He is used to listening to Aaron talk about Independence Day movies or Captain James T. Kirk or Darth Nihilus, but there was none of that on this visit.  We will be slowly decreasing one of Aaron’s main seizure drugs to see if that will help.  Another decision to make…another issue to balance.

And Aaron had most definitely made his restaurant decision!  No amount of sluggishness could dampen his usual eating-out enthusiasm.  His choice?  Denny’s!! 

He was at first cold from the weather and slow in his reactions…

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But that soon changed as he drank some coffee, ate his favorite side salad with no croutons, finished off his French fries after methodically dunking each one into his honey mustard sauce, and then successfully tackled his stack of chicken strips.  If we ate out like that every day he just might gain back some of that lost weight!

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Watching Aaron for just those two days reminded me again that we have many sides to our complicated son.  In less than 48 hours we saw highs and we saw lows.  We saw progress and we saw some steps backward.  We smiled and we frowned.  We felt relief and we felt our hearts grow a little heavier with nagging worries. 

I remember once when Aaron wasn’t feeling well.  He asked me if he had a seizure during the night, so I told him that he had a small one. 

“That’s probably what’s with me today,” he replied.

Aaron’s epilepsy and autism are certainly with him every day.  And in extension, these issues are with Gary and I every day.  But remember the song I was listening to earlier?  “For I know, whate’er befall me, Jesus doeth all things well.” 

Sometimes the things He “doeth” aren’t what I would do, but I’m not in charge.  God is!  I know He loves Aaron, and loves Gary, and loves me.  All that God does, He does well.  I may not see it as well now, or feel it, or like it, but in my heart and my head I do know that all…ALL…He does and allows, is well and good. 

And THAT truth is really what I want to stay with me today, and every day!

 

 

 

 

Life is Like a Coupon Box

I walked into the kitchen on a recent Sunday, after Aaron had completed his usual Sunday coupon clipping chore.  There on the counter lay a Dillon’s coupon, one that I had put into my coupon box several days earlier.  I knew right away what this lone coupon on the counter meant.  It spoke volumes to me as it silently stared up at me…..volumes about our Aaron.

You see, this coupon…

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Does NOT belong among these coupons.

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The Dillon’s coupon is not a regular coupon to Aaron, and only regular Sunday coupons are to be placed…precisely…in the coupon box.

Silly mom for thinking otherwise.

Aaron’s life is like that coupon box.

Aaron wants most things in his world to be done in a certain order…..words said in a particular way…with order and sequence and expected results.  But life doesn’t operate that way, no matter how much Aaron tries to orchestrate it to do so.

I saw a small example of this the other night in our family room.  Aaron was looking forward to watching one of our favorite television shows.  He wanted to know what time it was coming on, so I told him what the television guide said.  BUT…I had to add…the football game that was on earlier would no doubt disrupt even the best planned TV schedule.

The TV guide said our show would air at 8:30, but at 8:30 another program was still on.  Aaron was not happy about this development.  I explained the situation, multiple times, as Aaron sat in his favorite chair with his legs covered by his favorite blanket and with his favorite snack-of-choice on the ottoman in front of him. 

He sat there in misery, staring at his jar of cashews, and not-so-patiently waiting for his program to start.  Football games are the epitome of a messed- up world, in Aaron’s orderly world.  A 15 minute quarter may last 47 minutes, for crying out loud, and THIS IS UNACCEPTABLE!! 

So there Aaron sat in his chair, waiting for the other boring show to end so that his anticipated show could start.  But that wasn’t all that wasn’t right in Aaron’s world.  It was the cashews.

You see, he will only eat his snack-of-choice during the actual television program.  Not during the offending show that was still playing.  Not during the commercials.  ONLY during the actual program that is to be seen will he eat his actual snack that is to be eaten.  So he sat there, staring at his open jar of cashews in front of him, but forbidden because of the dumb show that was still on…because of the dumb football game that was before that…on this day that was getting dumber by the minute. 

We made it through that cascading torrent of dumbness…barely…without a meltdown or without Aaron giving up on it all and returning to his room like he threatened to do.  And on the very second that his program appeared on the screen, Aaron’s hand dipped into the jar of cashews and his world was set upright on its axis, as it should be. 

The coupon box once again only held the correct coupons.

Last night, as I waited for Aaron to get his bedtime routine completed, I watched him write down his time-to-bed in his special notebook…a new notebook, by the way.  His other is year’s full of the times he went to bed and the times he got up in the morning.  Aaron wrote down the time…10:14.  He was preparing to close his notebook, but paused and then gave a little sigh as he scribbled something out in his Went-To-Bed column.   

“What happened?” I asked.

“It went to five,” he flatly answered. 

Yes, the time changed the second he finished writing 10:14.  It became 10:15, so he HAD to correct the time in his notebook.  Scribbled-out numbers are unsightly, but far preferred over having the WRONG time recorded. 

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The coupon box was once again correct.

Aaron is slowly working his way through watching the complete old Star Trek television series from the 1960’s.  In the opening monologue before each show, Captain Kirk is referred to as Captain James T. Kirk.  Therefore, Aaron NEVER calls Captain Kirk just Captain Kirk.  Captain Kirk is Captain JAMES T. KIRK, people!!

So this conversation happened the other day:

“Mom, who’s your favorite Star Trek character?” Aaron asked.

“Hmmm…” I pondered.  “I guess it would be Captain Kirk.”

Aaron looked at me blankly, as if I had mentioned a foreign character from another show and another time and another planet and another galaxy.

“Who?!” he questioned.

“Captain Kirk,” I repeated.

He continued to stare at me.

Finally…

“You mean, Captain James T. Kirk?” he queried.

Oh, how I wanted to double over in a total belly laugh!!!

But doing so would have highly offended Aaron, so I had to just answer him as seriously as if I was agreeing to the outcome of a very serious discussion about a profound world event.

“Yes,” I sincerely replied.  “Captain James T. Kirk.”

Aaron was very relieved to have this issue settled, and so his Star Trek discussion was continued.

The coupon box was aright once more.

It’s vital that those who live and work with Aaron understand how very profoundly his life and his happiness is tied to the order that he alone sets for himself…and expects everyone else to understand and follow.  Sometimes his desired order can’t be followed, but we must know how to guide Aaron through those times.  Those times when the wrong coupon is in his box, and Aaron most definitely will react, are times that demand great patience on our part. 

When Aaron is deeply frustrated, angry, defiant, or confused is very often a time when the wrong coupon is in the box.  We can’t always see it and we don’t always expect his strong reactions, but we…and everybody else who works with Aaron…had just best realize that there is more going on inside that brain of his than we will probably ever know or even remotely understand. 

It can be so hard and challenging and maddening to us at times…and we know Aaron better than anybody on the planet.  We love him more than anyone, too.  Imagine how very difficult it can be for others to achieve this level of understanding!  And how very impacting in our lives it can be for this lack of understanding to affect us, and Aaron, in a very negative way! 

We have been very blessed with some amazing, kind, understanding people in Aaron’s life.  We have also seen the damage that can come from those who don’t get it.  We have watched this damaging impact in the lives of others whom we know and love, as well, who have special children that have their own coupon box.

Let’s give grace to our children…to the parents of these special ones…and try to comprehend just what each one’s coupon box is really all about. 

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SEXY!!!

I posted this little piece on my Facebook page this morning, and decided…..in keeping with this blog title of He Said WHAT?!…..that I should post it here as well.  Enjoy!  And welcome to my world, daily my world, thanks to Aaron!  🙂

Aaron could have slept in today, but NOOOO…..he was up before the light of dawn!  He’s raring to go to his yearly meeting at Carlos O’Kelly’s.  A lunch meeting, which is hours away.  Sigh.  He just came bounding in the kitchen.

Aaron:  MOM!! People kiss on Star Trek!

Me:  OK.  (I figured that was a safe response)

Aaron:  Is it OK to kiss?

Me:  It depends on who you kiss.  (Now I’m worried).

Aaron:  So who can you kiss?

Me:  (I almost said, “Lots of people,” but my coffee kicked in and I thought better of it). You can kiss your husband or your wife.

Aaron:  Well, on Star Trek a woman came from another planet and she kissed Captain James T. Kirk!!

Me:  OK. (Another safe response, I hope) (Although I could have told him that he could kiss someone from another planet. That’s pretty safe.)

Aaron:  When they kissed, I said, “SEXY!!” (No surprise.  He says, “SEXY!!” when Pat Sajak hugs a contestant on Wheel of Fortune!)

Me:  (No response) (Hoping he will go take his shower)

Aaron:  Is it OK to say, “SEXY?!”

Me:  (searching for wisdom) Yes, it’s OK to say sexy, but you don’t need to go around saying it to everybody.

Aaron:  Well, the next time you and Dad kiss, I’m saying, “SEXY!!”

Me:  That’s fine. (Please let this be the end!)

Aaron:  SEXY!! (Finally walking away!)

I guess I should inform Gary that we will now have our own cheering section when we kiss.

 

The Unknown Path

Aaron woke up yesterday morning in a bad mood.  He was obstinate, and so I was trying hard to just leave him alone.  I know that he often comes around to “the good side” if I give him some space and some time.  He banged his fist on his desk, making me jump even though I wasn’t in the same room with him.  Still I kept quiet.  But when he came downstairs later as I waited on him to leave for his day group, he was carrying a bag full of his Star Wars DVD’s.  He told me that he was going to give them to a friend because he didn’t want them anymore…..and I told him that he was NOT giving them to his friend.  He then slammed the bag on the kitchen table….and I lost my composure.  Big time lost my composure.

Lots happened after that.  Aaron got in the van, was quiet for awhile, and then he began to tell me that he loved Dad more than me…..that Dad was nicer than me…..that he wasn’t going to watch television with me that night…..and on and on.  I was still angry and not soft toward Aaron at all.  And soon he was crying, which is a sure sign of total frustration on Aaron’s part.

My heart was sad and broken.  I was mad at myself, and mad at Aaron, but also I was hurt for him and just so tired.  I knew that there was more to my anger than Aaron’s belligerent behavior.  Sure, I do get tired of dealing with Aaron’s inability to sometimes control his emotions and his actions.   But there are times that I also struggle with controlling my own emotions and actions.

Without getting too specific, I was already bothered by some thoughts I was having that had nothing to do with Aaron at that moment.  I was having a little pity party of my own.  It was one of those times when I was already looking at Gary’s and my life with Aaron, and giving in to the reality of some things that can really get me down.

Sometimes Gary and I would just like to pick up and go.  Many of our former responsibilities are gone.  But with Aaron, we always need to find caregivers, which is extremely hard to do.  It’s also expensive.  So at a time when couples our age are empty nesters, retiring, enjoying life…..Gary and I are stuck.  I feel terrible saying that, but it’s the truth.  I usually don’t get mired in those thoughts.  I often look at Gary and say, “We have no problems.  God has been so good to us.”  And Gary is careful to thank the Lord for our many blessings when we pray.

But yesterday morning, I was not feeling so blessed.  And therein is much of the problem I was facing.  I let my feelings dictate my response to Aaron, and it was not pretty.  It was not helpful or kind to Aaron.  And I was not pleasing God, for sure.

I know better than to compare myself to others.  But I also know better than to stay in that frame of mind, or to heap guilt upon myself and live in defeat after I blow it.  God forgave me, and Aaron did, too.  I pulled over in a Quik Trip parking lot near Aaron’s day group so that he and I could talk.  It was difficult.  Aaron was crying and I was very frustrated at myself and at him.  Finally, though, we sifted through our hurt feelings.  I told Aaron that I was sorry for the way I acted.  We went to Paradigm, where Aaron walked around talking to some of the staff and some of his friends, but eventually leaving with me.

And as we drove toward home……..in the middle of Aaron talking about Protocol Droids and Darth Nihilus and star maps and HK47 and Revin and Malak and endless other outer space things that are only important to him……he said, “Do you know it’s hard for me to say I’m sorry?”

Wow!!  That was amazing!

I smiled, patted his leg, and assured him that I understood.   We later went to Chili’s for lunch, where we blew our straw wrappers on each other like we always do and where Aaron asked the blessing – “Lord, thank you for this food and please help me to be good today.”  And THAT was a blessing!

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Yes, my day was totally rearranged and very different from what I had planned, which was to be a nice rainy day at home to get some extra things done and not have anywhere extra to go.  But God had rearranged my attitude along with my day, and that is always the best help ever.

God wasn’t through with me yet, though.  This morning I read this verse in Psalm 77:19.  The Psalmist was recalling what God had done for Israel when they left Egypt.

“Your road led through the sea; Your pathway through the mighty waters – a pathway no one knew was there!”

Israel wasn’t happy when they got to the Red Sea.  God rescued them from slavery in Egypt and they were thrilled…..until they saw where God brought them.  The path led to an impossible situation.  The Red Sea!  Now what?!

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But God had a path planned for them…..a path no one knew was there.  But God knew!!  He showed Israel His power as He rescued them there.  He taught them lessons they would never have learned had their path remained easy and secure.

God led them through the impossibility on the path He knew was there.  So God has put each of us who follow Him on a certain path in life.  We don’t always get the green pastures or the still waters of Psalm 23.  In fact, all of us are going to come upon a Red Sea in our lives…..an impossible situation that will end up showing us the possibilities that God has in store for us.

His power is made perfect in our weakness, He has told us, and in His power we take one step at a time…..step by step…..on the pathway that we never knew was there.  But He knew it was there!

He may lead us TO a Red Sea, but He has promised to also lead us THROUGH the Red Sea.  I may not even see the other side of my Red Sea on this side of heaven, but I do know that God will shepherd me through each day on this particular path.

I love the old hymn, He Leadeth Me.

He leadeth me!  O blessed thought!  O words with heavenly comfort fraught!  Whate’er I do, where’er I be, still ‘tis God’s hand that leadeth me.

Sometimes mid scenes of deepest gloom, sometimes where Eden’s bowers bloom.  By waters still, o’er troubled sea, still ‘tis His hand that leadeth me.

He leadeth me, He leadeth me, by His Own hand He leadeth me;

His faithful follower I would be, for by His hand He leadeth me. 

 

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These Words

Last night I was helping Aaron turn down his covers as he got ready for bed.  Sometimes there is a moment that is especially poignant with Aaron.  A moment that hits me in a profound way…..in a way that causes me to remember where we were and what we were doing when the moment occurred.  The night before, Aaron….for whatever reason…..was very groggy and dizzy, with slurred speech and unsteady legs.  He was still trying to talk, but with great effort.

Last night, though, Aaron was his usual chipper self.   We were going through his bedtime routine as he talked and talked and talked.  He brushed his teeth, swished his mouthwash, helped me set up our diffuser – which means he poured in the water, checked the name of the oil, and took a little tentative sniff – watched as I turned on the baby monitor we use to listen for seizures, made sure I picked out his clothes for the next day and that they were on the back of his desk chair, put his back scratcher and hand towel on the seat of his chair, blinds lowered, desk clock turned around so the light doesn’t bother him, glasses put just where they belong, wrist watch put right beside his glasses, shoes in front of the closet, stuffed animals precisely in place in his bed, covers pulled up, and animal print blanket put on top of the bed exactly right and with no wrinkles.  It’s a process…..done precisely….or we must re-do the process until precision is reached.

It was when we were standing beside his bed, me on one side and Aaron on the other….pulling up his covers…..that Aaron said this:

“Mom, guess what Shauna is getting?”

Shauna is one of his friends at his day group, Paradigm.

“I don’t know,” I replied.  “What is Shauna getting?”

“She’s getting a NEW wheelchair!” Aaron answered.

Aaron had no idea of the impact of his simple answer to my question, and of the many thoughts that cascaded through my mind in a split second.  He just kept talking.

“I told her she should get a PINK one!!” he exclaimed, and then laughed at the thought of a pink wheelchair.

We smoothed his animal print blanket then.  He was finished with pink wheelchairs and had moved on to his bedtime log book…..his notebook in which he writes down the exact time he gets in bed and the exact time the next morning that he gets out of bed.

10:22.

That’s the time he wrote.

So was it 10:22 when Aaron spoke of Shauna’s wheelchair?  Or 10:21?  That fact would be important to Aaron.

But all I knew, after our goodnight hug and after I had turned out his light, is that my 33 year old son was happy about his friend’s new wheelchair.  That was nice of him.  But…..

Aaron wasn’t talking about his friend’s new car.  Or new job.  Or new house.

He was talking with pleasure about her new wheelchair……because his friends have special needs, like he does…..and a new wheelchair is indeed a big deal.

But as Aaron’s mother, this comment from him somehow yanked open that little door in my heart that I try to keep closed.  I try to keep it closed because I don’t want to hurt for him or for his friends.  I want to see his life as a wonderful thing, and it truly is!

But the reality of his life…..and the lives of his day group friends…..is far different from your typical 33 year old young man. Most young men Aaron’s age would be talking about new cars.  Aaron was talking about new wheelchairs.

I’m so happy that he was happy for Shauna.  But my momma heart got a deeper little crack in it last night.

I haven’t been writing lately.  I’ve just been very burdened about lots of issues.  Life goes in cycles like that, you know.  As a Christ follower, I know to be careful during those down seasons.  It’s very easy to be consumed with the here and now, and with all my own worries…..not to mention the serious concerns for some in my family and some of my friends…..and even our great country.

So I’ve asked God to do what I have often in the past asked Him to do, and that is to give me some extra special assurance from His Word.  And God did just that a few days ago.  He gave me a sweet message from His Word, ABOUT His Word.

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It’s from Isaiah 8.  Israel was facing dark times, and so God told them lots of truths about how they were to behave, how they were to act, Whom they were to obey and to fear, and even warned them about seeking answers from mediums and fortune tellers.

And then in verse 20, God said to Israel:  “To the teaching!  And to the testimony!”

That’s it?

Yes, that’s it!

That’s EVERYTHING!

Where do I need to go when I’m overwhelmed with burdens…..with darkness…..with struggles…..?

Where do I go when the reality of Aaron’s life makes my heart sad?

To a book?  To a person?  To an activity?  To food?  To entertainment?

NO!

To the teaching!  To the testimony!

In other words, to God’s Word.  Staying in my Bible.  Reading it with purpose, asking God to open His Word to me and give me direction….this is where I need to go.

Dale Ralph Davis, in his book Stump Kingdom, says it so well:

“Only the light of the written word will carry us through the darkness of our times.  This holds true whether the ‘times’ are dark historical times, dark personal times, or even the end of our present time.”

Davis then told about Robert Bruce, an old minister in the Kirk of Edinburgh, who on the day he died asked his daughter to set his finger on the last two verses of Romans 8:  “I am persuaded, that neither death, nor life, nor angels, nor principalities, nor powers, nor things present, nor things to come, nor height, nor depth, nor any other creature, shall be able to separate us from the love of God, which is in Christ Jesus our Lord.”

“These words – that is always the Christian’s slogan.  Only in the teaching and the testimony is there light and help and anchorage.  The Christian is the man or woman who wades through the affairs of life always saying: ‘Set my finger on these words.’”

Wades through the affairs of life……the unexplainable, the sad, the hard, the heavy.

I must wade through it all with my finger on God’s Word.  No other substitute will give me the peace and the comfort that I will find as I read what God says to me in His Word.

I can’t tell you why Aaron has special needs.  I won’t say it doesn’t hurt, sometimes more than others.

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But let me tell you about God.  Let me tell you about His love.  Let me tell you that He is sovereign.  Let me tell you what He has written.

“To the teaching!  And to the testimony!”