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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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!”

 

 

 

 

Laughing Again

Sometimes Aaron talks in his sleep.  He has conversations that are so clear it’s as if he’s awake, talking to me or Gary.  I hear him because I keep a baby monitor with me when Aaron is asleep, to listen for seizures.  One recent morning, I heard this “sleep talking” from Aaron, and I quickly wrote it down so I wouldn’t forget.

“Mom,” he said.  “In the movie theater, when I was laughing, I couldn’t see myself laughing.  I want to see myself laughing…..again.”

I have no idea what he may have been dreaming that prompted this little conversation.  But I sure have been thinking about it, wondering if deep in Aaron’s mind there is more meaning to this than I…..or Aaron…..knows.

Aaron goes through highs and lows emotionally as well as physically.  Lately, we’ve been having more lows.  He doesn’t want to go to his day group, Paradigm.  Then he goes, and is at times verbal and physical with staff and clients alike.  Sometimes he’s trying to tease and other times he is genuinely angry, but both times he can be hurtful.  He does so much better one-on-one, and most times he doesn’t participate in the group activities.  It’s just sometimes one thing after another during these low times.

Aaron is unfiltered.  Sometimes it’s funny…..sometimes it’s not.  He can tell you to shut up one minute, and the next minute be wanting to tell you something funny……and then wondering why you’re not laughing.  He’s so complex!!!  So frustrating!!!  And so endearing and heart breaking, too.

He knows when he’s done something wrong, but he just can’t seem to stop himself from doing it first, before the knowing kicks in – in time to stop the doing.  Make sense?  That’s our world.

So when he said that he wants to see himself laughing….again….I had to wonder if he is deep down genuinely wanting to be happier, like he used to be more than he is now, and hopefully will be again. 

When I pick Aaron up from Paradigm, I never know if I’m going to see happy Aaron:

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Or pensive Aaron:

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One night last week, I was so tired and so done with some ways Aaron was acting that I was the one who lost control.  I laid down the law with him, but I did it through gritted teeth and a pointing finger.  Yes, I was that tired and upset.  So the next morning, Aaron stood by me and said, “Mom, I’m telling Barb that you grind your teeth!!”

Barb is his second mother – his favorite Paradigm person.

“I don’t grind my teeth,” I replied to Aaron.

“Yes you do!!” he asserted forcefully.  “Last night you went like this!!”  And he clamped his teeth together and bared his lips, much like a rabid dog.

Oh dear.  Is that what I looked like to Aaron?  Probably.

But more than how he said I looked, his comment was a glimpse into how it hurt him for me to respond to him the way I did.

I’m so thankful for every new day, and for God’s new mercies that He shows me every new day.  Those are the same mercies I must extend to Aaron, hard as it sometimes is.

You know what’s really hard?  It’s really hard to remember who has the special needs here.  Sometimes Aaron is so high functioning that it’s easy to lose sight of the fact that his brain does not operate like mine.  And also easy to lose sight of the reality that he deeply feels his struggles more than we can know.

A day or two after I gritted my teeth with Aaron, I noticed that our house was getting a little dark.  The sun had been shining so brightly, but I looked outside to see a dark storm cloud forming right over our house.  Then I heard thunder, and next came a few large raindrops.  Nothing even showed on the radar at this point, but I sure saw and heard our little storm that soon moved on east of us and became a big storm in Wichita. 

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And I thought of what a picture that is of life with Aaron.  He can be our personal storm, loud and disruptive, and then move on to Paradigm to do more of the same there. 

But on this day of our storm cloud, Barb had called to say that Aaron had a bad day.  She said that her daughter, who has Barb’s kind heart, wanted to take Aaron to Wal-Mart.  I agreed, and then when I picked him up later he was so very happy.  He held a Dr. Pepper, and was full of laughter and talk about their little adventure.  What a difference Casady made in Aaron’s outlook with that one simple kindness!  The rain had ended and the sun was shining, both literally and in Aaron’s heart.

And this week, Aaron hurt his friend’s arm by being too rough as they were goofing off or as he greeted her…..I don’t know which.  He broke his glasses in anger on the same day.  Another storm cloud.

He didn’t go to Paradigm the next day.  I took him to Carlos O’Kelly’s for lunch.  It’s one of his very favorite places.  We had a wonderful server who has two special needs boys.  She was so good with Aaron, and I relaxed.  I just watched Aaron eating his food.  He loved every single bite.  He asked to go to Best Buy.  I’ve been saying no to that, but I agreed and off we went…..with Aaron happily pocketing two toothpicks to add to his toothpick collection.

He strolled through Best Buy, looking at this and that, and not asking to buy anything.  He just wanted to look.  It felt good to make him happy in such a simple way……lunch and Best Buy. 

He’s so dependent on us for these times out…..and so dependent on us for his happiness.  Despite our tiredness…..our frustrations…..our ineptness…..our failures…..he needs us. 

I want to see Aaron growing, learning, controlling himself, being responsible.  Like any parent, right?  It’s just a little more difficult for those of us with these issues like we have with Aaron.

But I must agree with Aaron.  Maybe on most days, more than anything, I want to see Aaron laughing again…..laughing from his heart.

And I want AARON to see himself laughing again, happy and having fun, knowing that he is loved. Loved by his Paradigm staff……loved by me and Gary…..loved by friends and family.

And most of all, created and loved by God. 

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Quit Chasing the Carrot

I was ready to take Aaron to his day group this morning, waiting on him to also be ready, and so I decided to go ahead and take our recycle items out to the recycling trash can outside.  I hurriedly passed by our Rose of Sharon bush that sits right outside the garage door, at the corner of our house.  This bush is a prolific grower, so as I passed around it on my way to the recycle can I was thinking that its branches were starting to once again crowd the walkway. 

“I need to remember to trim it soon,” I thought as I walked around it.  “It seems like I just did that.” And my mind made a note on my mental “to-do” list of yet another job that needed doing. 

But as I was dodging long branches, and buzzing bees, I was struck with the beauty of the blooms……the blooms that I so often take for granted because I’m too busy with other things “to-do”………and too focused on the work that was being presented instead of the beautiful workmanship right there in front of me.

I took Aaron then to Great Clips for a haircut before dropping him off at Paradigm.  When I got home, I took a few minutes to look at our Rose of Sharon bushes……really look. 

There is so much beauty there in each bloom.

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So much stunning color.

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Such intricate handiwork done by God.

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Why don’t I take the time to notice and appreciate this gift?  Because I’ve grown so used to it that it doesn’t seem important to me on a daily basis.  I see them every day.  They’re common, routine, old hat. 

Much like the morning I just had with Aaron.  A morning full of his routine……coffee, shower, always talking, computer, get him out the door…..nothing fantastic or amazing.

What if I decided I was tired of this routine?  And oh, I have!  But what if I decided not to participate in it anymore?  Things would really fall apart if I reneged on my responsibility.

But what if I realized that this is not just a responsibility?  My life with Aaron is a privilege……an opportunity.

How is that? 

Yesterday, over lunch, my friend Joyce told me again how she had read a book out loud to her two special needs sons.  She told me this again……because she reads that same book, or sometimes on a good day another book……every single night to her sons.  Again, and again, and again, and again……

It really hit me how wearying that sameness is to her.  In fact, she and I laugh about the sameness of our lives with our special sons.  I’ve written about Aaron and Skip-Bo…..Aaron and his bedtime routine…..morning routine……insistence on sameness. 

And sometimes I wonder, is this all there is for me?  I am limited in what I can do because of being tied down with Aaron.  There, I said it.

I mean, I’m limited in what I can do with my life OTHER than Aaron.  I can’t even commit to jury duty or volunteering because he might be having a seizure day or a meltdown day, and I would be a no-show. 

But as Joyce talked, and we laughed about the book reading, I told her that there is another side to this life.  She is giving glory to God in taking care of her sons, day after day, again and again and again. 

You see, God has given her…..and me…..and you…..the life we have.  Sometimes we think that there must be more out there for us.  If only I could do this, or do that……go here or go there……accomplish this or that like others do…..then my life would have wonderful, beautiful purpose.

When really, right in front of me, IS my purpose.  I often see only drudgery if I’m not careful.  Or at least boring sameness.

But God put me where I am, of that I am certain.  So why do I keep chasing the carrot, thinking that grabbing that “always out of reach” something will be where my joy and accomplishment will lie?

God wants obedience more than anything in my life.  He wants me to live this life that He planned for me, faithfully, here and now, with my eyes on Him and on the responsibilities that come with this life with Aaron……not with my eyes on the “what could be but won’t be.”  And then as a result, living in defeat and frustration and anger because I can’t catch that carrot.

So every day with Aaron is a day to point to God by being obedient in the sameness.  I point to God and give Him the glory He deserves when I am faithful where He has put me, not when I am unhappy and miserable.  Misery disappears, too, when I am thankful for this life.

Thankfulness and misery can’t be in the same room together.  The choice is mine.

 It’s good to step back sometimes and look at the big picture……to see how all the blooms grow together into a thing of beauty……not a thing that needs be dealt with, but to be genuinely enjoyed.   

I may not even see the beauty this side of heaven, but God does.  And someday He’ll share it with me, and I’ll be amazed at how the routine and the sameness and the seeming insignificance were actually huge and wonderful and just what He designed for me and for Him.

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