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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My Priceless New Year’s Gift

I was sitting by our Christmas tree this morning, knowing this is the last time I’ll be enjoying its soft beauty this year.  And it hit me.  Everything I do today will be the last time I do “that” this year, because tomorrow is a whole new year!  My brain, fuzzy from another long seizure night with Aaron and waiting for my first cup of coffee to kick in, tried to wrap itself around that fact.  2017 is almost here!

I’m not really as excited as that exclamation point may indicate.  I mean, a new year is always pretty cool to think about.  But life has a way of pulling us back to reality, especially as we get older, and for me my vision is narrowed to what I have on my plate right now.  I know I need goals, but on days like today, today is about all I can handle.

Up four times with Aaron and once with the dog last night made my reality at that moment very narrow.  It was the tree and the lights…..my coffee…..and the baby monitor beside me as I listened to Aaron after he returned to bed, my ears jumping into alert mode at each change in his breathing.

And one more thing……a word.  The word “grace.”  Sometimes that word may be overused, if that’s possible, and for me may lose its full meaning.  But this morning that word kept going through my tired mind.

Two meanings of this word popped up on my handy phone dictionary app.  They are:

1)      The freely given, unmerited favor and love of God.

2)      The influence or Spirit of God operating in humans to regenerate or strengthen them.

Perhaps my favorite grace passage in the Bible is 2 Corinthians 12:9-10.  I was drawn to that this morning, and though I know it pretty well by heart, I made myself actually walk upstairs to get my Bible.  Really, walking up the stairs took some effort this morning.  I felt like I should copy Aaron, who earlier went up the stairs monkey fashion on all fours, as he often does.

Anyway, Bible in hand, I sat down and opened to these familiar verses.  Paul had been given his “thorn in the flesh,” whatever that was…..and three times he implored God to take it away.  Implored…..past tense.  It seems that Paul was done with asking God to remove it, and was now able to say in the next verse that God “has said,” meaning that there was an ongoing result of God continuing to say these truths to Paul:

“And He has said to me, ‘My grace is sufficient for you, for my power is made perfect in weakness.’  Most gladly, therefore, I will rather boast about my weaknesses so that the power of Christ may dwell in me.  Therefore, I am well content with weaknesses, with insults, with distresses, with persecutions, with difficulties, for Christ’s sake; for when I am weak, then I am strong.”

One thing I had written beside these verses in my Bible, my memorial stone, was simply:  “Feb. ’92, Aaron.”  That was the terrifying day in Germany, 25 years ago, when Aaron had his first big seizure.  I’ll never forget that Sunday afternoon in our kitchen in military housing…..the terror of him falling backward into my arms…..blood coming from his mouth as he seized and I screamed for Gary……the frantic phone call……the ambulance……the German children’s hospital…..language barriers with doctors…..so much to absorb and to understand and to fear.

But God was there with us bringing His unmistakable peace and calm, due only to His grace.  It had nothing to do with Gary and me being strong, or having a certain personality, or any of that “me” stuff.  I was a momma wreck!  It was totally God pouring out His strength…..His grace…..onto and into me.

So here I was this morning, 25 years later……TWENTY FIVE!!!!…….and God pulled me back to these memorial verses.  Nothing has changed.  Aaron had four hard seizures last night.  God has not taken away this thorn, this reality, this sadness in Aaron’s life and in ours.  But he has, over and over and over again, shown us His grace….His love……His favor…..His strength…..in the middle of our pain and our struggles.

So am I, like Paul, “well content” with this weakness that God has given our Aaron and us?   That phrase means “to take pleasure in.”  Well, no.  I can’t honestly say that I take pleasure in Aaron’s seizures or in his autism.  But I must look beyond all that list of things Paul mentions “taking pleasure in,” and look at those words, “for Christ’s sake.”

For my whole life, really, is to point to Christ.  That’s what following Him is all about, after all.  And if I could handle it all myself, I wouldn’t need Him.  But I DO need Him!!  And therefore, what Paul said is so true.  “When I am weak, then I am strong.”

Strong because God makes me that way, and He makes me that way only because of His grace.  Back to that word again…..grace……the outpouring of His favor and strength upon me.

So I just found my resolve for this new year.  It’s to come back to the realization that I can’t change a thing, but I don’t need to change a thing.  Recognizing my sorrow and my pain isn’t meant to point to me and to make me the focus.  It’s to point to Christ and to talk about His grace through it all.

“So that the power of Christ may dwell in me,” Paul said.  That word “dwell” means “to pitch a tent.”  Christ’s power is here for the long term, for me, as I rely on Him and trust Him in the hard times and thank Him through all of it.

His grace is here for all of us who follow Him.  What a priceless gift!  So I close with the words of this old song written by Don Moen, perfect for this new year ahead.

 

                     He Giveth More Grace

He giveth more grace as our burdens grow greater,

He sendeth more strength as our labors increase;

To added afflictions He addeth His mercy,

To multiplied trials He multiplies peace.

 

When we have exhausted our store of endurance,

When our strength has failed ere the day is half done,

When we reach the end of our hoarded resources

Our Father’s full giving is only begun.

 

His love has no limits, His grace has no measure,

His power no boundary known unto men;

For out of His infinite riches in Jesus

He giveth, and giveth, and giveth again.

 

His grace is such a gift!  And so is our Aaron.

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Who Is Aaron Supposed to Be?

I love this picture I found on FB this morning. 

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Aaron certainly has opened our eyes to a whole unique and special way of viewing his world…..which becomes our world as Aaron pulls us in, willing or not.  It doesn’t matter to Aaron if I am busy or tired or embarrassed or if I’ve heard or seen the same thing a zillion times.  To him, each experience seems refreshingly new and fun and definitely shared.

Like yesterday at the grocery store.  I decided to run back to the produce section after I saw the pretty cantaloupes in a fellow shopper’s cart.  Aaron loves everything about the grocery store, except maybe for the aisle with toothpaste and body wash.  If you lived with him awhile, you would see that those items are not a priority or an interest of his.  Unfortunately.

Anyway, I was examining big round cantaloupes while Aaron was pointing out the cool, spritzing water that was spraying over the vegetables nearby.  You would think that this was the first time he had ever seen this gentle spray, but it isn’t.  It’s probably the 753rd time I’ve told him what it is, but he was as excited as if he was seeing it for the first time. 

I turned and headed for the registers after deciding against any cantaloupes.  I knew that Aaron was lagging behind.  I was already in the florist section when I turned to look for Aaron.  There he stood, large and loud Aaron, holding up an artichoke.  His face was just a huge smile as he held his prize up for me to see.  I had to smile, too, standing there among the sunflowers and daisies.  What is it about artichokes that always, always grabs Aaron’s attention?  We have examined them, cooked them, and researched them…..but still Aaron will find those artichokes and hold one up for me to see as if it’s the very first artichoke that we have EVER encountered. 

I smiled and then shook my head no as several surrounding people were turning their heads to see who Aaron was showing his artichoke to.  I could see them making the connection……wondering, I’m sure, about Aaron. 

Maybe if we all saw our world through Aaron eyes, we would smile more and laugh louder and keep our curiosity sharper, even as we age. 

So let me share with you a few snapshots of Aaron in his world.

Making a funny face while we played Skip-Bo, trying hard not to laugh:

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Putting a clothes pin on his earlobe, which is totally nothing new…..but you wouldn’t know that if you looked at how intense and serious he was on this night.

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Playing Skip-Bo, knowing that Mom is looking out with eagle eyes for his cheating attempts.

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Waiting for me to go through the Wal-Mart line, and smiling like this when I looked up and saw WHERE he decided to wait……the chair at the bank desk. 

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Noticing after he got his teeth cleaned that the digital clock on the counter was flashing.  “Your clock is destroyed!” he exclaimed as he pushed by his hygienist and tried to fix the clock.  Incorrect time is intolerable!

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Recovering from three strong night seizures.  We had to cancel his therapy appointment, which to Aaron meant cancelling our lunch plans.  I was nervous about taking him into a restaurant, fearing another seizure, so instead we went through the drive-through window at Little Caesar’s and got him pizza AND breadsticks.  He was happy.  I was happy.

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And finally, sunflowers.  Aaron has wanted sunflowers for such a long time, so this summer while I was in Houston to see Andrea, he and Gary planted sunflowers around our garden.  He has watched them grow and grow and grow, until now they are much taller than he is.  Now he can’t wait for them to bloom.  He was looking at the sunflowers one day when they were much smaller.  “When are they supposed to be the size they’re supposed to be?” he asked.

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I smile at the way he phrases things.  His unique way of expressing himself is a big reason I started this blog.  I can remember wondering, when Aaron was much younger, how he would turn out.  In a sense, I wondered when Aaron was supposed to be the Aaron he’s supposed to be – to borrow Aaron’s wording. 

Well, Gary and I pretty well know that Aaron is now the Aaron he is supposed to be.  Some days that can be discouraging, I’ll admit……on the seizure days or on the hard behavior days or on the days when we are tired and really don’t want to see another artichoke.  Yet Aaron is who he is supposed to be because he is who God created him to be. 

But God gives grace when we need it the most.  He really does.  I don’t think I even realize sometimes in just what forms His grace comes to me.  Yet I do know, often in retrospect, that making it through the frustrations……the fears……the failures…..is the hand and the grace of God upon us. 

And I am so thankful that God gives me pause more times that I can count……moments to pause and enjoy Aaron’s world through Aaron’s eyes.

So you see that the sunflower in the above picture is just too perfect.  Aaron is waiting for his sunflowers to be the size they’re supposed to be and to bloom.  Gary and I see that Aaron is who he is supposed to be, and that every day he blooms in our lives, teaching us to see the world through different eyes. 

I pretty well know, too, what Aaron would say if he looked at this sunflower picture.  “What?!” he would probably say.  “That sunflower is wearing shades!!”

Better to see you with, Aaron.  Better to see you with. 

 

 

 

 

The Signature

It was last December 13, a Sunday afternoon, when I heard my text notification buzz.  Reaching for my phone, I saw that the message was from our friend Dona in Texas.  My first thought was that maybe she and her husband Steve were coming up our way and wanted to stop in for a visit.  But I gasped when I read her text.  Then I read it again to be sure that I had understood it correctly while hurrying downstairs to tell Gary the news. 

“Please pray,” Dona texted.  “Steve has had a major stroke and is being airlifted to a hospital in Dallas.” 

How could this possibly be happening?  Steve is our age, healthy and very active.  He had recently completed his Master’s; taught in the aviation department at LeTourneau University; and was a Colonel in the Texas Civil Air Patrol. 

All that day, Gary and I prayed as we waited for more news.  And my mind went back over the years of our friendship.  Dona and I went to college together at Piedmont Bible College, where Gary later joined our ranks as a student and Steve came as an aviation instructor at the Missionary Aviation Institute there.  Steve and Dona fell in love at the same time that Gary and I were doing the same.  And on May 26, 1979, Gary and I were married……and so were Steve and Dona.  We even married at exactly the same time in the evening, though in different towns.

Our friendship grew during the time that Gary completed college, Steve continued to instruct missionary pilots, and Dona and I worked.  Life was simple and sweet.  One day Steve told Gary that he wanted to teach missionary pilots how to fly helicopters, but one thing needed to happen first……..Steve needed to learn how to fly them.  Steve decided to try to join the army, learn to fly the choppers, and then go back to training missionary pilots when his time was up.  Gary had been in the army during Vietnam, so Steve asked Gary to go with him to the recruiter’s office in order to keep an ear out for anything that wasn’t quite kosher. 

Gary and Steve went to several appointments together.  Some people would say as luck would have it, but the four of us knew that it was as the Lord would have it that Steve did not go into the military, but Gary did.  Steve and Dona ended up living in Tennessee, where Steve was an air traffic controller.  Gary and I lived in six different places during his time as a military pilot. 

Steve and Dona remained dear friends over those years.  We visited each other when we could, with Steve and Dona coming to see us at several places where we lived, including here in Wichita.  They moved to Texas several years ago, and Steve remained active in aviation both as an ATC instructor at LeTourneau University, and as a commander and pilot in the Civil Air Patrol. 

Then came December 13.  It was a cold, rainy Sunday in Texas.  Dona had stayed home from church with a cold.  And Steve was found after church, lying beside his vehicle in the rain, mostly unresponsive.  A major stroke.  Airlifted to Dallas, where he spent weeks in the hospital and in a rehab hospital.  Home now, facing continued extensive rehab.  God has been so gracious to Steve.  Much of his function has returned, though he is still profoundly affected by the stroke. 

His life has dramatically changed, as has Dona’s, in ways that most of us never consider until we are faced with the reality of something like this……something completely life changing.  Dona writes about their life and about their Lord, and sends it out as emails.  She’s written these devotional and inspirational pieces for years.  What a treasure they are!  And especially now, as she has allowed us to walk with her as she walks with Steve on this path full of twists and turns.  She and Steve have always been examples to us of steadfast faith, but never more so than now, when their faith has been tested as never before.

In November of last year, Steve and Dona sent Aaron a birthday card.  There at the bottom was their signature.  Steve signed his name.  Dona signed her name.  That’s how they always did it.

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Then in April another card came from Steve and Dona.  My dear friend, Atha, had died and I was still reeling from her unexpected death.  Dona knew how my heart was hurting, so she pushed aside her own pain and she sat down to write some very encouraging words to me and Gary.  And then as she ended her note, there it was.  The signatures.  Steve…..and Dona.  But look at Steve’s, written with his left hand when he is right handed……and written after having to learn how to write again. 

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I burst into tears when I saw it.  Dona’s words were uplifting and so sweet, but Steve’s signature is what really got me, because it showed volumes to me of where Steve was now.  What a difference from November to April!  What life changes he is having to adjust to! 

And so is Dona, who is with him every step of the way.  How her life has changed!  Steve walked out the door that Sunday morning, and their world as they knew it collapsed.  But I know they don’t really think of it that way.  They see God’s hand in it all……they trust Him completely……and they are putting into practice the rock solid faith that they have cultivated in our loving God all these years.  But it’s still hard.  It’s not without frustrations and fears and tears.

Back on May 26, 1979, Steve and Dona promised to be faithful to each other, too….for better or worse, richer or poorer, and in sickness or health.  So did Gary and I.  Steve and Dona’s promise has been put to the test, and they are passing…..with God’s grace…..with flying colors. 

Gary and I are very, very thankful that we have another year to celebrate our joint wedding anniversaries.  We are very, very thankful for the enduring friendship that we have shared with these dear friends.  We are very, very thankful for their example to us of steadfast love in the life changing hard times. 

And I’m very, very thankful for Steve’s signature that is so telling on many levels.  It tells of sadness, of strength, of progress, and of grace. 

Which means that Steve and Dona’s life really has God’s signature all over it. 

Happy Number 37, Steve and Dona!  Here’s to many more!

 

The Coupon Box

One of Aaron’s Sunday routines is to clip the coupons that are almost always in the Sunday morning newspaper.  I’ve blogged before about his coupon cutting process.  Believe me, it’s just that……a process.  A precise process that he is 100% convinced only he can do.  I, especially, have no business cutting out coupons because I am a dismal failure at that task.  Those are Aaron’s thoughts, not mine.  Aaron cuts as closely on the dotted line as he possibly can.  He then takes any little strips of paper that are left over and he clips them over a certain trash can, snipping each strip into tiny pieces and watching them fall down to join the other tiny pieces that fill the tiny snipped pieces trash can.  It’s an art.  Other odd sized pieces of left over coupon paper fill another trash can.  The finished coupon sheets of paper, full of gaps where once were coupons, are placed neatly in a stack to Aaron’s left side.  And the finished coupons are placed in precise order in the coupon box with the red lid.  It truly is fascinating to watch him cut coupons. 

Sometimes I don’t get the coupon box with the red lid emptied and sorted before the next round of coupons appear the following Sunday.  Such was the case a few weeks ago.  Aaron had completed his coupon cutting set-up in the family room.  His three cups of coffee were waiting for him on the bench beside where he sits on the floor, along with his pillow that he sits on, his scissors, his two trash cans, and the television turned to The Animal Planet.  He came to retrieve the coupon box with the red lid, opened it, and found last week’s coupons still inside.  So without further ado, he promptly dumped the week old coupons onto the table and turned to walk into the family room and complete his coupon cutting mission.

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“Wait,” I said.  “Can’t you still keep the old coupons in the box?”

“No,” he simply answered. 

“Because you can’t mix them up, right?” I asked, knowing full well the answer.

“Yeah,” he again simply answered as he sat on his pillow and started his mission.

Yeah is right.  Aaron can’t stand to mix the old coupons with the new coupons.  He does it on occasion, but not often.  So he clipped that day’s coupons and later I found the coupon box with the red lid on the kitchen table…..every coupon placed in just the right place and in the right order.  Aaron’s way, which to him is the only right way.

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Aaron’s life, and living with Aaron, is so much like his coupon clipping process.  He wants everything in its place…….the details of his life in a certain order.  This goes here…..that goes there…..and if I’m done with it or it’s old or messed up, out of place or frustrating, I just dump it and we start over.  Neat and tidy, with Aaron in control of the set-up and the tools and the timing and the process.  Except life’s not like that, not for Aaron and not for any of us.  You and I can adapt to these changes for the most part pretty easily, but not so Aaron.  Even the simplest change, the most minute little snag in an otherwise orderly process, can easily put Aaron over the edge.

Gary and I just returned from a short trip to Topeka, where we watched Andrew work on his NHRA race team.  Aaron knew that his two caregivers were coming to take care of him.  He was excited for us to leave, as he always is, because our leaving means more eating out and more movies and hopefully less bossiness from those in charge and more of him pulling the wool over unsuspecting eyes…..so he hopes. 

“I can’t wait for you to leave!” he said on Thursday as I was getting ready to go.  “NO parents!!” he added as he rubbed his hands together and laughed loudly.  He is at least very honest.

“What time are you leaving?” he asked, though he had been told how many times before? 

“We’re leaving at 3:00,” I answered.

“Can’t you leave early?” he asked.  “Like 2:59?”

He was completely serious about that.  So I smiled when I hugged him goodbye later, and told him that it was 2:52.  He just nodded his head and went on his way, and I stifled my laughter until Gary and I drove down the road.

Aaron calls repeatedly while Gary and I are away from home.  Every day, several times a day, he calls.  So much for his “NO parents!” comment!   Therefore, it was no surprise on Monday morning when he called, and also no surprise to me that he was most unhappy.  After his busy weekend, and after NO parents, he was ready to settle into his normal……but not ready to go to his day group.  He wanted to stay at home, which is common for him, and he wanted to be there when we arrived.  I always question what to do in that case.  Let him just stay home…..but is that giving in?  Make him go…..and maybe pay the consequences of that decision.  Mainly, his caregiver and day group have to pay the price of Aaron’s grouchiness.

As Aaron and I talked on the phone and he finally agreed, unhappily, to go to Paradigm, he asked me if I would pick him up early at the end of the day.  I said that I would. 

“Mom!” he said.  “I mean to pick me up before 4:00.  I want you to pick me up at 3:59!”

Again, he was entirely serious.  “3:59?” I asked him.

“Yes!” he answered.  “Don’t wait until 4:00!  Will you pick me up at 3:59?” 

So I agreed to pick him up at 3:59 and he went reluctantly to Paradigm.  However, he had a miserable day.  The other clients had a miserable day.  The staff had a miserable day.  Thankfully they are so understanding and forgiving.

It was around 1:30 when my phone rang.  I heard Aaron on the other end, voice thick with tears.  I’ve lived this scene so many times that I didn’t even need to hear what Aaron had to say. 

“Mom,” he started……and I just told him that I was coming to get him. 

“No!” he said strongly.  “I want you to come at 3:59!!”

“But Aaron,” I countered.  “You’re very upset now so let me come and pick you up.”

“No!!” he forcefully repeated.  “I want you to come at 3:59!!”

He handed the phone to Barb, and she said that he was very firm about me coming at 3:59, but then for some reason he changed his mind and said that I could come on to get him. 

A short time later, he and I sat in Freddy’s.  I figured a Freddy’s burger and fries would be the best medicine for him.  He was relaxed and very happy as he ate his burger, but his eyes were still red and bleary from all the tears.  As I asked him why he was so upset that day, he couldn’t tell me why.  I kind of know why, but he really has a very hard time verbalizing outwardly what goes on inwardly in his mind and emotions.

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So many diseases or syndromes show up in a person’s bloodwork when it’s tested, but what Aaron is missing doesn’t show up firmly in lab work or on a piece of paper.  The connections in our brains that allow us to process and filter our environment, and our responses to life’s occurrences in our environment, are missing in Aaron’s brain.  He cannot just simply deal with issues like I can.  So he reacts, often in great frustration, and getting to the root of that frustration and his reaction to it is what we continually try to do. 

However, we are often very frustrated ourselves……frustrated by Aaron’s behaviors and his reactions and all that goes along with it……that it’s hard to pause, take a breath, and try to figure it out ourselves before we can even begin to help Aaron figure it out.  Add to that our embarrassment at times……our tiredness…….our feelings of failure or ineptness…..and it’s like my box of coupons.

I just want to dump the whole thing and start over!!

Start over with an empty box……new coupons…..all in precise order!

But life’s not like my coupon box with the red lid.  I can’t just dump days or events out on the table, and arrange the new day the way I want.  And neither can Aaron.

But we can start each day with a clean slate, and try again.  We can build on the old experiences and the lessons they taught us.  Clipping here……cutting there…..arranging our thoughts and our responses in the right way.  We do it through prayer, through seeking God’s wisdom, and through loving each other through not only the good, but also the bad and the ugly.  And we have plenty of those last two, believe me. 

And through always keeping in mind that Aaron’s most impacting special need is the one we can’t see in that amazing brain of his.  We don’t understand how he thinks at times, or how he acts, but we do understand that he really wants to do better and that the frustrations for him are far greater than any that we as his parents and caregivers will ever feel.    

There’s one more thing about starting each day anew.  God has promised that His mercies are new every morning.  They’re not based on yesterday and on yesterday’s failures.  His mercies are new and fresh every morning, as is His longsuffering and forgiveness and kindness.

Can I be any less for Aaron? 

I don’t think so.  And I can put that promise on the very top of my daily coupon box.

Who Are These Special Moms?

As the mother of a son with special needs, I have often had people tell me that they think God gives special children to special moms.  While I realize that this sentiment is meant to be encouraging and kind, I also must say that I think it’s misguided.  A big reason I think this is because I know me.  I know me better than anyone else knows me, except God.  I know that I’m no more special than any other mom out there.  This isn’t fake humility, either.  It’s just the truth.

All moms need God’s grace for each day.  We who are His children need His grace for our own children in so many different ways.  How amazing is God’s grace, too!  He promises this undeserved favor to us over and over, greater grace for greater needs, along with His mercies that are new every morning.  He has all that I need.  He has all that any mom needs.  I asked God many times to give me grace for the challenges that I faced as a mom to all three of our children.

Having said all this, let me also say that I have a great respect for the moms that I know who are walking this life alongside their child or children with special needs.  My heart goes out to them, ones I know and ones I don’t know, as they face demands that they never dreamed they would encounter as a mother.

So as Mother’s Day approaches, and we see the beautiful cards…….heart tugging commercials…….perfect mother and children photos…….and all the lovely images of motherhood through the years – let me give a “special” shout-out to all the “special” moms of special children.

Those dear Moms:

  • Who spend hours researching your child’s diagnosis rather than hours researching what sport for him to play.
  • Who pray for your child’s teacher to be understanding of meltdowns, bluntness, and a zillion other things that have nothing to do with her grasping of educational facts, and yet have everything to do with her ability to learn.
  • Who dread with a passion those IEP meetings.
  • Who dread having to once again explain your child in every new setting.
  • Who dread high school graduation because……then what?
  • Who try to ignore the stares from others in public places instead of basking in admiring glances.
  • Who are learning how to use your child’s feeding tube rather than planning his fun pizza party.
  • Who are searching for the best wheelchair rather than the best bicycle.
  • Who watch their child being marked for radiation rather than getting a cool tattoo.
  • Who are shopping with their daughter for a wig to cover her bald head due to chemo instead of shopping for the perfect new hair products.
  • Who are driving their older child everywhere because he can’t have a driver’s license due to seizures or other medical issues.
  • Who hurt because their child doesn’t have many, or any, friends.
  • Who are signing guardianship papers instead of college admittance papers.
  • Who are scouring the internet for the latest medical treatments instead of scouring for the best college scholarships.
  • Who know more drug names and side effects than they ever wanted to know.
  • Who spend far more time finding caregivers than finding cool vacation spots.
  • Who are adept at rearranging schedules due to unexpected medical issues.
  • Who lay in bed at night with the sound of your husband sleeping on one side, and your adult child breathing heavily in the baby monitor on the other side as you listen for seizures.
  • Who read your adult child the same book every single night of his life.
  • Who keep waterproof mattress pads on your child’s bed – your adult child.
  • Who have a hard time finishing a conversation with your husband without being interrupted over and over.
  • And who, for some, will find themselves looking at a gravestone on Mother’s Day instead of looking into the eyes of their child.

 

So to all of you amazing mothers of special needs children, I give you a huge high five!!  I hope you know that you are loved and that God does have special grace for you every day.

And may you, as my friend Atha would say, be established in your purpose……this God-given purpose……of raising one of His very special children.

 

 

 

Lessons From the New Roof

When we moved into this house, it had a shake roof. An old shake roof, weathered and beaten. At least it looked weathered and beaten, but it passed the house inspection. Gary kept a close eye on it for the following years, especially after every hail storm. He patched a place here and a spot there. The roof held, though, so we were thankful for that and went on with life under our shake roof.

One day, though, we saw an ugly spot on our bedroom ceiling. It was a water mark, without doubt, so we had no doubt that our shake roof finally had succumbed to the latest hail or wind storm and needed to be replaced. The insurance adjustor came out and looked everything over, including the water mark on our ceiling. However, he said that the roof generally looked fine so he would recommend that the insurance pay to repair some individual spots that needed new shake shingles. We were disappointed, but what could we do except leave the decision in the hands of our insurance company.

On a Saturday morning as Gary and I worked outside, the phone rang and so Gary stood in the garage talking. I could tell that it was our insurance company, and I could also tell that Gary was happy about whatever it was they were saying. He hung up and told me the good news. Our insurance company had decided to just replace our entire roof! And not only to replace it, but their policy was to give the owner the price it would cost to replace the roof with the same kind of roof. Now a shake roof is expensive. Gary and I had decided that we wanted, someday, a composite roof, for many reasons other than price. Gary told our insurance man that we weren’t getting a shake roof, but he said it didn’t matter. Policy was policy, so we were given more money than we needed for our new composite roof. Wow! The extra money went toward a much needed bathroom remodel. We were so thankful for this extra blessing! We got a new roof and a new bathroom to boot!

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I’ve been slowly reading through the book of Nehemiah. This morning as I started the last chapter of this wonderful book, a phrase just jumped out at me. The people of Israel were reading aloud to the assembly from the book of Moses. They were reminded of how the Ammonites and Moabites, many years ago when the Israelites were in the wilderness, had treated God’s people so badly. In fact, the king of Moab had paid their prophet Balaam to speak a curse against the Israelites. Perhaps the best known part of this story is about Balaam’s donkey, whom God spoke through to Balaam. It’s an interesting and funny story from Numbers 22. But what was so meaningful to me today was that little phrase in Nehemiah 13, at the end of verse 2, as the people were reminded of the story of Balaam.

HOWEVER, OUR GOD TURNED THE CURSE INTO A BLESSING.”

What a precious reminder these few words were to me today! So many times we have things happen to us that seem to be a curse, in a sense. Hard things……difficult to understand on many levels. Things out of our control, like the hail and the wind that beat on our old roof. And even when we might see some reason or make some sense of it, the answers still don’t fully come. We may get a small amount of partial relief here and there, but not really be able to escape the pain and the mess that we find ourselves confronting.

Paul reminded us that “all things work together for good,” though. He didn’t say that good things happen all the time. They don’t. But whatever does happen to us as believers is under the sovereign allowance of God, and we can be sure that it WILL all work together for good. We may not even see the good this side of heaven, or feel like any of it is working out for good at all. But God has His policies, so to speak……just like our insurance company. And His policies are clearly stated: He WILL turn a curse into a blessing!! He WILL work all the things in our lives out for GOOD!!

Someday, even if it’s not until heaven, we WILL be able to look at all the stuff that has happened in our lives and then voice that big “HOWEVER!”

HOWEVER, OUR GOD TURNED THE CURSE INTO A BLESSING!

Don’t lose hope! Don’t lose focus!

God comes through on our side, for our good, every single time!!