Category: Epilepsy

The Answered Prayer

When Gary and I travel without Aaron, we must find a caregiver for him.  Plus we have Jackson, our 185 pound Great Dane.  We’ve had some wonderful caregivers over the years for both of them, but of course Aaron is our main concern.  Those that have cared for Aaron usually move on to their very busy college lives, their full time jobs after college, or to marriage with families of their own, so keeping caregivers is no easy task. 

A couple weeks ago, Gary mentioned that he sure wished it was easier for us to just pick up and go visit our other two children.  Andrea lives in Houston and Andrew lives near Indianapolis.  I realized that I hadn’t been making our caregiver issue a matter of prayer lately, so on that evening that Gary made his comment, I began praying about it again.  There are times that we can, and do, take Aaron on our trips.  But there are other occasions when it’s best for just Gary and me to go. 

The day after Gary made his comment, and I started praying, I shared my prayer concern with a friend in Texas.  I also shared it with Andrea on the phone that evening as she and I talked.  While Andrea and I were on the phone, I heard my text message notice buzzing in my ear.  I waited until Andrea and I were off the phone before checking my message.  I pretty well stared down at it in disbelief and praise.  You see, it was from our friend, Holly.  Holly watched Aaron some last spring.  She’s an excellent caregiver, but I thought that she was too busy with college and work to be able to watch Aaron anymore.  I hadn’t contacted her at all, or even said anything to her mother who is a good friend of mine.  So what did her text say?

She said that she just wanted me to know that if Gary and I ever wanted to get away, and if we needed someone to watch Aaron, that she would be glad to do that.  Wow!  I just stood there and thanked God for that very quick answer to my prayer.  It was such a direct, almost immediate answer to my prayer that it left me humbled and amazed.  Gary and I both recognized God’s hand.  So now what were we to do?

Andrew works for an NHRA race team.  They were having a race in less than two weeks in Dallas.  Last year we went to Houston to see Andrea, and then she went with us up to Dallas for the last day of racing.  Was God wanting us to do that again?  Would it even work out?  We checked with Andrea and she was excited at the prospect of us coming.  Andrew was as well, so we lined everything up with Holly and off we went to Texas.  God had answered and provided, and we felt confident that this trip was for a purpose.

That’s when things started happening.  Maybe I should make a list.

·         Holly lost her phone on the morning that we left and had to get a replacement.

·         Andrea hasn’t quite recovered from double pneumonia that she had in July.  She started feeling bad again just before we came, so she ended up not going to Dallas with us on Sunday.

·         On Friday night, Holly got a stomach virus.  She threw up seven times that night!  And she was trying to take care of Aaron.

·         On Saturday, Holly let her grandparents watch Aaron so that she could rest and recover.  Dennis and Freda are friends who know Aaron, and they did a great job. 

·         Holly did recover, but on Sunday Aaron had a seizure.  Holly knows seizures well because of her little brother who has seizures, but we felt terrible that she was having to go through this.

·         Gary and I went on to Dallas on Sunday, talking to Holly regularly and checking on Aaron.

·         Andrew’s driver, Cruz Pedregon, lost during the first run…..3.96 to 3.94.  That meant that the team would be cleaning and packing up to leave for Indy early Monday morning…..which meant that we wouldn’t really get to spend any time with Andrew.  So we decided to just head back to Wichita, feeling the need to check on Aaron anyway.

·         We ran into a huge traffic jam south of Ardmore, Oklahoma.  It put us an hour behind. 

·         My phone mysteriously died for a few hours.

·         And I even found a lone fire ant bite on my foot….a souvenir from Houston!  HA!

OK, now I know that none of these events are life changing, horrible things.  Why am I even writing about this?

I’m writing about it because the craziness of our weekend…..the stress that these happenings created for us….didn’t seem to match our amazing answer to prayer.  That answered prayer….the prayer for a caregiver….was the reason that we took this trip.  So if God provided answered prayer and the means for us to take this trip, why did so many things seem to fall apart?  Shouldn’t we have gone to Texas and just had the best time ever, with no worries?

I admit that I was scratching my head a few times, wondering why God seemed to push us out the door.  “Go, go!” he seemed to be saying.  And then to have so many things go wrong…..things that caused us some worry and kept our minds occupied on those worries to some degree. 

I have felt like God was trying to show me another element of trust.  I know I need to trust Him when He opens doors, but then allows some bad things to happen that make me question whether the open door was one through which I should have walked.  I needed to trust that God knew what He was doing when He led me to that open door.  God also knew what He was doing when He let so many things go haywire when we needed them to go smoothly.  Or we thought we needed them to go smoothly.

Answered prayer in the way that we want it doesn’t guarantee a trouble free life.  I may never know why God wanted Gary and me to take this trip.  I may never see all the connected dots that God sees….for me, for Gary, for Andrea, for Andrew, for Holly, for Aaron.

There were wonderful memories made.  Time with Andrea:
 

 

Time with our little granddogs:

 

 
 
Time with Andrew, though brief:
 

 

We had precious talks and laughter with Andrea.  We got to see the pit crew at the race form a circle and pray together right there in the pit area….and have Andrew tell us that he and Jay got that practice started.

And we had to laugh at Aaron as he tried to adjust to Holly being sick.  “Mom!” he exclaimed.  “I didn’t expect you to have someone here who is SICK!!” 

Let’s talk about the word “compassion,” dear Aaron.  He did go to Holly’s room three times on Saturday to say goodnight, and on the third time, instead of calling her crazy, he gave her a hug.  Very sweet!

Will I pray specifically again?  Absolutely!  God loves our specific prayers.  Next time though, when He answers, I might just say, “OK, God, are you 100% sure of this?!”  J 

 

A Special Vacation With Aaron

Last week Gary and I took Aaron with us on a vacation/work trip back home to our families in both West Virginia and North Carolina.  It had been way too long since Aaron had been home with us, so it was nice to have this opportunity to take him along.  One purpose of our trip was to meet with my brother and sisters in West Virginia, and to go through all the items that were left in our mother’s storage unit since her death in May.  Then we went down to Gary’s hometown in the North Carolina Smoky Mountains.  We hadn’t been there in ages, so we spent more time there than in West Virginia on this trip.

Aaron is really a good traveler, which is surprising in some ways since he loves his routine and loves his things in order.  But he also loves time with us, and he loves the snack bag that I fill before we leave, and he loves the motel, and he definitely loves eating out.  He makes sure that he nails down the fact that we ARE eating out as we hit the road bright and early on the day we leave.  When that fact is established to his liking, he then seeks to determine if we’re eating IN a restaurant.

We usually stop at this particular rest area in Kansas City, which overlooks both the Chiefs and the Royals stadiums.  Aaron was only slightly impressed with that, pausing long enough for me to take the first obligatory picture of our trip…..the first of many that he tolerated as we vacationed together.

 

He was far more impressed with the Cracker Barrel where we ate a midday meal later that first day.  He loved the stuffed turkey that he and Gary found in the gift shop, and couldn’t wait for me to press the turkey’s wing.  Aaron rubbed his hands together in delight as the turkey sang, “Hey, good lookin’, what you got cookin’?  How about cookin’ something else but me?”  We heard Aaron sing that song several times that day.  And he also played the peg game while we waited on our meal, beating Gary on his first try!

 

Our server there was so kind to Aaron, smiling at him with understanding and even bringing Aaron his very own travel map.  Several servers on this trip were that way with Aaron…..showing kindness and even delight on the unique way that Aaron interacted with them.

 

Aaron quickly set up house at John and Jeanie’s when we arrived in Princeton.  We had barely said hello before he was deciding where he would perch himself and his DVD player, looking for an outlet and not at all concerned about rearranging furniture or grabbing a chair on which to place his DVD player in front of him.  He did the same thing at his Aunt Sandra’s when we got to Bryson City on Tuesday.  Never mind unimportant hugs or pleasantries.  The most necessary business was to get himself situated and comfortable.  Hellos and hugs and small talk was for the rest of us, after we helped him line up his little corner of the world just right. 

 

Aaron really did very well in so many ways on this trip.  Of course, he had times of frustration when he didn’t want to go somewhere that we went…..or he wanted to be on my tablet looking up GI Joe videos instead of going to see friends….or he was a little tired of seeing too much pretty scenery.  We had to work a few times to try to derail him from the track of frustration that he was on for the moment without becoming totally frustrated ourselves.  Then there were his loud noises which were new to many in the family.  He sure can make people jump! 

But there were very many moments to treasure, far more than the ones that we would rather forget.  He sat in our vehicle for over five hours while we went through Mom’s storage unit, watching Looney Tunes DVDs and making tons of crazy noises.  Like Mary Beth said, he was our sound effects while we worked.  I just wonder what the family down from us thought as they worked on their unit.  He hugged family and friends, he talked all of our ears off about aliens and other interests, he kept up a weird schedule, he slept in different beds, and he tolerated hours of driving. 

Here are more pictures of some of the things that were very special during this trip.

He found a fun bug at the West Virginia rest stop.
 

He was happy to finally be in West Virginia.

 

And happy to also go to North Carolina.

 

We had a delightful visit with Leo.

 

We ate at Naber’s……TWICE!!  Look at the view right there!

 

He sang for Aunt Sandra.

 

We went walking up Deep Creek.

 

And dad helped him find some little Deep Creek rocks……

 

while Aunt Sandra found a HUGE leaf!!

 

He was happy to go see Pam and Russ after a stubborn spell that day……

 

and pet and feed the horses in the pasture beside their house!

 

 
Those are just a few of the wonderful times we had on this special trip.  On the day we left to return to Kansas, Aaron had a mild seizure while still in bed early that morning.  He had another big seizure in the car on the interstate, and a larger one that night in the hotel.  He thankfully had just gotten out of the shower before that last seizure, and was sitting up in bed reading.  He hit his head really hard on the headboard as the seizure jerked him backwards, and then on the nightstand as it threw him sideways, but thankfully he was fine.  God was good to protect him, and to let him have a full week of fun and family before that seizure hit. 

It was a reminder of how fragile he really is in some ways, physically, and of how tough he is as he rebounds despite a sore head and a bitten tongue and not being able to taste food the next morning.  It jerks Gary and I back to reality, but also causes us to be thankful for every good day and special memory during our family trip. 

It may not always be easy to have Aaron come along, but it’s always worthwhile to have him along with us…..not just on this trip, but along this journey of life together with our special son. 

 

 

 

 

 

 

 

 

 

 

Day One……Day Two…..Day Three…..

When Aaron was hospitalized in June, the biggest concern that his doctors had was his very low sodium count.  We knew he also had something else going on because of his high fever.  His pneumonia didn’t show on X-rays for a couple days, but the sodium was a huge problem because it can affect the heart.  There are at least three reasons why his sodium may have dipped so low.  It could be one of his seizure drugs that he’s been taking for years; it may be a syndrome related to the pituitary gland; or it could be that Aaron drinks too much water.  Too many fluids can wash sodium and other nutrients out of the body at too great a rate.

Dr. Broberg, Aaron’s family practice doctor at McConnell Air Force Base, has been seeing Aaron since his hospital stay.  He recently checked Aaron’s sodium levels again, twice, and found that they are once more going down to an unacceptable level.  Therefore, he wants us to limit Aaron’s fluid intake to about a liter and a half a day.  Now, this sounds like Aaron can still drink a lot but when you consider coffee in the mornings and even the water he drinks with his pills twice a day, there isn’t a whole lot left over for Aaron to just casually drink during the rest of the day.  At least it’s not a lot for Aaron, who does love his water.

Aaron usually has three cups of coffee in the morning.  They’re not always full cups, but still there are three cups.  Aaron’s a creature of routine, remember, so if he has had three cups of coffee in the past then he wants three cups of coffee in the present.  Three.  Not two.  And definitely not one. 

Aaron also has two water bottles that he keeps in the frig.  Each bottle holds 23.6 ounces.  I know that now, because I had to calculate his intake on Thursday, our first full day of our new routine.  Aaron loves taking those two water bottles to his room and drinking the water while he watches a movie or plays a game.  Two.  Not one.  Definitely not one.

Day Number One: On Thursday morning, I began calculating ounces of fluid before Aaron got out of bed.  I decided to give him 10 ounces of coffee, which isn’t much.  So I split it between two coffee cups.  It really didn’t look like much at that point as I stared down at the halfway filled cups.  Well, maybe Aaron wouldn’t notice, I thought.  Silly me. Then I allowed him 5 ounces of water to drink with his pills, and that would be his morning allowance. 

I didn’t phrase it that way with Aaron.  In fact, I didn’t say anything about restrictions or allowances when Aaron plodded into the kitchen that morning.  I just poured his coffee as he stared at the empty carafe when I was finished.  I poured his pill water, which he usually does, as he continued to stare.  He was doing his own calculations, I just knew it, and it didn’t have anything to do with wanting to comply with doctor’s orders.  It had everything to do with restrictions, even though I didn’t say that ugly word.  It had everything to do with his routine, as well.

I tried to be as normal as possible and as happy as could be without being weird, as Aaron would call me if he sensed that I was being fake.  Finally, he said something about only two cups of coffee.  Oh boy. 

“Remember that you need to be careful about how much you drink?” I reminded him.  “And isn’t it great that you can still have coffee?  Some people can’t drink coffee at ALL!” 

He was pondering that dismal outlook as I left his room, where I had put his two cups beside his desk……in the place where there are usually three cups.  Two cups.  Not three.

The rest of the morning was without incident.  I let our Great Dane ride with us as I took Aaron to Paradigm.  Aaron loves that and I wanted Aaron to love as much as he could on this day of the beginning of restrictions.  Aaron was happy for me to run into Paradigm and discuss the fluid situation with Barb, telling her of the need to monitor Aaron’s intake.  She saw the difficulty in this prospect for Aaron, though she didn’t say a lot about that element.  The looks between us spoke volumes. 

When Aaron got home that day, he told me that he didn’t drink anything while at Paradigm.  I told him that he didn’t have to go without water all day.  He took that to heart as he later reached into the refrigerator for his two water bottles, which I should have replaced with smaller bottles earlier.  As he started to take the two bottles, I told him to take one bottle instead.  One.  Not two.

Furthermore, I told him to drink half of the bottle now and then save the other half until later.  Surprisingly, he agreed.  He was fine for the remainder of the evening, even joking about drinking his other water bottle but not touching it at all.  So far, so good.

Day Number Two:  I felt confident on Friday since Aaron had done so well the day before.  He was handling this restrictive life better than expected.  Yet I knew, too, that his attitude could quickly change.  This was confirmed when Aaron came downstairs after he got out of bed.  He sat across from me at the kitchen table, still sleepy and unsmiling despite my chipper, “Good morning, Aaron!”

“I’m just beginning to hate that doctor,” he said without emotion.  “I want my two bottles of water.”

Well, he laid it out on the table first thing.  Now to deal with it.  God said to ask for wisdom when we need it, so I did.  Not out loud.  Aaron would have thought I was weird.

“Do I have a doctor appointment?” he asked.  He was wondering about the next week.  I told him that he did have a doctor visit scheduled. 

“Is it that SODIUM doctor?” he asked with emphasis.  I told him that it was not Dr. Broberg, careful to use his name, but was with his seizure doctor.  I gently tried to clear Dr. Broberg of all sodium charges, explaining Aaron’s situation and history, but of course this all meant little to Aaron.  He was simply dreading another long day of drinking only one water bottle.  One.  Not two.

He watched me as I got up from the table and starting getting out his coffee cups.  “Can I have three cups of coffee?” he asked.  “Those two went by fast!” he added.

Oh Aaron, you do make me smile even in the midst of your frustration.  So I did give him three cups of coffee, which exceeded my desired liquid limit for him…..but the cups were only about half full.  He noticed this, of course, and I reminded him that he often has half full cups of coffee since he is often shaky.  He accepted that explanation, and I carried his half full cups of coffee up to his room, where I set them in their usual place.  Three cups.  Not two.  Aaron was moderately happy, but still suspicious.
 

Later, as I was drying my hair, Aaron strode in the bathroom.  He had a smile, and now it was my turn to be suspicious.  My instincts were correct.

“Mom!” he said with excitement.  “I drank my TWO bottles of water!”

“You didn’t,” I responded.

“Yes, I did!” he replied.  “But I drank half and then half and then half.”

I just stood there.  I wanted to laugh and I wanted to lecture, but I was truly relishing his method.  He remembered that I had instructed him the day before to drink half of his water bottle.  So on this morning, he decided that referencing those “halves” would soften the blow of his disobedience.  Pretty clever, actually.  I wanted to tell him that for two water bottles, he really should have added another half to his list.  But I decided that this wasn’t the time for a math lesson.

Sure enough, in his room stood his two water bottles.  Totally empty.  Two.  Not one.  And not one half.
 

Sigh. 

Today I replaced his 23.6 ounce water bottles with an 8 ounce bottle.  Such a little bitty bottle compared to the others!  You should have seen his face when I showed it to him!  Half amusement and half surprise and half disgust.  I guess that’s one too many halves for just one bottle.  One.  Not two.

 
Dr. Broberg had no idea of the complications this fluid restriction would cause in Aaron’s life, and therefore ours as well.  How could he?  Living with autism is complex enough on a “normal” day.  Throw in restrictions and changes and routine disruptions, and you have a mess on your hands. 

Day Number Three:  Today is Saturday and Aaron is happy.  We hope that this happiness lasts.  He does have three cups of coffee, partially full.  Three.  Not two.  He has one little water bottle.  One.  Not two. 

And I do have hope that we can make this work.  I have hope on this day three.  I did not have much hope on day two.  Let’s pray that we can look back on this day three and see it as a successful day.  Then I will want more days like this one.

Day three.  Not day two.

 

What Happened to Happy?

It’s very interesting, as we live this life with Aaron, how we see all the ups and downs that go along with autism and Epilepsy and developmental delays.  We not only see the ups and downs, but we deeply experience their effects on him personally and on us as well.  Certainly anything that affects Aaron impacts Gary and I, too, and what a ride it can be!

Aaron really wants to enjoy happiness, but he wants it on his terms.  Sometimes that’s just not possible.  There are occasions where Gary and I walk a fine line as we attempt to provide a happy environment for Aaron without giving in to his every whim.  It’s like being on a boat.  We can be trolling along, happy and peaceful, and then all of a sudden we run upon choppy seas that threaten to overturn us.  Some days we can see the storm coming with Aaron as we read his mood.  Other days the storm swirls in out of the blue, unexpected, catching us off guard and then demanding all of our skills that we hoped we’ve learned over the years of parenting Aaron. 

This past Sunday night, Aaron and I were in the kitchen after playing Skip-Bo.  He was thinking of the next day as he said, “Mom, tomorrow’s Paradigm.  Let’s not let me go!”

I laughed at the funny way he phrased his comment, and then he laughed, and all was well.  The next day he was more adamant about not wanting to go.  Aaron loves Paradigm, but his dream life would be to stay home every day playing on the computer or watching movies.  That’s not going to happen and he knows it, but he still tries to test those waters.  He did go to Paradigm, but he did slam the van door and so I prayed as I drove away that somehow he would have a good day.  Barb said he was VERY grouchy when he came in but then settled down and had a really great day.  Yay!  Not yay for VERY grouchy, but yay that the rest of the day was great. 

Aaron pushed my buttons when he got home, blaming me for ruining his dream life and other ills as well.  Supper didn’t suit him, so Gary and I actually enjoyed a nice meal alone with uninterrupted conversation.  May as well see the silver lining in the cloud.

Later, Aaron and I had a talk, where I got firm and Aaron saw the light.  He was nice the rest of the evening…..almost.  Then came bedtime.  Why do so many things happen at bedtime?!  For instance, a couple weeks ago it was time for bed and Aaron knew it was time for bed.  If anyone knows anything about time, it’s Aaron!  But he was watching a movie, not wanting to quit until he was at some magic point, and so I did all the bedtime chores I do for him….and still he sat at his desk, engrossed in the movie. 

So I said goodnight, with some aggravation in my voice, and went to my bedroom.  I locked the door because I figured I would be followed.  Sure enough, I soon heard Aaron’s heavy steps coming up the hall.  He knocked loudly on the bedroom door and then said, “Mom!  I want to say goodnight in my room!”  You see, I hadn’t said our goodnights in the proper Aaron way.  I sighed and opened the door, where Aaron repeated what he had said about saying goodnight in his room.

“Come on!” he commanded as he walked briskly up the hall toward his room, before I could object.  But I did.  “Aaron,” I protested.  “I already said goodnight.”

“But you weren’t happy,” he explained.  How perceptive, I thought.  So, very tired and just wanting sleep, I followed him to his room.  He went into his room, turned toward me, and reached out for a hug.  I complied with an obligatory hug, not a heartfelt one.  I was still aggravated….and Aaron knew it.  I even said goodnight, but Aaron stared hard at me and then said, “You’re still not happy!”

So out went his arms again and this time I had to smile, more inside than out, as I gave him another hug.  I tried to make this hug more sincere, and I even did smile an outside smile as he stared at me again.

“Are you happy?” he cautiously asked.  And I assured him that I was happy, so that he would be happy, and I finally was released to go to bed…..at last!  His insistence on going to bed happy really was the right thing to do, much as I didn’t want to participate at that point, and his perceptions were also pretty amazing. 

Back to Monday night.  On Monday night I found myself wishing with all my might that Aaron wanted to be happy.  You see, Gary and I are getting ready to paint Aaron’s bedroom.  Gary has patched Aaron’s walls, but on Monday night Aaron wanted to show Gary a huge mark on his otherwise repaired wall.  Gary was shocked to see the mark.  We both think that Aaron made that mark on Monday morning when he was mad at me, but Aaron wouldn’t own up to that at all.  In fact, when Gary asked Aaron when he had made the gouge in the wall, Aaron hit the roof.  Boy, did he ever react!!

Aaron accused Gary of accusing him of making the mark.  “Well,” Gary replied, “who else could have made it?”  Aaron was beyond furious.  He became livid.  Gary and I both ended up in Aaron’s room, where Aaron erupted over and over.  He was in a full meltdown, and it wasn’t pretty.  It’s actually very amazing to see the progression of his thought processes when he’s out of control like that.  I’m just thankful that we don’t see this scene very often.  He never owned up to making the mark, but he sure did fling out all sorts of insults and angry comments.  I told Gary to go on to bed, and I sat with Aaron for awhile.  He was mad at me, too, at this point.  He watched a movie for a few minutes and then commanded me to leave his room. 

What happened to happy?  It was totally gone at that point!  I went to our bedroom, where Aaron followed and barged in, yelling some more and refusing to leave.  He did finally leave and he did stay in his room.  He went to bed around 12:30.  I’m sure he wrote down the precise time in his journal. 

He went to Paradigm the next morning.  I praised him for his maturity.  When he returned home that afternoon, I could tell that he was still struggling with some anger.  Yet when Gary got home, Aaron was fine.  We had supper and a pleasant evening, which was so welcome after the awful anger of the night before.  Aaron asked me to tell Gary what I had told him about being mature, so I told Gary how mature Aaron was to go to Paradigm without a fight.  Aaron stood there rubbing his hands together as I praised him to Gary, so happy at those words…..at last!

Yesterday after supper, Gary and Aaron took a walk out in our back yard with Jackson.  I looked outside and felt warmed by the sight of the two of them walking together.  What a picture of reconciliation!  The restoring of relationship is something we do fairly often with Aaron.  We must….because we love him and because it’s right.  All of us have these family moments and life moments where we have to come together again with those who have angered or hurt us.   Gary and I have to be the adults in these situations with Aaron.

But I guess that’s not always true, is it?  Didn’t I just tell about how Aaron came to get me when he knew I wasn’t happy?  How he insisted on being happy before we went to bed?  So I know that there are times when Aaron can and does get it right…..and I have it wrong. 

Our boat is once again sailing calmly.  He knows that tomorrow is Friday and that I’ve agreed with his request of a Papa Murphy’s pizza for supper.  Yet I know that the winds can change direction at any time, and another storm can blow upon us.  I know that I will once again, at some point, be asking what happened to happy.  Let’s pray that happy hugs are all it takes next time to bring the ship upright and make it steady again.    

Let’s hear it for happy!

And hugs!  Lots of happy hugs!

Chill Down


I pretty well knew the track we were headed down yesterday morning as soon as Aaron walked into the kitchen after he got out of bed.  Funny how that works, but I’ve lived with him for a long time.  Not only was it what he said, and the tone of voice in which he said it, but it was also his physical appearance.  He looked very tired, his eyes dull and not bright.  
“Mom,” he began.  “I just want to stay home today and chill down.”
“Uh, that would be ‘chill out,’ I almost said……but I wisely kept my mouth closed.  Aaron wasn’t happy, I could tell, and any appearance of correction when he’s in that mood never goes over well.  In fact, it usually only gives him something else on which to focus his anger.  So I remained silent, and he told me again…..in case my ears weren’t working correctly……that he wanted to remain at home and “chill down.”
I hoped that fixing his hot coffee would help.  It didn’t.
I hoped that carrying it upstairs for him would help.  It didn’t.
I hoped that some empathy from me would help.  It didn’t.
So I knew that it was time to leave Aaron to himself.  Besides, I had to shower, so I hoped that his time alone, drinking his coffee, would do the trick.  It didn’t.
I knew it didn’t help because soon Aaron was back in my room after my shower, declaring that he wasn’t going to Paradigm.  I told him that was fine, but this answer also made him angry.  He proceeded to tell me that he hated this staff and that staff at Paradigm.  Those words coming from him always disturb me, but I’m not surprised.  When angry about something, Aaron will often begin to talk about some person who has made his life miserable, in his opinion.  On this morning, it was three of the Paradigm staff.  
As Aaron talked, he told me that they wouldn’t let him sit outside and play in the leaves and sticks the way that he likes.  I tried to explain why they wouldn’t allow that, telling him about his plan of care and all the effort that went into keeping him safe.  Alone time, liability issues, and even his safety meant nothing to him at this point.  He was solely focused on how mistreated he was and how he hated those particular staff members.  
So I brought up the subject of going to a different group, which was a silly thing for me to do.  This doubled Aaron’s anger.  He may say he doesn’t want to go to Paradigm, but neither does he want to entertain even the mention of attending another day group.  Things between us at that point were definitely “chilling down,” and not in a good way.  There was a chill in the air and things were going downhill fast!
Aaron banged a few things in his room, but didn’t break anything.  And like a moth to the flame, he kept coming back into my room to talk…..or mostly to rant, which he did quite well, saying the same things over and over.  No amount of logic on my part made a bit of difference to him.  He stood in my bathroom and kicked the cabinet out of utter frustration, so I marched up the hall in an effort to gain some composure, and then stood in his room.  He knew what this meant!  He followed me swiftly, and I turned with fire in my eyes as I offered to break something of his.  He said no, and he settled down.  
But he was still on that one mental track, not reasoning at all with anything that I said.  I called Barb at Paradigm to talk about Aaron sitting outside and she explained things to me.  She said she would look at his plan of care, and Aaron had decided to go to Paradigm, so I continued trying to get ready.  I was taking my elderly friend, Nora, out to run errands after I dropped Aaron off.  I called her to tell her that I would be late.  Nora doesn’t handle “late” very well, so it took some time to get all that straight.  But Nora told me, when I informed her that Aaron might not go to Paradigm, that I should just make him go.
“Easier said than done, Nora,” I told her.  “Easier said than done.”  Nora has no idea of what it’s like to deal with Aaron.  Her words were not what I needed to hear.  If we could only make Aaron do whatever he needed to do at any given moment, how wonderful that would be!  But one does not MAKE Aaron do much of anything.  I was thinking of all this as I finished putting on my makeup.  Aaron had looked at the clock, seen that it was time to go, and had turned off his computer.  But when he came in my room, he saw that I was NOT ready to go….and off he went again.
“Mom, I’m ready!!”
“Can’t we go NOW?”
“I turned off my computer!”
“You’re taking forever, Mom!”
“Mom!  You don’t need make-up!”
“You’re taking forever!”
“Mom!  You don’t need earrings!”
“You’re taking forever!”
“You don’t need to brush your teeth!”
“See?!  You’re taking forever!”
My lungs must be in great shape from all the deep sighing.
These issues of the brain and behaviors are so very difficult on some days.  I can’t see what makes Aaron unable to process emotions, information, and logic like I do.  Why was he fine the night before and yet wakes up in this foul state of mind?  Why is it impossible for him to follow reasoning, no matter how simple it is?  I could understand a wheelchair, or being blind, or so many other special needs that Aaron could have.  But all this brain business is so very complex.  
The symbol of autism is perfect.  That puzzle piece completely describes Aaron, and us as well, as we all try to put together the pieces of the puzzle that make up Aaron’s brain…..sight unseen.  It takes lots of understanding.  It takes knowing Aaron very well.  It takes many shots in the dark, prayers in our hearts as we try to reason with him, and all the patience I can muster on some days.  
And lots of sighing.
Well, Aaron went to Paradigm and happily talked to me on the way there about the continuing story he makes up as he sits in the mulch, or in the sticks and leaves at Paradigm.  It’s a story he’s worked on for many years as he sits in his relaxing mode, like a soap opera that goes on and on for years, building as he creates it in his mind.  And it hit me!  That’s why Aaron doesn’t want the staff to bother him.  That’s why he sometimes won’t get up right away to come inside when he’s told to do so.  He can’t have his story interrupted until he’s at some point that only he knows.   Silly me!  Why didn’t I think of that?
So at Paradigm I talked to Barb and she totally understood.  She showed me Aaron’s plan of care, showing that he could have that alone time outside within certain bounds.  I talked to one of the staff that Aaron said he hated, and she was so understanding and kind.  Like Barb said, working with this population means you have to be like a duck.  You have to treat Aaron’s behaviors like water off a duck’s back.  
See how happy Aaron was as I took a picture of him with Barb and her daughter, Casady?
Barb, Aaron, and Casady
See how intent he was as he asked to clean a zucchini last night?  He wanted to help!  That’s always awesome.
 
And this morning, he not only gave Gary a big hug before Gary left for work, but I got this picture from Casady of Aaron and Natalie hugging at Paradigm.  Casady said, “Aaron’s affection game is strong today.”  Let’s hope it stays that way!
 
Did Aaron’s two small seizures last night rearrange those neurons in his brain?  Who knows?  I’m just happy that Aaron didn’t want to “chill down” again today, even though tomorrow may very well be another story.  
Aaron’s writing more than one story, that’s for sure.   And some days, I’m just trying to piece it all together. 

My Other Body

Last night Aaron came up to me and said, “Mom, the carpet in us kid’s bathroom is wet.”  I asked him why the bath mat was wet.  He answered, “Because when I finished my shower, I dried my other body.  Then my feet were wet when I stepped on the rug.”

I just smiled.  I wanted to ask him about his other body, but instead I just enjoyed the unique way that Aaron describes things and expresses himself.  And I’ve been thinking since then about how many different ways Aaron reacts to life around him.  He has many ups and many downs.  Sometimes it really is like he has various bodies.  Then Gary and I feel like we have a variety of bodies, too, in any given day as we react to how Aaron is reacting.  We do get jerked around a lot, waffling between pleasant moments and pulling-out-our-hair moments.

Last Sunday, Aaron’s week started out nicely.  He found something very special as we walked around the back yard.  Only Aaron would find a turtle virtually hidden in our thick grass, up near our patio.  I walked right past the turtle and then heard Aaron saying, “Look, MOM!!”  I turned around to see him holding the turtle, poking his finger in to where the turtle was hiding his head as I warned him that he would get bitten.  Aaron proudly held his find before he and Gary turned the turtle loose in the finger of the lake that comes onto our property.  The turtle was still for a moment and then with a dive took off into the welcome water.  Aaron was delighted, although he still was hoping he had found a turtle pet. 

 
Later that night he talked to both Andrea and Andrew on the phone.  He always has to tell Andrea about his latest movie that he’s watching, describing it in detail.  She always shows great interest whether she really is or not.  I would say she’s usually not.  Neither are we, honestly.  I have no idea how many movies it is now that Andrea is either supposed to rent to watch, or watch with Aaron when she comes home.  Aaron probably won’t forget.

He talked to Andrew about racing, which is so unusual.  There was a time when Aaron was very jealous of Andrew.  He didn’t want to see him on ESPN when we watched an NHRA race, but now Aaron really enjoys seeing Andrew.  It was fun to hear Aaron say, “Hey, Andrew, I see you on TV!”  And Andrew acted surprised by that, to which Aaron affirmed that this was true.  “Yes, I see you on TV!”  So Andrew said, “Well, maybe someday I can wave and say hi.”  Aaron’s face broke into a huge smile.  “You would do that?” he asked.  “You would wave and say hi on TV?”  Andrew assured him that if he could ever do that, he would.  “On TV?!” Aaron asked again.  It was a sweet exchange between those two brothers.  Aaron, who is the oldest, seeming again like the baby of the family in more ways than one.

On Monday, I worried that Aaron would have a hard time going to Paradigm, but he did beautifully that day…..and all week, actually.  After the huge adjustment of returning to his day group after being gone for a month while he was sick, this second week of smooth sailing was so welcome.  Even with Bryan gone this week on vacation, which meant that Aaron wouldn’t be helping work on houses, he still had no problem going every morning.  Except for a little on Friday, but more on that later.

He came home on Monday in a very good mood.  All was well and happy for our evening…..until I walked in the kitchen and saw him with a second glass of iced tea.  I let him have one glass while we watch Wheel of Fortune, but he’s famous for trying to sneak in two glasses.  I caught him in the act as he was putting the second glass to his lips, so I told him that the glass of tea was his special treat then.  I wasn’t going to fix him anything else.  And the tide turned.  The mood darkened, dramatically.  He became belligerent.  The past few happy days came cascading down into defiance from Aaron.  He hovered behind me on the computer, saying whatever mean thing he could think of without totally crossing the line.  He gave his fake sinister laugh to add some effect.  He would walk away for a minute, only to return and repeat his actions.

I finally had Aaron come into Gary’s study and sit on the floor.  Gary and I talked and talked to him, not seeming to really make any headway at all.  It was just amazing to see how his thought processes just don’t process at all like ours do.  He wasn’t connecting the dots in any way like we do.  It was just another lesson in frustration for Gary and me.  Another evidence of Aaron’s different bodies, if you will.  How quickly he can go from joy to anger, and how tremendously hard it is to reason with him.   

Sometimes our bodies are tired, as are our spirits, and such was the case Monday night for Gary and for me.  I’m thankful to have Gary by my side.  He fills in many gaps for me, and I do for him as well.  We’re a team…..a tired team on occasion.  Finally that night, things calmed down and all was well when Aaron went to bed.  We can only pray that something we said stuck in that brain of his.  We know we have to keep trying.

Aaron had times of showing compassion this week, which always makes us very happy because typically Aaron is all about Aaron.  He told us that he gave one of his bean burritos to Jennifer, his friend at his day group.  And he gave her his water, according to him.  He wanted to take some zucchini from our garden to Barb, which he did.  He’s been known to sneak produce out of the house in one of his deep pockets, but this time he did it with my permission.  He does sometimes love to share. 

When we talked to Andrea later in the week, he was very concerned to find out that she was sick.  She ended up having pneumonia in both lungs!  He wanted to talk to her, but I resisted because I knew she really didn’t feel like it.  But Aaron asked her right away if he gave her his sickness when we visited her in Houston, and he showed real concern for her.  That was sweet to see. 

On Friday morning, I had to go to the air base for some routine blood work for my yearly physical.  I left early, but the lab was busy and so it took me longer to get home than I had planned.  I knew when Aaron called me, sounding very down and sluggish, that we were in trouble.  It was confirmed when he said he didn’t want to go to Paradigm.  I got home to find an angry Aaron, but a dressed Aaron.  You see, his routine was all messed up because I hadn’t been at the house.  He slept a little later than usual, had to get his own coffee, and was just generally unhappy about the whole state of affairs.  But of all things, miracles happen, and Aaron ended up going to his day group willingly.  Another crisis avoided! 

Then came seizures on Friday night/Saturday morning.  Just three seizures and not as severe as they sometimes are, but still sad to see.  Aaron’s body gets jerked around physically, that’s for sure.  He slept later than usual yesterday morning, but woke up fully functional.  That was a relief!  Yet he was grouchy because of the seizures and not feeling well, so I had to tread lightly for awhile.  Just another example of the many bodies of Aaron.

He made me laugh this week, as he often does……some days more than others.  One morning I told him it was time to leave, but he told me to wait a minute.  I repeated that we needed to go and he told me again that he was almost done…..just wait a minute.  I looked in his room and found him, of course, watching the movie credits from the movie he just finished.  He was rubbing his hands together, a sign of delight, and as always I laughed.  The credits cannot be interrupted, so I waited until he was down to the very last word and then he happily turned the DVD off and away we went. 

 
Then today, as we watched racing and he tried to catch a glimpse of Andrew, he ended up sitting like this.

 

Yes, that’s our cushioned ottoman lid on his head.  Good balance, don’t you think?

But perhaps the sweetest thing was when we sat down for lunch today.  He said he would pray, which he doesn’t often like to do.  He almost always says two phrases when he prays.  The phrases may vary, but there are almost always just two.  Short and sweet.  So we held hands and Aaron said, “Lord, thank you for this food.”  He paused, then continued.

“Please help me feel…..I mean, help ANDREA feel better.  Amen.”

That was his sweet body……and a sweet moment to cherish. 

Home From the Hospital

Friday, June 19, marked a full week that Aaron had been in the hospital for low sodium and pneumonia.  He was feeling better that morning.  He still had a wicked cough, but his fever had been gone for over 36 hours and he was generally feeling much better.  In fact, the better he felt the grouchier he became.  As he felt better, he missed home more.  He missed his life and his routine.  He was more alert and aware of how abnormal this hospital life was for him.  So the better that Aaron felt, the harder he made life for those who were caring for him.  All he could talk about that morning was going home.  He didn’t like anything that anyone tried to do for him, including me.  He tolerated his chest X-Ray, his pills, and his other morning interruptions…..barely.

I saw his doctor in the hall and told her that she better put on her very thick skin when she came to see Aaron that morning.  She just laughed, and I told her I wasn’t kidding.  Aaron was grouchy, in all caps.  GROUCHY!!  And wanting one thing…..home!  So later she came in with a huge smile, and of course Aaron told her immediately that he wanted to go home.  She told him that she had good news for him, then, because home is where she said he could go.  Then he smiled along with her, for the first time that morning, and life was good again. 

Of course, when one of the aids came in a few minutes later, Aaron looked at her and said, “I don’t need you now!”  And I made him apologize, even as she just laughed and knew that Aaron was very happy to be leaving.  He just had a very blunt way of letting that fact be known.  The Occupational Therapist came in to give Aaron a shower and try to give him some shower pointers, but he actually just showed her how he showered and didn’t really listen to much of what she said.  Physical Therapy had Aaron walk up and down the stairs one time, which he willingly endured because it was just another block to check before he headed out the door.  

Soon the wheelchair containing happy Aaron was on the elevator, along with our cart full of a week of accumulated “stuff”, and before long we were in the van, waving goodbye to the nurses and driving away.  Going home at last!  But a stop at McDonalds was first as Aaron asked for a burger and fries on the way home.  We picked up lunch, and headed home to eat and to settle in to the life that Aaron had missed.  

Aaron was very, very weak.  He needed lots of help with walking, with stairs, and with the bathroom.  He was home, but life wasn’t going to be normal for some time.  He finally ate, and slowly we made it upstairs to his room.  He was so happy to be there at last.  He wanted to watch his new Tremors movie for real, on his DVD player instead of the portable player.  So he sat down in his chair, and he got his things around him fixed just right.  His clock next to his desk had to be positioned just so.  The items that he keeps near him on his bed were placed just right, with his stack of books on the corner of the bed.  On top of those was his notebook in which he kept his record of what movie chapter he was watching.  His pen was placed precisely on top of the notebook.  His back scratcher was set beside that pile of books.  His Gecko from Glenda was settled in front of his clock.  He looked around and checked to see that things were exactly as he wanted them as I stood behind him silently watching, and silently marveling at his precision with every item.

Then he saw a DVD that needed to be put on his shelf of DVDs.  He asked if I would put it there, so I leaned over and placed it at the end of the row.  He just stared at it, and I waited.  Nope.  It wasn’t right.  So I repositioned it several times before finally finding that he wanted it leaning a little at the top, and he wanted his special large rock to be placed near it so it wouldn’t slide out of place.  There!  It was finally according to Aaron’s specifications, and I was free to leave while he watched his DVD, content that all his things were in their perfect place as they should be.  At home.  Where he should be, and where he was so happy that at last he was there. 

Aaron spent much of that first weekend sleeping in his chair in the family room, his animal print blanket stretched over him.  He coughed a lot, and he tried to walk by himself, but it was very slow going.  He needed lots of help with everything.  Coming home was wonderful, but it didn’t mean that Aaron was well and strong right away.  For that reason, he was pretty disappointed.  He loved being home, but he wanted his old body back as much as he wanted his old life back.  Both would take awhile to return to normal, and despite our reminders and assurances, Aaron had some frustrations. 

 
“I’m just so tired of myself!” he blurted out on Saturday, overcome with frustration at his weak body.  That made us so sad, but we could only offer encouragement that every day would be better.  And it was.  He enjoyed visits from friends, including Rosa and her mother, Louise…..complete with pizza and balloons!  He enjoyed his room and his family room chair, watching Wheel of Fortune, and being with Jackson, and just everything.  And each day was better than the one before.  Each outing found him getting a little stronger, his stamina increasing slowly but surely.  After several days, he and I played Skip-Bo, with Aaron checking his watch to keep track of time, just like always.
 

Perhaps what he loved the very most, and what he had missed the very most while in the hospital, was his own comfy bed.  The first night back at home, when it was time for bed, I was helping him get everything ready.  Every blanket was perfectly placed, every wrinkle straightened out, the pillow put just in the right place, and then the sheets were pulled back so that he could place his snake and his skunk under the covers.  But now he had decided to add a new member to the mix.  He wanted to add the soft green frog that Andrea had sent him while he was still in the hospital.  So he rearranged Mr. Snake and Skunk in order to make room for Mr. Frog, stood back to observe and to rearrange, and finally he was satisfied. 

 
He climbed in his bed, after writing his “Time to Bed” in his log book, and I pulled his covers up around his face.  Then he smiled the sweetest smile in the world as he moved his legs back and forth in his wonderful bed that wasn’t a hospital bed.  He was the picture of utter contentment.  He pulled his arms from under the covers and held them up to me, so I leaned down and gave him a goodnight hug.

“Good night, Aaron,” I said as I hugged him.  I arranged the covers up around his face again, and there was that smile.  He looked at me for a few seconds.

“Mom?” he asked.  “Do you want to say good night twice?”

What a precious moment!  Of course I said yes, and so out of the covers came his outstretched arms.  I leaned down to hug him one more time, thankful that our Aaron was home in his own bed.  The hospital stay was scary.  His health was uncertain.  The outcome was unknown for days.  I had stretched my arms on this bed days earlier as I asked God to heal him.  Now here Aaron lay, smiling and hugging, wanting to say good night twice.  It was his way of telling me how very happy he was to be home.  I understood and I agreed.

I left Aaron to his dreams.  And I didn’t go to sleep until I thanked God that on this night, I got to say good night to Aaron in his own bed…..twice!

Aaron’s Hospital Stay

Aaron came home from his day group on Thursday, June 11, in his usual way, bounding in the hall door from the garage with talk of what he had done that day at Paradigm.  It was later, as I stood in the kitchen fixing supper and he sat in his family room chair, that I noticed him coughing.  It was just a dry cough, nothing major, but it was persistent.  So I leaned around the corner and asked him if he was all right, and he answered in his usual droll way that he was just fine.  But as we ate supper awhile later, Gary and I noticed that he was very slow.  A couple days earlier, on Tuesday, Aaron had four seizures.  That wasn’t unusual for him, but on Wednesday he was himself again.  To be more lethargic on Thursday was concerning to us. 

During Wheel of Fortune he wasn’t animated or excited at all.  I felt his forehead and noticed how warm he was.  Sure enough, when I took his temperature it was 102.4.  The next morning I called McConnell Air Force Base to make a same day appointment.  Aaron kept sleeping until I finally went in his room and roused him enough to take his temperature again.  It was still 102.4.  He had a very hard time waking up enough to take his morning pills, and then went right back to bed.  As I continued to check on him I became very concerned at how he couldn’t wake up, so I finally made the decision to take him to the ER.  McConnell agreed with me, so I worked to get Aaron awake enough to dress.  I then had him sit on the floor of the hallway upstairs and scoot down the stairs on his bottom.  He would scoot down one stair and fall asleep until I jostled him……then scoot down another stair and fall asleep…..all the way down the stairs. 

We slowly made it to the van, and later at the ER a male nurse helped Aaron out of the van and into a wheel chair.  Still he slept.  We got him on the exam table and he slept again.  Somehow he stood up for a chest X-ray, but he slept through the doctor’s exam, the blood draw, insertion of the IV, and even the catheter.  The doctor found an ear infection, so I thought that Aaron’s body was just fighting hard and the sleeping was his reaction to that.  I felt like we would soon leave with an antibiotic prescription, go home, and get Aaron well. 
 

 
Yet the concern on the doctor’s face as he kept coming in the exam room was raising my own concern as well.  Finally he told me that the blood work had shown Aaron’s sodium to be dangerously low.  It should be at 135-136, but Aaron’s was 121.  Then he said that Aaron would need to be admitted to the hospital to address the sodium issue, and to find out what else was going on with him.  My mind was whirling as I called Gary and as we tried to decide if Aaron would stay at St. Teresa Hospital or go elsewhere, although that decision was made for us by insurance.  We would stay at St. Teresa.  It wasn’t long before we were on an elevator headed up to the small ICU unit, my mind still trying to adjust to all this.  I looked down at my very sick son and wondered about the “what else” that the ER doctor had mentioned.  What else was going on inside his body? 

 
There Aaron lay, all hooked up to monitors and tubes, his body struggling against that unknown something that was making him so sick.  He tried hard to wake up enough to answer nurse’s and doctor’s questions.  He sometimes showed his definite personality, like when the nurse asked him a question about his bowel habits.  He gave her a rather disgusted look and just answered with a “Hhmmpf!”  When Gary was there, and I left later that evening to run home, Aaron asked me to bring him his watch and his glasses.  He didn’t wear his glasses a lot during those first few days, but he put his watch on his arm right away, pushed way up the way he likes it.  It was a piece of normalcy in this crazy place in which he found himself. 

 
Over the weekend, when friends came to visit, Aaron would cry.  He showed emotion that was rare for him.  He told me later that he was sad.  I told him that we understood, but I didn’t tell him about my own sadness.  Or about those icy fingers of fear that were trying to grab at me.  It was not only sadness but fear I was feeling as I watched the blood draws…..the strong antibiotics flowing through the IV into Aaron’s body…..the fevers that sometimes rose to 104.5……the CAT scan…..the X-rays…..the spinal tap……the kidney specialist and the infectious disease doctor…..the testing for West Nile and tick borne disease…..the low sodium issue. 

 
Early on Saturday morning, as I have done many times in the past during stressful times, I asked God to give me a special verse.  I asked Him to speak to me in the way that I needed at this time.  There in that hospital room, with Aaron sleeping nearby, God gave me Ecclesiastes 11:5:  “As you do not know the way the spirit comes to the bones in the womb of a woman with child, so you do not know the work of God who makes everything.”  That was it!  I didn’t know what was going on here with Aaron.  I didn’t know the work of God but I do know God.  I know that He loves us and I know that He has a work that He is accomplishing.  I know that I can TRUST Him, regardless of what else I don’t know. 

It was very hard to watch Aaron suffer.  Hard to see the pain in his face when he coughed….the struggle to deeply breathe and to talk……the pain of needles and tests.  It was easy for me to let fear take over as I helplessly watched our Aaron and wondered still about the “what else” that was so elusive to find in his body.  Soon another principle from scripture came to my heart.  “In everything, give thanks.”  I went home one evening while Gary sat with Aaron, and I knelt by Aaron’s empty bed in his bedroom.  His stuffed snake and skunk were still in the bed where he had left them.  I stretched my arms over his animal print blanket and I asked God to please heal our son.  I told God that I didn’t know about this work that He was doing, but I did trust Him.  And I thanked Him for this time.  That kind of thankfulness takes great trust in the One whom I was thanking, for sure, because I hurt for Aaron so deeply.  But I also know God and I know that He can be trusted.

It was a turning point for me.  My mother heart still hurt deeply all through that week in the hospital.  One night, with eyes closed, Aaron said, “This is not fun.”  There went my tears.  And later, eyes still closed, he said, “I love you, Mom.”  I leaned over his bed and he got as big a hug as I could give him.  But I purposely stood there and voiced thankfulness to God, hard as it was, for this work that He was doing and that I didn’t understand. 

 
Aaron’s chest X-ray finally showed pneumonia in his right lung.  It was determined that he had Aspiration Pneumonia.  Apparently, he aspirated some saliva during his seizures that previous week.  He responded to a new antibiotic, was moved out of ICU to a private room, began walking with the help of physical therapy, and was soon clamoring to come home.  I don’t know who had the bigger smile, Aaron or his doctor, when he was finally told that he could go home.  On Friday, a week after being admitted to the hospital, he was wheeled out to our van and we took off for home…..after picking up his choice of McDonalds for lunch on the way.  He is recovering his strength and his spirit, and some grouchiness, too. 

There is more to write about this experience.  About how Aaron’s autism affected his hospital stay, and about his tender return home to his world and his routine.

We’re so thankful for this outcome, but if it had been different, I pray that we would still be thankful.  Thankful for the work of God who makes everything, even when don’t know or understand His work.  When it’s all said and done, there is no better place to be than in His will as we watch His work and trust in Him. 

 

Because He Lives

While enjoying a dynamic Easter service this morning, I was struck with the words from the familiar song, Because He Lives.  This old song by Bill and Gloria Gaither, written in 1970, can be sung by memory for most of us.  As I joined the congregation in singing the words to the second verse, my mind thought of Aaron.  It struck me forcefully and yet sweetly how much these words give me comfort concerning Aaron, in a way I hadn’t really contemplated this deeply before.  The reality of what a living Savior means to us as we deal with Aaron’s future and the seriousness of his seizures washed over me with great peace and hope. 

 

How sweet to hold a newborn baby,

Aaron, soon after birth
 

And feel the pride and joy he gives;

Aaron
 

But greater still, the calm assurance,

Aaron – Video EEG
 

This child can face uncertain days because He lives.

Seizure day
 

Because He lives, I can face tomorrow;

 

Because He lives, all fear is gone;

Seizure day
 

Because I know He holds the future.

Newborn Aaron
 

And life is worth the living just because He lives!  (Bill and Gloria Gaither)

 

No matter what each of us is facing, we can face it with the calm assurance that Jesus lives, and in Him we will have all we need to face whatever the future holds

Shaky, But Not Shaken

Yesterday Aaron rushed in the house when he came home from his day group.  He had a huge smile on his face, but he had something else, too.  He was wearing bright yellow shades, as he calls them, and he was quite happy with his new look.  His huge smile was as bright as those sunglasses that Bryan had bought him that afternoon.  He let me take a picture to send to Andrea, Andrew, and Megan, and he was happy with their responses. 
 

Now today we’ve gone from that happy scene, to this:

 
Most of you know what this picture means.  Seizures.  How quickly things can change.  Poor guy!  Such awful seizures…….and all the awful side effects and results that go along with them are what he’s facing today.  Gary knew before bed last night that it would be a seizure night for Aaron, but I wasn’t so sure.  Well, he was right so here we are again as I listen to Aaron breathing deeply while he sleeps on the couch, his fourth seizure over as I hope there are no more.

It’s a beautiful spring morning here.  I’ve opened some windows, enjoying both the gentle breezes and the sweet sounds of birds outside.  In our front yard, just off the front porch, we have a large Golden Rain tree.  I noticed the other day, after some stout winds, that we had some small twigs scattered around the yard under the tree.  Nature had once again done her pruning work on our tree.  At other times, during strong storms, we have had very large branches scattered over our yard.  I was thankful that this wind only brought down small twigs that I will rake and throw away. 
 



















Yesterday morning, as I finished reading Psalm 21, I was struck with verse 7.  David wrote, “For the king trusts in the Lord, and through the lovingkindness of the Most High he will not be shaken.”  Pondering that verse, my mind went to our Golden Rain tree.  That tree has been shaky, many times, as it’s buffeted in the Kansas winds.  Yet while it’s been shaky over and over again, it is not shaken.  That tree still stands tall and strong, minus some branches and many twigs, but not destroyed. 
 

Shaky sometimes, but not shaken.

I find myself there in life, over and over again just like our tree.  I’m especially thinking of that fact today as Aaron lays nearby, recovering from his latest seizures.  Things sure do get shaky sometimes in life.  I’m tossed around by the winds that come my way…..that come to all of us at one time or another…..or multiple times.  I know that God can use those winds to prune me, to take out of my life attitudes that I don’t need, and to shape me to love Him and serve Him more.  God’s pruning occurs best in the shaky times.

However, I’m not shaken.  That’s because I, like King David, have trusted the Lord.  I realize that through God’s lovingkindness……there’s that word “hesed” again……I will not be shaken.  God’s love is a covenant love, never ending and never wavering toward me, His child.  The Hebrew word for “shaken” here means to go off course or to waver.  That’s what I never need to do because I am wrapped in the unconditional love of God.  I know that He does what is best, always, even when I don’t understand it. 

I may look at life through tears.  I may look around me and see the tossed about twigs that come from going through the shaky times.  But I also know that because of God’s faithful, enduring love…..because He is sovereign and never makes mistakes……that I can still be found standing strong, unshaken.  Just like our tall, beautiful Golden Rain tree. 

Shaky, but unshaken as I watch Aaron sleep this morning.  I know that Aaron is in God’s loving hands as well.

Tomorrow?  Tomorrow will be a day for wearing bright yellow shades again.