Category: Epilepsy

Snapshots of Aaron

Sometimes the hours and the days run together.  I think, “Oh, I’d love to share this about Aaron or that about Aaron,” but I run out of time or motivation, or the stories just don’t seem as funny or meaningful as they did when they first happened.  Often, if I don’t write the story soon after it happens, I feel like I lose my inspiration.  What was I trying to convey?  What did I hope to capture? 

So today I was looking at some pictures I had recently taken.  I decided that perhaps I would share a few of those pictures with you in order to just give a little update on life with Aaron.  A life colored by his unique outlook, which has partially developed because of how autism and seizures affect him, and also because of how his personality was shaped by God.

THE TULIPS

A friend came over for lunch last week, surprising me with a bouquet of tulips when I opened the front door.  When Aaron came home that afternoon, he was delighted to see something unusual on the kitchen table.  There were the purple tulips, in a vase of water, just ready for him to examine.  I immediately told him not to touch them, because Aaron loves to not only touch flowers and plants, but to also squeeze them to see if they are real.  Or he’ll pull the petals and leaves.  Therefore, I know to tell him up front to not pull….or squeeze…..or do any other tests for realness. 

 
The tulips wilted over the next few days, so I finally decided one evening that they were ready to throw away.  Aaron was very happy about this, because it meant that he could examine them more fully than he had previously been allowed.  He had fun rubbing the yellow pollen on his finger as we examined the stamens together.  He then pulled some of the petals off and laid them in a little pile.

“I want every petal on every plant!” he exclaimed as he started his petal pile.  But then he stopped and thought a moment as I offered to put the petals in a plastic bag for him.  “No,” he decided.  “They’ll just turn crispy.”  So he abandoned his petal idea as he left the kitchen. 

A couple days later, he was thinking about the missing tulips and he said, “Mom, what species are you going to get now?”  I told him that I probably wouldn’t replace the tulips.  He continued, “You need to get a different species!  Get roses!”  And I decided that Aaron has a great eye for flower species!

THE SOCKS

Everything in Aaron’s life is significant to him.  Even socks.  I don’t know why he sometimes thinks that he should wear a pair of socks more than one day.  I tell him repeatedly to always put his socks in the laundry every day, and then get a clean pair the next morning.  But every now and then he’ll ask, “Tomorrow, can I wear the ones I wore today?”  And I always tell him no. 

“I’m gonna save these,” he said one day.  Why does he act like he needs to preserve his socks?   He didn’t notice my deep sigh as I told him to go count his socks.

“I have four pair,” he reported after a few minutes.   I assured him that four pairs of socks would last four days, and that I would be doing laundry in order to provide him with clean socks…….LOTS of clean socks…….before the four days were up and the four pairs of socks were gone.  

The next day he came up to me and said very seriously, out of the blue, “Now I have three socks.”  That was just this past Sunday, so after church Gary and I ran to Sam’s.  I bought Aaron a package of ten……TEN…….new pairs of socks.  He was happy.  The pressure was off…..for both of us. 
 

But he wasn’t totally finished.  On Sunday night, before he went to bed, he asked, “Do you want me to wear one of those new socks tomorrow?”  Really, sometimes I feel like I’m going to develop a twitch like the Inspector did in the Pink Panther movies.

THE TIME

 
All of you know that Aaron loves EXACT times.  And he loves to do things, like eating lunch when he’s home, at EXACT times.  The other Saturday morning, he got up and came downstairs.  “Mom, I got up at 7:01.” 

“Did you, Aaron?” I asked.

“Yes,” he replied.  “But I decided not to come out of my room at 7:01 because I thought 7:01 was too early.”  He stood there staring at me.

“Should I have gotten up at 7:01?” he finally asked when I didn’t give him his desired response. 

I told him that it was fine to get up around 7:00.

“7:01,” he replied.

Whatever.  But I didn’t say that, because it’s very important to Aaron to be precise with time.  I just smiled and let him continue.

“I’m telling Dad I got up at 7:01,” he said as he headed for Gary’s study.  Yep, it’s that important.

THE EATING

Today Aaron stayed home because he had a seizure this morning……at 7:27.  Later, as he had recovered, I asked him if he wanted something to eat before he laid back down.  He looked at the clock, and I knew what was coming.  It wasn’t 12:00.

“Is it 12:00?” he asked.  Then he saw that it wasn’t 12:00. 

“No,” he continued.  “I don’t want to eat until 12:00.”

He woke up later, a little after 12:00, but that was still an allowed time for him to eat lunch because it wasn’t before 12:00.  AFTER 12:00 is allowed.   These things are important to know. 

He ate some pizza.  He often has a spoon with his pizza, and very often he will include the whole set of silverware…..knife, spoon, and fork.  Never mind that he doesn’t use the utensils.  He needs them there beside his plate. 
 

And the bowl, of course, in which he places his pepperoni to be eaten later.   I don’t know why he won’t eat the pepperoni with his pizza, but he rarely does that.  He places the pepperoni in the bowl, and then eats it last, when all the pizza is gone.

THE ANIMALS

I’ve also told you how much Aaron loves his stuffed snake and his stuffed skunk.  They must be in his bed every night, where he meticulously arranges them until they are just right. 

This morning, after Aaron’s seizure, I had to wash his bedding.  This time I also needed to wash his snake and skunk.  The skunk has seen better days.  He had a large rip on his head and he was missing some stuffing.  I mentioned throwing him away, but I could tell Aaron was bothered by that.  So I sewed up the dirty skunk, and then tossed him and Mr. Snake in the wash.  That’s why later we didn’t have snakes on a plane, but we had a snake and a skunk in the dryer.  They are clean now and ready to once again be oh-so-carefully placed into Aaron’s bed tonight. 
 

THE TOOTHPICKS

On our way to church this past Sunday, I climbed in the passenger seat of our van and closed the door.  When I reached for the handle, I saw them…..the toothpicks that Aaron had confiscated a few days earlier from Carlos O’Kelly’s.  Gary and I laughed when I held them up…..a reminder of Aaron and of Aaron’s ways.  He does love his toothpicks, like he loves his silverware that he often doesn’t even use.

 
That’s how it is with Aaron.  We see his marks all around us in the ways that he lives his life.  It seems no matter where we turn, we are reminded of Aaron and of his special ways.  We may laugh, or roll our eyes, or bite our tongues, or sigh deeply, but there’s no getting away from all the ways that Aaron leaves his mark on our lives and in our hearts. 

And we are richer for it. 

 

 

  

 

I Love This Day

Aaron had an appointment this afternoon with his Epilepsy doctor, and as always on doctor days, he and I went out to eat lunch.  Aaron loves these lunch dates, not necessarily because of the company but because of the FOOD.  But maybe I’m wrong about that, because when we pulled into the parking lot of Carlos O’Kelly’s and were taking off our seat belts, Aaron said, “I love this day.”  That made me smile a huge smile as I asked Aaron why he loves this day.  “I love this day with you,” he said. 

So OK, my heart was sufficiently melted and I was surprised I could walk into the restaurant.  Yet Aaron was already leading the way, so I had no choice but to follow.  He beat me into the entrance and was already rolling the little toothpick dispenser around as he gathered up three or four toothpicks…..while the greeters greeted him and Aaron ignored them.  The girl who ushered us to our booth smiled broadly, though, and I could tell that she understood and liked Aaron.  We moms of special children just know.   Aaron was oblivious of any of this.  He was just happy to have had the time to get several toothpicks before picky Mom made him stop……and I wondered if he still loved this day with me.

We sat down, and before our understanding greeter could hand us our menus, Aaron was already telling her that he wanted water.  Except he always asks if he can have water, as if he needs permission.  She and I both told him at the same time that our server would bring water, but Aaron was already opening his menu.  He needs lots of time to try to match what he wants to eat with the pictures that are shown.  Our greeter also handed us a special menu that was for items that would only be available for the next week.  She told us that this menu was for us to keep along with the two regular menus.

Our pleasant server introduced himself as Aaron quickly asked him if he could have water, and soon Aaron and I were looking at our menus.  Our water came, but no straws…..and straws are a staple to Aaron.  Our server immediately realized his mistake, apologized, and hurried off to bring us straws.  “He’s clumsy,” Aaron said.   “He forgot our straws!”  I was thankful that Aaron didn’t repeat this to our server when he returned to take our order.  I handed him our menus when we were through placing our orders, but I forgot the special menu laying off to the side.  He asked for it as well, and after I gave it to him, Aaron said that he thought that this menu was ours to take home.  I realized then that Aaron had pushed it to the side in order to hide it.

“Why did you think it was ours to take home?” I asked. 

“Because that girl told us to keep it,” Aaron patiently replied. 

As so often happens, statements that often slip right past me certainly don’t slip past Aaron.  Literal Aaron.

We munched on chips and salsa, and when Aaron’s salad came he dug right in to that…..only pausing to grab another chip or two here and there because he didn’t want me to eat them all.  He always keeps a close eye on the chip bowl when we eat at Carlos O’Kelly’s.  Soon our meals came, and when the plates were in front of us I took a bite of my enchilada.  Aaron looked at me eye to eye and said, “Are we gonna pray?”  He held his hand across the table for me to hold as we always do…..and my heart melted again.  How could I forget to ask the blessing?  But Aaron remembered….and I’m almost glad that I forgot because it showed me that Aaron remembers!  He remembers these important lessons…even when silly Mom doesn’t!

Aaron watched the servers as we ate, and he listened as I thanked our server for filling Aaron’s glass with water or bringing us extra napkins.  “We’re nice to the staff, right?” he asked.  I agreed that we should be nice to the staff…..the servers.  “It’s hard to be staff,” Aaron continued.  He knows that sometimes people aren’t kind to servers and this bothers him.  I remembered the last time that we ate here.  One of the servers dropped a napkin, and Aaron looked at her.  “Hey!” he said.  “You spilled your napkin.”  It was funny and sweet, and I was glad that she laughed and that she thanked Aaron for pointing out her napkin that spilled.  

Soon we saw a group of servers singing Happy Birthday to a diner.  Aaron, who doesn’t like having Happy Birthday sung to him….or to anyone, really…..did not care for this display of silliness.  “Oh my word!” he said.  “Tell those people to shut up.  We’re trying to eat!”  So much for being kind!  I was very thankful that we had an end booth, and that for once Aaron spoke rather softly.

As we finished eating, our server asked if we would like dessert.  I declined, saying that we were full, but Aaron didn’t want to let that idea slip away.   Dessert sounded very good to him today.  “Why didn’t you order dessert?” he asked.  I told him that we didn’t need dessert, and besides, we were full.  He wasn’t convinced, I could tell.

“Are you full?” I asked him. 

“Yes,” he truthfully answered, before thinking of the consequences of admitting fullness.

He recovered quickly.  “I mean, not TOTALLY full,” he explained.

I laughed….and still said that I did not want dessert.

“But I mean dessert, just for me,” he countered.

Good try, Aaron, but it’s still a no.  So we got up from our booth.  I headed one way and Aaron headed the other, so I turned to head him off, wondering what he was doing.  Aaron saw our server and I saw what Aaron was doing. 

“BYE!” Aaron said as he waved.  It was another sweet moment, and I was so thankful that our server…..our staff, as Aaron says…..told Aaron goodbye. 

I like Aaron to walk in front of me when possible in interesting places like restaurants.  That’s so I can intercept him when he stops to stare at someone’s food….or pulls the leaves of the plants…..or stops to feel the texture on the walls…..or any number of other unique behaviors.  Like how he stopped today to feel a fake cactus on our way out, and comment loudly about its fakeness. 

Of course, he immediately stopped at the faithful toothpick dispenser as we passed it before leaving.  Out came two more toothpicks as he turned the knob.  Our understanding greeter just smiled and I was relieved. 

I had told Aaron earlier that we were having chicken for supper.  As we left the restaurant, I asked him why he got more toothpicks. 

“They’re for the chicken tonight,” he flatly answered. 

Of course.  I should have known that.   

We had to interrupt our fun by going to the doctor and talking about adding a new medicine….and taking away another medicine……and doing a sleep study…..and discussing Aaron’s hand tremor….

But Aaron also had the doctor laughing about how the Rocketeer looks like a grasshopper in his mask…..and how the holes in the ceiling of the exam room were made by paper needles……and many other comments that only Aaron makes.

He had me standing in the corner of the elevator as we left the Epilepsy Center so that I could feel what he feels from that vantage point as the elevator went down.  It was just the two of us in the elevator, but I knew that if there were others in there, Aaron would still have insisted that I stand in the corner so that I could enjoy what he enjoys.  He bent over and rubbed his hands together in great delight, and we exited the elevator laughing and talking about what we felt.

We went into Best Buy on the way home, and Aaron immediately stopped at the entrance to ask the employee there if they had the Beauty and The Beast DVD….and I so resented how that guy looked at Aaron as if he was a Martian.  He needs to ride in an elevator with Aaron, I thought.  He needs to look at life through Aaron’s eyes instead of looking at Aaron through his uncaring eyes.  He has no idea what he’s missing.

Hey, Aaron!  Guess what?  I love this day!  And you know why?

Because I love this day with you. 

 

DO Sweat the Small Stuff!

Aaron seems to have almost fully recovered from his no good, very bad seizure episodes that began on Thursday night and went into early Saturday morning.  This was a tough round for Aaron, taking a huge toll on him physically and mentally.  He slept and slept…..he’s been very slow in both mind and body…..and he hasn’t wanted to eat much.  Not eating much is a sure sign that he isn’t himself.  He also developed a sore throat that didn’t help, and of course his bitten tongue has made eating difficult.  Yesterday, on Sunday, we saw more of the old Aaron return….and it was a welcome sight, even when he was trying to feed the dog. 

On Saturday he finally woke up “for real” around 12:45, meaning that he was more alert and more able to really talk to us.  It was around lunch time….although we know lunch time to Aaron is as close to 12:00 sharp as he can make it……but I offered to heat him some potato soup anyway.  I had made the soup the day before…..the day of his terrible seizures…..but all that day he hadn’t been able to eat a thing.  I hoped he could enjoy his favorite soup on Saturday, so I heated him a bowl.  He couldn’t eat it, though, stopping after managing only a couple spoons full.  I put it back in the frig, and he hasn’t touched it since. 

Something else unusual is that he offered to take a shower without being prompted.  He actually wanted to shower, so as soon as he was steadier we let him get cleaned up.  Later, he and I went on a walk around the yard with Jackson.  It was good for Aaron to get some fresh air on that beautiful, warm January day.  Then we soon got in the van and drove up to check out the car wash, which was still too crowded, so we went on down to the Little Caesar’s pizza shop.  He and I waited in the drive-through line, and soon I looked over and asked Aaron if he wanted some bread sticks.  I rarely let Aaron have bread sticks, though he always wants them.  He just doesn’t need the extra calories when he’s going to eat so much pizza.  He was very surprised when it was ME who brought up bread sticks.

“Yeah!!” he responded when I asked him if he wanted them.  His eyes brightened and he was very happy…..and I was happy, too.  What a little thing that meant a LOT to Aaron.  And to me, if anyone deserved some bread sticks at this moment, it was Aaron.

Once at home, he only barely managed to eat one piece of pizza and one bread stick.  Normally, he would have tried to wrangle that whole pizza down his throat, plus all the bread sticks.  Honestly!  But not on Saturday, when he was still recovering, and also fighting that sore throat and damaged tongue.

Aaron continued to recover yesterday, gaining his strength and his spunk.  His appetite still wasn’t back to normal, but he was talking more and managing the stairs more easily.  He began to watch his Indiana Jones movies that he had started last week…..and we knew he was feeling more like himself when he started talking to us about them as well.  I know that Gary and I will soon tire of his repetitious talk about these movies, but I also know that we will relish having old Aaron back with us.  Remind me I said that in a day or two when my brain is numb from his constant talking.

I stood in Aaron’s room on Friday night, when he was still so affected by the seizures, and I watched him get ready for bed.  I helped him get the covers on his bed just right according to Aaron standards, and then I stepped back as he finished his routine.  He was slow and unsteady, but nothing was going to stop him from getting his room exactly perfect. 

He carefully pulled back his covers, and every bit as carefully placed his stuffed snake in his bed.  He made sure that Mr. Snake was very straight, with just enough of his head on the pillow.  Then Aaron took his old stuffed skunk and placed him right beside Mr. Snake, just so-so.  The skunk’s little tail was arranged correctly, along with his paws and his head.  Aaron didn’t speak a word, working slowly with purpose……and slowly because of the seizure effects.  He pulled the covers up when he was finished, letting Mr. Snake’s snout still show, but totally covering the little skunk.

Then Aaron smoothed out any wrinkles that he had made in his covers before he headed around the bed to pull back the covers on his side.  He got his long pillow situated just the way he likes it, pulled over to just a certain point that only Aaron knows.  He made sure that his nightstand items were still where they were supposed to be, in the right place and order.  Then he picked up his notebook in which he writes the times that he gets up in the mornings and the times that he goes to bed at night.  He had to write in the time for that morning since it was blank because of his seizures.  I watched him write 8:17 A.M., although I knew that was not the correct time that he got out of bed.  I wouldn’t tell him that, though, not for anything.  Then he wrote down his going to bed time and carefully closed his notebook, placing it back in the floor with the pen on top, just right. 

 
He still had his glasses on, so I asked him if he wanted me to put them on his bookshelf for him.  He agreed as he slowly took them off, handing them to me.  “Put them by my watch,” he instructed me as I turned to lay them on the top shelf.  So I did as I was told, and I laughed inwardly as Aaron leaned around to examine my placement.  I hoped it was correct…..and it was….so Aaron was finally, I hoped, ready to actually get in his bed for the night.

I got his covers pulled up close around him the way he loves, and we talked for a minute before I turned his lamp off.  But just as I was shutting his door, as he so often does, I heard him say, “Mom?”  So I opened the door and said, “Yes?”  And he paused before I heard, “Mom?  Is it almost 10:00?” 

“Yes, Aaron, it’s almost 10:00,” I assured him.  You see, Aaron can barely tolerate going to bed before 10:00.  So just as his snake and his skunk and his covers and his pillow and his nightstand and his going-to-bed and his getting-up times and his glasses beside his watch and his covers pulled up…..ALL had to be JUST right…..so did his actual time to bed.  Or at least as close to right as possible.  He had to ask, even though his clock was there beside him on his nightstand right where it was supposed to be.  I guess he just had to hear Mom confirm to him that it was near enough to 10:00 to go to sleep.  The world would still turn, even though it wasn’t exactly 10:00….or later.  So I closed the door and Aaron quickly fell asleep.

Aaron doesn’t act like his seizures greatly concern him.  If they do, he doesn’t say much about it.  He has wished that he didn’t have seizures and that he didn’t need to take pills, but he doesn’t seem to get depressed or sad about it.  He manages to push on ahead despite the pain and the side effects that the seizures cause.  But don’t mess with his bedtime routine!  Don’t ask him, if he has any cognizance at all, to go to bed with his two stuffed animals out of place or his covers wrinkled or his glasses not beside his watch or his time not written in his notebook.  That would be disastrous!

These facts are some of what is so amazing about autism, and about Aaron.   I guess, in the long run, it helps Gary and I handle the stresses of Aaron’s situation a little easier.  We talked about Aaron’s bedtime routine that night, and we laughed…..when there hadn’t been much to laugh about that day, for sure.  We laughed because Aaron is truly unique, and his being unique is often a cause for us to smile and even laugh. 

I can’t take away Aaron’s seizures, but I can usually accommodate his desire for order and routine in his world.  My world, and Gary’s world, may be anything but orderly in the process…..but that’s OK. 

And one more thing.  You know the saying, “Don’t sweat the small stuff?”  With Aaron it’s just the opposite.  He DOES sweat the small stuff, and seems to let the big stuff roll off his back.  Sometimes that’s very freeing when we stop to consider that the big stuff in Aaron’s life is at times really serious.  It helps get our minds off our sadness and fear as we are pulled by Aaron into focusing on stuffed snakes and wrinkled bed covers.

Leave it to Aaron to pull us into his world, and to get our minds off of our other worries……with a stuffed snake, no less!     

 

 

The Darkness

On Thursday evening, Gary and I noticed that Aaron didn’t seem quite like himself.  He became lethargic as the evening wore on, even falling asleep sitting up in his favorite family room chair.  Then he wanted to go to bed early…..and for Aaron to agree to a bedtime before at least 10:00 is very unusual.  It’s like his lunch at 12:00 mindset.  Bedtime should not occur before 10:00 in Aaron’s world, so his desire to head on up to bed at 9:30 combined with his tiredness made Gary and I wonder what was going on with him.  

Therefore, we weren’t too surprised to hear him having a seizure a couple hours later.  It was a very hard seizure, lasting about four minutes.  Three other long, hard seizures followed that one during the night.  He wet the bed after the second one, bit his tongue during the third one, and I walked in his room at his fourth seizure to find him on the floor.  We have no idea how that happened, because he was in a sitting position with his back against his night stand.  Blood was coming from his mouth as he bit his tongue again.  Gary and I eventually got him back in bed, and then later before Gary went to work he was able to get Aaron a little cleaned up before helping him downstairs to the couch.   

 
Aaron slept all day, with only a few short waking moments when I was able to give him his pills or something to drink.  At 3:30 he woke up and told me that he didn’t feel like going to Paradigm.  He was so shocked when I told him that it was 3:30 in the afternoon……that he had totally missed Paradigm that day and didn’t have to worry about it.  He had no memory and no idea of what had happened. 

I don’t tell all this to garner sympathy or to any way embarrass Aaron.  I tell these things in an effort to share with others the faithfulness of God in the midst of pain…..the pain of a mother for her son, in our case……the shared pain of parents bearing this burden together………and the pain of fear that often tries to settle its icy grip in our hearts.

This seizure episode for Aaron has been a bad one.  In fact, he had another small seizure early this morning.  He got up later but wanted to go right back to bed.  His tongue is extremely sore and damaged, and he also has a sore throat now.  Worry and sadness could easily be my companion this morning.

Sadness was definitely near me yesterday morning as I sat at the kitchen table while Aaron slept nearby.  At times like this, I desire to hear from God.  I know that the comfort He gives is like no other.  I don’t doubt Him.  I don’t question why he allows this to happen.  I’ve gotten to know Him over the years and I know that He is always loving, and good, and that His sovereignty is beyond my understanding.  I trust Him.  What I desire is His comfort during the moments when my heart is a little fractured, and my emotions are raw.

I would like to remain free of emotion when it comes to Aaron and his special needs.  Emotion hurts.  Emotion means that I’m thinking of Aaron and what he is enduring…..and what he’s missing in life……and what the future might hold.  But how can a mother keep her son at arm’s length and not at times deeply hurt over his pain?

Such was my morning yesterday.  I was hit with the reality of Aaron’s suffering.  I cried.  I just let myself feel the pain for a few moments and I cried in my hands.  And God saw His daughter crying and He comforted me.  I love, love, love how He speaks to me through His Word when I need it the most.  I’ve started reading Daniel, and there it was.  My eyes fell on Daniel 2:22:  “…..He knows what is in the darkness, and the light dwells with Him.”

Most of Aaron’s seizures are during the night as he sleeps.  I detest that sound coming out of the baby monitor on my nightstand…..the sound of Aaron’s seizure beginning.  It jolts me out of sleep and it always fills me with dread.  I never get used to that awful sound.  And the darkness.  Our room is dark, the hall is dimly lit, and Aaron’s room is very dark.  I turn on his light, not knowing what I will see, and I stay with him until the seizure is over and I know he is safe.

Then usually I will hear that gasping sound later again coming from the monitor as another seizure begins.  The scene is repeated…..the darkness…..the dread…..the fear.

So this verse from Daniel was very special to me.  Once again, God reached down to me in my particular situation and spoke especially to me as the loving Father that He is.  He knows!  He knows what is in that darkness that I face, whether it’s the physical darkness of nighttime seizures or the darkness that fills my soul with fear for Aaron.

And guess what else?  Listen to Psalm 139:11-12:  “If I say, surely the darkness will overwhelm me and the light around me will be night….even the darkness is not darkness to You, and the night is as bright as the day.  Darkness and light are alike to You.”

Those words are so sweet to me.  I felt overwhelmed yesterday with hurt and fear for Aaron.  It’s a darkness as real as the darkness I face when I am awakened with the sound of his night seizures.  But God is there in the dark.  He’s the light!  There is no darkness to Him.  He knows my dark fears and He knows my pain, yet He was there yesterday to remind me that He is light in my darkness.  He knows what is in my darkness as I hear Aaron seizing, and as my own heart is seized with sadness and with dread.

I can trust Him with my pain, and I can trust Him with my son.  He said that darkness and light are the same with Him…..and that the night is as bright as the day.  His promises and His peace are my light in the darkest dark.

So I took our beautiful bright sunrise this morning as God’s personal gift to me.  I relished it as His reminder that no matter how often I feel that the light around me will be night, God says, “No way!  The light dwells with me….and so do you, little daughter.  Now enjoy My light, even when it seems dark.”

We have a good God.

 

 

 

 

 

Love Rules!

Here we are.  It’s the third day of our new year.  The third day of new beginnings, so I’m told, and new attitudes…..new challenges and new goals……new everything.  But I have our washing machine running this morning and it’s reminding me that the sameness of life also continues despite my desire to work up some enthusiasm for newness.  Aaron had a seizure last night and so once again I am washing his bedding from the mattress pad up to the top layer…..his favorite cheetah blanket, or whatever animal it represents.  I’m not complaining at all.  It’s our life and I’m thankful that I’m here to be a part of it, and to care for Aaron.  It’s certainly not new.

Aaron doesn’t care for new, unless it’s a new video or a new bag of candy.  He doesn’t like new routines or new schedules, and he doesn’t like the people or the holidays that cause a disruption to his sameness.  On Thanksgiving Day, Aaron came into the kitchen while I was preparing our meal.  He asked when we would be eating.  I told him it would probably be around 2:00.  He stared at me for a few seconds and then said, “That’s why I was thinking if I could eat lunch.”  I didn’t have to look at the clock to know that it was nearly 12:00 and to Aaron, 12:00 means lunch……Thanksgiving Day or not.  He did agree to wait for his meal, but he did give remaining in his routine his best effort as well.

We try not to give in to Aaron’s routine oriented way of viewing the world when there are special days or events to consider.  We give it our best effort in order to include Aaron in our family traditions and our special times together.  Yet we know that at times it’s not only difficult but nearly impossible for Aaron to comfortably enter into our celebrations together as a family.  The complexities of his autistic world, at times, will simply not allow him to move beyond a certain point.  There are several reasons for this dilemma that he…..and we……face during the holidays.

One reason revolves around conversation.  Aaron doesn’t understand and is rarely able to enter into the normal ebb and flow of family conversation.  Andrea and Andrew both came home for Christmas on Christmas Eve.  We sat around the table and talked that evening, and all of us noticed Aaron.  He had moved to one end of the table.  His eyes darted back and forth between us as we talked.  We were catching up with Andrea and Andrew……their lives…….their jobs……their friends.   Soon Aaron would loudly interject with his “Hey!!”  And we would all look to him as we gave him an opening to talk, but he often didn’t quite know what to do with this opportunity to enter into our flow of talk.  So he would pause and then he would continue.  “Uh…..well…..did you know that my favorite character on Phantom of the Opera is the Phantom?!” 

His comment didn’t fit at all into what the rest of us were discussing, but we’re used to this with Aaron, so we all commented in some way.  We really tried to act as interested in what he was saying as we did with the rest of our conversation, but sometimes it’s hard.  And if you give Aaron an inch, he’ll take a few dozen miles and he’ll talk until the rest of us are…….honestly……..bored beyond words.  So after we all responded to Aaron, we would pick up our conversation where we had left off and once again Aaron would sit there with darting eyes and bated breath, waiting for his next opportunity.  “Hey!!”  And we waited.  “Uh…..well……did you know that there’s a Queen alien?  Is she bigger than the other aliens?  Why do you think there’s a Queen alien?”  So then it’s our turn to say, “Uh….well…..we didn’t know that, Aaron.”  Come on.  Show interest……show enthusiasm for Queen aliens and for Phantoms and for whatever else Aaron chooses to talk about, we’re all telling ourselves. 

Another reason that Aaron gets stuck during the holidays in his point of no return is the change in his routine.  Everything is messed up.  His meal times……watching Wheel of Fortune with Mom…..bedtime rituals, especially if Mom doesn’t come right away to say goodnight……playing SkipBo……..having his bathroom to himself……and so much more.  His brain is soon on overload, no matter how Gary and I try to maintain his sense of normalcy. 

The third reason for Aaron’s holiday struggles……and probably the straw that breaks the camel’s back……is having to share his time and space with others.  Aaron has gotten used to being the only “child” at home now.  He is doing better with having Andrea and Andrew come for visits…..probably because he knows he can talk and talk to someone other than Mom and Dad.  We weren’t sure how he would react to Megan, Andrew’s girlfriend, being here again this year.  Megan arrived the day after Christmas.  I was a little nervous, but I greatly relaxed as we all stood in the kitchen chatting and I noticed that Aaron was happily talking.  Soon I had him tell Megan about his movie of the moment…..Phantom of the Opera……which fortunately is one of Megan’s favorites.  Aaron loved feeling included as all eyes focused on him, and he really enjoyed our interest in hearing him sing his favorite Phantom of the Opera song.  He’s hilarious when he sings and we all laughed with him as he relished being the star.

 
And then I goofed.  Aaron had returned to his room, so I asked Andrew to go up and tell Aaron that it was time to eat.  There are reasons that this wasn’t a good idea, but suffice it to say that Aaron from that point forward began to do down the path of frustration and anger.  He wanted me to come get him for dinner, for one thing, and though we roll our eyes at that, it was this important to Aaron.  His nearly overloaded system was beginning to crack under the holiday strain.  He was rude to Andrew during lunch and we knew then that we were facing an uphill battle.  When we later opened presents from Megan, Aaron sat with his back to Megan and Andrew.  He was edgy still. 

Then off we went to walk through Botanica and see the Christmas lights.  It was cold and we all bundled up, and piled in the van……including Aaron.  I let him have his favorite, normal passenger seat, beside Gary.  And wonderful Gary walked beside Aaron and kept defusing him the whole way through Botanica.  You can see in the pictures that Aaron is NOT seen.  When he’s in this frame of mind, you can forget pictures.  They only make him angrier.  We were way down that frustration path at this point.

 
 
We got home and I was hurriedly taking off my coat, getting ready to set out all the snack foods to enjoy while we played our Christmas games.  Aaron knew he was welcome to stay downstairs and play the games with us, but Aaron detests this part of Christmas.  He doesn’t like the silliness and the loud laughter…..at all!  And in the mood he was already in, we knew he wouldn’t want to stay.  So as I removed my coat, Aaron turned to me and loudly said, “Mom, I wish Andrea and Andrew and Megan would just leave, and that I could have things normal again!”

Embarrassing, yes…….especially because Megan is still new to all this and we so wanted her to feel welcome.  Thankfully she’s kind and understanding.  You must be in these situations with Aaron.  But Aaron’s comment was also telling as he revealed, in his blunt way, that he wanted his normal life back.  The night went downhill from there, if that was possible.  The five of us totally enjoyed the games, but we were often interrupted by Aaron’s heavy footsteps on the stairs and the floor as he came down to check things out.  He really wanted to enter in, I believe, but he didn’t know how to comfortably do that.  At one point, he looked at the container full of wrapped Bingo gifts and he softly asked if he could have one.  That made us sad.  Of course, we let him unwrap one and he was happy to get a Wal-Mart gift card.  Then off he went to stew in his anger some more.

 
Aaron and I eventually ended up in my bedroom, where he talked angrily about how we only love Andrea and Andrew, and only want to talk to them….and to Megan.  He cried for a long time, a sure sign of deep frustration.  My heart hurt for him as I tried to comfort and assure him of our love.  I really believe that Aaron senses a difference in how we talk…..our inflections and our words……when we talk to him compared to the others.  Try as we might, we can’t manufacture the same interest in his comments compared to theirs.    Aaron is perceptive……so perceptive. 

I also know that he needs repercussions for poor behavior, so I took the movie away that Andrew got him for Christmas, as well as the lap desk from Megan.  Finally Aaron came downstairs, face and eyes red from crying, and he gave a semi-apology to them.  I helped him into bed, but it wasn’t long before we heard him coming back downstairs.  He walked into the room where we sat, tensely waiting for another outburst.  But in his hand he carried his Ghostbusters movie, which he thrust toward Andrew.  “Hey Andrew!” he enthusiastically said.  “Have you seen this movie?”  And Andrew, with equal enthusiasm, said that he had and then he said, “Who you gonna call?”  Aaron laughed and took the movie back upstairs…..and we knew that his crisis was over and all was well once again.

The next morning, Aaron wanted to give some of his crescent rolls to Megan and Andrew for breakfast.  And when they left for a couple days, and returned to see us again, Aaron was fine with that.  I wish this scenario wouldn’t be repeated next year, but I’m realistic enough……we all are…..to know that it very well might be.  I returned Aaron’s movie and lap desk from Andrew and Megan to him, hoping that he understood the consequences of poor behavior and the reward of good behavior.  We always hope that Aaron will understand and that things will click in his brain, but his brain isn’t like ours at all.

 
So we do our best to understand Aaron, and to love him in all his unique and often frustrating ways.  Like Andrea said to Megan on the night I was upstairs with Aaron, as they cleaned the kitchen…..”So now you see what it’s like to be a part of our family.”

Yes, it’s not easy to be a part of this family sometimes.  Sometimes I think…..AUTISM RULES.   But then I realize that only one thing really rules.  LOVE RULES!!  We don’t necessarily love autism, but we all love Aaron.  We seek to understand autism, and therefore better understand Aaron.  I see growth in all of us that has occurred over the years.  It’s the growth based on our experiences with Aaron, and growth based on knowing that Aaron may improve in some areas, but he will never be totally like the rest of us. 

We may feel beat up and tired and angry ourselves, but we must remember that love rules over all.  God’s love for all of us, and our love for each other and for Aaron, will remain firm during these rough spells.  There’s nothing new about that, even in this new year. 

What a long post!  I have laundry to put in the dryer, and much more to wash.

With love. 
 

 

 

Glittery Moments

 

My day yesterday, Sunday, began at 4:12….to be precise, like Aaron.  Aaron had a seizure for the second early Sunday in a row.  Then he had another at 5:45, so I just stayed up then, knowing that I wouldn’t be able to go back to sleep.  This is a very busy, tiring time for everyone.  To start my day off so physically tired wasn’t what I had planned, but as usual my thoughts went to Aaron and how awful he was going to feel when he woke up.

 

I heard him upstairs through the baby monitor later in the morning, stirring and stretching and then getting out of bed.  I knew that he was marking his wake-up time in his notebook that he uses to record all that important information about his life.  Later he slowly made his way down the stairs.  I noticed that he had on a different pair of pajamas than he had worn to bed, and I knew right away what had happened.  I went up to his room after he and I talked for a minute to gather up his wet linens…..all of them, including his waterproof mattress pad.  Poor Aaron.  Such hard seizures take a toll on him, and can be embarrassing as well.

 

So the day began in earnest with mounds of laundry and mounds of Christmas preparations and plans to accomplish.  I was thankful for the time that day to prep and plan, but as the day wore on I was very aware of my fatigue…..fatigue that was probably only going to increase as the week continued.

 

That evening, as I finally cleaned off the kitchen table to some degree, I was looking forward to a little time to chill out.  Catch up on Facebook, look at emails, read the news…..   But of course, I wasn’t downstairs very long before Aaron came thumping down the stairs.  First he talked to Gary about the movie he had finished watching today, and then the current movie he was now watching.  Soon he came to me at my computer, and began the same recitation.  Gary and I finally had to tell him that movie talk needed to stop.  We were depleted when it came to his long movie reviews and endless questions.

 

I had told Aaron earlier that maybe we could play a game of SkipBo……emphasis on MAYBE.  As Aaron left me at my computer, the last thing I really wanted to do was to drag myself back upstairs and play a game of cards with Aaron.  I was tired.  And I was very weary of listening to all the movie talk.  But we hadn’t played SkipBo in a while.  This time of year takes much of the fun time away.  I felt badly for Aaron, who asks me every single night of his life to let him know if we can “do something, like SkipBo …..”

 

It was around 9:30 when I went upstairs and asked Aaron if he wanted to play a game of SkipBo.  He was very happy to hear me ask that question, so while he took his pills I shuffled the cards.  We had a normal game, with me having to monitor Aaron’s every move in case he cheated and with Aaron thinking he had to monitor my texting with Andrea.  I could feel my nerves getting a little more worn.  Of all nights to have a slow game, this was not the night!  But was it ever a slow game!  Where were all the 3’s?!  I was getting irritated for sure.

 

Finally the game was over!  I wasn’t nearly as happy about winning as I was happy that I could go to bed at last……after turning off all the Christmas lights, fixing the coffee pot, helping Aaron get his bed all perfectly ready, and listening to his non-stop chatter.  Ugh!  All these thoughts were going through my mind as I put the cards back in their box.  I looked up then to see Aaron sitting very still across the table from me, peering down at something on the table.

 

“Mom?” he asked.  “What’s this?”  I thought he was pointing to a little indention on our distressed kitchen table that’s become much more distressed under Aaron’s attention.  I brushed him off with a quick “I don’t know.  It’s just a little dot.   A little mark.”

 

Aaron wasn’t deterred.  “No,” he said.  “It’s sparkling.”

 

And I knew then what “it” was.  “It” was a tiny little piece of glitter from all the wrapping paper and glittery tissue paper I had used that day.  Of course, Aaron noticed this miniscule piece of glitter that to most of us would have gone totally unseen.  Or seen, but not cared about.

 

Not so with Aaron.  He was intrigued by the tiny sparkle that caught his eye.  He knew that it was worth exploring, so he did.  Furthermore, he hoped that I would do the same.  I was headed to the coffee pot when I stopped and turned around.  There sat Aaron, pointing to the itty bitty glitter, and I was drawn to that scene as I stood there for a few seconds.  I smiled as I realized that I should not miss this moment.  So I walked back over to the table, and I bent over the little glitter particle with Aaron.  We both smiled as we noticed the glitter’s tiny shimmer.  I realized that this glitter wasn’t round, but that it had definite sides.  I counted six sides, and so Aaron and I talked about the fact that this glitter piece was in reality a hexagon.  It was pretty and sparkly and more complex than either of us realized until we took the time to look at it carefully.

 

All day today I’ve been thinking about that glitter moment with Aaron, and what I would have missed had I dismissed his interest in favor of a coffee pot to fix and Christmas lights to unplug.  I would have missed a sweet moment with Aaron……a time of simple sharing…….a smile……a discovery.

 

At this time of year, especially, but at any time of year, I need to often remind myself to stop my fussing and flittering……and to take some time to see what Aaron sees.  Take some time to see who Aaron IS.  See the world through his eyes, with all its complexity and its beauty.

 

And to apply this lesson to so many other areas of my life as well.  Stop to see what’s around me that’s not so obvious, lest I miss out on some real beauty and some sweet moments.  Don’t let my schedule or my tiredness rob me of discovering some sweet moments with those I love…..or with those whom I need to know better…..or with those that I can help.

 

Coffee pots and other chores will always be there.  Glitter has a way of blowing in the wind and never being seen again.  I need to treasure it while I can……with Aaron, of course.

 

Peace Among the Bumps

Today was the day for Aaron’s scheduled MRI, a test being done because of a change in his seizures and the additional worry of an annoying Parkinson’s-like tremor in his right hand.  Aaron, thankfully, has never minded medical tests or doctor visits of any kind, so today he woke up happy and ready to go to his appointment.  Of course, we all know that these appointments are just a side trip to Aaron.  The real purpose that he is going, in his mind, is our restaurant of choice for lunch, and the trip to Wal-Mart or some other fun store that also awaits.  Therefore, on this day, his brain MRI was a bump in the road on his way to his true destination.

He came in my bathroom to check on my hair and make-up progress.  He had showered, dressed, and enjoyed his coffee.  He knew that we would leave around 10:00, so he was trying to busy himself with a movie or a game in his room……until he remembered that Mom sometimes needs hurrying, no matter how many times she says that she does NOT need another hurry-up reminder.

As he stood there watching my progress…..or lack thereof, in his opinion……I told him that if it worked out, we would get his hair cut on the way to his MRI.  IF it worked out, I repeated…..and then I progressed through the usual disclaimer list.  IF I could get ready in time (which he seriously doubted)…..IF Aaron was ready (and he let me know that he was!)…….IF Great Clips wasn’t crowded. 

“I know, I know,” he exclaimed as he left the bathroom.  But in no time at all he was back again….standing there staring at me as I fixed my face, as if his staring could or would hurry me forward. 

Finally, as he turned to walk away, he said, “Tell me when you’re ready…..are you about ready?”  He barely took a breath between the statement and the question.  I laughed and told him, “NO!  I am NOT about ready!”…..and he knew it was time to leave Mom to her face, all by herself.

Finally, I WAS ready and so out the door we went.  I had checked Aaron in online and when we got there, he was taken right away to a booth.  Most of the girls there know Aaron by now.  He’s pretty unforgettable after one exposure, trust me.  As he sat down, he immediately launched into what movie he was currently watching.  Godzilla!!  Loud talk ensued about giant lizards and triceratops and saving the world and wanting to know if she had watched the new Godzilla yet.

 
She asked Aaron if he was ready for Christmas and he loudly replied, “MOM?  Are we?”  And I said we were close.  Then he told her that his brother and sister were coming over for Christmas.  She asked if they live far away, and he said that his sister lives in Texas and…..”MOM?  Where does Andrew live?”  So I answered, and was aware that everyone in Great Clips was learning a lot about us.  She asked him if his hair looked the way he wanted it.  “MOM?  Does it?”  Oh dear.

And then came her innocent question.  “So Aaron, what are you doing when you leave here?”

And very matter-of-factly he answered her.  “I’m going to the hospital to get an MRI.”

The words seemed to hang thick in the air.  He wasn’t talking Godzilla, or eating out, or shopping, or Christmas at that point.  I wondered if she was sorry she had asked him this question, but how could she have known?  And good old Aaron wasn’t the least bit fazed by his answer.  He told her he was getting an MRI as casually as he had told her that he was watching Godzilla. 

So I tried to not let my thoughts faze me, either.  My thoughts were how normal Aaron made it sound that he was going to the hospital for an MRI…..how casual he seemed about it…..because he really is casual about it.  He’s not worried or alarmed at all.  He’s not sad or embarrassed.  And I know I must not be either…..for his sake as well as my own.

Yes, I sat there wishing that Aaron could have answered her question on this day with nothing more than something normal and fun to be doing after his hair cut.  I’m going to a movie……or I’m going Christmas shopping……or I’m going out with my friends.  Yes, I was going to make sure that Aaron had some fun to look forward to today.  But first….the MRI.

The hair dresser told Aaron she hoped it went well, and as we checked out I made a comment about how the doctor was looking to see if Aaron had a brain.  Aaron laughed and everyone laughed, and we walked out the door with Aaron off on his next subject.

But on the drive to the hospital, my thoughts were back there at Great Clips and my heart was a little heavy.  Then there it was……playing on our Christmas CD…..Amy Grant singing “Silent Night.”  The song that somehow always reminds me of my dad and that always tugs at my heart was not the song I was sure I wanted to hear right then.  I blinked back tears.

            Silent Night, Holy Night

            All is calm, all is bright…..

Sometimes all is not calm.  Sometimes all is not bright. 

            Round yon virgin, mother and child.

            Holy infant so tender and mild……

But I knew then, as I have been greatly reminded over the past few days, that the coming of this holy infant Jesus makes everything in my heart calm and bright.  His coming makes everything right.  Not easy, but right and well.  Calm and bright, because of the hope that He gives.

            Sleep in heavenly peace,

            Sleep in heavenly peace.

Peace that only Jesus can give, because He did come on that silent and holy night long ago. 

 
And there on busy Kellogg Drive with traffic on both sides and Aaron chattering away happily beside me, I was seriously filled with peace.  We still had the MRI ahead; Aaron still has his special issues; life may still seem unfair to some.  But there is peace, more than I have sensed in a long time. 

I see, more than I believe I ever have, what the coming of Jesus means to me personally and to this world.  Peace in the midst of fear…..in the midst of pain…..in the midst of frustration.  Peace that’s unexplainable except as I look at that little infant Jesus. 

“Come on, Aaron!” I said as we got out of the car in the hospital parking lot.  Let’s get this bump-in-the-road over with and go have some real fun!   

This is The Day……

This morning I read about the death of one of my most remembered college professors……Martha Grace Green.  Tiny little Mrs. Green was a powerhouse as she taught speech to hundreds of students over the years.  We quickly learned not to underestimate her due to her size, for behind that small stature was a take-charge woman who taught us the proper way to give a speech……and to speak – (NEVER say each and every!!!)…….and also to live.  For at the beginning of each and every class…..so sorry, Mrs. Green!…….the entire class recited Psalm 118:24.  “This is the day which the Lord has made; we shall rejoice and be glad in it.” 

Many memories of Martha Grace were coursing through my mind this morning as I went about my routine, getting ready to drive Aaron to meet his day group.  I wasn’t at all surprised to hear Aaron knock on my locked bedroom door as soon as I got out of the shower.  Aaron often stands outside my bedroom door when it’s locked, knocking and waiting on me to let him in.  He will sometimes stand out in the hall for many minutes, as he did this morning, while he waits for me to open the door. 

When I finally opened the door this morning, there stood Aaron, holding onto the two sides of the hallway wall with both hands, arms outstretched.  “Mom,” he said.  “I’m dizzy!”  He then proceeded to walk inside my bedroom to follow me as I got ready to dry my hair.  However, he was having a very difficult time staying upright.  He was more than a little dizzy.  He was flat out very dizzy, leaning to one side and then the next as he tried to steady himself.  He held on to my dresser and then to the bathroom door as he followed me. 

I knew right away what this severe dizziness was.  His Epilepsy doctor recently increased one of his seizure drugs, a new one that Aaron has been on for a couple months.  The doctor had told me that the most common side effect is dizziness.  I had hoped that we wouldn’t see anything of significance with Aaron, but my hopes were dashed as I watched Aaron try to walk back to his room…….looking like a drunken sailor. 

I made sure he was safely in his room, sitting at his desk watching a movie, and I returned to my bathroom to dry my hair.  As soon as I finished, I heard Aaron again.  This time I looked and found him crawling up the hall.  Yes, he was crawling up the hall and into my bathroom like a baby on all fours.  Poor Aaron!  It made me so sad to see him like that.  He lay on my bathroom floor, wondering why he was dizzy.  He listened to me explain about the side effect of the increased dose of his new seizure drug.  He was satisfied that he was experiencing a side effect……relieved that it wasn’t his movie that was making him dizzy. 

 
Eventually Aaron crawled back up the hall and into his bedroom, where I helped him into his bed.  “I wish I didn’t take that pills,” he said.  “I just wish I could take my other pills.”  My heart hurt for Aaron.  He dozed a little and I hoped that he would sleep off the dizziness and return to normal when he was awake.  I knew that he couldn’t go to his day group like this, so I notified them that Aaron would be staying home.  I called his doctor to report the situation and to see what he wanted Aaron to do.  And as I finished getting myself ready, I was mentally rearranging my day.  At this time of year especially, but really every day, I have my routine figured out for each day.  I know what I will do when I drop Aaron off to meet his group……what I will do first, second, third, etc.  I try to make the wisest use of my time as well as the wisest way to save gas as I plan what to do when.  What will I do today because I can’t do it tomorrow……because tomorrow is also planned out……and the day after that…..

The side effects of Aaron’s medicine today that showed up in his body also showed up in my schedule, and in my planning, and in my LIFE.  Which brought me to the point of remembering Mrs. Green and then inwardly smiling as I made myself quote her life verse once again.  “This is the day which the Lord has made; we shall rejoice and be glad in it.” 

I shall rejoice and be glad in it, I told myself.   A little change in my routine is no big deal.  I can readjust, reschedule, rethink, and be just fine.  Some days it isn’t so easy, granted, but today I can…..and I will……and I really have to…..just stop and be glad in it.  So as I put away mounds of folded laundry that I had set aside for too long……and cleaned both bathrooms……and talked to Aaron when he stirred…..I kept repeating Psalm 118:24.  I kept telling myself to heed its message…..to not complain or sigh…..but to rejoice and be glad in it. 

IN it…..no way around it or under it or over it.  IN the situation I was to rejoice.  And that included poor Aaron going to the bathroom after I had thoroughly cleaned his toilet and the floor……and finding myself on my hands and knees cleaning up an even bigger mess, with dear Aaron telling me he was sorry.  Dizziness and going to the bathroom when you’re a man don’t mix very well. 

Aaron is better now.  The doctor’s office called with new dosage instructions.  The bathroom is clean again.  Aaron even got some Sonic for lunch! 

I am better, too.  Better for having learned years ago a most valuable lesson from Martha Grace Green.  She had no idea…..or maybe she did……of the many ways that her many students would use that life verse in our own lives.  I certainly never dreamed that I would be helping my 30 year old special needs son crawl up the hall to his bed on the morning I learned of Mrs. Green’s death……and had her life verse repeating in my head over and over, giving me great encouragement.  I never imagined that this would be my life when I was a young college girl sitting in Mrs. Green’s speech class.

But Martha Grace had lived enough life to know that all of her students needed to have one thing ingrained in our heads when we left her class.  God has made each of our days to be what they are, and we are to rejoice and be glad in each and every one.  Sorry again, Mrs. Green!

“This is the day which the Lord has made; I shall rejoice and be glad in it.” 

Thank you, Mrs. Green.  Somehow you knew.

Martha Grace Green with her son, Steve
 
 

 

Birthday Weekend Highs and Lows

This past Saturday we celebrated Aaron’s birthday.  It was a big one, too, because Aaron turned 30 years old.  However, to Aaron it was a big birthday because every birthday of his is big in his book.  He had none of the qualms or sadness or excitement about turning 30 that most of us have……which is really good, I guess, because he doesn’t fret over age at all.  He frets over more important stuff, like are we sure we’re going to Texas Roadhouse and that Rosie can come and what time we’re leaving and can she come over to our house after dinner.  30 years old means nothing to him……supper and time with Rosie does. 

In fact, for months he and Rosie have talked about his birthday.  Every time I would see Rosie when Aaron was brought home from his group, she would ask me if she was going to get to come to Aaron’s birthday.  I think some of the other clients got tired of hearing about it, but Aaron and Rosie checked and double checked, over and over. 

A couple weeks before his big day, Aaron looked at the calendar and mentioned that his birthday was coming soon…..for real!  “Mom!” he exclaimed.  “At first it seemed like it was a long time for it to come!”  Now it was within sight, almost, and his excitement was building.  Aaron has never liked a ton of attention on that day, surprisingly enough.  He loves the food and the gifts, but he still doesn’t want singing or other attention focused solely on him.  He’s a mix of emotions around that day, for sure.

So I was surprised when he agreed for me to make cookies for him to take to his day group on Friday, the day before his birthday.  I offered, thinking he would say no, but instead he said yes…..and I was very happy.  It’s like having a child in grade school again.  I gave him cookie ideas, none of which greatly excited him……until I suggested M&M cookies.  He said a hearty yes to that idea, so last Thursday I made his M&M cookies.

He saw them cooling on the counter when he walked in the door that afternoon, but instead of sounding excited about them, he seemed a little hesitant.  I wondered if he would back out of taking cookies, not liking the thought of too much attention.  He barely looked at them when he walked by, so I pointed them out to Aaron with enthusiasm.  He flatly said, “It’s kind of crazy.”

“Oh, it’s not crazy to take cookies,” I told him.  “It’s a fun thing to do in honor of your birthday.”

“Well, what’s it mean to be in honor of your birthday?” he asked.

And I explained what it meant while he paced around the kitchen, acting almost scared of the cookies laying there.  I thought I gave a very concise, understandable explanation…..and then Aaron said, “But Friday is not my birthday.”

HaHaHa!!!  So typical Aaron!  Life should be in order, and celebrating his birthday the day BEFORE his birthday is very out of order.  Silly Mom, he seemed to be thinking…..but the next morning he did take the cookies and he shared them with his group.  Progress!

He didn’t know that I had planned tacos for our supper that night.  He had been wanting tacos for a while, so I thought that tacos would be a fun Friday night supper just before his birthday.  When he got home that afternoon, he grinned broadly when I reminded him that tomorrow was his birthday!  And before I could tell him about the tacos soon to come, he said, “Mom?  Can we have what I want for supper and not what you want?” 

I laughed and asked him what he would want.  He said tacos, and I loved the smile on his face when I told him that tacos was what I had planned.  His birthday eve was going well! 

The next morning, Gary and I both wished him a very happy birthday and he just replied, “Yeah,” as he walked away.  I made his usual apple pie that he loves, and he looked at it with very little visible excitement……but I know how Aaron’s mind works and I knew that he was taking mental notes of everything and enjoying it in his way.  The traditional birthday sign, the gifts and “30th” birthday balloon on the table, the apple pie…..all of it was important to Aaron, though he showed little outward joy about it all. 

We met Leroy and Louise, along with Rosie, at Texas Roadhouse…..but there was an hour wait, so we decided to go up to Outback.  Rosie rode in our van, she and Aaron sitting in the back, and talking the whole way.  No one minded changing restaurants and it worked out well.

After dinner, we headed to our house.  Rosie and Aaron rode with us again, talking as always.  It was a fun evening of pie and ice cream, Aaron opening gifts and cards, and plenty of talking again.  It was wonderful to see Aaron and Rosie enjoying their special friendship on this special day.  And Aaron loved having everyone go upstairs before they left so that he could show them his bedroom.  That’s what Aaron does!

 
 
 
Later that night, I told Aaron about all the many birthday greetings he had gotten on FB.  I told him that at that point he had 48 birthday wishes!  He smiled, and so I started reading some of the comments.  He patiently listened for a minute and then interrupted me to ask, “Are you going to mention all 48?”  I guess he had heard enough, so off he went to his room to examine his new birthday gifts and to unwind after a fun evening. 

The next morning, Sunday, he had a seizure at 4:30, and another one at 7:00.  Gary and I stayed close to him all day, and sure enough he had another seizure later that night while sitting in his desk chair.  He was fine and was able to get in bed after a while…..but as always, our emotions were mixed.

So happy he had a wonderful birthday……so thankful that he didn’t have a seizure day on his birthday……so sorry to see him seizing and then see the effects on his body and mind all day.  So thankful that he slept well last night and woke up being his perky self.

I saw a picture on Facebook this morning that said no matter what is going on, there is always, always something to be thankful for.  Being thankful is an exercise that all of us benefit from, and is certainly what God has told us to do. 

And thanks to each of you who love Aaron and wished him a Happy Birthday!!  Your love for Aaron blesses our hearts and encourages us more than you know. 

“Yeah,” as Aaron would say. 

 

 

Stability

Now there’s a good, solid word for you……stability.  I believe that all of us crave stability even in the midst of changes in our lives.  Some changes are exciting……new friendships, marriage, a new job, a new house, new baby.  Yet even in the midst of these positive changes, we desire an inner stability….a steadiness in our lives at the core of our being.  If we find ourselves facing unhappy changes, then our inner stability can be threatened and we can become very unbalanced.

I remember losing my balance a couple years ago on our stairs in the middle of the night as I let our dog out to go potty.  I hung on for dear life as I rocketed down the stairs after losing my balance.  Our thick wooden door at the foot of the stairs was my stopping point, my shoulder slamming into it full force.  That instability resulted in major shoulder surgery with months of recovery and rehab, and still today I have a shoulder that will never be the same again. 

I know a lot of people facing instability in their personal lives today…..we all do.  I just heard last night about a dear 33 year old mother of four that I know who had a major stroke on Saturday.  I’ve had several conversations in this past week with parents who are terribly hurt and worried about wayward children.  We and our other neighbors are helping our little elderly neighbor, Nora, move to assisted living after losing her husband to cancer in May.  A year ago she never dreamed any of this would be happening.  Actually, none of us knows what a day will hold for us when we climb out of bed in the morning, do we?

These kinds of instability, and so many others, can rock our world.  We can be shaken to the very inner parts of ourselves.  But I also know that even when we are surrounded by so much instability, we can…..deep, deep in our souls…..have a constancy that never changes and is never shaken.  Of course, I’m referring to our relationship with God.  When you have a personal relationship with the One Who is always constant, then you know that you can lean on him when life becomes unbalanced, for He never shifts or changes. 

The first part of Isaiah 33:6 jumped out at me this morning:  “He shall be the stability of your times.”  I know this chapter is talking about the future, but I also know that we can apply this truth to our lives as believers right now, today, because it’s a truth about God that never changes.  What are your times?  What are my times?  What times are we each living in at this point in our lives?  Whatever it is….wherever we are…..if we know the Lord, He will be the stability of our times.

And I think of our Aaron, who in so many ways forces Gary and I to fall back onto the stability of God.  Aaron’s Epilepsy and autism are issues that we deal with every day of our lives…..and just when we think we’re somewhat coasting along in our version of normalcy with Aaron, something changes.  It could be a behavior or a health issue, but change is fairly certain to be constant with Aaron….if that makes sense. 

Gary and I were slapped in the face with this reality on Saturday night.  Aaron had one seizure during the night before, which is not at all unusual.  He has had seizures in his sleep for years after enduring all sorts of other seizures, day or night, during his young years and into puberty.   We have grown accustomed to rarely ever seeing a seizure when Aaron is awake…..except for one at the theater with his group in September and one at the YMCA a few weeks ago…..and then again Saturday night.

Gary and I were watching the World Series, and Aaron was sitting in Gary’s desk chair talking to us.   I looked down at my notebook on my lap, and in two seconds Gary called my name.  I looked up to see Aaron having a seizure, out of the blue and totally unexpected.  Gary was able to keep him from falling out of the chair, and when it was over and Aaron was a little lucid, we eased him onto the floor.

Aaron was conscious but he wasn’t with us.  His eyes were wide, his arms and hands kept lifting up awkwardly as if he was reaching for something, and he couldn’t speak.  He tried to speak, but all he could manage was a smile.  That was pretty heartbreaking.  Finally he was able to muster one word, with effort.  You can guess what it was.  “Mom?” he said.  I had to smile to keep from crying.  Aaron must say “Mom” at least a hundred times a day…..or so it seems…..so it was fitting that this was the first word he was able to say. 

We kept him with us while we watched the game.  I tickled his back, which he loves, while he recovered.  Soon he was talking again about aliens and wanting to go to his room to watch his alien movie, which we reluctantly let him do.  It’s just that we have this fear now…..that started a few weeks ago…..as we see him edging back into sudden daytime seizures while he’s up and around. 

On the next day, Sunday, we let him sleep.  He woke up too late for Gary and me to go to church, but we wouldn’t have left him alone anyway at that point.  We later took him with us to Sam’s, which he loved, and on the way home I told him that I would fix the Lasagna that he had been wanting.  That made him very happy.  I invited Nora over for lunch and to watch some football, not knowing if Aaron would be nice to her this time or not…..but he was perfectly nice and funny…..and we had a wonderful afternoon.  Of course, we had to endure watching some of Aaron’s Mountain Monster show that he was watching before we could change the channel to football. 

For the rest of the afternoon, after Aaron had gone back up to his room, he kept bounding down the stairs and coming into the family room to ask Nora some important questions.  Questions like:  Would you eat an alien egg?  Did you know that those aliens have concentradik (concentrated) acid in their blood?  Why is there a Queen alien?  Have you seen aliens hang from the ceiling?   Would you watch the movie, Alien?

With each question, Aaron would bend over and rub his hands together with delight…..and Nora would laugh and laugh.  He didn’t really care about the answers to his questions.  He just wanted to talk and to share his alien discoveries and to be the center of things…..which he is without even trying.

Later, he and I played Skip-Bo.  You would never have known he had such a strong and unexpected seizure the night before.  Life with Aaron has returned to normal.  Just now he came downstairs carrying a little dirty carrot from the bucket of garden produce that I haven’t yet washed.  He was so excited to hold that carrot and to ask questions about the carrot….and to let Jackson sniff it, of course.  Typical Aaron. 
 

 
We have the continuity…..the stability…..of who Aaron is mixed in now with that cloud of fear concerning his unexpected seizure activity.  Instability is at the back of our minds.  I know that’s to be expected because we love Aaron and we are concerned for him.  But I’m so thankful that we can lean on God when we feel ourselves getting unbalanced with worry, and know that He is “the stability of our times.”  None of these developments surprise Him.  He is here with us and here with Aaron. 

We all learn the deepest lessons in the hard times.  We test the solidness of God when the ground upon which we stand is uneven and giving way beneath us.  Whatever you’re going through, I hope that you have experienced the stability of God in the center of your pain.  He is there for you, constant and sure.  I pray that I remember this truth in whatever lies ahead as well.