Getting Aaron

I ran into Great Clips this morning, taking Aaron for another haircut, shave, and beard trim, and who greeted us but Erin!  Erin has worked there for quite awhile.  Erin loves Aaron, if you follow me.  She’s a mom, and just a very sweet person who genuinely loves seeing our Aaron.  So it’s always nice when Erin cuts Aaron’s hair! 

Erin is one of these people who just gets Aaron.  She was genuinely happy to see Aaron as we walked through the door.  She talks to him while she cuts his hair, asking him questions and interacting so well with him.  I just love having people like that in Aaron’s life.

 
I can tell very quickly if someone gets Aaron or not.  You don’t have to totally understand Aaron to get him.  Is this making sense?  There are just some people who from the first moment they encounter Aaron, are relaxed and accepting of him.  And there are others who look at Aaron like he has an alien head or something…..although Aaron would think that having an alien head is pretty cool. 

For instance, Friday evening Aaron and I went to Little Caesar’s for pizza.  The line at the take-out window was long, so I decided that Aaron and I would go inside to grab our pizzas.  As I parked, I gave Aaron the usual directions…..wait for me, don’t barge in the door, if there’s a line then don’t push ahead, please don’t clap, and please talk SOFTLY!!  Of course, I was trailing behind him as I finished my instructions and he was barging in the door.  Oh well.

Thankfully, there was no line, so Aaron had free rein to walk up to the counter, lean way over and loudly say, “Can I have some breadsticks??!!”  I was tugging Aaron back while reminding him to talk softly and also reminding him that I already told him he could have breadsticks…..when I turned and saw the cashier’s face.  She was staring a hole through Aaron while she wore totally no expression on her face.  There was no emotion at all from her.  She looked at Aaron like he was perhaps an alien, but a very boring alien.  Like she was thinking, “Who are you and why are you in my store?”   

Aaron was very excited and happy, totally oblivious to this girl’s cold stare.  He continued to interrupt as he loudly asked if we could get TWO pizzas as well as breadsticks.  Her eyes went from me back to Aaron, with her impersonal cold stare once again.  At times like that, I’m very thankful that Aaron doesn’t get social cues.  This girl didn’t get Aaron, but Aaron didn’t get that she didn’t get him, so in that respect all was well. 

But all was not well in my spirit.  I wanted to give her nose a little pinch and then deliver a lecture, but of course I didn’t.  And I know that maybe she was having a bad day.  Yet really, deep down, I just know that some people get Aaron and some people don’t.

Tuesday for lunch, Aaron and I met his case manager at Applebee’s for his yearly PCSP meeting.  Barb, from Paradigm, was there as well.  Aaron is as comfortable with Barb as he is with me, so she understood Aaron’s whacks on her arm, his too tight squeeze of her hand, and how he helped himself to some of the chicken on her salad.  It was our server, though, whom I especially noticed.  She made eye contact with Aaron, smiled at him, listened to him, and was genuinely relaxed with him.  I even looked at Barb and whispered, “She gets Aaron.”  And Barb knew just what I meant. 

When someone understands Aaron, it’s as obvious as the nose on their face….like that little girl’s nose that I wanted to pinch.  J  But it’s very obvious to me when a person understands Aaron, and even accepts him just as he is.  Sometimes being in public with Aaron is embarrassing, honestly.  He’s large, and loud, and totally blind to the effect he has on others by being “out there” with some of his behaviors.  He might point at someone because of their hair or whatever.  He might turn around in the restaurant booth to see what the people behind him are eating or saying.  He might stop to stare at their plates as we walk out of the restaurant.  And if he goes to the bathroom by himself during our meal, it’s very interesting to watch people’s faces as he walks by, his head high and arms swinging, often making funny noises with his mouth.

So when someone gets Aaron, I find myself relaxing some.  It’s as if I don’t feel the need to explain, which I usually don’t do anyway.  I shouldn’t have to explain Aaron.  He is who he is, in all his boldness and uniqueness.  But I’m human and I feel my face getting red when Aaron does something a little crazy that draws attention to us.  It’s nice to see others understand him even if they don’t really understand…..to accept him…..and especially to enjoy him. 

Having Aaron in my life has taught me to try hard to show understanding to other families I see who are probably uncomfortable in public.  I remember when Gary and I ate dinner at a local restaurant with some friends.  Our table was near a mom and dad who were eating dinner with their special needs son.  I noticed their son immediately.  He was stimming in his unique way, and I just knew what they were feeling.  I could see it on their faces, especially the dad.  So I finally made eye contact with the mother, and I smiled at her.  I pointed to myself and shook my head yes.  She was a little confused, so I just stood up and walked over to their table.  I spoke to her and her husband, and told them who I was…..and that I had a son much like their wonderful son.  They both visibly softened and relaxed.  They were so happy that I understood and that I spoke to their adult son, and that I got it.  That’s what meant the most to them….the fact that I got their son. 

So when you’re out and about, and you see an Aaron…..or most likely, when you HEAR an Aaron…..just smile at the parents with genuine love.  Even when their Aaron might pull one of the lower boxes of cereal out of the huge cereal box display….and mom stands there with fallen cereal boxes all over the aisle….smile and maybe even offer to help pick them up.  Yes, that happened to me.  And the help of a sweet teenaged boy was such a blessing that day!

There are special people all around us who need us to get them.  There are families of special ones who will feel a huge weight lifted off their hearts if you are that person in their lives. 

I get it!  You can, too.

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

Headed Down Pity Path

I’ve been trying to decide how to write this blog post….or if I even should write it.  Yes, I think I should.  But how to do it in a way that doesn’t make Aaron look “bad” or make me look selfish.  Yet the truth is, Aaron isn’t bad but I am sometimes selfish.  I’m human and I get tired, but I also have to acknowledge where my roots often rest…..and that’s sometimes in soil that grows some undesirable attitudes. 

Tuesday night saw Aaron having four large seizures, so I was up four times with him.  I did sleep some between the episodes, which I often am not able to do, but still I was tired that morning.  I stayed up after Aaron’s last early seizure, and later I did the usual clean-up.  I stayed close to him as he lay on the couch for the rest of the morning, waiting to see if he had another seizure.  I had the laundry going and was able to do some other things while I sat there at the kitchen table.  I was on Psalm 18 that morning in my study time, which was perfect for me.  My favorite verse is there….verse 29.  “For by You I can run upon a troop; and by my God I can leap over a wall.” 

I felt very thankful as I sat there.  God seemed to be prompting me to focus on thankfulness.  I was thankful that Aaron was for the moment seizure free, warm, and safe.  Thankful that this wasn’t the day I was to take Nora to an important doctor appointment.  Thankful that my washing machine and dryer were just steps away, convenient and functioning.  Thankful that Aaron’s seizures aren’t far worse, as so many of our friends experience with their children.  Thankful that I don’t have to work, because it would be nearly impossible for me to do so.  Thankful for coffee.  Very thankful for coffee!

Later, Aaron woke up and he struggled to get off the couch.  After a few minutes, as he sat with me at the kitchen table, he told me that his arm was hurting.  I think he sprained it during one of the seizures.  Soon I asked him if he would want to eat, and we figured out together that some Cream of Chicken soup would hit the spot.  He was worried, though, that with his right arm hurting he would not be able to lift the soup spoon to his mouth.  Therefore, I demonstrated to him how he could eat by bending close over the bowl.  Aaron sometimes doesn’t like us to use our hands to demonstrate some action.  Don’t ask me why, but sometimes it irritates him.  So when I bent over to show him how he could eat, he snapped at me.  “You don’t have to show me how to do it by going like this….” he said with irritation as he copied my movement. 

It was as if he had thrown cold water in my face.  I knew that he was feeling terrible…..I knew that he has never liked physical demonstrations like this……I knew that his autism makes him very blunt…..but I also knew at that moment that I felt very hurt.  I just looked at him, and he knew very well that I was not happy.  I didn’t say a word, but got up and fixed his soup.  I got him all settled there at the table so he could eat, and I coldly told him that I was going upstairs to take my shower. 

For some time, my thoughts were headed down Pity Path.  How could Aaron treat me so rudely after all I’ve done for him?  It was very easy to rehash all of my sacrifices for Aaron, and very easy to nurse my hurt.  I was mostly silent toward him as the afternoon wore on around us.  He seemed to be fine, watching a movie, so I slipped down to Dillon’s to run an errand I had hoped to run that morning, but couldn’t because of Aaron’s seizures…..how I had to sit with him and didn’t get to accomplish what I wanted when I wanted……how my day was interrupted and my schedule trashed…..

See how it went with my thoughts?  Where was the thankfulness I had experienced earlier?  Where was my, “…..with God I can leap over a wall?”  I’ll tell you where it was.  It was buried under my self-centered thoughts, my tired body and mind, and my feelings of being very unappreciated by my son.  I had some major adjusting to do over the next hours, and some soul searching, as well. 

We all have many moments of feeling just as I did on Tuesday afternoon.   As a parent, spouse, sibling, friend, worker on the job, volunteer at church…..no matter where we are…..we will get our feelings hurt.  And as the mother of a special needs child who also has autism, it’s easy to be hurt a lot.  Aaron doesn’t have filters or feelings like we do.  He must be reminded over and over to be kind, to think of other’s feelings, to react in a nice way instead of a blunt or harsh way, and on and on.  He is very self-centered, and this is a huge reason why it doesn’t work if I am that way, too. 

I think it was important for me, personally, at that moment to step back and remove myself from Aaron and the situation.  The danger I faced, though, was in nursing my hurt instead of focusing on what God would do.  What I allow my thoughts to focus upon will determine my attitude, and will even determine whether I sin in the situation or grow in it.  To be hurt was normal.  To let my roots sink into the hurt as I planted myself in it would not be beneficial or right. 

Christ gave up a lot for me.  How often do I react to Him with unthankfulness or pride?  He didn’t hold on to his position as God’s Son, but emptied Himself of all that and became sin for me.  That’s the best example I can follow as I experience the hurt and the tiredness of being a special needs Mom….or any of the other many roles I have in this life.  It can’t be about me, or I will be continually frustrated.  It must be about honoring Christ, and caring for Aaron.

Understanding how Aaron feels after seizures…..understanding his autistic way of viewing the world….is very necessary, as well.  So is training him and reminding him of his actions, and how they can hurt or help others. 

Understanding how I feel after Aaron’s seizures…..understanding my sometimes selfish way of viewing the world…..is also very necessary.  Both must be recognized and dealt with before being allowed to get out of hand. 

Well, back to my verse in Psalm 18.  I didn’t exactly leap over that wall with God.  He more or less had to lift and shove me over it.  I wanted to sit at the base of the wall and lick my wounds, but He wouldn’t let me.  I’m glad for that!  Glad that He is patient and persistent with me.  Glad that He shows me His love.

Just like we have to be with Aaron.  It won’t be the last time, either.  For me or Aaron, either one. 

I’m Glad You Took Care of Me

Aaron had two doctor appointments this week.  On Tuesday we went in for his yearly eye exam, and on Thursday we went to the dentist to have his teeth cleaned.  He very much prefers the eye exam.  For one thing, nothing hampers him from talking to his heart’s content at the optometry clinic.  No one has their hands in his mouth, doing uncomfortable procedures, and so he can talk and talk…..which he definitely did.  He charged right up to the check-in counter at the eye clinic and didn’t even say hello before he started telling the two receptionists all about Fallen Skies and alien skitters and the skitter-in-charge, named Cochise.

It’s just amazing how Aaron will launch right into his tall tales without one word of hello or a few words of explanation to get him started.  Nope, he just barrels right in to his review of whatever is currently on his mind, oblivious to the confused looks of those to whom he is talking.  Or he’ll mention his day group, Paradigm, or someone at Paradigm, as if these ladies know all about this place and those people……which they don’t, and so once again they are confused.  This is why one of my job descriptions is that of interpreter.  I definitely multi-task big time as I try to sign forms, go over insurance, check for information changes, and explain skitters. 

Thankfully these ladies were delighted with Aaron.  Their give and take with him only encouraged him to continue with his stories, and I had to urge him to finally hush and follow me to a chair.  His forced silence was short lived.  He was immediately called back to begin the exam, so he hardly missed a beat before he was telling a new person about Falling Skies and skitters and that he broke his glasses the week before.  He made me laugh as he did one of the eye tests, putting his hands up to the machine as if he was gazing at something exciting.  Maybe he thought he would see another skitter? 

 
The eye exam went well with patient Dr. Fisher……our friend, Brandon.  Of course, Aaron just had to tell him that he got in trouble for calling Stephanie a babe at Paradigm.  And there I was, proud Mom, wondering if I should explain.    Then it was on to get his new glasses.  Trying on glasses is Aaron’s least favorite part of this process.  It ranks right up there with trying on clothes.  He just doesn’t want frames that make him look like Clark Kent.  After that fact is established, he could care less.  And going over insurance is really boring to him.  Again, two understanding technicians and lots of laughs helped tremendously.  Soon we were eating lunch at Chili’s and all was great in Aaron’s world.

Thursday was teeth cleaning day.  The dental exam is really, really Aaron’s least favorite thing in the world to do.  Most of us don’t like teeth cleanings, and Aaron is no exception.  It’s uncomfortable for Aaron, plus he can’t talk and so it’s a long process of frustrating scraping and rinsing and forced silence.  I used to go back with him, but now I let him go alone.  I urge him to be mature…..plus it’s best for me to have an element of ignorance about what really goes on back there, on Aaron’s part.  I know he gets frustrated and impatient.  Once he bit the hygienist.  He said it was an accident.  I wasn’t totally convinced. 

Another part of it is that Aaron doesn’t want us to talk about how he doesn’t do a good job with brushing his teeth.  That’s why we have gone every four months for cleaning, and now have decided to go every two months.  Aaron starts getting angry if I talk about his teeth at home, if I try to help him at home, or when the dentist or hygienist is talking to me about Aaron’s teeth.  We try to keep it low key but with instruction for him, too, yet nothing really helps. 

Later, as he took full advantage of the Pizza Hut buffet, we mentioned his teeth just a little.  Most of the time we talked about whatever entered his mind as he thoroughly enjoyed the pizza and the salad.  I laughed at the dressing on his nose and the look on his face, and I had to tell him many times to talk softer as he was talking in high gear once again, like he was making up for the lost moments when his mouth was silent at the dentist’s office. 

 
We went to Sam’s for a few things.  On the way home we stopped at my elderly friend’s apartment.  Aaron hadn’t seen Nora’s new place.  I dropped off a sweater to her that I had repaired.  She was delighted to see Aaron.  Once again I was the interpreter as he told her about skitters and Paradigm this and that, and she stood there clueless.  She gave him a piece of candy, and he thanked her.  “Are you glad I said thank you?” he asked me as we left.  “Are you glad I told her hi?”  I told her that I was very thankful that he had practiced his manners.

Manners were a little absent later that night, however.  A lot absent, actually.  Like a light switching off….or on…..Aaron’s mood changed dramatically.  We haven’t seen that kind of change in a long time.  He instantly went from happy to angry as he prepared to go to bed.  He decided to focus on his teeth. 

“Mom, you make me feel like I’m bad in my mouth!  I’m not going back to them!!”

He slammed our bedroom door, and he slammed his bedroom door.  Then I heard him stomping up the hall, where he barged in our room yet again.  “I’m not going back to them!” he angrily said….referring to the dentist.  And he called me a name, several times.  This was surprising because Aaron has been so mellow lately.  I wondered if this foul mood was related to his new seizure drug, which can cause anger.  Or was he going to have some seizures.  Often, mood changes precede seizures. 

And sure enough, he had two hard seizures during the night, and another one yesterday morning as he lay on the couch.  He chewed the end of his tongue again, and wet the bed.  I wondered what he thought as he silently watched me yesterday morning in his bathroom, on my knees cleaning up the pee that was on the floor around the toilet.  He was unsteady when he got up and he told me this had happened. 

I thought about his anger the night before, and the name he had called me.  It would be easy sometimes to show anger right back to him, and I certainly have done that.  But that night before I had remained mostly silent, knowing that it was futile to reason with Aaron when he was so angry.  Now before our issue was resolved, I was on my knees cleaning up his mess…..because I love him.

Just like God loves me, I thought.  Here, once again, in my life with Aaron I have another example of God’s love for me, expressed unconditionally.  God loves me when I’m happy…..He loves me when I’m angry……and he cleans up my messes and he soothes my heart over and over again.  How can I do less with Aaron?

I washed all of Aaron’s bedding during the day as he slept on the couch, and was reminded again of God’s love for me as I love Aaron.  I’ll be doing this again, too, and so will God with me.  Faithful love is what God shows to me, and is what I need for Aaron, as well…..even with the still fresh reminder of Aaron’s anger the night before. 

Last night, when Aaron could no longer keep his eyes open, I helped him get in bed.  His covers were all clean and fresh.  He was ready to get in bed when he remembered that he needed to fill out his notebook.  He had written the time that he got up that morning, so now he wrote the time that he went to bed.  It was 9:52.  Then he asked me to put his snake and his skunk in the bed.  I laid Mr. Snake under the covers and Aaron stood there staring at him.  Then he told me to scoot him over a little, which I did.  Aaron stared again.  And I had to move Mr. Snake once more until he was finally in just the right place.  Then the skunk went in the bed, just right, and finally Aaron got slowly under the covers.

He gave a huge smile as he felt the weight and the warmth of the covers on his tired body.  We hugged and Aaron smiled again.  Then he laughed, and I asked him why. 

“I told Dad I’m glad you took care of me when I had a seizure,” he slowly said. 

All thoughts of anger and name calling vanished at that moment.  I was thankful for the privilege I have to take care of Aaron, and I told him that.  He smiled again as I pulled the covers up until just his smiling face was showing.  I turned off his light, and I closed his door…..and I thought of what a difference a day can make. 

What a difference knowing God makes, too.  I’m glad God takes care of me so that I can take care of Aaron.  And I’m glad that He continues to use Aaron in my life to teach me so many things about Himself. 

Our SUPER Hero

The first one was at 11:46.  The second at 1:33, and the third at 2:48.  Aaron’s seizures last night…..and how I hate them!  I was able to give him some Ativan when I heard him stirring about an hour after the first seizure.  I think the Ativan helped the next two seizures not to be as severe as they usually are.  I lay in bed during those hours, comfortable but unable to sleep as I listened to Aaron through the baby monitor.  I used some of that time to pray, and to ask God to ward off my fearful thoughts about Aaron and about our world.  I prayed for family and for friends as well. 

I don’t remember exactly when Aaron got up from bed this morning, but I am sure that he knows.  I am also sure that he wrote it in his special notebook that holds those important times that he faithfully records, every single day.  He looked more than a little worse for wear as he came into the kitchen, staring at me sitting at the table.  He told me that he didn’t feel well and I told him that he had some seizures, which he never remembers….thankfully.  He took his pills, and I gave him something for his headache as well.  Seizures cause such awful headaches.

Poor Aaron.  Today was movie day with his group, which he loves, and which he would now miss.  So much for his extra-large popcorn with extra butter and extra napkins and anything else extra that Aaron can grab…..such as toothpicks.  But he was comforted later after I texted Barb to ask what movie they were watching today.  I told Aaron that the movie today was to be Sponge Bob, and Aaron lifted up his hands in surrender as he backed up and said, “No!!  Sponge Bob is NOT my favorite!” 

Some things work out like that for Aaron, and some things just don’t.  We can’t pick and choose on what day his seizures will occur, of course.  It’s just extra sad when he has to miss something special because he’s too sick to go, again. 

I was tempted to just stay home all day with him, but as the morning went on he seemed to be feeling pretty good.  He came into my room and I asked him how his head was feeling. 

“It’s becoming fine,” he answered.  I just love the way Aaron phrases responses like that.  It’s uniquely Aaron, and it makes me stop and smile.  He smiled when I asked him if he wanted to go to McDonalds for lunch, and use his gift card that Aunt Sandra gave him for Christmas.  I even got brave and decided that we would eat inside the restaurant, hoping that he didn’t have a seizure there.  He didn’t.  He was mostly slow and quiet, which is typical on the day following a night of seizures.  He lacks his usual zip.  He’s rather flat.  But he did notice the little girl sitting in the booth nearby with her grandmother, and when she noticed him, they waved and Aaron smiled.  It made me thankful that I had decided to go inside to sit.
 

We went to our vet for dog food, and there in the Dillon’s parking lot we saw this huge truck/limo that made us both laugh, and become very curious.  Aaron wanted me to drive behind the truck/limo so that he could try to decode what the personal license plate said.  And inside Dillon’s, as I chose a head of lettuce, Aaron found his favorite……artichokes!  He stopped to look at the Chinese food in the deli as he always does, and as always I had to tell the server that we weren’t buying…..only looking.   Of course, we had to stop to look at the lobsters, shrimp, and crab legs on ice in the seafood department.  It’s best not to be in a hurry if I go to Dillon’s with Aaron.

 
But it pleased me to see him being happy over such mundane things that we take for granted…..especially on this day after his nighttime seizures.  Giving him a little fun doesn’t cost me much at all, but it sure brings priceless joy to my heart, and to his as well.

Just two evenings ago I was telling Andrea on the phone about Aaron’s seizure that morning.  It always makes the kids sad to hear about his seizures.  I told Andrea, though, that it was such a blessing that Aaron doesn’t seem sad over his seizures, really.  He doesn’t talk about all the things he can’t do or how hard it is to be different.  He doesn’t seem to grieve the loss in his life that makes the rest of us sad for him. 

But don’t you know, that very evening, Aaron said, “Mom, I wish scientists could stop my seizures so that I could be normal.”  This comment stopped me in my tracks, and left me struggling for words as Aaron repeated it again in case I hadn’t heard him.  I assured him that I understood, and that I wished scientists could stop his seizures, too.  I walked upstairs with my load of clean towels, swallowing the lump that was suddenly in my throat.  So Aaron does sometimes think thoughts that he doesn’t often share.  He does wish that he could be “normal.”  I was thankful that he expressed himself in a way that he usually doesn’t…..in a way that he finds hard to do.  But his simple comment made my strong outward reserve crack some, and I had to walk away quickly lest he see my tears.

A couple months ago, Aaron excitedly shared with me yet another story from a movie he was watching.  Suddenly he paused as he described the super hero, and he told me that this hero looked like this:

 
This pose was so out-of-character for Aaron that I just laughed and laughed, which delighted Aaron.  He didn’t even mind that I took his picture.  There he was, Aaron posing as this certain super hero.

In reality, though, as I’ve pondered that funny pose, I realize that Aaron truly is a hero.  At least in my book he’s a hero.  He’s a hero for enduring so much pain and so much hurt and so much disappointment over the years……so much physical and emotional hardship.  Yet he continues to go through each day in his Aaron way, hardly ever complaining.  He pushes through each day despite his seizures and his social difficulties.  He sure is an example to me when I feel overwhelmed or tired or discouraged.

I know many parents of special children who would agree with me on this when it comes to their kids, no matter their age.  I hear their stories often.  Children with seizures, Downs, autism, and so many other issues.  Children who just pick themselves up and keep on truckin’.  And parents who love them with all their hearts.  They are heroes as well, and they are all around us. 

So today, and every day, I know that we live with our special SUPER hero.  He teaches me not to give up, on him or anything else in life.  We’ll keep plugging along beside Aaron, trying to care for him and provide for him.  Trying to understand him and to instruct him, especially when his mouth or his hands get out of line. Trying to explain him when necessary, and to defend him if needed. 

And trying to help him believe that he IS normal and wonderful and special……just like a SUPER hero should be. 

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.

 

 

 

 

 

Laughter, Fussing, and Frowning

Aaron came into the kitchen early this morning, before Gary left for work, and the very first words out of his mouth…..the. very. first. ……..were, “Mom, so you’re saying that War of the Worlds was an old movie?  It was an old movie that had been made before?”  It was as if he was continuing a conversation that we had left three minutes ago, instead of nine hours ago, when he was going to bed.  I had to chuckle, which was better than crying.  You see, all weekend Gary and I endured endless discussions about War of the Worlds…..and Terminator.  Take your pick.  We were completely saturated with both movies, to the point that several times during the weekend we had to tell Aaron, “Enough!”  No more talking of these movies for the foreseeable future…..which wasn’t nearly long enough, in Aaron’s book……and so we would soon find ourselves once again immersed in movie discussions. 

Thankfully, Aaron moved right on to his next topic of interest.  “Mom, I woke up at 5:00!!”  Of course, I asked him why as he stood there staring at me waiting for me to ask him why….and he continued.  “The covers on the right side of my bed were not normal.  They were not like the covers on the left side.”  He again stared at me as he waited for yet another response, so I gave him another response by asking him why the covers were not normal and he gladly answered.  “The covers on the right side were ALL the way out!!  The covers on the left weren’t all the way out.”  So this is what I heard on the monitor at 5:00 this morning.  Aaron cannot tolerate abnormal covers on his bed, so he was up and about re-adjusting the covers so that the right matched the left.  And I laughed at Aaron’s description of his early morning effort to normalize his bed, and he was quite proud that he had made mom laugh, though he didn’t understand…..or care to understand….why.

Soon Gary was down, putting on his coat to leave for work, and Aaron immediately launched into his War of the Worlds observation.  Gary was still saturated by two and half days of movie talk, so he answered Aaron’s question that he had just asked with a little humor……which Aaron did not appreciate.  Aaron knew we were tired of movie talk, and he interpreted Gary’s humor as being insulting…..and so Aaron in turn insulted Gary……and we in turn fussed at Aaron…..and our day was off and running in typical fashion.  Laughing one second…..frowning and fussing the next. 

These ups and downs are true for all parents.  It seems more exaggerated with Aaron, at least to us, because of his age and his persistence.  He is not easily deterred from the paths of conversation that he sets out on, or the paths of behaviors.  We so wish we could detour him from some of the things he says and the actions he takes.  I wish this every time I read another incident report from Paradigm, where Aaron has taken the path of anger and rudeness.  He gets in so much trouble when he is trying to “tease” someone, or when something or someone sets him off. 

But then he can be so hilarious sometimes, and so endearing.  This weekend, he was very exhausting with all his movie talk…..following us around the house as he talked, or finding us downstairs watching football.  But then he would come out with something that made us laugh.  Like the football games, which he observes in his unique Aaron way:

          “So who are you guys voting for?”

          “Does the team you’re voting for have the most points?”

          “Does that football player have a pacifier in his mouth!!?”  (It was the

          mouth guard.  HaHaHa!!!)

          “I bet the man who taught the Carolina Panthers is not very happy that they only
          have 17!”
 
His humorous comments were like a breath of fresh air…..a wonderful break from War of the Worlds or Terminator.  When Aaron and I played Skip-Bo last night, I had to once again forbid any further movie talk.  We listened to Disney music on Pandora, and Aaron had fun trying to guess what movie the songs were from.  He would cock his head to the side in deep thought, and I knew he was re-living those old movies.  I enjoyed his reactions, and I relished another movie reprieve.  We had two games of peace, and then the second it was all over, he launched into more movie talk.  NO!!!!

We went to McDonalds for lunch yesterday, and again urged him to think of other things to talk about.  He was mostly quiet as he ate all of his burger first, and then tackled his French fries.  He will only eat one food item at a time.  He methodically ate every French fry, one at a time, by dipping them slowly in his very, very full ketchup cup and then taking a bite……dipping slowly again and taking a bite…..over and over.  At least it kept him busy and not talking about movies.  And then he spied a little girl looking at him and he stared back.  I was nervous.  Would he stick out his tongue or be nice?  We never know.  But he smiled at her and then said, “I was smiling towards the little kid.”  I was relieved at his sweetness, wishing it could always be the case with Aaron.

Last night as we watched the Broncos losing the football game, we heard Aaron’s loud thumping down the stairs.  Gary and I both commented about it, how soon it was that Aaron had just been downstairs to talk more about movies and here he was coming down again.  It’s wearying, really.  Aaron bounded in the room and stood between our chairs, looking down at me as I sat there looking up at him…..waiting with dread for his latest movie verbal digest once again.  But this time, Aaron wanted to hand me his nearly empty bag of Skittles…..the bag that he had been eating out of all weekend.  In the bottom of the bag were several remaining Skittles.

“Here!” Aaron said as he held the bad toward me.  “You can have the rest of these, Mom.”  I thanked him but told him that I really didn’t want them right now, and that he should eat the last Skittles.

“No!” he insisted.  “I want you to have them.”  And with that, he put his hand in the bag and dug out the few remaining candies.  He put his hand toward me and I held my hand out, receiving his gift.  I really don’t enjoy eating something that Aaron has fingered as much as he had those Skittles…..because I just don’t know where Aaron’s hands and fingers have been, honestly.  But God has blessed me with a strong immune system, so I took the Skittles, hiding from Aaron my hesitation. 

I laid them on the table beside me, and Aaron picked up a couple of the orange ones because they look green to his color blind eyes…..and he wanted to show Gary the new green apple ones……but he realized they were orange, so he put them back in my little pile.  More handling, I thought.  But while he stood there watching me, I picked them up and ate them.  This made Aaron happy.  He wanted to share with me his special candy, and he knows that Gary doesn’t eat candy, so I was the recipient of every single Skittles…..germs and all.

And today I’m alive to tell about it.  I don’t even have a sniffle or an upset stomach.  But I have the memory of Aaron’s sweet sharing.  He shares with us in so many ways, in many different colors and flavors, his life and his take on it.  Like I said earlier, we can be laughing one minute, and then frowning and fussing the next.  There are so many ways we wish that we could change our big, loud, rough Aaron.  But then there are many ways that we wouldn’t change a thing about our kind, sharing, funny Aaron. 

Yet he comes as a package, as all children do, and we know that we have to love all of him.  We DO love all of him.  We cherish the positive and we work on the negative.  We ask God for wisdom, and we ask others for forgiveness or understanding when they are affected by Aaron’s behaviors.  We share life with Aaron, usually Aaron’s way.

Laughter, fussing, frowning…..germs and all.  It’s worth every part….every color.