Month: June 2017

God’s Backing

Last Wednesday night, Aaron and I were watching a DVD.  I heard a sound coming from him as he sat in his favorite chair.  I looked over to see his head arched back in that all too familiar way, his arms raised above his head, and his face starting to contort into a seizure.  Surprise seizures like that are always a shock, no matter how many times we see them.

I jumped up and removed his glasses, grabbed some paper towels, and noted the time for our log book.  Gary was upstairs by then, so we just stood beside Aaron to be sure that he was all right.  A two minute seizure is typical for him, but sometimes it seems to take forever as we wait for it to be over.

Aaron’s seizures are most often at night, though more and more are occurring at other times.  Night seizures are actually more dangerous, other than the risk of falls during day seizures.  And nocturnal seizures prevent us from seeing the postictal stage, which is the time after a seizure when Aaron is recovering from the effects of it.  During the night Aaron just sleeps, but during a seizure when he is awake we are there to see him coming back, so to speak……becoming aware of his surroundings and of us again.

It was between 10 and 15 minutes after this seizure that Aaron’s eyes opened and he lifted his head from the back of the chair.  It takes some time then for Aaron to register anything.  He still can’t talk for awhile after his eyes open, and he doesn’t respond to things we might tell him to do.  He’s just really out of it for some time.

On Wednesday night I sat on the ottoman where Aaron’s legs and feet were resting.  I rubbed his legs and talked to him.  His eyes were huge as he just stared at me.  He kept those big eyes glued on my eyes, and I just looked back at him as I softly talked to him.  He didn’t respond……only stared with that blank gaze.

I decided to move my head from side to side.  I moved to the right, and Aaron’s eyes moved to the right.  I moved to the left, and again his eyes followed me.  I repeated the moves, and so did Aaron.  I smiled, but he just continued staring.

I sat there looking back at Aaron, assuring him that he was fine.  But I was thinking of how I would hold little baby Aaron in my arms as he fed, or as I rocked him and sang to him, or we just snuggled.  I remembered how he would follow my eyes and my face with his precious little baby eyes, fully trusting me as his mama.

My fully grown man of a child…..still my Aaron……was following my eyes in much the same way that he would follow my eyes as a little baby in my arms.  Just as he trusted me as an infant, he was still looking to me and trusting me in those moments following his seizure.

I tried to blink my tears away before Aaron became alert enough to notice them.  I didn’t want to scare him……plus Aaron has no appreciation for tears.  He would call me a cry baby when he could finally talk, of that I was certain.

But I couldn’t blink away the memories of Aaron as a baby as we continued to sit there in a kind of stare down.  I was like any excited mother after the birth of her firstborn.  I felt that no woman ever, past or present, had ever felt as blessed as I felt when I held and examined my perfect baby son.  I was so thankful and so full of joy at this precious gift Gary and I had been given!

Never ever even once did I dream that I would be sitting on an ottoman staring still into the eyes of my son, but this time my adult son who had just had one of many hundreds of seizures he has had over the years.  Why would I have ever looked down at my baby boy and thought, “I wonder if someday Aaron will have Epilepsy or autism?”

We all wonder if our children are going to be healthy, but a healthy baby like I had lends itself to a confidence that health will continue.  So when Aaron was older and we started noticing some differences in him……and definitely after his first seizure……our reality changed, big time!

But what didn’t change was our trust in the God we know.  Gary and I knew the character of God.  We had walked with Him long enough to know Him well.  And that knowing led to instant trust……trust that our Father knew what He was doing, even if we didn’t.  It doesn’t mean we didn’t cry, especially me.  It doesn’t mean that over the years we haven’t been very tired, very discouraged, very worried, very sad.

But God always, always, always reaches out to us with a personal touch from Scripture…..a still, soft voice in our hearts……a comfort that can only come from the Holy Spirit…..a peace that truly passes understanding……a promise that we have read a zillion times but suddenly is just for us at that moment.

Just the day before that latest seizure, listen to what I read in Psalm 138:2.  I love the New Living Translation of this verse:

“I praise Your name for Your unfailing love and faithfulness; for Your promises are backed by all the honor of Your name.”

God doesn’t make groundless promises.  His promises are backed by ALL the honor of His name.  And that’s all we need.  We don’t need explanations or answers or reasons or guarantees.  The honor of His name is enough, totally enough.  He is sovereign, in charge, and full of love for Aaron and for me and for Gary.

So I thought of all this while Aaron was staring at me and I stared back.  I had a little prayer meeting there, with some praise for His unfailing love and faithfulness…..and for His dependable promises.

God and His promises are there for all of His children, just when we need Him.  I’m so thankful for Him and for His certain plan in my life and in Aaron’s.  He has proven Himself more than enough for us more times than I can count.

I got up from the ottoman finally, and began to get things ready for us to head up to bed.  Aaron still stared at me.  Finally I could tell that he was coming around…..was more alert.

And of course, many of you would be able to guess the first word out of his mouth when he could talk again.

“Mom?” he said.

Why was I NOT surprised at that?!

Doctor Visits, Aaron’s Way

Doctor visits with Aaron are rarely dull.  Two visits in one week were pretty much over the top.  I posted this on my FB page (https://www.facebook.com/hesaidwhat84/?ref=aymt_homepage_panel), but wanted to share them here as well.

I took Aaron to his yearly eye exam today. God bless Aaron’s eye doctor. Next week I’ll be saying, “God bless Aaron’s dental hygienist,” but today all blessings go his eye doctor and to the staff. Oh, Aaron isn’t mean. He just has a very difficult time understanding what the doctor needs from him…..how to express what he is seeing or not seeing clearly…..opening his eyes wide…..not leaning back from every instrument that comes toward his eyes…..things like that. There was one very funny interchange, though, during the exam. You know how the doctor wants you to tell which lens helps you to see the letters on the wall the clearest.
Dr. Nelson: Aaron, is number one better? Or number two?
Aaron: Number one.
Dr. Nelson: OK. Now which is better? Number three, or number four?
Aaron: Number one.
Dr. Nelson: Let’s try again. Number three, or number four?
Aaron: The first one.
Dr. Nelson: You mean number three….here…..or number four…..here.
Aaron: Number one.
Dr. Nelson: Let’s try these. Number five, or number six.
Aaron: The first one.
Dr. Nelson: Let’s try number seven…..
Aaron: Number one.
Dr. Nelson: OK, let’s not do numbers anymore. Is this one better, or this one better?
Aaron: Number one.
HaHaHaHa!!!!!! How I wanted to belly laugh!! I do believe that number one was the winner, don’t you??!!

 

Doctor Visit, Take Two

Today Aaron had an appointment with his Epileptologist. I call it Doctor Visit, Take Two.
Aaron was very drowsy after taking his morning meds. In fact, so drowsy that I told him as we entered the exam room to just sit in the chair, not up on the exam table. But NOOOO, Aaron thinks that one MUST sit on the exam table when in the exam room. Silly Mom.
The nurse had come in the room and had begun asking me questions about Aaron’s meds and dosages. Aaron, in the meantime, stood facing the exam table.
Nurse: So Aaron is on ——-?
Me: Yes. Aaron, do not climb on the table. Turn and SIT on it.
Nurse: And what is his dosage of ——-?
Me: 200 mg. in the morning and 200 mg. at night. Aaron, why are you climbing on the table? Turn and SIT on it.
But it was too late. Aaron was now on the exam table on all fours, his rear end where his face should be, with nowhere to go on that small, narrow table. More like a dog at the vet.
Nurse: (Unaffected) And is he taking ——-?
Me: Yes. Aaron, be careful! What are you doing?!
Aaron was now slowly turning around, still on all fours, and crumpling the paper that covered the table.
Nurse: Aaron is also taking ——-?
Me: Yes. 1,000 mg. in the morning and 2,000 mg. at night. Aaron, for crying out loud, would you please just sit down the right way?!
Nurse: (Still unaffected) So he’s still taking ——-?
Me: Yes, 1 mg. at night.
Aaron was now sideways on the table, shoes kicked off, mission almost accomplished. And I was laughing, really laughing, at this whole scene……which Aaron thought was pretty cool, because at least silly mom wasn’t upset in a mad way. So Aaron then got fully turned around so now his face was finally where his rear had been, and he decided to sit Indian style on the exam table.
Nurse: Any anxiety?
Me: Aaron or ME???!!!
Nurse finally smiled as she left the room.
WAIT!! No exam??!!

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Helping Dad

Gary has been in the process of putting up a small shed in our back yard, one that can hold our garden tools and implements.  Aaron has been very interested in Gary’s work.  Last Saturday, Aaron knew that Gary was going to be once again laboring out in the heat.  He wanted to go out and help Gary, so after Aaron got his morning routine accomplished, he walked with purpose to the shed site to see what he could do.

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Aaron doesn’t have great manual dexterity or skill, but Gary didn’t say a word about that fact.  He welcomed Aaron, even as he was searching in his mind for a job that Aaron could help with at that particular point. 

He told Aaron that he could help by handing him the screws when he needed them as he worked on securing the floor to the frame underneath.  But for some strange reason, Aaron said that he didn’t want to touch the screws with his hands.

Hmmmmm……

So Gary told Aaron to hold the box of screws, which Aaron was very happy to do.  When Gary needed a screw, he would reach into the box that Aaron held and get one out. 

Now Gary didn’t really need Aaron to hold the box of screws.  Gary could have easily just scooted the box around and keep it handy as he worked.  But he would never have hurt Aaron’s feelings by not giving him a job to do. 

There Aaron sat, in the hot sun, holding the box for Gary.  And talking, I’m quite sure.  Talking about his Star Wars game…….his Star Trek television show that he is watching……the latest movie he has decided to watch……and any number of other things that really only Aaron is interested in.

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I’m also quite sure that Gary would have much preferred some solitude outside……time to work alone after a long week of endless people and situations at work…….time to hear the birds……time to ponder his own thoughts.  But Gary saw beyond his own desires, and saw Aaron’s.  He knew how much Aaron wanted to help and he knew how much it would mean to Aaron to do so.

I believe, too, that Aaron wanted to do a man’s job.  Time with a man, especially time with his dad, fills a need in Aaron that he probably doesn’t even recognize. 

It did my heart so much good to look outside and see the two of them working together.  It did my heart good because I knew that it was doing Aaron’s heart even better.  And it was very pleasing to Gary to give Aaron that opportunity, but even more that Aaron wanted that opportunity to help. 

Such a simple time it was, and not one that lasted all that long.  But the impact on Aaron was huge, one that will last much longer than the actual helping did. 

Aaron walked inside later.  “Dad said I helped!” he proudly told me.  And I praised him for that, which made him smile and rub his hands together in delight before he went on his way.

Gary and I don’t have all the answers to Aaron’s needs.  On some days and in many ways, we feel like we blow it, for sure.  But I looked at this scene on that hot Saturday and I knew that Gary got it right. 

Being a dad is incredibly important, and for a dad of a child with special needs, it’s also incredibly difficult at times. 

How thankful I am for this man who has stood by my side for all these years!   He has stood unbending through hard times, but he has also bent down plenty of times to meet Aaron where he is. 

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Happy Father’s Day to Gary! 

 

A Poopy But Grand Day!

In the grand scheme of things, this day of mine was really not a big deal.  However, I don’t really give a flip about grand schemes when it’s so often the little things…..and some not so little……that make one want to go somewhere far away and very quiet.  A place where there are no pooping dogs, and where 32 year old sons can go into the public restroom and not be heard from the hall as they laugh and whoop very loudly.

My day began at 3:45 A! M!  Our elderly Great Dane, Jackson, sleeps in our bedroom with me and Gary.  Not with us as in the bed with us.  NO, NO, NO!!  But he sleeps on a bed at the foot of our bed, on the floor, where big Great Danes belong.  He’s been getting me out of bed quite often lately, needing to go outside to potty, and usually it happens at about the awful hour that I awakened this morning.  But it wasn’t Jackson that woke me up.  It was an odor.  A very unhappy odor.  Not wanting to awaken Gary, and assuming that Jackson had left me his usual large gift of a turd or two on his bed, I got out of bed and didn’t turn on the light.

Big mistake.

Both of my feet soon landed in soft, gooey poop.  So there I was, in the dark, trying to walk on the sides of my feet to the bathroom where there was a LIGHT SWITCH that would help me to see what I already knew was there.  I nearly fell backwards as I tried to wobble forward, and wondered how I would explain all of this to the ER doctors as I lay on the gurney covered in poop with bones poking out of my poor broken body. 

I know that’s dramatic.  I was actually very composed…….probably in a state of near shock as I first cleaned my feet with a Clorox wipe, and then tackled the carpet.  Jackson lay on his blanket, separate from his bed.  Yes, he has a bed with a comforter on it and his favorite blanket.  And then he has yet ANOTHER blanket on the floor beside Gary.  He’s spoiled.  He watched me with a bored expression.  I glared at him but didn’t speak.  Then I made him get up and go outside to potty anyway, and I left him downstairs. 

There!!

I never went back to sleep.  Our diffuser helped dispel the odor, but my body and brain were revved up! 

I guess Aaron was revved up this morning, too, because at 6:30 he came into the bedroom where I have my quiet time and he just quietly stood there……staring……at me. 

I turned and stared back.

“Mom,” he said with no emotion.  “I woke up.”

I was still in a poopy frame of mind.  “No joke,” I replied.  But the sarcasm was totally wasted on Aaron, who doesn’t get sarcasm.  And I, having had enough of waste, just turned and continued with my reading.  He must have thought I was hopeless, because he went back to his room and shut his door. 

Today Aaron had a doctor appointment at the air base.  It was time for his physical, as well as his post-hospital visit with his primary care doctor there.  I was so prepared the night before……clothes picked out, and all of his paperwork filled out and put in a nice folder on my desk.  I was good to go!  Until it came time to actually go.  I don’t know what happens in the last five minutes before we leave.  I mean, does Aaron plan to go barefoot?!  Why are his shoes and socks not on when I told him what time we were leaving?  Then I had to quickly clean his glasses, grab my earrings, don’t forget my phone, turn off the radio, answer his multiple questions about where we would eat lunch today……and LET JACKSON OUT TO POTTY!!!!!

We were about two miles from the house before I realized that I had forgotten the carefully prepared folder with all of Aaron’s physical paperwork that I MUST have.  So I did a quick turnaround, went back to the house, up the stairs as fast as I could, and off we went again.  Aaron put his seat back and slept.  We hit every single red light on the way, I do believe, but made it just before our appointment time.  Why does Aaron walk SO slow?!   And so much for getting there 15 minutes early.  I was very thankful that it wasn’t mentioned by the receptionist. 

Aaron went to the restroom then, and as I stood at the check-in counter quite a distance from the bathroom, I heard the unmistakable sound of Aaron’s laugh……and his excited whooping yell……and several booming claps.  Not of thunder, either.  It was Aaron clapping for some reason known only to him.  I stood outside the bathroom door at that point, and when the door opened Aaron got the “evil eye” for sure from me!  He was unaffected, of course, and just followed me up the hall where we waited for our name to be called.

And where he almost……almost……got off another loud clap.  But I intercepted it, and hissed out a stern warning to him about NOT clapping!!  And NOT making such noises in the public restroom!!

“You’re a grouch today,” was Aaron’s response.

“No joke,” I wanted to say but didn’t.  Why waste my breath. 

There’s that word again!!!

Aaron’s name was called at last, so we followed the medic into the hallway.  Aaron knows the routine, so he stopped at the scales…..took off his shoes…..and was weighed.  Then to the exam room, where he sat Indian style on the exam table but soon was stretched out comfortably after his vitals were taken.  No sense wasting a good place to lay down! 

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Did I really say wasting?

It was then that I noticed the large coffee stain on his shorts…..and another stain…..and some spots on his shirt.  So much for trying to be nice and clean to see the doctor!  Exam done, papers filled out, TB test read, and assurances made that he did not have to pee in a cup again today – and we were done!!

Put a little gas in the van, make our way through multiple construction zones, back to our side of town, and finally we were at Aaron’s favorite place – Carlos O’Kelly’s!  We sat down in our booth and our server was there.  And immediately Aaron said…..loudly, of course – “Can I have a regular salad?!”  It happens every time, and every time we tell Aaron to wait until we actually order food to order his salad, but he just MUST be sure that the server knows that if all else fails……if there is no other food…..no water…..if the table collapses……if the walls crumble…..CAN I HAVE A REGULAR SALAD??!!

We finished our grand day at Wal-Mart, which is the grandest of the grand in Aaron’s book.  He went to the electronics, of course, where he saw more movies that he wants and a computer mouse and headphones……

And in our cart were other things he saw and knew he could have…..CheezIts…..flavored water……and some beef jerky for Dad!  All picked out by Aaron, who was very happy.

And very tired.  He told me that he would sit on the bench and wait for me, but I saw this sight as I left the register after paying. 

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He surely doesn’t mind being comfortable wherever he may be.  Doesn’t faze him one bit to lay down in front of everybody at Wal-Mart, or make noises in the bathroom, or talk loudly for all to hear, or any number of other things that sometimes makes Mom grumpy on a bad day. 

But Aaron isn’t trying to make me have a bad day.  He’s just being Aaron. 

Kind of like Jackson was just being Jackson, doing what a dog needs to do when a dog needs to do it.  I may as well not waste my breath fussing about any of it.

I said it again, didn’t I? 

Kind of like Aaron, don’t you think?

 

 

 

 

You Want to WHAT?!

Yesterday I took Aaron to Great Clips.  I have so many stories that have come out of our Great Clips “haircut/beard trim/anything else on the face that can be buzzed” visits.  So there we were, with me telling Aaron to not barge in the door without me, but he did anyway, as always.  He marched up to the counter and then just stood there staring down at the tempting Dum Dum Sucker bouquet in a bowl that sat there.  I told the stylist that we had checked in online, she said we were next, and I told Aaron to follow me and to not get a Dum Dum until we were done done. 

I didn’t really say done done but I thought it sounded cute.  😊

Aaron would have thought I was weird.

So we sat down to wait for a minute.  I told Aaron to hand me his glasses, and his watch.  He, for some reason known only to him, also removes his watch when it’s time for his haircut.  I have gotten many a smile from people as they watch Aaron remove his glasses and then his watch.  I’ve also told many people to be thankful that this is ALL that Aaron removes!

Anyway, I told Aaron to hand me his glasses and his watch so that he could be all ready when the girl finished sweeping up the hair on the floor.  Aaron was watching the hair sweeping with great concentration. 

“Hand me your glasses,” I repeated.  But Aaron softly said no as he shook his head and continued to focus on the girl and the broom.

I waited a few seconds.

“OK, hand me your glasses,” I said again.

But again Aaron said no as he intently watched the stylist finish her sweeping.

I decided to test it one more time, knowing full well what Aaron was doing.  And one more time, he would not remove his glasses.

“All right, Aaron, I’m ready,” the girl said. 

And as if a spell was broken, Aaron came to attention.  He took off his glasses, handing them to me, and then off came his watch. 

You see, Aaron wouldn’t remove his glasses until his name was called.  It’s the same reason he won’t eat ice cream when watching television unless the show is on.  He will NOT eat ice cream during commercials because commercials are NOT part of the show, and he wants to eat ice cream during the show. 

Get it?

Well, we better get it because Aaron is NOT going to change.  These are just two very small examples of how Aaron does things Aaron’s way.  I looked at his glasses and his watch laying in the chair beside me, and I thought of the example they were of Aaron’s world, lived Aaron’s way.

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Sometimes Aaron’s ways are funny.  Like walking into Subway today after I picked him up from his day group, and reminding him again to stay with me and to enter quietly.

Who am I kidding?

And the staring man sitting there did not sit well with me, by the way.  Good grief!  Aaron’s not an alien, much as he would love to be!

But I didn’t have time to dwell on rude staring men because Aaron was at the counter and he was not ordering a sandwich.  He was telling the nice girl about his upcoming day tomorrow at his day group.

“Guess what movie Paradigm is going to see tomorrow?” he asked this perfect stranger, as if he had known her forever.  She smiled but was a little taken aback.  Aaron has that effect.  He offers no “hello,”……no “how are you?”……..no introduction of any kind.  He just launches into whatever is on his mind at the moment.

And he rubs his hands together while he talks, at differing speeds depending on his depth of excitement at what he is telling.  This time his hands were probably at a slow to medium pace.  Kind of mesmerizing, actually.

Aaron didn’t pay attention to me trying to distract him……trying to get him to just place his order instead of telling this stranger all about his coming day. 

“What movie?” she asked with a welcome smile.  She was getting it.

“We’re going to go see THE MUMMY!!!!!” Aaron exclaimed, his hands now at a moderately fast pace.  “Have you heard of that movie??!!”

Somehow we ordered a club on Italian with extra cheese in between mummy comments.  All was done, I had paid, and was sure that we were free to leave.  A young man who worked there had just wheeled out a large display of chips that needed to be placed just past where we were standing, so I was urging Aaron to follow me. 

Oh, but Aaron had one more thing to say.

“I love Natalie!!” he blurted out, “and I want to marry her but my Mom says I CAN’T marry her!!!”    

Well.

I would have hummed the theme song to Days of Our Lives if I knew it.  This day of my life had just turned more interesting than it already was. 

I didn’t dare look at the rude staring man. 

Aaron’s hands were now at a furious pace……a smoking pace.

The girl just smiled, a very large smile.

The boy whose head was poking out from behind the chips display was deciding whether his smile was OK, so I smiled back to assure him that it was.  What else is one to do? 

I told Aaron that it REALLY was time to go.  I always wonder what people who experience Aaron like this tell their families or friends when they go home.

Aaron has been a huge mixture lately of ups and downs as he adjusts to a medicine increase, and whatever else is going on in that brain of his.  I’ve been pretty exhausted with it……very frustrated at how he’s been treating us and treating others, especially our friend who visited from Arizona……just plain tired and weary.

But there are times of laughter, too, and times when Aaron’s way of doing life is just downright hilarious if you can only step back beyond embarrassment and enjoy it. 

Easier said than done some days, but Aaron’s not going to wait on us to figure it out.  He’s already burst through that next door and found someone else to talk to!