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!

 

Are We Having Fun Yet?

He Said What?!

Gary’s military career took us to many places over the years.  Many of our family were able to come visit us in the various places that we lived, including Germany.  Fort Huachuca, Arizona, was our last assignment before Gary retired.  We had lots of family and several friends that were able to come and spend some time with us while we were there, but one trip will always stand out as the trip like none other……….the trip that no one would want to re-live.
Our military housing on Fort Huachuca, Arizona
My mom and dad came out to see us in October of that particular year.  October in Arizona is usually a great time to travel because it’s not too hot and not too cold.  Since Dad didn’t like to fly, they drove for several days across country, all the way from southern West Virginia to southern Arizona.  Mom and…

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In the Hospital!

 

Aaron was in the hospital last week.  Thankfully, this was a scheduled visit and not an emergency like we had two years ago when Aaron got suddenly sick with aspiration pneumonia.  This recent stay was so that Aaron could have a Video EEG.  This testing is an important tool in determining where in the brain his seizures occur, thereby hopefully having some new treatment options offered to him. 

We had determined to make the thought of a hospital visit sound as exciting as possible while also being truthful about the purpose of the testing.  We talked about how we would have time there to watch DVDs; play Skip-Bo; play his Nintendo DS; and ORDER FOOD!!  This all sounded like fun to Aaron, although he would have much preferred to have these same options while staying at home.  I told him that the business of ordering food was not going to happen at home, so off to the hospital we went. 

I gave Aaron his bag to carry as soon as we parked in the parking garage at St. Francis.  I grabbed the rest and we walked to the elevator.  Aaron happily punched the button, and soon the doors opened…….to reveal a rather large man sitting in a wheelchair.  This man was a double amputee, having no legs, and I must say that it was a bit startling to see this.  Aaron just stood there in front of me, and in front of this dear man, staring and not moving.  I gave Aaron a little nudge as the kind man gave a big smile, and told us to come on in. 

“Please, please, please, Aaron,” I thought to myself.  “Don’t say anything you shouldn’t say!!”  Thankfully, Aaron kept quiet as the man and I chatted.  He was so personable and nice.  I’m sure he was used to many stares, and in that respect I could relate to him.  Maybe he knew that.  The elevator door opened and he told us to go on ahead, which we did. 

We walked away a few steps, and Aaron just couldn’t hold it in any longer.  “Mom,” he said.  “That man didn’t have legs!!”  As if I didn’t notice.  I hushed Aaron, knowing that the man was behind us, and so Aaron repeated it again, but quieter next time.  Hopefully the man didn’t hear us.  Later I was able to use that as a teaching moment for Aaron about being kind and polite.  I have no idea if it stuck, because Aaron was immediately off on something else……namely, the bell that he saw and really, really wanted to ring.

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Aaron had to wear button down shirts because of the wires which would be on his head.  He looked so nice, I thought, not at all like he was getting ready to stay in the hospital and have seizures.

Hospital visits for Aaron, I have learned, are very interesting and also challenging.  There are many people who work with Aaron who quickly see that Aaron is unique.  My job, other than caring for Aaron, is to care for those who come under Aaron’s blunt responses……or his silence…..or his attempts at being funny……or his frustrations……and I could go on and on. 

The nurses, the technicians, the doctors……just everybody who saw Aaron…..were wonderful and kind and very understanding.  I’m sure many didn’t totally understand everything about Aaron, but still they were sweet to him and to me. 

The resident who came in every day certainly got an earful soon after we got in Aaron’s room.  Aaron was being hooked up to the EEG while the resident came in to do his assessment, and to ask me questions.  He had lots of questions about Aaron, of course, but Aaron finally interrupted loudly.

“My Mom’s a blabbermouth!!!” he said with a measure of anger. 

I knew exactly what Aaron was saying.  He didn’t like being talked ABOUT while he was sitting right there listening.  However, it just has to be that way sometimes, which I explained as the resident was stifling a laugh.  This resident stifled lots of laughs, and some he didn’t hide at all, during the four days that he saw Aaron. 

Aaron also doesn’t like to be made to feel dumb.  No one there in the hospital did that at all to Aaron, but it was easy to interpret it that way.  Like when he had his first seizure on the second night, and the nurse came in later to check on him.  She asked him to say, “One, two, three, four, five.”  He repeated it, but with frustration, and so she quietly asked me about it.  But it made Aaron feel dumb, he told me later, so I had to explain the situation to both Aaron and to the nurse. 

I was a liaison, I guess.  That could look good on a resume, actually.

So, Aaron was all hooked up shortly after getting to his room.  He also had heart monitors on his chest, so he had both the EEG pack and the heart monitor pack to put around his neck when he got up to sit in a chair or go to the bathroom.  He handled it so well, only getting irritated a few times and REALLY irritated on the morning of dismissal…….which never happens fast enough for anyone, but especially for Aaron.

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He loved watching the EEG lines on the monitor until it was turned off in our room, doctor’s orders for everyone.  It didn’t take him long, as our friend Terri was visiting, to see that when he rubbed his hands together the lines on the monitor became huge and black.  He was really hilarious as he rubbed his hands together quickly and watched the monitor screen darken.  He would laugh loudly before repeating it again.  It was a good thing that the monitor was finally turned off.

When Gary came that first evening, Aaron did get to show him the lines.  “Dad!!  When you were in the hospital, did you have lines?!”  And……

“Dad!!  Get in my bed and see what it’s like!  It HIGHERS!!” 

A bed that goes up and down is such great fun……for at least a day.

His first dinner ordered was:  Mashed potatoes, a roll with butter, and pizza.  He was truly in food heaven!

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He wanted to keep his schedule as much as possible.  We played Skip-Bo the first night, but he got so sleepy that he finally took a nap. 

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He got up at 9:00 to finish our game, but was still very tired.  I suggested bed.  And those of you who know Aaron will guess what he said.

“It’s not 10:00 yet.” 

Silly mom.  Going to be before 10:00!

So I suggested that he brush his teeth.

“Not till 10:00,” he informed me.

Silly, silly mom!

I forgot to bring his deodorant.  Knowing that Gary gets home at 5:30, Aaron said, “When it becomes 5:30, can you call Dad to bring my deodorant?”  He was happy to see it in the bag later that evening.

“Can you put the deodorant on right now?  My chest stinks!”

He loved having Joyce come, and really loved seeing the subs she brought us and the goody bag full of treasures.  His favorite was the sock monkey and the battery operated back massager. 

He talked to Wendy on the phone…….Wendy, whose son has terrible seizures and who totally understands all this video EEG business. 

Aaron told her, “I’m kinda all wired up.  The lines are detecting my brain.”

We laughed, Wendy and I.  But then Aaron said, “They’re trying to discover things about seizures in my brain.”

Bingo!

And that was the difficult part.  To discover things about seizures in the brain, you must have seizures.  So, as Aaron’s seizure drugs were decreased, his chances of seizures were increased……which was the whole reason for being there.  Still, it was hard on Aaron and hard on my mama heart. 

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He did have a seizure, finally, on our second night there and again that next afternoon.  The doctor got the results needed in order to talk about future treatments.  But Aaron’s seizures continue to be what we knew they were from years ago.  I listened to Dr. Lee as he told me the results.

Generalized seizures…….no focal point…..hard to treat……limited options.

But God isn’t limited at all, this I know.  He has a plan for Aaron and for us. 

But Aaron’s plan at that moment was to ask the doctor the all important question:  “CAN I GO HOME???!!!”  Even getting to order food was not so charming anymore.

Aaron was happy, happy, happy to hear that he could go home the next morning.  And on that next morning, he gave the resident a whack on his posterior, much to my great embarrassment……the resident’s great surprise……and Aaron’s great delight.  He squeezed the nurse’s fingers way too hard during her last assessment, and told her that he was tired of her listening to his breath.  He rolled his eyes at the hospitalist when she came in one last time.  He tried to remove his wires on his own, and some had to be reattached, much to his great dismay. 

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But at last, the wires were all removed!!

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The bags were all packed!!

Shoes and socks were on!!

Discharge papers were all delivered!!

The wheelchair arrived!!

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And it was home again, home again……with a stop to get Dad and deliver him to pick up his truck that had died out on the road earlier in the week and was in the shop.  Yes, it was that kind of week for him and for us.  And then a better stop at Taco Bell, and home with nachos and tacos and all our hospital stuff!

Another piece of the puzzle of Aaron’s life and health is now in place.  It’s not the best of news and it’s not the worst of news. 

But no matter the news, we have lots for which to be thankful. 

“Let your requests be made known unto God, with thanksgiving,” the Bible tells us. 

Some days that’s hard to do, but God has a gentle way of reminding us.  Like I’ve said to Aaron since we saw the man on the elevator:  “Yes, you have seizures.  But you can walk!”

And may I add:  Aaron can talk! 

To be continued, I’m sure.

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Who Are These Special Moms?

He Said What?!

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

All moms need God’s grace for each day.  We who are His children need His grace for our own children in so many different ways.  How amazing is God’s grace, too!  He promises this undeserved favor to us over and over, greater grace for greater needs, along with His mercies that are new every morning.  He has all…

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