The Yo-Yo Life

Aaron had some seizures last night.  We think he only had two.  At least that’s all we heard.  But boy, is he ever out of it today!  It’s amazing how sometimes he bounces back quickly after seizures, and at other times he’s totally wiped out for a day or two.  I can only imagine what they do to his brain……physically, mentally, emotionally.

Throw in a dash of autism, stir the pot, and BOOM!!

Poor Aaron! 

It’s amazing, too, when you look at it in pictures.  Here is Aaron on Friday when I picked him up from his day group.   

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He had seen Spiderman, but even more important to him at that moment were the Sycamore seed pods he had found and couldn’t wait to show me……and later to show Gary.  Leave it to Aaron to find what to him is most unusual, but to us is very usual, and then to make sure that we see that object through his eyes.  He’s pretty cool that way.  Just look at the delight on his face!

He makes us stop and see things his way.  Sometimes it’s great fun…..and other times, it’s greatly frustrating. 

Anyway, compare Friday to today.  He got up late this morning, dreary and slow from the seizures.  He seems to have pulled a muscle in his right arm, which was hurting him.  But he saw the Sunday morning coupons and so readied his usual coupon area for the job he always does, seizures or not.

Except this morning his body just wouldn’t cooperate.  This is how he ended up, coupons and coffee untouched.

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A couple hours later we heard him getting off the couch.  He decided to cut the coupons and drink his coffee.  I checked on him shortly and here is what I found.

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It wasn’t another seizure.  He’s just very tired today from the ones last night.

He woke up again awhile later, ready once more to try clipping coupons.  I heated his very cold coffee, which he drank while he read the Sunday comics.  Then he asked for his fuzzy blanket and his fuzzy pillow, and wondered if he could lay on the big couch.  He was only down for a few minutes before realizing that he just wasn’t sleepy anymore, so he got up and began the coupons that had been waiting all this time. 

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I tell you all of this so you can catch a glimpse into how seizures affect both Aaron and us.  Our day revolves around Aaron’s needs when things are normal, but when he is having a rough day physically then we must stop what we have planned and be here for him.  Gary and I can tag team on a weekend like this, but when it happens during the week then I must often change my plans in order to be with Aaron.  And sometimes Aaron has missed fun days, like movie days at Paradigm or other events, because of his seizures.

These days and these pictures are also an example of how Aaron’s life is full of ups and of downs, as all of us have, but which he cannot control, be it from seizures or from behaviors.  We saw it very clearly while on vacation last week, which I hope to write more about later. 

Happy moments…..angry moments……sad moments……fun moments, are all wrapped up in Aaron.  This is why I think of myself, and so many others with similar issues, as Yo-Yo Parents.  We get jerked around a lot, that’s for sure, but must always remember that God is the one in control even when we feel like things are out of control.  He orders our steps, including the ups and even the downs. 

And God comforts our hearts when we see the child we love having so many issues to overcome. 

I have so many reasons for which to be thankful, but none more than the fact that the God I know and love also knows and loves me, and Gary, and most definitely our Aaron. 

 

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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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?

 

 

 

 

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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The Beauty IN The Beast

My phone rang this morning, and there on the line was my very dear friend, Wendy.  I knew right away from the sound of her voice that something was wrong.  It was Elijah, Wendy said, her tone flat and exhausted.  He had run away again, on his bicycle, and had almost gotten on highway 24.  Somehow Wendy got him back, although we didn’t go into all the details of that.

Elijah, who turned 20 years old yesterday, suffers from the worst form of Epilepsy there is.  He has horrible seizures that often require oxygen, and sometimes require strong drugs to just stop the awful seizing.  Those drugs may help to save his life, but they also cause his life to be miserable after the seizures stop.  Life saving drugs like that are also life changing drugs because of the terrible behaviors that usually follow their use.

It’s an awful catch 22……a dreadful dilemma for Dan and Wendy, his loving parents.  And for Elijah……and the whole family…….they live between a rock and a very, very hard place.

Seizures cause changes in the brain.  These changes can contribute to behaviors that defy reason.  Drugs to control the seizures often have the very unwelcome side effect of causing even more behaviors.  Add to all this the sometimes necessary brain surgeries that children like Elijah have had…..multiple brain surgeries…..and the mix is indeed toxic when it comes to the brain being able to make the connections that you and I take for granted.

Gary and I face these same dilemmas with Aaron, trying to find the balance between seizure control and quality of life……both Aaron’s and ours.  Yet preventing or lessening seizures is of paramount importance.  It’s literally a life or death situation.

But so are behaviors, sometimes, when those behaviors can be as dangerous as Elijah’s.

And let’s not forget autism.

BLAHHHHHH!!!!!

Sometimes it’s just too much!

No disease or syndrome of ANY kind is easy to bear.  But some are, sadly, easier to explain.

I do believe that explaining……let’s just say it……bad behaviors…..is tremendously embarrassing and frustrating to us parents who find ourselves having to do it over and over and over.

We get “the look.”

We get the questions, spoken or not.

We get “the talk” from teachers or our friend’s parents.

And sometimes we DON’T get…..the party invitations…..the friendships……the understanding…….the listening ear……the sympathy, that we so desperately need.  That our special children desperately need.

It was just last year that someone came up to my car window, and with great exasperation, said, “Can’t you DO something about Aaron?”

I looked at her in disbelief and said, “Do you have ANY idea what all we have been doing with Aaron for over 30 years?!”

Today I gave our Aaron a fun day after his four days in the hospital.  We went to see Beauty and the Beast.  Aaron wasn’t totally sure that this was prime movie material, but the thought of popcorn and time with Mom won him over.

As the movie progressed, I was pretty amazed at Aaron.  He was completely enraptured by this movie.  He was so still and quiet, except for the rubbing of his hands together that is just so Aaron.  He rubbed his hands softly, unless there was a very exciting piece of action.    He ate his popcorn but didn’t even want a second tub.

As I glanced at him during the movie, I saw him smiling.  His eyes were big and focused totally on what was taking place on the screen.  He loved the characters and the drama and most definitely the music.

But the character he loved the most was the Beast.  Aaron was registering in his mind every nuance of the Beast……his anger at the first, his softening as the movie progressed, his smiles, and his joy as he fell in love with Belle.

Aaron at one point simply said, “I love this movie!”

And when he said it again, a little later, Aaron laid his head on my shoulder.  It was pretty incredible.

Aaron wasn’t the only one, though, that was completely taken by parts of this love story.  I was, too, but for reasons that went far beyond Belle and The Beast.

I was looking at what can transpire when a Beast – or a person – is loved.  Is truly loved and valued for who they are under their rough exterior.

Wendy’s sad and tired words played through my mind as the music played on the big screen.  My own sometimes weary burden over our Aaron’s behaviors was heavy on my shoulders.

Elijah and Aaron are so much like the Beast in some ways.  They can evoke a measure of disbelief in how they act and in what they say or do.  They are at times unlikable, impossible to understand, and downright annoying.

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But there is another side to them, and to so very many others with these same issues.  A side that blooms under love and understanding, as much as possible.  And when we, or others, can’t really understand we at least know deep down that many actions are beyond their control.

the beast

All of this was playing in my mind as the movie played today, with Aaron’s gently rubbing hands and big smile beside me.  And it’s why tears rolled down my cheeks as the words of this song, Something There, burned into my heart.

            There’s something sweet

            And almost kind.

            But he was mean and he was course and unrefined.

            And now he’s dear,

            And so I’m sure,

            I wonder why I didn’t see it there before.

            New and a bit alarming,

            Who’d have ever thought that this could be?

            True that he’s no Prince Charming,

            But there’s something in him that I simply didn’t see.

Aaron and Elijah, and many like them, have so much more in them than we often see.  They are wonderful and funny and smart and have so much to offer to the world……and the people…..around them.

They need what the Beast needed.  They need the “something there that wasn’t there before,” as the Beast’s friends sang at the end of this song.

That “something” is love.  Some days the love is harder in coming than on other days, but even when our boys aren’t being Prince Charmings, they still deserve as much love and understanding as possible.

Belle and Beast

Aaron and Elijah have lots more awareness than we realize.  Aaron has always known who is real and who is not when it comes to how they react to him and interact with him.

You know what Aaron said tonight?

“Mom, Gaston fake loved Belle.”

Aaron gets it.

He knows very well that the Beast loved Belle for who she was as a person.  That’s real love.

And it’s the love our special kids need……the love for who they are, deep under all the medicines and conditions and labels and diagnoses.

I’ll be the first to say that it’s easier to write the words than it is on some days to live it out in real life.

But our kids will grow under unconditional love, some days more than others.

And all of us giving them real love…..not fake love…..will grow even more.

There truly is beauty in the beast, if we just love and look.

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Houston and Home

Gary and I just returned yesterday evening from a trip to Houston, where we got to see our daughter and her boyfriend, and our son.  Aaron stayed in Wichita, where our friend Amber and her family provided excellent caregiving for him.  He has so much fun eating out, watching movies, and just generally being the center of attention.  And we have so much fun seeing our other kids, and having some time to ourselves.  It’s a win-win.

Before we leave on a trip, Aaron is very excited at the prospect of us being gone.  Remember, no filters equals complete honesty from Aaron.  But of course, while we’re gone he calls multiple times every day.  I had told him over and over that while we were at the race track where our son works that I wouldn’t be able to answer the phone because it was too noisy to hear.  That didn’t deter Aaron one bit.  He never left a message, but just pursued calling until eventually, even hours later, I would answer the phone.

“HEYYYYYY!!” Aaron would say with great enthusiasm……as if we hadn’t talked in weeks instead of it being just hours.  And then he would launch into the story of his latest happenings at home or at his day group……what he had eaten and where……what Amber or one of her kids or her husband had done……what our Great Dane was up to……..what movies they had watched……and various other stories and comments.  He never asked what we were doing or how we were, and I certainly would be surprised if he did. 

In between all his phone calls, we did have a wonderful time in Houston…..despite the horrendous traffic that we often found ourselves a part of……and seeing or hearing of multiple fatality accidents, with detours and delays.  Oh Houston, you are so huge and exhausting!

We got to see Andrea’s genetics lab that she has gotten up and running.  Quite an accomplishment!!  She is now the lab manager.  We were privileged to meet her genetics director and hear some very affirming things about our daughter, which thrills the heart of any parent. 

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Andrea and Gary

We got to spend some precious time with Andrea’s boyfriend, Kyle, who is working hard to complete his degree as a ship’s captain.  Between his studying, projects, and work, we were very happy to see him when he could spare the time.  We also got to eat dinner our first night in Houston with him and his dear parents, Kent and Marie.

 

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Andrea and Kyle

 

We got to spend time at the NHRA racetrack in Baytown, watching Andrew as he works with Cruz Pedregon Racing.  We saw Cruz run his career best time!   And again, we heard such nice comments about Andrew and were thankful for the impact he is having on others there. 

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And let’s not forget that we got see our adorable granddogs, Darcy and Oakley.  We also got to see Aries, Kyle’s dog, but silly me forgot to take a picture!

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Andrew got to have some rare time for us to get together on Sunday evening for a visit to Andrea’s apartment, and then dinner with all of us together.  Times like this happen so seldom for us, and we were very thankful for every single minute together.

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Aaron was happy to see us when we got home, although he didn’t want to hug and he didn’t want to act TOO glad to see us.  But he followed us around most of the evening, talking and talking.  Then this morning……did I really hear Aaron get out of bed at 5:25?!  And did I really hear Aaron NOT go back to bed soon after?!  Yes, indeed I did!  I was looking forward to sleeping in just a little instead of getting up at my usual 5:30, so I closed my eyes and hoped……

But no, Aaron was awake for good.  Gary was downstairs, where Aaron went at first, and then back upstairs he thumped.  I got out of bed a little after 6:00 and walked into the kitchen to the beaming face of Aaron.  My, what bright eyes he had on this VERY early morning!! 

Gary had gotten Aaron’s coupons from the Sunday paper out for him to cut, and so his coupon cutting station was all set up on the floor in front of the television.  This gave me some time to read my Bible and drink some coffee, preparing myself for the Aaron onslaught I knew was soon coming.

Sure enough, as soon as Aaron heard the door open and knew I was finished, up the stairs he lumbered and into the room he came.  I was getting ready to iron Gary’s work clothes, so Aaron sat on the bed where he could look at me and talk to his heart’s content. 

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I decided to write down a few of the things Aaron said while I ironed and then on through the morning so you can get an idea of what I mean when I say that Aaron talks a lot.  I mean, a LOT!!  This is only a mere fraction, mind you.

Aaron, while on Andrea’s bed watching me iron:  “The big slug aliens, they had also legs.  They screeched!!”

“This is how I sit when I cut coupons.  Then my leg hurts!”

“You want me to cut diaper coupons?  Do you want me to cut wipes coupons?”

Then back downstairs, where he was watching the movie Battle of Los Angeles:  “Mom, this is the OLD movie.  The new movie doesn’t have ‘of.’  It was only Battle Los Angeles.”

“Where is Los Angeles?”

“The hideout that comes down to earth, that brings their little ships.”

“Why does the military go in the hideout?”

“They put detonators in there and blew up the hideout!”

“The woman military is cute.”

“I didn’t know a woman could be a fighter!”

“Why do they make every alien giant and look like a slug?”

And on and on and on and on he went, until finally I was able to make a legit exit to my bedroom and lock the door while I got ready.  But eventually I had to unlock the door, where Aaron promptly entered and continued his monologue as if nothing at all had interrupted him.  Finally, it was time to take him to Paradigm.

“Guess what time Amber took me to Paradigm?” he asked.

And before I could answer, he breathlessly told me.

“9:13!” he exclaimed. 

He waited for my sure response, as if 9:13 was the most amazing time to leave for Paradigm……and mom’s usual time is, of course, very sub-par.

“9:13?” I asked.

“Yes!!” he replied.  “She took me at 9:13!”

I’m still not quite sure what magic there is in leaving at 9:13, but to Aaron it was impressive and he wanted it to be for me as well.  That, along with giant slug aliens that had also legs and the woman military who was cute and could fight and ships and detonators and diapers……it was just altogether a very impressive morning, let me tell you.

Home sweet home in Kansas…..where the wind blows a lot and Aaron talks a lot.

Sometimes refreshing and sometimes it rattles the nerves, but it’s home. 

And we’re thankful.