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Poor Aaron.  He still has his cold, and now besides the snorting he’s also been coughing.  Still no nose blowing……………there won’t be, either.  I could only hope for that.

I do feel sorry for him and don’t like seeing him feel bad.  Aaron has a high tolerance for pain and inconvenience, but he also demonstrates the classic characteristic of many Asperger’s individuals in that he is very egocentric.  He definitely demonstrates this trait when he has something like a cold.  He talks and talks and talks about it.  For instance, I just woke him up from a nap and the very first words out of his mouth were, “I don’t feel well.” 

The other day he was telling me that he can tell he doesn’t feel well because at night he’s been so tired.  “Mom, I’ve been easier to fall asleep!”  Then he added, “I sleep on the outside of my bed!” 

He’s not running a fever, but the outside of the bed means on top of his covers.  Of course, he had LOTS of covers and in the right order……………and he sometimes wears his sweater that he loves to bed.  Good grief!  I’d sleep on the outside of my bed, too, Aaron!

I fixed him a bite to eat after his nap today.  Then he tried to get into his Mike and Ikes, but I told him that he only needed a few – not a few bowls full!!

“Mom, I still don’t feel well.” 

Snort.

He decided to watch some television after he ate.  As he walked out of the kitchen, he said, “I’m just not having a fun life!” 

Awww, Aaron.  Spoken in that monotone voice, his statement reminded me of Eeyore.  As if his cold isn’t bad enough, he’s just been told that he can only have a few Mike and Ikes!

So I fixed him a cup of hot tea, which he loves, and knew that he would feel better all the way around. 

I went downstairs and it wasn’t long before I heard the Mike and Ikes rattling into the bowl.  Sounds like Aaron has his own ideas of what will make him feel better! 

Let the fun begin! 

Aaron came home from his group yesterday and just as soon as I heard the door to the garage slam shut, I heard the familiar, “MOM!!”  If I’m nearby, like in the kitchen, he immediately begins telling me about his day.  “MOM!!  Guess what? Today……………”   and off he goes.  He doesn’t say hi, how are you………nothing.  Sometimes I’ll interrupt and say, “Well, hi Aaron!”  This never really gets his attention.  In mid-sentence he’ll mutter a quick hi but he doesn’t miss a beat with what he knows I’m just dying to hear about his day. 

 I was upstairs doing some ironing, so I heard him say, “MOM!!”   Thump, thump, thump as he walked around looking for me.  “MOM!!”   Thump, thump, thump.   “MOM!!!”   I’ve told him a million times (at least!) to not walk around yelling, “MOM!!” but to just find me and then tell me what he wants to say.  It’s a waste of my breath, though, and today was further proof of that.  “MOM!!”  So I just kept quiet and waited patiently while I ironed.  Soon he thumped up the steps and found me in the bedroom. 

Again, no hello, hi, or there you are!  “MOM!!  We went to the east mall today!  There were lots of people there!” 

Well, hello Aaron. 

I asked him if he had fun and what did he do at the east mall.  He said that he had a good time and then told me the most important thing that he did at the east mall……………..bought his lunch.  “Mom, I got some pizza for lunch!” 

Really?  He confirmed that it was good and when I asked what kind of pizza he got, he said that it was just cheese pizza.  After a pause, he said, “I wish I could have gotten a meal #2.”

When I asked him why he wanted a meal #2, he replied, “Because it’s a BIG circle kind, not just one piece!” 

Of course Aaron wants a big circle kind of pizza that costs $13 dollars, he told me, and has lots more than just one slice! 

I reminded him that his one slice of pizza, though, was a very big slice – right?  Yes, he said it was a big slice and then later when they stopped at Sonic he got a drink – water, he told me – and that his stomach was full. 

So, Aaron, your stomach is full but you still wish you had been able to get a meal #2. 

“Yeah”, he said.  “So what’s for supper?”  Uh………we’re having soup for supper, Aaron. 

“Well, I’m not hungry, Mom.  Can you imagine?” 

Honestly, Aaron, that is very hard for me to imagine…….but I bet if we were having a meal #2 he would suddenly have been very hungry!!

Aaron has a cold right now.  We all feel bad when Aaron has a cold, and it’s not just because we feel badly for Aaron – although we really are sorry that he’s sick.  It’s just that – well, the main reason we feel bad when Aaron has a cold is that – how do I say it?  Aaron doesn’t like to blow his nose and so he……………..snorts.  It’s just one of the grossest things ever, honestly.

Aaron takes his colds very seriously.  I could tell on Sunday that he was sounding stopped up.  He told me that his throat was sore, so I knew that my hunch was correct – a cold.  Great.  Later that evening, as we were driving to pick up some Taco Bell for supper, Aaron started talking about his cold.  “Mom, where did I get this cold?”  I told him what I’ve told him every time he’s had a cold for the past couple of decades………….all about viruses, how we come in contact with them, how they enter our bodies, etc.  I don’t know why I bother, though, because he always asks the same question – “So how did the virus come into my body last night while I slept?”  He thinks that because he woke up with the cold symptoms that the virus crept into his body while he slept and BAM – he has a cold. 

I let him stay home from his group on Monday because he wasn’t feeling well.   All day long I listened to him say, “I don’t feel well. (snort)”    Over and over and over and over and over………………sigh.  And then to be sure I got it, he came into my bedroom and said, “I’m not still feeling well! (snort)”

Aaron, honey, I got it.  You don’t feel well………and you don’t like to blow your nose.  So now I don’t feel so well either.

I don’t know why Aaron won’t blow his nose.  That’s right up there with not wanting to get his lips messy when he eats.  Do you know how you keep your lips from getting messy when you eat?  You use your TEETH to get the food off of your fork or spoon.  Do you know how incredibly annoying it is to hear someone get food off their utensil by scraping it on their teeth?  Come to our house and you can find out.  We tell Aaron to quit scraping the fork on his teeth, and so then he eats slower.  He slowly scrapes the fork over his teeth, with his lips parted rather weirdly.  Now the awful noise is somewhat quieter, but longer.  And he looks so funny that I start laughing………..which makes him forget to eat slowly and we’re back to the loud scraping sound again.  Oh joy!

I guess Aaron doesn’t like the act of blowing his nose or the feel of blowing his nose or the mess it makes…….I don’t know.  This morning he came thumping downstairs while I was on the computer and he sat on the floor beside me.  “Mom, I don’t feel well. (snort)” 

I know, Aaron.  You still have your cold, huh?    “Yeah. (snort)  I’m not still feeling well. (snort)” 

Aaron, here’s a kleenex.  You really need to blow your nose. 

He took the kleenex, balled it up, and WIPED his nose.  (snort).   

Aaron, I said to BLOW your nose!!   Whereupon I handed him another kleenex, then took one for myself, and proceeded to once again demonstrate how to blow your nose……..by blowing MY nose. 

He wiped his nose again.  (snort)  AAHHHH!!!

He came home from his group yesterday and said, “Mom, I still have my cold. (snort)”  

I know, Aaron.  He told me that they went to Wal-Mart.   “I got a Cheddar Pasta Salad. (snort)  But I lost my taste for things. (snort)”

Yeah, Aaron………….I’m losing my taste for things, too.  (he snorts)

Later he was talking again about the sorrow of getting his favorite Cheddar Pasta Salad but not being able to taste it.   He said, “The taste of it felt like it was nasty. (snort)”

Well, I can tell you what else is nasty, Aaron.  (snort)   I need earplugs.

Aaron has always noticed people’s hair.  Well, he notices everything about people that he sees – but some of his hair comments over the years have been funny………….except when it gets a little too personal, which with Aaron it usually does.

Aaron loves looking at our pictures from our wedding or our early years of marriage.  Any time he starts talking about “back then”…………….then I know I’m probably going to hear something about my age, my weight, or my hair. “Mom, your hair was smooth back then.”  I cannot tell you how many times I’ve heard Aaron talk about my smooth hair “back then” and I still am not totally sure what he’s referring to.  I think it’s smooth now but somehow he sees it differently.  I’m really hoping he doesn’t come across the pictures of my perm days when I looked like a sheep.  Seriously hoping that I can keep those unnoticed!

When he says “back then” in reference to Gary, it’s usually the amount of hair that Aaron notices.  “Dad, back then you had more hair.”  Gary thinks that poetic justice is smiling upon him now because Aaron has the same thinning hair on top that Gary has.  HA!  Gary doesn’t say that to Aaron, but I know he’s thinking it. 

Mr. Z, too, who was Aaron’s teacher for 3 years at the day school in Goddard, was often the brunt of Aaron’s observations concerning hair – or the lack thereof.  I wonder how many times Aaron called Tom by the respectful name of Mr. Baldy?  Thank you, Tom, for your understanding.  But not so understanding was another teacher whom Aaron introduced us to by saying, “She looks like a hedgehog, doesn’t she?!”  Read about it in my earlier blog – The Introduction.  Well, her spiked hair was very interesting to Aaron and he calls it as he sees it.  That was a shining moment for us, let me tell you!

When Aaron sees someone with red hair, he tells us about that person he saw that has orange hair.  And blonds really have yellow hair, according to Aaron.  That actually is more accurate than red and blond………or maybe I’m growing to think more and more like Aaron as time goes on.

One day I was in the process of fixing my hair when Aaron knocked on my door.  The reason he knocked is because it was locked.  Usually he just barges in, which is why I often keep it locked.  Anyway, my hair was pretty much standing on end, similar to a long-haired hedgehog, when I opened the door.  Aaron didn’t even act like he noticed my hair, but as he whisked past me he muttered, “Bad hair day!”  Excuse me?

He even notices the hair that is no longer on our heads, like the day he commented, “Mom, some of Andrea’s hair leaked out on the bathroom counter!”  Andrea still hasn’t gotten that leaky hair fixed!

And tonight he had a new one.  After supper he was talking about his Star Wars game that he’s been playing and how one of the women did this and that.  And then he said, “You know, she’s the one who has the old hair!” 

Old hair?  Of course, if hair is gray or white it’s because it’s old hair, at least according to Aaron.  We’ll explain someday that this isn’t always the case, but not now.  He was also excited to tell us that her hair came down beside her ears – he was using hand motions to explain it to us – and then said, “She had braces hanging down!”

Later he showed me a picture.  The woman had braids! 

I didn’t think old hair and braces really went together anyway!

Aaron has rebounded from his seizure day on Thursday.  I woke him up on Thursday afternoon so he wouldn’t sleep all day.  He finally made it downstairs, only to lay down on the couch.  He wasn’t feeling the greatest and said he felt like throwing up, so I offered him some chicken noodle soup.  As he ate it, though, the look on his face reminded me of when I try to swallow Brussels Sprouts.  The soup wasn’t helping, so Aaron and I began to brainstorm about what would taste good to him.  He eventually asked for one of his favorites.  “Mom, can I have cinnamon toast?” 

So I fixed him 3 pieces of cinnamon toast, which he scarfed down…………..after walking over to Jackson’s pillow when I had my back turned and giving him a chunk of toast.  Well, at least Aaron was moving around now, talking clearly, and up to his old tricks.  Is getting back to normal always a good thing?   That’s the question, as Aaron would say.

He asked for more toast and when all was said and done, he had eaten seven – yes, seven! – pieces of cinnamon toast.  He then settled in his favorite family room chair, old person style, with his usual fuzzy blanket, clock, etc., etc.  You know the routine well by now.  And decided that he was still hungry.  “Mom, could I have some celery and peanut butter?”  So I fixed him this other favorite food, and found that he had about 15 paper towels that he had taken in there with him…………he loves the peanut butter but detests it on his hands.  But really, Aaron?  He’s always in overkill mode when it comes to the paper towels. 

He was worried about the blood on his pillow case from biting his tongue.   “Mom, can you change my pillow sheet?”  I went upstairs to change his “pillow sheet”, telling him that I would just change the bed sheets, too.  As I started to change his sheets, he appeared at the doorway to his room……………not to help, mind you, but to direct.  Read the Order of the Covers blog to understand the importance he places on having his covers in just the right order………..an order that he’s sure I will mess up again.  He pretended to want to talk to me, but he was watching my every move.  I knew this when I got ready to put his long body pillow back on his bed, and he interrupted himself in mid-sentence to say, “Put the zipper on this side of the bed.”   Yes, Aaron!

I left the house to go have dinner with friends, and soon after I was gone, Andrea came home.  And Mr. Aaron told her that he sure would like to have some peanut butter and celery…………..that Mom hadn’t fixed him any supper……………that he sure was hungry…………..and so she fixed him MORE peanut butter and celery and he was very happy.  When questioned later, he smiled in his way that says he knows he got caught and he said, “Well, I didn’t think what you  made  me was for supper!”  Yeah, right!  Back to normal indeed!

He went to Paradigm yesterday and went to see a movie with his group.  He had his usual popcorn………….with butter, even though I tell him he doesn’t need the butter…………..and Twizzlers…………….and, as he said, “Mom, they gave me a water sample!!” 

A water sample?  “Yeah, you know in a cup about this big…….and I DIDN’T have to pay for it!!!!” 

I thought he knew about the free cup of water but he seems to have experienced this for the first time.  Now I can just see him going to the snack counter next time and asking for a water sample.  No telling what they’ll give him!  Yuck!

He ate supper with us before we headed out to a concert and he clicked his teeth on his spoon with every bite of his Cheddar Pasta Salad that he requested for his special Friday treat and he excitedly told us all about the movie he saw and the popcorn he ate WITH butter and the Twizzlers and the water sample and on and on and on. 

Yeah, it’s good to have Aaron back…………..Mr. Talks-A-Lot has returned.   

Today Aaron is having seizures.  I heard the first one on the monitor at 4:06 a.m. and the second one at 5:18 a.m.  Aaron would love the fact that my times are very precise, wouldn’t he?  He got up this morning for a short time………….took his meds and then spilled all of his coffee after his hand jerked.  He felt so bad about it, but I told him it was OK and made him some fresh coffee.  He showered and tried to watch a DVD before he got so sleepy that he asked if he could lay back down.  His head hurt and he was very tired, both from his meds and from the effects of the seizures.  Of course I told him to lay down and sleep. 

I turned on the monitor and kept it beside me as I did a few things around the house.  Aaron rarely has daytime seizures.  I got in the shower and was nearly finished when I heard him through the monitor, seizing.  I turned the water off and listened, which was all I could really do.  He was fine and I hurried then to finish and go check on him. 

He had already bitten the end of his tongue pretty badly during his first seizures this morning.  Now he had bitten it even more, and had more blood coming out of his mouth, oozing onto his pillow.  I wet a wash cloth with warm water and went back to gently wash the side of his face.  He opened his eyes…………and gave me a smile. 

There went that door of my heart that I rarely open, coming ajar enough to feel the hurt of this moment and this dear oldest child that God has given us.  I blinked back my tears.  I don’t want Aaron to see me crying at these times and wonder what is wrong with himself that would make his mother cry.  I tried to remember how irritated I was with him last night when I wouldn’t let him put his questionable hands in the tortilla chip bag, but made him let me put them in a bowl for him to eat.  He did NOT like that at all and became very grouchy.  If I can bring back the irritation that I felt last night, then maybe this moment of pain wouldn’t be so real.

Yet I don’t want to lose the pain………….the awareness that God has given us a special child……………for life.  Because if I lose the pain, I may lose my heart of trust in God.  I have to trust that God is sovereign and that God had a reason for giving Aaron life and for giving Aaron to us…………..or us to Aaron. 

Sometimes I look at Aaron and I think that he should have hung his college degree on the wall and be enjoying a wonderful career or ministry…………that he should be married and maybe have children of his own……………that he should be driving a car……….

Or should he?  God has given Aaron his own special life and ministry, if we but see it.  I’m convinced that God has a very unique and amazing calling for our special children………….for them to help lead us to a fuller life of faith and trust………….to point us to Christ and His love for us…………..to deepen our relationship with Christ and with others…………..and so many more possibilities that I won’t know until the Lord Himself explains it to me one day.

My dear friend, Wendy, has two sons with Doose Syndrome.  What a load Dan and Wendy carry!  What a testimony they are to so many of us!  Wendy and I have had these discussions about our boys.  And in our frail, human way of thinking…………..she and I have decided that God is going to let Elijah and Aaron drive the absolutely coolest cars in heaven!  As if it will even matter then, but it matters now and it gives us a chance to laugh and imagine the joy of it all. 

We have hope……………hope of far more than cool cars in heaven.  We have hope of grace for each day down here on this sad, tired earth……………hope that Sovereign God is with us…………….and hope that one day we’ll see Him, touch Him, worship Him…………with our sons beside us, whole and healthy and happy for eternity.

And no more dirty hands in the chip bag!   

Can you handle another toilet story?  Well, kind of another toilet story………..because it’s not really a toilet at all.  Let me explain.

Last year I bought a new porcelain scented oil warmer to put in the guest bathroom.  I placed it on the counter beside the sink on the day that I bought it.  I got busy with my day and just left it there, not putting the oil in it or plugging it in.  When Aaron came home from Paradigm, he went right to the bathroom first thing…………….and then darted right back out, carrying the new oil warmer. 

“Mom!!  Why is there a little toilet by the sink?!”

I had to laugh.  You  know, it really did look somewhat like a miniature toilet.  Aaron certainly thought so! 

Some time went by and still I hadn’t decided if I wanted to use the oil warmer in that bathroom.  I left it where I had placed it, still unused, and with Aaron’s natural distrust of toilets, this little miniature, wanna-be toilet became quite the fascination for him. 

One day he emerged from the bathroom and asked, “Mom, can I put that toilet shape smell thing in my room?” 

I didn’t let him do that, but maybe it would have been good therapy for him. 

Then on another day he asked, “Mom, can you fill up that little miniature toilet thing?  You know, that smelly thing?” 

That does not even sound nice or appealing at all.  My oil warmer was becoming pretty disgusting to me, to be honest. 

I put it in a drawer.  Out of sight.  Out of our smelling range.  Nasty little toilet shaped smelly oil warmer!

The other day I opened the drawer where it was tucked away and saw it there………..all new and clean and sparkly, just like a brand new porcelain toilet.  I got it out, put a few drops of oil in it, plugged it in…………and waited for the reaction from you-know-who. 

It didn’t take long.  “Mom!!   What’s that juice you put in the little toilet smell thing?”

He’s probably told everyone by now that Mom has a little juiced up toilet! 

Our Jackson is so sweet.  Sometimes Aaron pets too roughly, talks too loudly, feeds too “muchly” – although Jackson loves the snacking! – but Jackson always loves Aaron.  Jackson will go to another room when he wants away from Aaron, but he doesn’t hold a grudge and he’s always patient. 

We can learn some valuable lessons from our big, sweet dog! 

If you’ve been reading my blog for any length of time, I think you understand that Aaron is:

1.  Very observant
2.  Very blunt

Those two characteristics don’t necessarily work well together.  Anyone who lives or works with Aaron knows that having thick skin is of great benefit.  A good sense of humor helps, too.

Several years ago I was able to fly home to West Virginia to spend some time with my family, and to also attend the 50th Anniversary Celebration of Johnston Chapel Baptist Church.  Mom and Dad raised us in this church, and we have many special memories of our time there.  My brother pastors there now. 

Anyway, during that visit my brother and my three sisters and I gathered around my dear parents for an impromptu photograph.  It’s one of my favorite pictures of the five of us with Mom and Dad.

Now I have to explain that:

1.  All of us are………how do I say it?………….well rounded.
2.  Except for Jan, who is not well rounded…………..in the sense that the rest of us are.
3.  We love Jan anyway.

OK, Jan has managed to remain thin after all these years AND after giving birth to TWO – yes, I said TWO – sets of twins.  It’s not fair – but like I said, we do love her anyway. 

When I received my copy of this picture, I framed it and displayed it proudly.  Of course, Aaron noticed it right away and wanted to look at it.  He and I stood there, gazing down at the picture, and talking about who was there.  Of course, there’s Mom…….and Aunt Mary Beth……..and Uncle John……….and Aunt Jan……….and Aunt Kathryn………….with Grandmother and Granddaddy.  

He pondered the picture for a few seconds longer, thinking, and then pointed to Jan as he blurted out, “So…….what happened to HER?”   

 Leave it to Aaron.  And every time we see Bob and Jan, Aaron will invariably mention that Aunt Jan is thin and you’re not, Mom, and yada, yada, yada……………..I just block it out at that point.   But I do love Jan!!  Love you, Jan!! 

Maybe I’ll hide that picture.