My Round Guy in An Oblong World

A few weeks ago, Aaron was eating some of his favorite Skittles when he came upon an idea, one that he loves.

“Mom?” he asked.  “Can I take some of my Skittles to Paradigm to share with Shauna and Stephanie?”

Aaron loves to share things, and we love that he loves to share…within reason.  For instance, I had to say no when he wanted to share some of my jewelry a long time ago.  We have said no to him when he tried to sneak out of the house with some of his DVD’s or CD’s that he wanted to share.  But Skittles?  Sure!

So Aaron promptly went to the kitchen and grabbed two sandwich bags.  Later, I found this.

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I had to laugh.  Really?  Just three little Skittles per bag?  But for some reason, Aaron thought that three was plenty and so I let it go, hoping that Shauna and Stephanie enjoyed every little bite of their whopping three Skittles.

Days later, I bought Aaron some Good and Plenty candy for his weekend treat.  He began eating them as we watched a show that night.  I noticed, though, that he was laying aside some his candies while he ate others.  I asked him about it.

“These,” he said, pointing to the ones outside the bowl, “are not like the rest.  They’re different.”

Sure enough, the ones he put aside were different.  They were round instead of oblong.  To Aaron, round Good and Plenty candies do not belong in the same bowl as the normal, oblong Good and Plenty’s. 

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I later also found three more misfit, round candies that Aaron had placed on the shelf under the table. 

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Isn’t that interesting?  To Aaron, he just couldn’t tolerate mixing the round with the oblong.  I guarantee that if I had tried to sneak the round candies back into the bowl with the oblongs, then Aaron would have once again removed them. 

Aaron has so much to share with the world, like his Skittles that he wanted to share with his friends.  He can be bright and colorful, interesting and very funny. 

He is also quite unique, not fitting in with much of the rest of us in ways that we all notice.  Yet he IS still one of us.  He’s just a different shape, so to speak, but that doesn’t make him less than us or worse than us in any way.  Definitely not!

I share Aaron with others through this blog in order for people to understand how amazing our special ones are.  Aaron was created by God to be exactly who he is.  It’s up to me…to all of us…to understand and appreciate him.  Oh, he can be so difficult to understand sometimes.  And at times…tired times…embarrassing times…challenging times…I really falter in my appreciation of Aaron.  I’m human. 

But may I never set him aside in the sense of isolating him or shaming him.  And woe to the person who does, for this Mama Bear will roar. 

Yet Aaron sets himself apart in ways that he totally doesn’t realize.  It’s part of his charm…and part of the reason that on occasion my nerves are shot!

He can make such a spectacle of himself in public and not be one bit embarrassed.  I have many Wal-Mart stories that prove this point.  A recent one:  I’ve been working with Aaron about looking in both directions before crossing traffic.  He looks at his feet, which is not good!  I’m always telling him to look around, but still he looks at his feet.  So the other day at Wal-Mart, as we walked out of the store and were nearing the crosswalk, I saw Aaron once again looking at his feet.  “Aaron!” I sharply said.  “Look UP!”  And good old Aaron stopped abruptly in the middle of the crosswalk, with stopped cars on both sides, and looked up…at the SKY!!  I just shook my head, told Aaron to look for CARS, and didn’t dare look at the drivers to see what looks they were giving US!!  I wonder if they looked up to see what was in the sky that was so interesting?!

At a convenience store this week, Aaron ordered a pretzel on the computer in the café as I’ve taught him to do.  But Aaron still isn’t sure that the girl behind the counter actually receives his order because he hasn’t said anything to her.  After he placed his order, he leaned around the counter to the clueless attendant and loudly said, as he rubbed his hands together, “I ordered my order!!”

Some people get Aaron and some people just don’t.  She just didn’t, so she looked at him with impatience, which I saw.  But Aaron didn’t see that at all.  He thought she simply didn’t hear him, so he repeated it again…loudly, again.  “I ordered my order!!” 

“He’s just telling you he put in his order,” I explained to her as I led Aaron away from the counter and toward the chocolate milk he wanted.  I thought it was funny…and sad…and I was a little angry at the girl’s impatience.  But I know that to some, Aaron is an odd shape, so to speak.  Hard to figure out.  Off-putting, even.

I have to say, though, that he makes me laugh when he does things like that.  He’s so one-of-a-kind…so himself…so uninhibited.  Oh yeah, have I been humiliated and red-faced and angered and surprised!

But I’ve also been blessed and taught so much and humbled and thankful.  And those moments…those lessons…I must remember and focus on and treasure.

Like this one:

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See what I mean?  He’s most certainly my round guy in an oblong world!  

 

Does God Like Me?

“Mom?” Aaron asked last night as he was going through his ever-important bedtime routine.  I was ready for yet another question about what the SS means on the side of the Poseidon…or what kind of vision do the aliens on Pacific Rim have…or what is the quick freeze on The Day After Tomorrow movie?  So I just absently responded with my all-too-often reply.

“Hmmm?” I absently answered as he stood beside me in the bathroom, watching me put something away. 

“Do I have seizures because God doesn’t like me?” he continued.

And I stopped…stopped dead in my tracks at this very unexpected question. 

I looked up from what I was doing, into his very serious face. 

“I just wondered if I have seizures because God doesn’t like me,” he continued. 

Wow!

This is like a question Job would ask, and I wanted to give the right answer without being too shallow or too deep.

I told Aaron that God loves him very much, and that sometimes He allows things to happen.  I wanted to go into full theology mode, but I knew that I could easily lose Aaron, so I assured him again of God’s love and that when we have those questions we need to remember what we know about God…that He IS love, even when we don’t understand what He allows.

Aaron went on to bed soon after, but his question lingered in my mind into this morning.  What brought that question into his mind?  What had he been thinking about? 

Gary and I talked last night at supper, just the two of us, about how on some days we feel like it’s Christmas…and on other days, not so much.  What brings on that “Christmas spirit” we sometimes work so hard to achieve?  At times, we don’t set out to create that feeling, but when it’s missing we wonder what we missed.  Are we tired?  Worried?  Overwhelmed?  Broke?  Or broken?

I walked into Aaron’s room this morning, carrying his fresh coffee and finding him soundly asleep.  I spoke to him but he didn’t stir.  Coming back a little later, I pulled back his covers as he grunted…and I was not happy with what I saw.

A wet bed!  A totally soaked bed!

And last night he and I had changed his sheets!  I was happy to mark that off my Christmas To-Do list. 

“Are you kidding me?” I exclaimed. 

“What?” Aaron sleepily asked.

“You wet your bed!” I impatiently answered.  I was pretty certain it wasn’t a seizure, so I added, “No more water before bed!”

And off I huffed, mumbling my frustration.  Of all days!  I was feeling pretty good last night about finishing the gift wrapping and most of the grocery shopping, and saving Friday for house cleaning and the beginning of my cooking. 

Plans set.  The “Christmas spirit” picking up!

And now this…this time consuming, unexpected, yucky mess!

As I showered and got myself ready, Aaron’s question of the night before came back to my mind.  I was reminded of how much I wanted to impress God’s love upon him.  How could I do that if I was grouchy with him?  And again, how could I answer his searching question in a way that would impact him?

As I thought about it, God gently nudged my heart.  “It’s Christmas, Patty,” He seemed to say.  “What better time to explain my love than at Christmas?”

All of a sudden, wet bedding and a busy day ahead didn’t matter so much.  The Christmas music playing in my bedroom took on a clearer meaning.  I decided to talk to Aaron on our way to his day group.

He promptly turned on the Christmas CD that was in the player as soon as I turned on the van.  “Number 12,” he flatly said.  Aaron always follows the numbers of songs very closely.  “This CD has 14 songs,” he further explained.  “It’s on number 12 now.”

I smiled.  He seems to think that I want to know this information as much as he does.  But this morning, I was glad to know that I had only three songs to go before I could talk to Aaron once again about his last night’s question.

Number 14 song completely ended, and the CD went to number 1 again before Aaron removed it.  You do NOT remove the CD when the number 14 is still showing.  It must have moved on to the next song, just so you know.

I grabbed the moment.  “Aaron, do you remember asking me last night if God doesn’t like you because He lets you have seizures?” I asked. 

“Yeah,” he answered as he placed the CD in its case.

“Well, this is the perfect time of year to remember how much God loves you.  He sent Jesus down to earth to be born as a baby because He loves you and me that much.  You know that’s what Christmas is all about,” I said.

“Yeah,” he repeated. 

“So you don’t have to wonder if God loves you or not because you have seizures.  We don’t understand all that, but we do know that He loves you a bunch!  Jesus’ birth shows you that every day!” I continued.

We continued talking a bit as we neared his day group.  He was content with that answer.  And I noticed in my own heart a return of that mysterious “Christmas spirit.”  It had nothing to do with this:

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Or this:

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But definitely had everything to do with this!

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My Christmas verse this year, so appropriate for me and for Aaron this morning, is one we all know: “For God so loved the world, that He gave His only begotten Son, that whoever believes in Him would not perish but would have everlasting life.”  John 3:16

I need to run!  I have a load of bedding to put in the dryer.

Merry Christmas to all!

 

 

 

 

The Best Gifts Aren’t Wrapped!

Aaron had a birthday last week…his #33!!  My goodness, when did THAT happen?!  Of course, you know what that makes me…but since I’m the one choosing the subject of this blog, I choose not to choose to talk about ME, and MY age!!

Aaron unabashedly loves his birthday.  It’s one of the treasures of his way of thinking, that he doesn’t outgrow the pure joy of his special day.  Yet he also shies away from too much attention, too much hilarity, too much of anything that makes him feel like he must do something that he’s not quite sure how to do.  Yet this year, he was more relaxed with all the excitement and well wishes from others.  He showed it in several ways that were out of his norm, and it was wonderful to see. 

Yet the very best part of his birthday were the gifts.  Oh, I’m not talking about his presents and cards from family and friends…though they were great, and Aaron loved every single one. 

The absolute best part of this birthday, as the celebrating carried over for several days, was for me to sit back and watch the priceless gifts from some amazing people in his life.  I’ll try to let my pictures do most of the talking.  And speaking of talking, I did not get pictures of him talking to his sister, Andrea – or his Aunt Sandra.  But the smiles on his face and the conversations were very sweet indeed…even when he interrupted Andrea in the middle of her sentence to give me back the phone.  We got a great laugh out of that one!

His long and special friendship with Rosa continues as each year they make time to share their birthdays with each other at Chili’s.  Rosa’s mother, Louise, has become a dear friend of mine, as well.  They are a gift!

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I think it was Rosa who suggested that the servers sing to Aaron.  And Aaron, who has never wanted that attention, agreed to it.  Their gift to Aaron was fun…our server there in the middle was wonderful…and look at the joy on Aaron’s face.

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What can beat the gift of sharing birthday ice cream with your very special friend?

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On his actual birthday, Aaron agreed to take cupcakes to his day group.  He has NEVER wanted to do that!  I was so happy! 

We stopped at Sam’s on our way to Paradigm. Aaron, in his typical way, grabbed the attention of someone who works there and asked them where the cupcakes were.  That someone was one of the butchers, and as I tried to tell Aaron and the butcher that I knew where the cupcakes were, Aaron excitedly said to him, “TODAY is my birthday!!”  So this very kind young man told Aaron to meet him at the bakery down the aisle, and he gave Aaron two free cookies.  Look at the joy!

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There is the gift of the very patient therapy dog at Aaron’s day group.

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And the gift of our own Jackson that we took on a walk that afternoon.

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There was the look of total delight as he held his sister’s gift to him.

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And laughter as he later opened his brother’s Artsy Fartsy card…complete with fartsy sound effects.

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There was the gift of Barb, from Paradigm…and her daughter, Casady, coming for lasagna.

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And Aaron wanting Casady to help him open a gift.

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One of the most touching pictures on his birthday was this picture, sent to me by Barb…taken at Paradigm…of Aaron and his friend, Koren, with good old Piper.  To me, it sums up how impacting and touching are the friends in Aaron’s life. 

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How much our special one’s desire to have love! 

How many ways that love can be shown in their lives, even by perfect strangers! 

 Aaron may not always give a verbal thank you very easily, but the smiles on his face last week told it all. 

And that is a wonderful gift for me and Gary as well.

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Quit Chasing the Carrot

I was ready to take Aaron to his day group this morning, waiting on him to also be ready, and so I decided to go ahead and take our recycle items out to the recycling trash can outside.  I hurriedly passed by our Rose of Sharon bush that sits right outside the garage door, at the corner of our house.  This bush is a prolific grower, so as I passed around it on my way to the recycle can I was thinking that its branches were starting to once again crowd the walkway. 

“I need to remember to trim it soon,” I thought as I walked around it.  “It seems like I just did that.” And my mind made a note on my mental “to-do” list of yet another job that needed doing. 

But as I was dodging long branches, and buzzing bees, I was struck with the beauty of the blooms……the blooms that I so often take for granted because I’m too busy with other things “to-do”………and too focused on the work that was being presented instead of the beautiful workmanship right there in front of me.

I took Aaron then to Great Clips for a haircut before dropping him off at Paradigm.  When I got home, I took a few minutes to look at our Rose of Sharon bushes……really look. 

There is so much beauty there in each bloom.

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So much stunning color.

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Such intricate handiwork done by God.

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Why don’t I take the time to notice and appreciate this gift?  Because I’ve grown so used to it that it doesn’t seem important to me on a daily basis.  I see them every day.  They’re common, routine, old hat. 

Much like the morning I just had with Aaron.  A morning full of his routine……coffee, shower, always talking, computer, get him out the door…..nothing fantastic or amazing.

What if I decided I was tired of this routine?  And oh, I have!  But what if I decided not to participate in it anymore?  Things would really fall apart if I reneged on my responsibility.

But what if I realized that this is not just a responsibility?  My life with Aaron is a privilege……an opportunity.

How is that? 

Yesterday, over lunch, my friend Joyce told me again how she had read a book out loud to her two special needs sons.  She told me this again……because she reads that same book, or sometimes on a good day another book……every single night to her sons.  Again, and again, and again, and again……

It really hit me how wearying that sameness is to her.  In fact, she and I laugh about the sameness of our lives with our special sons.  I’ve written about Aaron and Skip-Bo…..Aaron and his bedtime routine…..morning routine……insistence on sameness. 

And sometimes I wonder, is this all there is for me?  I am limited in what I can do because of being tied down with Aaron.  There, I said it.

I mean, I’m limited in what I can do with my life OTHER than Aaron.  I can’t even commit to jury duty or volunteering because he might be having a seizure day or a meltdown day, and I would be a no-show. 

But as Joyce talked, and we laughed about the book reading, I told her that there is another side to this life.  She is giving glory to God in taking care of her sons, day after day, again and again and again. 

You see, God has given her…..and me…..and you…..the life we have.  Sometimes we think that there must be more out there for us.  If only I could do this, or do that……go here or go there……accomplish this or that like others do…..then my life would have wonderful, beautiful purpose.

When really, right in front of me, IS my purpose.  I often see only drudgery if I’m not careful.  Or at least boring sameness.

But God put me where I am, of that I am certain.  So why do I keep chasing the carrot, thinking that grabbing that “always out of reach” something will be where my joy and accomplishment will lie?

God wants obedience more than anything in my life.  He wants me to live this life that He planned for me, faithfully, here and now, with my eyes on Him and on the responsibilities that come with this life with Aaron……not with my eyes on the “what could be but won’t be.”  And then as a result, living in defeat and frustration and anger because I can’t catch that carrot.

So every day with Aaron is a day to point to God by being obedient in the sameness.  I point to God and give Him the glory He deserves when I am faithful where He has put me, not when I am unhappy and miserable.  Misery disappears, too, when I am thankful for this life.

Thankfulness and misery can’t be in the same room together.  The choice is mine.

 It’s good to step back sometimes and look at the big picture……to see how all the blooms grow together into a thing of beauty……not a thing that needs be dealt with, but to be genuinely enjoyed.   

I may not even see the beauty this side of heaven, but God does.  And someday He’ll share it with me, and I’ll be amazed at how the routine and the sameness and the seeming insignificance were actually huge and wonderful and just what He designed for me and for Him.

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Fast Forward

Sometimes one thing leads to another, and that one leads to another, and then another leads to another, and it can just be amazing to go back and look at the picture created.  This is what I’m seeing today.  I hope I can connect all the “things and anothers” as I try to show you the beautiful picture created by God.

It started yesterday evening when Aaron went with me to Dillon’s.  When we left the store and were getting into the van, the handle of my crossbody purse somehow knocked off my earring as I moved it over my head.  I found the back of the earring as it poked my skin.  Yep, it had gone down my shirt somehow.  But nowhere in sight was my earring.  I hurriedly searched for it, and so did Aaron, but we couldn’t find it.  I told him not to worry, because things like this can worry him, and off we drove to pick up some pizza for supper.

Still no earring appeared as we got out of the van at home, and I searched around some more for it.  “Oh well,” I told Aaron.  “It’ll show up when we least expect it…..or when I clean the van, sometime in the far off future.” 

We sat down to eat and Aaron asked the blessing.  His before-meal prayers, 99% of the time, contain two statements.  What he says varies depending on the day and the current events of our life, but very rarely does he say more than two things.  This prayer was no exception. 

“Dear Lord,” Aaron began.  “Thank you for the pizza.  And please help us find Mom’s earring.” 

I told Aaron it was wonderful to pray about the lost earring, and assured him that God loves to hear those requests.  And don’t you know that a short time later Gary went out to the van to conduct his own search, and he found my earring!  You should have seen Aaron’s face when I showed him that I was now wearing TWO earrings!  And then when I told him that God had answered his prayer!  Aaron’s face lit up like the sun.  It was priceless!

So the lost earring led to Aaron praying, which led to God answering in a sweet way, which led to……I trust……Aaron seeing how wonderful it is to pray about everything.

It was a good thing for Gary and I to see, as well. 

Then came today, which in comparison to what some others are enduring was really nothing.  But in the moment it was, for Aaron and for me, pretty awful.

I want to preserve Aaron’s dignity in this.  I needed to take him down to the air base to have a urine test repeated this morning.  I told him to use the bathroom when he got out of bed, and then by the time he drank his coffee and we got to the lab, he would need to go again.  I rehearsed the procedure with him as we drove to the base.  All was well.

That was short lived.  As Aaron got out of the van at the clinic, I saw that he was doing what I call “The Potty Walk.”  I was concerned, but he assured me that he could wait until he was in the lab bathroom, cup in hand. 

We walked up to the lab window, where the lone lab worker was a little harried.  I heard a door close and looked around to see that Aaron had already entered the bathroom…..NO cup in hand.  I told the harried lab worker to hold on as I scurried to the bathroom and opened the door…..to find Aaron preparing to go. 

“NO, Aaron,” I tried to whisper as I closed the door.  “Please, can you just wait until I get the cup??!!”

I rushed outside, went up to the window again, where the lone lab woman was realizing my dilemma and was trying her best to get Aaron’s info sticker onto his cup…..the cup he still wasn’t holding!  She slapped it on, and I quickly zoomed into the bathroom……to the most awful sight.

Let’s just say it appeared that the plumbing had sprung a huge leak, but the toilet and sink plumbing were fine.  Aaron’s, however, was not fine.

We got the sample somehow, but it’s probably not the best.  I wasn’t the best, either.  Such a mess!  I didn’t know what to do but to try to clean it up, mostly in an effort not to embarrass Aaron by having to tell the poor harried lab woman, in front of others, what had happened.  I had Aaron standing in the corner of the bathroom and kept telling him not to talk, because he talks so loudly that I knew everyone outside would hear.  Like they didn’t already guess what was going on in that bathroom!  “How many paper towels do they need in there?” everybody must have been wondering as they heard the automatic dispenser churn out towel after towel.

And poor Aaron.  His shorts were very obviously wet, and we had to walk out past people in the lab waiting room and in other areas as we left the clinic.  I waited for a few minutes after leaving the bathroom to see if the lab worker needed anything else from us, while Aaron hid behind the bathroom door.  Finally, we just left.  I felt like it was a walk of shame for dear Aaron.  And I was a mess of emotions…..very sorry for Aaron, and embarrassed, and just weak from all of it. 

The plan had been to take Aaron to Paradigm for his day, but instead we just drove home.  I really wanted to cry.  I stole glances at Aaron.  He was very serious, and very sorry, and very quiet.  That made me want to cry even more.

He turned on his music, of course.  It was the Zac Brown Band.  As we drove along the highway, song #4 and song #5 came on, Aaron checking the back of the CD box to confirm the title of each song as he always does.  Then came song #6, which is more of a rock song, and one I don’t like.  I was in NO mood for that today, so I used the button on the steering wheel to quickly go to song #7.  Aaron didn’t seem to notice, which was good.

Oh, but never underestimate Aaron.  It wasn’t long before he realized that song #5 had played, and now song #7 was playing.  What happened to song #6?

“Mom, did you go past song #6?” he asked.  I confessed.  He asked why, and I told him, and he was fine with that. 

As we kept heading toward home, I thought of how nice it would be if we could fast forward through parts of our life.  I would certainly have fast forwarded through this bad morning!

When we got home, Aaron showered and changed clothes.  Then he went with me to Aldi and to Dillon’s, even though I kind of wanted some time alone.  But once there, Aaron and I enjoyed the shopping, especially looking for what we needed for the lasagna he wanted for supper.  He helped bag the groceries and carry them.  He carried the heavy bag of dog food I got when we stopped at the vet, and he talked to Misha about Spiderman and about Star Trek, which always cheers Aaron up.  None of that would have happened if I hadn’t taken Aaron with me. 

Then at Dillon’s, Aaron saw one of the workers that we know as we checked out.  She stopped to talk to us before we left.  Her life is hard, always full of trouble, it seems……and today was certainly no exception as she shared some things with me.  As she talked, Aaron just stood there listening quietly to every word.  As we left, I told her that I would pray for her.

“Does she have a heartache?” Aaron asked me as we walked out the door. 

I was so surprised at his question, but more at his insight and the empathy he showed as we talked together about her. 

And then later, the best part.  We sat down to a lunch of leftover pizza, and again Aaron prayed as we held hands.

“Dear Lord, thank you for the pizza.  And help B have a good heart.”

Wow.  Just wow.

Aaron usually prays for Aaron, and on a good day he might pray about my earring.  But to pray for this friend that we really don’t deeply know……now that was touching and dear and so impacting.

That would never have happened if Aaron had not been with me…..and he would not have been with me if not for the awful lab experience earlier. 

If I had been allowed to fast forward through our terrible morning in order to preserve us from that bad time, then we would not have had this amazing and very good time.  This sweet time of Aaron genuinely listening to another person share her pain, and then genuinely caring enough to genuinely ask God to help her have a good heart.

So you see, one thing does lead to another which leads to another which leads to yet another.  Did Aaron’s answered prayer last night encourage him to pray for our friend today?  I think it did.  Then his bathroom accident allowed him to be with me to offer help today, and especially to be with me to listen to a hurting friend who needs his prayers. 

We all have those times in life when we want to skip song #6 and go right on to song #7……when we want to fast forward through the pain we’re facing and be done with it, moving on to other better things. 

But with God, His one thing that leads to another thing that leads to the other thing is what’s best for us.  It’s a good thing that He doesn’t allow us to fast forward, as hard and as terrible as some of the things are that we face.  He works all of it out for good if we let Him. 

Help all of us have a good heart, Lord. 

And help us not push the fast forward button.

 

 

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?!