Salads and Seizures

Aaron walked into the kitchen on Saturday morning a little over two weeks ago –  March 2nd, to be precise – and saw that I was boiling some eggs.  Ever hopeful that whatever I am cooking will be something he likes and something I am making for him, he stopped and watched for a few seconds.

“Mom, what are you making?” he asked.

I told him that I was making his favorite salad.  He stared blankly, as if he was utterly clueless about this favorite salad.

“You know, Aaron,” I continued.  “The salad you love so much.”

“The salad with Ranch?” he questioned.

“No,” I told him.  “You know, the salad with the eggs on top.”

Still blank.

“And the cheese and the bacon,” I explained.

“Oh yeah!” he finally said.

But he still gave no name to this mystery salad which really is his favorite salad!  Aaron has such a hard time with names of people and pets and, amazingly enough, food!

“You call it Egg Salad, Aaron,” I told him.  “But the real name is Seven Layer Salad.”

I knew he wouldn’t remember the name, but he knew it for now.  It was fun to watch his happy reaction to the thought of this salad for supper…whatever it’s called!

We were looking forward to our day and our weekend.  The day before, on Friday, Aaron had two seizures, and so he wasn’t able to go to his day group.  He missed movie day, which always makes me sad.  Thankfully, though, Aaron loves staying home and showed no regret at all.

On Friday evening, we all went to Wal-Mart to get Aaron’s weekend treats as well as some fun food for the weekend.  We were expecting a strong winter storm to hit on Saturday evening and into Sunday, so there was excitement mixed in with our fun.  We are snow lovers!  I had especially waited until Gary was home from work so he could go with us, just in case Aaron had a seizure in Wal-Mart.  We have learned that when Aaron has one or two seizures, he might have a drop seizure.  These seizures, drop seizures, are so dangerous and unpredictable.  This past year has seen Aaron have some serious injuries from falling.  Thankfully, our shopping trip was uneventful and was fun for all of us, Aaron especially.

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There were no more seizures during that night.  Aaron was happy as could be to think of his free day ahead…the anticipated snow…making chocolate chip cookies with me…steak for supper…AND his special salad!!  Whatever it’s called!  😊

Later that morning, before noon, Aaron was downstairs in Gary’s study.  Aaron was talking up a storm of his own with Gary, as usual.  I was in the kitchen, out of sight of the stairs.  Suddenly I heard a terrible crash…and then the noise that I definitely recognized.  A seizure!!

Gary was beside Aaron in an instant.  As I started down the stairs, Gary told me to get towels.  I was panicked and in tears as I ran for towels, hurrying them down to Gary.  There was blood all over Gary’s hands.  I knew this was serious.

As he started up the stairs, Aaron had fallen backward into a file cabinet, hitting the bottom metal handle with his head and actually bending it.  Aaron is usually not conscious for a period of time after a seizure, sleeping soundly, but not on this day.  He woke up, maybe because we were holding him and applying pressure to the gash on his head.  Or perhaps he awakened because of the pain.  He was combative and scared, something we’ve never seen.  He was fighting us, trying to get away and go up the stairs as we held him tightly.

Finally, Aaron calmed down.  He wanted to know why Gary’s hands were bloody, which of course was scary.  We explained what happened and told him we would need to take him to the ER.  Soon we were in the van, me sitting in the back with Aaron while Gary drove.   Aaron was coherent then.  The bleeding had stopped, but not his pain, of course.  Yet he was remarkably calm and understanding, a trait he often displays in these frightening times.  A gift from God, I’m sure.

I thought of other gifts from God as Gary drove.  We talked about how thankful we were that the sun was shining and there was no snow yet.  I was VERY thankful that it was a Saturday and Gary was home.  And we were thankful still that there is a good hospital and emergency room out here in the country not far from our house.

We continued to be grateful that Aaron was seen immediately and that the CAT Scan showed no damage to his head or neck.  Aaron was so compliant during the scan, even though it hurt his head and the bleeding began again, worse than ever.

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But oh, how my heart hurt for our son!  I couldn’t let him know that.  Gary and I stayed strong for Aaron and for each other.  I really wanted to curl up in a ball and cry, but God gave so much grace to be fully there for Aaron.

And there was Aaron, fully talking up a storm about nuclear bombs, of all things!  Talk, talk, talk he did in his typical Aaron fashion.  He knows a captive audience when he sees one, let me tell you!!

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God gave special strength to Aaron, especially, as he endured 8 staples being put in his head.  I knelt by his side, stroking his arm and face and talking to him during the ordeal.  With each staple, he would flinch…eyes closed…and mutter a soft “ow.”  I felt like my heart was being pierced each time.

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I tell you, our children with medical issues…and I know a lot!…are true heroes.  They endure more pain IN their lives, and disruption OF their lives, than I can fathom.  And yet they just keep on going.  One of our sweetest blessings is that Aaron doesn’t feel sorry for himself or complain about his lot.  He LOVES to talk about what happens to anyone who will listen, trust me, and even to perfect strangers…but he doesn’t act like he resents this life that he lives.

However, once in a while, he does give us a glimpse into his heart and his thoughts.  He did just that on Sunday as we made his cookies, lots of snow outside our windows, and his head still bandaged.

“Mom?” he began.  “Saturday, I thought, would have been a good day, but it wasn’t.”

I really wanted to wrap him in a hug…which he would have promptly pulled away from…and empathize with him about what a bad day it certainly was.  But I knew that I needed to point him to a principle that God points ME to, over and over.

Thankfulness.

“I know it was a hard day, Aaron, but it ended good,” I reminded him.  “What did you have for supper?”

“We had steak!” he answered with enthusiasm.

“And what else?” I prompted him.

He thought a few seconds.  I was hopeful that he just MIGHT remember the name of the salad.

“Triple egg salad!!!” he exclaimed.

Triple Egg Salad??!!

How on earth did Seven Layer Salad become Triple Egg Salad?!

Whatever.

So, for that moment, we were both thankful for Triple Egg Salad!

And in my heart, for so many other blessings as well!

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You Are With Me

One of our worst fears was realized on Saturday, March 2.  I mean, far worse things could have happened, I know that.  Yet it was a very scary day for us.

Aaron started up our stairs from Gary’s study, but had only taken a couple stairs – best we could tell – when he was hit by a drop seizure and fell backward.  The crash was startling!  Gary was nearby and I was in the kitchen at the top of the stairs.  We both immediately knew what had happened as we heard Aaron seizing.

It was a blur of blood, and panic (from me!), and fear and realization that Aaron was hurt.  He had hit a file cabinet, actually bending the bottom metal handle…with his head!  We got him to our nearby ER as soon as he could walk, which happened fairly quickly.  Aaron was coherent and I had finally calmed down, and Gary was his always strong presence – thank God!!

I’ll write more about that day later, but after our pastor’s Sunday morning message yesterday, my mind was drawn back to one of the scenes from that day in the ER with Aaron.  Poor Aaron had a huge gash in the back of his head.  We knew he would need staples.  Thankfully, the CAT scan showed no other head or neck damage.  Finally, it was time for the staples to go in.

Aaron had never had staples up to this point.  Aaron is one tough young man.  He’s endured so much over the years with his seizures.  But these staples scared him, for reasons I’m sure all of us can totally understand.

He rolled over on his side, face away from me.  So, I went around his bed and I knelt beside him, my face close to his.  I held his hand, and I rubbed his arm and face.  The first staple penetrated his scalp.  Aaron flinched and closed his eyes.

He kept his eyes closed for the rest of the procedure, grimacing with each staple.  I so much wished that I could trade places with him!

“What more must he go through?” I thought.

“Ow,” he softly said a few times.  But Aaron was calm, strong, and so brave…despite the pain that I’m sure radiated through his head, not only from the staples but from the hard hit.

Later, as Aaron talked to various people and at various times about his experience, I noticed that he talked about me being beside him.  Even though his eyes were closed, and he couldn’t see me, he knew that I was there as I talked to him and patted him and assured him that everything would be fine.  It meant more to Aaron than I realized.

Pastor Bob’s message yesterday at church was on Psalm 23.  We all know this Psalm, including verse 4:

“Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me…”

As we walk with God, through whatever valley He leads us, He is with us.

As I walk with God, through whatever valley He leads ME, He is with ME.

God is with me.

He is kneeling beside me…He is holding my hand…He is leading me…He is walking beside me.

Whatever my valley.  My sadness.  My fear.  My uncertainty.  My questions.  My anger.

You.  Are. With. Me.

Four simple yet profound words.

I can imagine God stroking my face as my eyes are clinched tight, trying to block out the pain of my situation.

I can see Him holding my hand as He leads me on an unwelcome path.

I can feel His arm around my shoulder as He leans into my world, urging me to lean into Him and His strength.

Even though I can’t physically see Him…even though I can’t actually feel the touch of His hand on mine…and even though I don’t understand at all what He is allowing in my life…this I do know.

You are with me.

And I am not alone.

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Plan B

I heard Aaron’s first seizure at 4:00 a.m. night before last.  I went in to be with him until it was over, assuring that he was safe.  And always, when this happens, my fuzzy sleepy brain tries to remember what plans I had for the upcoming day, and how those plans may need to be re-arranged.  Usually one seizure means others will follow, though in recent days that hasn’t been the case.  We just never know.

Not long after Gary left for work, I heard Aaron getting out of bed.  He came downstairs, eyes very droopy and tired, with his typical post-seizure headache and stomach ache his first concern.  I told him that he should go back to bed.

“I can’t,” he replied.  “I’ve already put my time in my notebook.”

You see, Aaron keeps a log of the exact times that he goes to bed and the exact times that he gets out of bed.  Every.  Single.  Day.

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In his rigid and organized world, he needs a period of time before he will go back to bed.  I know not to fight this.

Aaron went about his morning as best he could, with me listening closely for another seizure.  His falling seizures sometimes occur after only having one seizure during the night, so I was on full alert.

I was hoping that Aaron could go to his day group.  Friday is movie day and he enjoys that.  But he didn’t feel like going anywhere, he said, and I could see that he really was struggling.  Besides, if he had a seizure while out with his group, that could be very dangerous.

I knew that my day now needed to be changed, my plans shuffled or canceled.  Nothing in my day was hard to change, but it was inconvenient…and not only for me, but for my friend whom I was going to see after dropping Aaron off at Paradigm.  My day would have been:  take Aaron to Paradigm; go to Lolly’s house for a visit; run to Aldi for some groceries before our weekend snow comes; home with groceries; pick Aaron up from the theater; take Aaron to Wal-Mart for his “end-of-week” snacks; zip into Sam’s; and home.

Changing this day was far easier than having to reschedule a doctor appointment, for instance.  Yet having to switch from Plan A to Plan B can be irritating and at times difficult.  Poor Aaron can’t help any of this.  I’ve learned to be flexible.  And to be thankful that I don’t have to work, as having a job would be impossible.

As it turned out, Lolly came to my house.  She even brought some delicious little Brazilian cheesy bread balls that she learned to make during her years as a missionary with her husband in Brazil.  And cake!!!  She brought me…oh, and Gary 😊…some cake!!!

I was able to later run Aaron to Burger King for a take-out meal, knowing that if he had a seizure at least he was sitting down in the van.  Later, as he napped, he did have a second seizure.  I was so thankful that he was in his bed, safe from falling down!  And in the evening, we got to make our Wal-Mart trip.  Gary went with us so that we could both keep an eye on Aaron.  It was fun!  And Aaron wanted to make sure that I took a picture of him with this turkey breast that he LOVED for some funny reason!

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Not every Plan B in life is fun, though.  Many times, our switch from Plan A to Plan B is pretty devastating, and certainly not easy.  And as believers, we know that God has a plan and a purpose on this path upon which He places us.  Yet He never said that our path will be rosy.  Most often, it is not.

God told us to take up our cross and follow Him.  He did not say to take up our basket of May flowers and follow Him.

One of the most impacting books I have ever read is The Cup and the Glory, written by Greg Harris.  Harris talks about what it means to follow Christ.  Drinking the cup of suffering is what brings glory to God and great growth to us as His followers.

In Acts 16, during Paul’s second missionary journey, we see a profound example of God’s perplexing leading in Paul’s travels.  Blessings had been abundant to Paul and Timothy.  The Greek phrasing in verses 5-8 is so telling.  The words “on the one hand” are soon followed by the words “on the other hand.”

On the one hand, churches were growing and being strengthened…but on the other hand, as Paul tried to travel to Asia, he was forbidden by the Holy Spirit to go there.  Later, as Paul and Timothy tried to go to Bithynia, they were once again stopped by God.  They finally ended up in Troas, where they never intended to go.

That road to Troas led through high mountains and was very difficult.  Why did God take Paul away from his intended destination, only to place him in such a strenuous and uncertain place?  Why did Paul and Timothy have to walk so long and so wearily through barren land full of dangers, and with no ministry taking place?

But Paul walked.  He kept walking in faith and in obedience to God, not understanding the reasons but fully understanding that God knew those reasons, and that was all that mattered.

Harris says, “It’s easy to walk with God when He exhibits the visible hand of His blessing.  However, Jesus calls us actively and continually to walk with Him – even when we can sense neither His presence nor His blessing – and not merely when you see Him feed the 5,000.”

Our goal in life should be to keep our eyes on God, not on our destination.  We may head one way, a God-honoring way, only to be re-directed by God onto another path.  Keeping our eyes on God during those disappointing times is key to experiencing His peace in the middle of our puzzling questions.

Our main goal on our journey is to be God Himself.  To know Him, to honor Him, to serve Him…wherever we are…is where we need to be focused.  God alone.  Through our questions, our tears, our concerns, our anger…God knows, and He cares, and He has a purpose.  His purpose is far greater than we will likely ever know on this earth.

Plan A?  Not today.

But on the other hand, Plan B!!

“Trust in the Lord with all your heart and lean not unto your own understanding; in all your ways acknowledge Him, and He will direct your paths.”  Prov. 3:5-6

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Special Aaron

 

No mother can ever forget the birth of their babies, each one so unique and completely amazing.  That first baby, though, holds a very tender place in a mother’s heart.  Our first baby was Aaron.  He wasn’t loved more than our other two children, but that first birthing experience was one of a mixture of fear and uncertainty that culminated in total wonder at the little squalling miracle lying in my arms.

A son!!  I remember a feeling washing over me that I had never experienced before.  Total love.  I knew that certainly no other woman could have ever felt as blessed and…well…as special as I did in those new moments of motherhood.  I know now that this wasn’t true, but you could never have convinced me otherwise during those first fresh days of holding my little son.

I examined him from the top of his fuzzy head to the very bottom of his wrinkled toes.  Every detail was so perfect.  He was so tiny and complete…wispy eyelashes, button nose, tee tiny little fingernails and toenails…just every single part was truly a work of art from God.

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Lots of years have passed since my first introduction to motherhood in that old wooden WWII hospital at Fort Carson, Colorado.  So many details of Aaron’s future, unknown to us back in 1984, have woven themselves into our own future now.  Never, ever did we dream that our Aaron would continue to be defined as “special,” but now in the sense that we often call “Special Needs.”

Sometimes I still shake my head in disbelief at that title.

Yet there is no denying the reality of this path upon which God set our steps.  Aaron’s first seizure in Germany at the age of seven led us to a diagnosis of Epilepsy.  Seizures have never been out of the picture since that time other than for brief periods of reprieve.

Then later, at the age of 14, came the surprising diagnosis of autism…Asperger’s Syndrome.  This wasn’t a common condition at that time.  I didn’t even know what Asperger’s was.  But we’ve all learned along with Aaron just what it means to live with what we call “Special Needs.”

It’s very interesting to look up this word “special.”  It’s a word that we so routinely use that we don’t give it much thought.  So, I did just that…I looked up this special word in the dictionary…and I was touched by just what it means to be special.  Especially what it means to Aaron, and so to us as well.

 

SPECIAL:  Distinguished by some unusual quality.

Our family would laugh at this one, not because we’re cruel but because Aaron has LOTS of unusual qualities.  Many days I wish it was only one.  Some are funny; some are annoying; some he repeats over and over; some are loud; some are very embarrassing….

 

SPECIAL:  Readily distinguishable from others of the same category.

Well, that’s one way to put it.  He’s very readily distinguishable when he stops in the crosswalk at Wal-Mart and holds his arms up just to be sure that traffic knows to stop!  He’s totally distinguishable when I remind him to look UP as we leave the store and enter said crosswalk again so that he looks for traffic and not at his feet…and he stops in the middle of the crosswalk and looks up at the SKY!!

He’s also very likely to hover at the door of the nail salon like a stalker, watching the women getting their manis and pedis…fascinated by the smells and the sounds…but a little alarming as he curiously stares.

He whistles…he claps…he sings.  Or he stands in the little restaurant in the Wal-Mart entrance and delights in the fact that the attendant thinks he wants to order.

 

SPECIAL:  Being other than the usual.

Usual is so boring to Aaron.  Some days I wish for boring.  But Aaron does add a spark to life on most days.  Sometimes a raging fire, honestly.  Like Gary and I envisioned Friday evening in Cracker Barrel when Aaron decided to take the globe off the oil lamp…that was lit…with real fire.  All was well.  Nothing to see here, people at the table beside us.  Move on.

 

But there is also one more meaning to this word…this special word.  And this meaning is by far my very favorite.

 

SPECIAL:  Designed for a particular purpose.

You see, Aaron was indeed designed by God, just as much as all the other babies ever conceived.  He was designed for a particular purpose.  I don’t always live in that reality, especially on the hard days.  But I know deep in my heart that God made no mistakes with Aaron.  God’s sovereign hand made Aaron just the way he is.  It’s up to me to live in that knowledge, especially when I’m tired or upset or discouraged or embarrassed.

Honestly, one of the huge purposes that I’ve seen Aaron have in my life is to remind me of how much I need God.  How much I need His love and forgiveness and patience and strength.  How when I am weak, then God is strong FOR me and IN me.

 

Aaron reminds me to give:

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Aaron reminds me to love:

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Aaron reminds me to laugh:

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Aaron reminds me to enjoy life:

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Aaron reminds me to keep going when things are tough:

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And God reminds me of these truths:

 

For You formed my inward parts; You wove me in my mother’s womb.

I will give thanks to You, for I am fearfully and wonderfully made.

Wonderful are Your works, and my soul knows it very well.

My frame was not hidden from You, when I was made in secret;

And skillfully wrought in the depths of the earth;

Your eyes have seen my unformed substance;

And in Your book were all written the days that were ordained for me,

When as yet there was not one of them.    (Psalm 139:13-16)

 

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My Special Needs

I hate Mom.

Those were the last words I heard Aaron mutter softly as he lay in his bed after a very rough evening.  I heard those words on the baby monitor that I keep on my nightstand so that I can hear seizures.  I would rather have heard a seizure, honestly. 

And I was so frustrated at his hurtful words that I picked up the monitor, pressed the talk button, and nearly…very nearly…spoke angry words that would have only exacerbated the situation on so many levels.  I am glad I didn’t.

Earlier in the evening I had written another funny clip about Aaron on Facebook.  I love sharing the very unique and humorous ways that Aaron speaks.  His take on the world can be side-splitting hilarious and so refreshing.

But he has another take on the world as well, and that take can take a huge toll on me and on Gary…and take every tiny ounce of patience that we have left in order not to erupt ourselves into verbal onslaughts that will match Aaron’s, word for word. 

I knew that we might be in for a rough night when Aaron was still playing a game on his computer after 9:00.  He’s usually downstairs long before then, hovering over me, waiting for me to finish whatever I am doing so that we can watch one of his TV shows on his DVD set.  But 9:00 came and went, with no return of Aaron who had previously asked me to assure him that we would watch a DVD at his precise, set time.

Upstairs I went, only to find him playing one of his favorite Lego Star Wars games on his computer.  When Aaron plays a game like this, he has a very hard time stopping it and saving it.  He must reach a certain point in the game, and in his mind, before he will turn it off.  For over an hour he kept repeating the same phrase, loudly: “I’m coming!!”  Over and over and over.

I knew better than to rush him, but I also knew that the clock was moving toward bedtime and not TV time.  We were in for it, I knew it…and I was right.

Aaron finally rushed downstairs and barreled into the family room, eyes wide and words rushing out. 

“Can we watch Bones, Mom?!!  Can we??!!”

I reminded him of the late hour, but he didn’t care one bit about that.  He was in such a tizzy.  And he could tell that I was tired and didn’t want to stay up late.  His whole nighttime routine was a wreck now, due to no fault of mine, but Aaron refused to take responsibility. 

Mom was mean.  Mom was dumb.  Mom didn’t care.  On and on.

He turned his DVD on.  Turned it off.  More yelling.  Turned it on.  Turned it off.  Asked if I was crying, over and over and over…for Aaron does NOT like to see me cry.  I wasn’t crying, but he didn’t believe me, so he stared and stared at me.  And he also does not like for me to make funny eye or facial movements, so he stood in front of me as I sat on the couch, demonstrating to me with his own face the looks from MY face that he would not tolerate.

It was just too much.  He looked so funny, really, that in my tiredness I did the forbidden…I laughed.  Aaron thought I was laughing AT him personally.  He erupted and we traveled even further downhill than we already were.

It was a wild hour after that.  He was in and out of his bedroom…in and out of bed…in and out of our bedroom.  He was calmer talking to Gary…angry talking to me.   Say goodnight, Mom…no, don’t say goodnight, Mom.  I don’t want your goodnight kiss…OK, I do want your kiss. 

He calmed when Gary came upstairs.  He let me hug and kiss him goodnight.  And then the soft, muttered words that I heard on the monitor…words that showed he was still upended and very frustrated. 

My calmness during the whole episode only seemed to fuel his flames.  The realistic, upset words I did say seemed to appeal to him more than soft kindness.  So strange how that works.  So strange how that complex brain of his works.

Seizures are honestly easier to handle than are the behaviors.  Seizures are scary and sad.  Behaviors are exhausting and often hurtful.  People feel sorry for seizures.  But behaviors…what do you do with behaviors? 

And behaviors leave me feeling like a very unfit special needs mother.  I am not above the anger and the lost patience that Aaron’s anger and lost patience trigger in me.  Then comes the guilt and regret.

I lay in bed last night, Gary’s calmness and nearness giving me comfort.  But my tension was strong, too, and sleep wouldn’t come.  My tossing and turning was keeping Gary awake, too, I knew.  I would relax and then thoughts would wash over me.  I would relax again and Aaron would stir, seeming to be restless as well. 

There are so many thoughts and emotions that go through my mind after these episodes, infrequent though they have been lately.  How could I have handled it differently?  What should I have said?  What should I have NOT said?  Guilt for not liking Aaron when he’s out of control.  On and on.

What I do know is that God is always there for me.  He heard me last night, there in the dark, praying and confessing and praising.  He knows my form.  He knows that I am human and that I am weak and that I need Him, totally.  He knows that I get frustrated and tired, and that I do love Aaron with all my heart.  And He knows that though I love Aaron, sometimes I don’t like him when he’s angry and full of hurtful…and hurting…words.

Being a mom of a child with special needs is never easy.  Some days…and happenings…make it harder than others. 

But then I think about God, and how often I am that child with special needs and how much He gives me His love and His grace. 

That’s the kind of parent I need to be with Aaron.  Forgiving him…understanding but not condoning…and opening my heart and my arms with love. 

I have no superior wisdom or strength.  I mess up…I give up…I look up.  And there I find God, always understanding and giving me grace. 

God’s a good Father to me, his special needs daughter.  I need all He gives to me and does for me, for I have nothing of my own.  He certainly didn’t choose me for this parenting role because of anything I have to bring to the table.  He chose me because…well, I don’t really know.  But what I DO know is that He is all-knowing about what is best, and that in all of this I see MY special needs every bit as much as I see Aaron’s.

And in the seeing, I am shown God’s great love and great grace and how His arms are always under me, bearing me up when I am at my weakest.  Which is often.

God loves me, His special needs daughter. 

And He will give me all that I need to do the same for Aaron, His special needs son that He entrusted to my feeble care. 

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Aaron’s Bowl of Normal

Walking through the family room the other day, I noticed something red sitting on the end table beside Aaron’s favorite chair.  I knew he had left his bowl of Hot Tamales on the table, but there was something else.  I stopped to look, and this is what I saw.

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Aaron had set aside these two Hot Tamales.  This is nothing new, so I knew exactly what it meant.  It meant that Aaron realized these two Hot Tamales were a different shape and size than his normal Hot Tamales.  To Aaron, they don’t fit into the bowl of regular candy.  They are not the norm.  They must be separated from the usual candy, sitting there until all his candy is finished, and then thrown away.  He will not eat them.  They are unacceptable to him. 

Our Christmas holiday is still a warm memory to me.  However, not every memory with Aaron is warm and fuzzy.  Those unusual Hot Tamales help explain our family dynamic perfectly.

Aaron both loves, and somewhat dreads, our Christmas celebration.  He loves the anticipation of opening his gifts.  He looks forward to time off from his day group…time to be at home relaxing and filling his days with whatever he wants.  He likes seeing what food I am making, hoping that some of his favorites are in the mix. 

However, Aaron’s autistic mind is also very aware that his structured schedule is about to change.  He knows that he will soon need to share his ordered world with Andrea and Kyle…with their three dogs…and with Andrew.  He even must share his bathroom, for crying out loud!  In his mind, he is already setting aside some of these daily issues much like he does his unacceptable Hot Tamales.  They are not the norm, so they are cast off mentally as being unpleasing…yet in this case, necessary.

Aaron in many ways looks forward to our family being together for Christmas, just as he looks forward to eating his candy that is poured into one of his ever-present bowls.  But soon comes along those pesky interruptions into his ordered life…interruptions that are very difficult for him to sort and to deal with properly.

Christmas Eve is most often the time for what Andrew calls “Aaron’s Annual Christmas Meltdown.”  We say this with a smile when Aaron doesn’t hear us, but we also say it with some dread for what might come. 

Two of our best Christmas traditions occur on Christmas Eve.  My favorite is the Christmas Eve service at our church.  Each year we ask Aaron to come, and each year he turns down our offer.  The large crowds…all the talking with strange people…some of the louder music…and having to sit quietly for such a long time…are all very stressful to Aaron.  We understand this, and we don’t push the issue.  We know better.  But each year I’m sad that our picture in front of one of the beautiful Christmas trees does not include our full family.

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When we get home from the Christmas Eve service, our other fun Christmas tradition takes place.  Christmas Bingo!!  Otherwise known as the usual cause for “Aaron’s Annual Christmas Meltdown.”  Our Christmas Bingo is fun and loud and unpredictable.  Aaron greatly dislikes loud, unpredictable fun…which to him is NOT fun!  This is why Aaron shuns parties of any kind.  He says that people act weird at parties.  Never mind that on any given day one may hear Aaron clapping or saying outlandish things as he watches a show or scratching himself openly in Wal-Mart.  Aaron sees his actions as totally fine, but when Gary acts goofy as he announces each Bingo card, Aaron’s frustrations grow and grow.  Add to that our laughter and joking, winning or NOT winning each round, prizes that disappoint…well, Aaron’s bowl of normal is quickly being emptied and he is usually simmering as the game progresses.

This year, Aaron joined us after we had played a couple rounds.  He hovered near the table, observing us and seeming to need time to gather his courage to sit down at the table.  Aaron usually targets one of the guys, especially Kyle since he is new to our family and Aaron still isn’t sure it’s OK that he married Andrea.  He targets Andrew because Aaron has always been somewhat jealous of his brother.  And he targets Gary because Gary is Dad, and Dad is acting way too silly. 

When Aaron sat down with us to play, we all quietly decided to try to make the game as non-silly as possible.  We also decided to be as quiet as possible when announcing that we had a Bingo.  However, this plan ultimately made us laugh even more…as quietly as possible but still not quiet enough for Aaron. 

But something else was also going on with Aaron.  Andrea later said it very well.  Aaron knew that things were very funny because we were all laughing, but he couldn’t figure out what the funny things were.  There were many comical moments, but none made Aaron laugh.  He was focused and intense and struggling very hard to keep from being angry.  There was nothing worth laughing about in Aaron’s mind.  Instead, he was wondering why we were all laughing at the gifts and at each other’s comments, and as we see every year, his tension was mounting and his fun meter was doing way down. 

My heart went out to him as I just watched him sitting on the opposite end of the table from me.  He had just won a prize and was so very seriously opening the little box. 

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He loved getting a Bingo, and I found myself wanting him to win every time.  But life isn’t like that, and I knew he needed to once again learn to be a part of our world…loud and puzzling and frustrating and disappointing as it is.  He can’t remove the parts of life around him that are not his normal.  He must adapt as much as possible, and we must also be allowed to enjoy our family life together with him when we can…when he can. 

There are small ways that we have learned to let Aaron be…to not ripple the water unnecessarily.  Like when he won a bottle of body wash, but it was ladies body wash.  With each other, we would have laughed at this…making fun of the girlie name on the bottle and teasing whichever guy had the misfortune of winning it.  But not with Aaron.  We just kept quiet about it, watching Aaron stash his prize safely on the floor beside him.  And later that night, I found the body wash placed in the shower to be used by him the next morning.  I never said a word to him about it, and he happily used it…and smelled very nice!

We pick our battles with Aaron when we can, happy that he actually made it through this Bingo game without an eruption of anger.  His anger later spilled out toward me after I made a random comment about forgetting to put the ham cheese ball out to eat, saying that maybe we should start our game all over.  That did NOT make him happy…and neither did my hand motions that he copied angrily.  He was so done with that evening!  All of us were picked out of his normal bowl, trust me!

I was happy that his seizure during the night didn’t ruin his Christmas day.  I was happy that he was able to open his presents, though he was heavy-eyed and dreary after the seizure.  I was happy that his other seizure later that day was during his nap, and that he didn’t fall down. 

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And I was especially very happy that our neighbor came over and took our family picture in front of our tree.

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For really, our family isn’t complete without Aaron.  He may want to kick us at times out of his normal bowl, but then he does turn around and let us back into his life. 

And we do the same with Aaron, over and over and over again.  We welcome…we include…we modify…we adjust…we sigh…we go to bed tired – but we do love our Aaron and will always want him in OUR bowls as much as possible. 

 

 

What Mountain?

I heard it through the baby monitor a week ago yesterday…the awful sound of Aaron going into a seizure.  It was early, early in the morning – the time that we still call night.  I never do get used to that sound.  My heart still jumps as I am awakened and then hurry into his room.  As seizures go, it was not a long one.  Hard, but not long.  The scene was repeated a few hours later, which is nothing unusual.  Only two seizures, though, which is a blessing, and which is rather unusual.  Most often his clusters of seizures involve three or more.  Yet we have learned over the years that having only one or two seizures means he might have one or two more during the day. 

Gary and I both stayed home from church that Sunday due not only to Aaron’s seizures but also because of a strong snowstorm with howling winds that was blowing outside.  This storm also explained the seizures, as I have definitely linked many of Aaron’s seizures to low fronts moving through our Kansas atmosphere.

Aaron was fine all day.  He stayed busy, and he also napped some, but there was no more seizure activity.  That night, he and I watched a television program.  Afterwards, we were in the kitchen putting snacks away and getting ready to go upstairs where Aaron’s nighttime routine would continue.  I had my back to Aaron as I readied the coffeepot for the morning.

“I feel like I might have a seizure,” I heard Aaron say.  But he says this fairly often, and rarely does he have a seizure at that time.  I was getting ready to reply when I heard a noise.  I whirled around to see Aaron’s arms in the air and his face distorting in the familiar way it does when a seizure begins.  It was sudden and so unexpected!  Before I could take a couple steps and reach him, he fell backwards onto the tile floor…just like a stiff, falling tree. 

The sound of his head hitting the floor was sickening.  I screamed for Gary, who came running from downstairs.  I was terrified…more terrified that I remember being since his very first awful seizure when he was seven years old.  Our 34 year-old son was my baby at that moment, and I was distraught.  Aaron doesn’t like crying at all, especially my crying, so he would have been very unhappy if he had seen me at that point.

Aaron will often rally rather quickly from these seizures, so we waited to see if that would happen.  Sure enough, before long, his eyes opened.  Soon he was responding to our comments as he became more focused, and not long after that he was talking some and able to sit up.  We watched and waited, thankful to see him return to normal with no apparent damage done other than a knot on the back of his head. 

I had a hard time going to sleep that night.  I kept seeing him fall and then hearing the sound of his head hitting the floor.  Finally, I slept…but fitfully…playing the awful scene over and over all night long.  Aaron slept well and for that I was thankful. 

Not only was this seizure itself of great concern, but what it might signal was also very disturbing to us.  Aaron had a series of falling seizures back in the spring and early summer, sustaining some injuries.  Are those falling seizures returning now?  And if they are, then why?  Oh, the brain is so complex!  If only we could map its intricacies and understand its workings!  But no doctor or researcher has ever been able to uncover all the secrets of what God has created in these most complicated brains of ours. 

Gary and I had relaxed a lot since Aaron’s last falling seizure a few months ago.  But now that familiar fear was filling my heart again.  If left unchecked, I knew fear’s icy fingers would replace the warmth of God’s promises and plans on which He wanted me to focus.

The next morning, I sat as usual at my quiet time desk, asking God as I always do to speak to me the words He wanted me to hear on this day.  I looked down at my current book in the Bible that I was reading, and still am reading.  Zechariah.  Yeah, I know.  What does God have for me in an obscure minor prophet’s writings?  I mean, Philippians or James I could understand, and would look forward to multiple encouragements.  But Zechariah?

Yet one thing I have learned over the years is that God is alive all through His word.  He meets me in my need in every single part of scripture…not just in the more recognizable, pertaining verses but even in the less known.  In this case, the MUCH less known.  But this aspect of discovery in the Bible is so uplifting to me!  It’s like finding a hidden Christmas present under the tree and opening it to discover the most amazing gift ever!

So, on that morning I began reading where I had left off the day before.  The people of Israel were very discouraged as they faced the monumental task of rebuilding the temple in their ravaged homeland.  Obstacles were all around them and they could see no human means to finishing the job.  Dangers threatened their lives.  Nothing was as they hoped it would be.

But…

God spoke.  “Not by might, nor by power, but by my Spirit…” 

The people didn’t have the might.  The people didn’t have the power.  All that God wanted to accomplish would come by Him…by His Spirit. 

And then this verse, this phrase, is what jumped out at me on that morning.

“What are you, O great mountain? Before Zerubbabel you will become a plain…”  (Zechariah 4:7)

Have you ever felt like your worries and your fears and your problems are a mountain…a mountain that you can’t cross?  The concern over Aaron’s dangerous seizures was my large mountain that morning.  Scary.  Foreboding.  Impassable.

But God leaned down to me there at my desk and had me read exactly what He wanted me to read.  It was no accident that these were the verses I was on in my Bible study book.  God’s amazing grace washed over me.  Not by my might…not by my power…but by His Spirit. 

And that’s why I can stand squarely in the shadow of my mountain and say, “What mountain?!” 

God told Jeremiah, “Behold, I am the Lord, the God of all flesh; is anything too difficult for Me?”

Does it mean that Aaron won’t have another falling seizure?  No.  In fact, the next night he did have another one.  I was close enough to break his fall this time, but it was still very scary.  But all that evening I kept thinking, “What mountain?” 

God wants me to see, even in the hard times, that He will give me all the might and strength I need.  He will also take care of Aaron in the way He knows is best.  I have to trust Him for that. 

I want this mountain to be what I allow God to use to strengthen my faith…deepen my walk with Him…and confirm my trust in His sovereign plan for me, for Gary, and for our Aaron. 

Instead of seeing a mountain, I want to see God over and above it all.  To know that He’s in control.  To be still and know that He is God. 

Oh, I’ll still be upset with the seizures if they keep coming.  But instead of being out of control, I want to remember the One Who is IN control. 

What mountain?

Indeed! 

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