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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Aaron and The Wedding

 

Two weeks ago we had…a WEDDING!!!  Our first wedding!!!

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Our daughter, Andrea, was wed to Kyle Kester in a perfectly beautiful outdoor ceremony at the Texas home of Kyle’s grandparents.  It had rained a lot there, even the morning of the wedding; but God told all the weather forecasters that He was sorry to spoil their forecast…that He had lots of people praying for no rain, so no rain it was. 

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It was a small wedding, the way Andrea and Kyle wanted it, and was full of close friends and family who helped with everything and shared in our joy.  Even my brother, John, married them…and his wife, Jeanie, was the coordinator. 

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Family.  When all is said and done, is there anything or anyone more precious to us than family?  And especially at an event as special as a wedding, family is there.  The pictures are taken, the hugs shared, the laughter abounding.  Family love is everywhere during a wedding.

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Yet when all the wedding photographs are finally ours to see and enjoy, we will look at our family wedding picture and have one missing member. 

Aaron.

Aaron could have been there…and yet he couldn’t.  Let me go back in time and explain.

Kyle, from the first time he walked into our house nearly three years ago, was a natural with Aaron.  We love that about Kyle.  He is patient…treats Aaron as an equal…knows how to talk to Aaron…and knows when to redirect Aaron more than most people do at this stage in their relationship. 

Aaron has a very close relationship with Andrea.  Aaron is the older by 18 months, but he still sees Andrea in somewhat of a mother role in his life.  He loves to talk to her on the phone, almost always about himself, but still he wants to tell her everything about his current movie or game or activity. 

But two things happened when Kyle came into this perfect picture.  The first thing is that, to Aaron, Kyle was taking Andrea away from him. 

“I still want Andrea to be my sister!” Aaron exclaimed when he realized that Kyle just might be here to stay.  We explained and explained, over and over, that nothing would change…that Andrea would still be his sister, forever…and that she would still come to visit, and we could go visit her.  And that if they got married, he would gain a wonderful brother!

The second thing that happened to Aaron was the process of figuring out just who Kyle would be in our family, and particularly who Kyle would be to him…to Aaron.  Aaron struggles with just who is who in family relationships.  He may meet a couple and later say that the man is the woman’s dad, not her husband.  Uncles, aunts, and cousins are completely impossible for him to understand.  And brother-in-law?  Forget it!!

Aaron wants to forget in more ways than one! 

“I don’t NEED a grand-brother!!!” he blurted out one day as he expressed disapproval over the upcoming marriage. 

We didn’t even tell him that a “grand-brother” isn’t a thing. 

Many of Aaron’s thoughts about all this marriage business, and the dynamic driving his thoughts, will hopefully be the stuff of another blog one day.  Back to our decision now about Aaron and him coming to the wedding…

Andrea called late one Saturday night last December with the very happy news that this had happened:

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 Kyle and Andrea’s engagement was not unexpected at all, but the reality of it was cause for so much joy.  We were happy, happy, happy!! 

Yet with Aaron, we were slow to tell him the great news.  We knew that he would not be happy, happy, happy.  The next day, on Sunday afternoon, we told him what he suspected to be true…that Andrea and Kyle were engaged to be married.

Not long after, I looked out the window and this is what I saw.

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 Aaron was crunching up mulch.  This is his long-standing way of relaxing…of unwinding…of thinking…of dealing with stress. 

My heart just went out to him as I looked at him sitting there, alone with his mulch and his thoughts.  How difficult it was, and would continue to be, for him to adjust to this huge change looming in his relationship with Andrea.

I opened that door of my heart and I cried.  I cried off and on that whole afternoon…some happy tears for the engagement…some sad tears for the reality that is always Aaron.

My thoughts had already, for months, turned to how we would fit Aaron into a wedding.  Initially, I tried to figure out ways that we could make it work, having a wedding down in Texas where we wouldn’t have someone who could help us with Aaron.  I knew that Kyle’s sweet family would do whatever they could to help us.  But still…

A couple weeks after the engagement, everyone was home for Christmas.  We have such a fun time all together, laughing and eating and telling stories as we catch up.  But Aaron doesn’t have such a fun time.  He does for awhile, but then reality hits him.  He is not the center of our time and attention.  He must vie for his place, take his turn talking, and eventually come to the dawning conclusion that our interest in aliens and nanomites and volcanoes and outer space is waning after several hours…and most definitely after several days.

Then there is all the hilarity as we laugh and tease and hug.  The cherry on top is our annual Christmas Eve Bingo game, with gifts to be won or to be stolen…loud and long…and miserable for Aaron.  He does not like parties…he does not like emotion, including too much laughter…he does not like Dad being goofy as he directs the game…and he does NOT like having his gifts stolen. 

It inevitably leads to what Andrew calls, “Aaron’s Annual Christmas Meltdown.” 

And it is not a tradition that we treasure. 

But this is who Aaron is, down to his core.  He can’t help it and he can’t change it…and certainly neither can we.

So when we were all here this past Christmas, while Aaron was occupied in his room and with Andrea’s beautiful diamond sparkling on her finger, we had a family wedding talk.  Specifically we had a “how do we fit Aaron into a family wedding” talk.  And the consensus was unanimous:  Aaron would not fit into a family wedding.

It sounds harsh, maybe.  Unbending on our part.  Heartless.

But you see, Aaron doesn’t see things like we do.  He has no emotional interest in family events like we do.  What matters to Aaron…is Aaron.  I say this a lot, but it’s because it’s totally true.  Aaron wouldn’t care about a wedding, on many levels, just as he never cared about family funerals or celebrations or anything else that was full of other’s emotions.

Emotions drive Aaron nuts.  So does having his routine disrupted…sharing attention with others…sleeping in strange places…and having to be around lots of noisy people who are not aliens.  He would love it if they were aliens, but they are not.  Just another bummer!

And what if Aaron was having a bad seizure day on the wedding day?  That would have been just awful.

So our only reason for having Aaron with us would be FOR us.  For us to say that Aaron was there.  For us to have the whole family together.  For us to have the photos taken (which Aaron would HATE, by the way). 

Andrea and Kyle’s wedding day was a day for them, and for both our families.  A day to relish each other and to enjoy every sweet moment to the fullest.  Aaron, honestly, would have made it impossible to do so.

Therefore, Aaron stayed back in Kansas.  Abigail “watched over” him, as Aaron says.  She and her fiancé Corey, and Abigail’s parents, David and Melissa, had tons of fun with Aaron.  At least I like to think it was tons of fun for them.  Ha!  It certainly was fun for Aaron. 

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And let’s not forget Gracie and Cosmo, who became Aaron’s furry friends.  He loved every minute of doggie licks and snuggles!

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We all live life wanting no regrets.  But when you have a child with special needs, especially behavioral issues, you sometimes must shift around your definition of “regrets.”  We do regret that Aaron couldn’t be at the wedding, but we don’t regret our wise decision to not make him attend an event that he would truly detest. 

Our special Aaron definitely makes our life unique and forces us to sometimes make very difficult decisions.  Often the best decision for Aaron, though, is the hardest decision for us to make, but Aaron’s needs and his happiness is what must come first.   

And trust me, we’ve all learned that lesson the hard way over the years…more times than I can say. 

Now the holidays are right around the corner, and we’re about to see how Aaron handles his new…

GRAND-BROTHER!!! 

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Just Wait!

One night a couple weeks ago, I was with Aaron as we went through his normal bedtime routine.  I was particularly tired that night, having spent another long day getting me and Gary and the house and Aaron and our caregiver and our dog all ready for the trip back east that Gary and I were taking.  Seeming to feed off of my particular tiredness, Aaron was a particular slow that night.  I had hit the proverbial wall and just wanted nothing more than to lay my head on my pillow and go to sleep.

Speaking of, when Aaron is this kind of slow at night, even laying his head on his pillow is a drawn-out process.  It’s like he’s moving in slow motion as he makes sure his covers are pulled up just right, then pulled down just right, and then situated even further down so that he can ever so slowly sit on the edge of the bed and ease under the covers.  His head was still not quite on the pillow as he scooted his body over, but instead was leaning back on his headboard.  He even rolled his eyes back in his head like he sometimes does as he EVER SO SLOWLY…did I already say that?!…maneuvered his body a little lower under his blankets.  He looked like he was going to pass out right there.  Finally, he was situated with his head actually on the pillow where it belonged and his body totally under the covers.

But now Aaron had to get his arms out from under the covers for our goodnight hug and kiss on the cheek.  This part of the routine is necessary…arms under the covers, then arms out from under the covers…reaching up for me and our hug and a quick peck on his cheek. 

Yet nothing on this tired night was quick.  He was as slow as molasses in the winter, for crying out loud!! 

So I pulled the covers down for him and in doing so, I revealed my impatience to ever-observant Aaron.  He was more awake than I thought as he looked at me.

“Don’t be rushable!!” he reprimanded me sternly. 

I had to smile at his wording as I gave him a hug and a kiss.  Only Aaron could defuse the situation with his unique way of speaking. 

I’ve been thinking a lot about this issue of being “rushable.”  Seeing all the back-to-school pictures going around on FB…all the comments tinged with unbelief at how old a child is or what grade they’re in…and especially hearing the certain sound of mixed emotions regarding a child leaving for his first year of college or a job or marriage…has made me look at the reality of Aaron in a new way.  And yet it’s not really new at all.

Aaron had his first seizure a little over 26 years ago.  He is approaching his 34th birthday.  He is our oldest child and should have been the first to leave the nest for college or job or marriage.  But here he is, still in our home and still dependent on us.  This is through no fault of his own.  Gary and I know that we are on this path not only because of Aaron’s special needs, but even more importantly, because of God’s sovereign will in our lives. 

We know that God could heal Aaron, but for now He has chosen not to do so.  Over the years, I have quit focusing on healing.  I’ve learned it’s far more important to focus on what God has for me on this path, step by step, as I stay in His Word and as I seek to obey Him.  I want to hear from God, to learn, to grow, to be more like Him, and to share Him with others.  And God has used Aaron in SO many ways to point me to those very aspects in this life.

Yet I am not by any means a perfect example of peace in our situation.  I do not walk around with a cherubic smile on my face as I adjust my halo on my head.  Absolutely NOT!!  I get sad, and tired.  I think about our future, and definitely Aaron’s.  I get frustrated.  Sometimes I wish for things that are not in our picture now, and perhaps never will be.  And once in a while, I crack open one of those little doors of my heart and I peek inside, thinking of what Aaron is and what he might have been.  Those doors are hurtful and I know not to dwell there, but I am a mother and at times my eyes take a quick look as they fill with tears.

It’s at those moments that I know I must look at God and trust Him fully.  And I must let Him remind me that there is a very great reason for our paths of suffering…for all of us, for you and for me as we follow Christ.

Remember the story of Lazarus in John 11?   Lazarus was very sick, so his sisters, Mary and Martha, sent word to Jesus to tell him the news.  Jesus loved this family.  They were dear friends.  When Jesus was told that Lazarus was sick, He stayed two days longer in the place where he was.

Wait…what?! 

When we get news that someone we love is critically ill, we go to them right away.  But Jesus, instead of taking off right away to Bethany to see Lazarus, purposely stayed where He was for two more days.  Then when He did get to the town of Bethany, Martha and Mary both said to Him, “Lord, if You had been here, our brother would not have died.”   

Lazarus had died.  Jesus could have come sooner, but He didn’t and now Lazarus was dead and already buried in a tomb. 

And Jesus didn’t come sooner ON PURPOSE!

We know why Jesus didn’t go sooner and why He allowed Lazarus to die, because Jesus told his followers the reason right after He was told about the illness of His friend.  Jesus said that it was all being done so that the Son of God would be glorified. 

Aaron would say that Jesus wasn’t “rushable.”

Jesus let the situation continue because He knew the end.  Jesus knew that He would raise Lazarus from the dead in order to point to God…to give God glory…to show all those people another picture of the love and greatness of God.

Yes, it was hurtful to those that loved Lazarus.  It was especially hard on Lazarus to die, right?  But their hurt and pain was used by Jesus to point out the glory and the power of God.

How many times are we told in the Bible to wait on the Lord?  Wait for Him to show Himself.  Wait for Him to teach us.  Wait for Him to open a door, or to shut another. 

For me, it’s as if Jesus is repeating Aaron’s words:  “Don’t be rushable, Patty.  Quit striving.  Be still, and know that I am God.” 

I don’t know why Aaron has his special needs.  I don’t know what tomorrow holds, or next week, and certainly not next year.  But I do know that God is God…that He is good…and that He wants Aaron, through us, to bring Him glory.

We do that by trusting Him, by pointing out the wonderful ways He speaks to us through His Word, and by resting each day in His plan for us and for Aaron.

When I try to rush God…to come up with answers why…to explain and understand everything…to have plausible reasons…then I am not letting Him be sovereign in my life and I am not bringing Him glory. 

Don’t be rushable, Mom!!

Got it, Aaron. 

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The Reality

Three years ago, we planted sunflowers around the perimeter of our vegetable garden.  Aaron was SO happy that Gary and I had finally agreed to grow these giant flowers.  Aaron had wanted sunflowers for a long time.  They did not disappoint as they grew and grew and grew that first summer.

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Last year, Gary and Aaron planted some of the seeds that Gary had harvested from our first sunflower crop.  Again, the mammoth flowers grew steadily and gave us much beauty to enjoy.

This year we decided not to plant a vegetable garden.  Time constraints during the planting season, very late winter weather, some traveling, and severe drought caused us to make this decision.

One day, though, we noticed some plants emerging from the soil.  Sure enough, we soon realized that our sunflowers had returned.  We hadn’t planted a single seed this year.  These were volunteer sunflowers that had sprouted from old seed left in the ground from the year before.

Just a few days ago, there in our garden, was a welcome splash of color.  Sure enough, one of those volunteer sunflowers was blooming.  And it wasn’t long before Aaron also saw it.

“MOM!!!” he loudly exclaimed.  “Look at the sunflower!!  Let’s go see it!”

We walked over to the garden and looked at the pretty bloom, all bright and perky and sunny.  And of course, I took a picture.  Isn’t it pretty?

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But if you take a closer look, you’ll see more than one pretty sunflower.  And most definitely, if you take in the whole scene, you will have a new appreciation for how much we appreciate this flower.

Look at the sunflower stalk.  You notice that it’s missing something.  It’s missing leaves…lots of leaves.  The deer that call this area home have helped themselves to our sunflower leaves.  We didn’t really expect any of our sunflowers to bloom this year because of the damage done.

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And look at the background behind and around our struggling sunflowers.  The ground is parched and weedy and really quite ugly.

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So here is the reality of our garden this year.  It looks forsaken and ignored and certainly not a place of beauty.  It’s drab and dreary and dull.

Except for…this.  This beautiful, unexpected flower.

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What’s your reality today?  Oh, I’m not referring to your yard or garden.  What’s the reality in your life today?

Here’s a picture of mine.

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Many of you will know exactly what we are dealing with today.  After a welcome break of two and a half weeks seizure free, the low front that came in last night also ushered in seizures for Aaron.  I wasn’t really surprised, yet seizures are always concerning and sad.  And the loud thump very early this morning as Aaron fell out of bed during a seizure was most unwelcome, especially for poor Aaron.  Thankfully, he was uninjured, all wrapped up in his multiple covers like a cocoon.

Wet carpet, wet bedding, wet clothes…really, the least of my worries.  Another seizure a short while ago, and watching closely while Aaron is up and about, are my main concerns.  I can also change my schedule today, but I cannot change this reality that is a continual part of our lives.

That’s why reading the short devotional for today in the old Streams in The Desert was powerful and moving to me.  Listen to what George Matheson says about waiting for hope:

“Thou hast made waiting beautiful; Thou hast made patience divine.  Thou hast taught us that the Father’s will may be received just because it IS His will.  Thou hast revealed to us that a soul may see nothing but sorrow in the cup and yet may refuse to let it go, convinced that the eye of the Father sees further than its own.”

The eye of God sees further than my eye sees.  I see my surroundings in life, often ugly and stressful, but beyond what I see is what GOD sees…what God allows.

I have hope.  You, if you know and follow Christ, have hope.  Aaron may not be healed on earth.  But I have the hope of heaven, where he will be healed and where all will be perfect.

And I have here-and-now hope in God, which brings me peace…joy…strength.  We who follow Christ all have this wonderful hope, despite our heartaches and our deep valleys.

Look at what else Aaron and I found in our little sunflower patch.

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Future blooms, waiting to pop open and brighten up our dull garden even more.

Know that God is a God of hope.  Know that He will work out your problems for some good, unseen as it is now in your life.  Know that He has reasons beyond what you may ever know on this earth for the dark days you are facing.  Know that He will never leave you or forsake you.

“Strive to be one of those – so few – who walk the earth with ever-present consciousness – all mornings, middays, star-times – that the unknown which men call Heaven is “close behind the visible scene of things.”  (Streams in The Desert)

“For I hope in You, O Lord.  You will answer, O Lord my God.”  (Ps. 38:15)