Author: Patty hesaidwhatks

I'm Patty and I write about our adult son who has Epilepsy and Autism, who still lives with my husband and me, and who is a package full of many surprises and joys and challenges and TALK! Lots of talking, which creates laughter and some other reactions as well. I also write about how God shows Himself to me in everyday life.

Movie Day With Rosie

A few days before Aaron’s birthday, he and I sat across from each other at our kitchen table.  He was excitedly telling me of all that he hoped would happen on his birthday…..dinner at Texas Roadhouse and then over to our house for apple pie and ice cream…..and most important, Rosie would be coming…..right, Mom?  Then he asked me if Rosie could bring her favorite movie to our house for her and Aaron to watch after they ate pie and ice cream, and after he opened his presents. 

He was so hopeful about that scenario.  I just looked at this man of mine that is still in many ways a child, and I felt a huge lump forming in my throat.  I tried to swallow it away, but the lump was also in my heart and that’s not so easy to swallow or wish away.  Sometimes I’m slapped in the face with the reality that Aaron wants to have a normal life where he makes his own decisions about things like time with Rosie.  Yet he must always involve his parents, because he needs our permission and he needs us to drive and he needs us to accompany him and he needs us to pay for things.  How would I handle a life like that?  And how do we parents handle our adult children’s desires for a normal life?  Those thoughts and emotions were swirling in my head as I heard Aaron ask again if I thought he and Rosie could watch a movie that night of his birthday.

As it turned out, they did not get to watch a movie because the night was getting late.  He and Rosie seemed fine with that.  Aaron was full of talk when they left, worried that Rosie didn’t have fun because she was afraid that our big dog would come upstairs……happy that she got to ride with him in our van to Outback and to our house……happy that Rosie’s mom and dad came, and that they all went upstairs to see his room.  So childlike, yet with adult desires, as well.

So it was wonderful when Louise called me the next day, and together we planned to take Aaron and Rosie to see the new movie “Big Hero 6.”  Aaron and Rosie anticipated it all week, talking and talking about it.  Aaron had already seen the movie and he knew that Rosie would like it.  And he was just very happy to actually be going to the theater again with Rosie, something that he has missed so much since she started going to another day group. 

Aaron and I met Rosie and Louise at the theater.  There came Rosie, clutching several crayons in her hand and carrying her coloring book.   As soon as we were seated in the theater, Rosie proceeded to open her coloring book and color away.  Aaron turned to me and started his usual talking, so finally I told him he should talk to Rosie…..and he immediately turned to Rosie and talked while she colored.  Then before I knew it he was talking to me…..and I reminded him to talk to Rosie…..and this scene was repeated several times until the movie started.

Aaron reached down to get his popcorn when he was satisfied that it was the right time to do that, which must be when the movie starts.  I nearly laughed when he held it far away from me in order to be sure that Rosie got first choice of a fist full of popcorn.  Louise brought a hamburger to Rosie then, so I took that time to grab some popcorn……but soon Rosie and Aaron were sharing the bucket of kernels again, and I just enjoyed watching their sweet routine that they know all too well from several years of sharing popcorn together. 

There sat Louise on one end, beside Rosie……and me on the other end, beside Aaron……with our two “kids” between us.  It was like we were chaperones.  It was fun and dear and sweet.  Of course, Aaron laughed too loud and too often, so I did my usual patting of his leg and whispering for him to be quiet.  Rosie seemed oblivious to Aaron’s loud laughter.  I’m sure she’s completely used to Aaron’s ways.

After the movie, as we walked through one of the lobbies, Aaron and Rosie agreed to let Louise take their picture beside Big Hero 6 himself……or sort of.  They show their happiness in this picture……adults standing there with a child’s delight.  That could also describe me and Louise as well as we laughed, and then as we walked out of the theater together, chattering and laughing in the cold. 
 
It was a good day……a sweet day.  I’m glad that we took the time to let our kids enjoy this movie day together.  Sometimes making these events happen can be a sacrifice of our time as a parent, especially us older parents who look around and realize that most parents our age are well beyond these years……or are doing these things with grandchildren.  Yet there are so many harder things we could be forced to do for our special needs children, and I know that we are surely blessed. 

Blessed, too, to be able to provide a way and a time and a place for our two special ones to enjoy part of a normal life together, participating in an activity that most other friends take for granted.  Aaron and Rosie have no idea of the way their happiness helps our mother hearts to feel soothed.  That sad lump in my heart was not an issue yesterday.  It was replaced by laughter and by joy as I  watched Aaron and Rosie have fun doing something totally normal. 

How do we parents of special needs children handle our adult children’s desires for a normal life?  Well, in this case, with a simple movie and some popcorn. 

Simply perfect!

The First Snow

 

The first thing I did when I got up this morning was to look out the window to see if we had gotten any of the possible snow that has been talked about over the past few days.  If you look hard, like between the cracks of our brick walkway out back, or on our roof, you can see a little faint dusting of snow.  It’s just a tiny bit, but it would have been enough at one time to keep up our old family tradition.

 

My mind goes back on this cold morning to other cold mornings of my childhood.  I remember how Mom would always be up very early, faithfully fixing breakfast for Dad before he left for his job at the railroad station nearby.  Then she would do the same for us, getting five breakfasts ready for us kids before we left for school……and somehow getting herself ready to head out the door for her own job.

 

But in the fall or early winter, there was often one magical morning that we would wake up to the sound of Christmas music.   Christmas music didn’t start playing at our house full time until after Thanksgiving.  One holiday at a time, please, in the King household.  However, there was one moment that Christmas music was played before the allowed time…….one day that it was perfectly fine to hear the early strains of We Wish You a Merry Christmas.

 

That time was on the occasion of the very first snowfall.  It didn’t matter if the first snowflakes fell in October.  If there was a bit of snow falling from the sky, Mom would put on a Christmas record……and if it was in the morning, we would wake up to the sounds of Christmas in the house.  And we knew…..we knew without even getting out of bed……that there was snow on the ground.  Of course, we would rush to the windows to see if there was enough to allow us to stay home from school, but there rarely was.

 

Mom and Dad loved snow.  Even when we all moved away from home, there was that one special day that our phone would ring and when we answered we would only hear a Christmas song being played.  None of us would have to guess or wonder what that was about.  We knew!  It was Mom and Dad announcing with delight that they had gotten the first snowfall of the season.  We all had a little contest going, hoping that we would beat them to the punch and be the one to call first with that Christmas music playing loudly, holding the phone up to the speakers so that they could clearly hear it.   Then we would put the phone to our ear and hear them say, “You got snow?!”  Yes, we got snow and it’s so beautiful, and on and on we would go…..laughing as if this was the greatest day ever.  And it was, in a sense, for Mom and Dad passed their love of snow on to all five of us children……and it was simple and sweet and so much fun to share that first snowfall of the season tradition over the years.

 

But it makes me a little sad this morning to know that I can’t call Mom to share my first little snowfall with her.  Well, I could call her…..but she would wonder who I am…..and why am I playing that music to her……and just what is that song, anyway?  Mom has Alzheimer’s and she doesn’t remember our old family tradition.  She doesn’t even remember our family.  So a phone call like that would only frustrate and confuse her, and would be upsetting to me as well.

 

I’m thankful for the sweet memories, though.  For the special traditions that our family had, as all families do.  I’m thankful that during the time Dad was dying of cancer, God allowed him to enjoy lots of snow during that November.  I remember him sitting in his wheel chair at their sliding glass doors, watching the snow and enjoying the hungry birds crowding their bird feeders on the deck.  Thankful that he got to see the beautiful Christmas tree all decorated the way he loved and listen to the pretty Christmas music.

 

It makes me realize how much we need to cherish our families and our times together, for it all goes by so quickly.  We live together for such a very short time before everyone scatters.  Brothers, sisters, children…..living here and there in this busy world.  So build the bonds of family strong while the children are young……develop the traditions…..and stay in touch over the years.

 

Merry Christmas, everyone!  It’s a little early, but there IS some snow on the ground.  If you look real hard, you can see it.  But it’s enough.

Birthday Weekend Highs and Lows

This past Saturday we celebrated Aaron’s birthday.  It was a big one, too, because Aaron turned 30 years old.  However, to Aaron it was a big birthday because every birthday of his is big in his book.  He had none of the qualms or sadness or excitement about turning 30 that most of us have……which is really good, I guess, because he doesn’t fret over age at all.  He frets over more important stuff, like are we sure we’re going to Texas Roadhouse and that Rosie can come and what time we’re leaving and can she come over to our house after dinner.  30 years old means nothing to him……supper and time with Rosie does. 

In fact, for months he and Rosie have talked about his birthday.  Every time I would see Rosie when Aaron was brought home from his group, she would ask me if she was going to get to come to Aaron’s birthday.  I think some of the other clients got tired of hearing about it, but Aaron and Rosie checked and double checked, over and over. 

A couple weeks before his big day, Aaron looked at the calendar and mentioned that his birthday was coming soon…..for real!  “Mom!” he exclaimed.  “At first it seemed like it was a long time for it to come!”  Now it was within sight, almost, and his excitement was building.  Aaron has never liked a ton of attention on that day, surprisingly enough.  He loves the food and the gifts, but he still doesn’t want singing or other attention focused solely on him.  He’s a mix of emotions around that day, for sure.

So I was surprised when he agreed for me to make cookies for him to take to his day group on Friday, the day before his birthday.  I offered, thinking he would say no, but instead he said yes…..and I was very happy.  It’s like having a child in grade school again.  I gave him cookie ideas, none of which greatly excited him……until I suggested M&M cookies.  He said a hearty yes to that idea, so last Thursday I made his M&M cookies.

He saw them cooling on the counter when he walked in the door that afternoon, but instead of sounding excited about them, he seemed a little hesitant.  I wondered if he would back out of taking cookies, not liking the thought of too much attention.  He barely looked at them when he walked by, so I pointed them out to Aaron with enthusiasm.  He flatly said, “It’s kind of crazy.”

“Oh, it’s not crazy to take cookies,” I told him.  “It’s a fun thing to do in honor of your birthday.”

“Well, what’s it mean to be in honor of your birthday?” he asked.

And I explained what it meant while he paced around the kitchen, acting almost scared of the cookies laying there.  I thought I gave a very concise, understandable explanation…..and then Aaron said, “But Friday is not my birthday.”

HaHaHa!!!  So typical Aaron!  Life should be in order, and celebrating his birthday the day BEFORE his birthday is very out of order.  Silly Mom, he seemed to be thinking…..but the next morning he did take the cookies and he shared them with his group.  Progress!

He didn’t know that I had planned tacos for our supper that night.  He had been wanting tacos for a while, so I thought that tacos would be a fun Friday night supper just before his birthday.  When he got home that afternoon, he grinned broadly when I reminded him that tomorrow was his birthday!  And before I could tell him about the tacos soon to come, he said, “Mom?  Can we have what I want for supper and not what you want?” 

I laughed and asked him what he would want.  He said tacos, and I loved the smile on his face when I told him that tacos was what I had planned.  His birthday eve was going well! 

The next morning, Gary and I both wished him a very happy birthday and he just replied, “Yeah,” as he walked away.  I made his usual apple pie that he loves, and he looked at it with very little visible excitement……but I know how Aaron’s mind works and I knew that he was taking mental notes of everything and enjoying it in his way.  The traditional birthday sign, the gifts and “30th” birthday balloon on the table, the apple pie…..all of it was important to Aaron, though he showed little outward joy about it all. 

We met Leroy and Louise, along with Rosie, at Texas Roadhouse…..but there was an hour wait, so we decided to go up to Outback.  Rosie rode in our van, she and Aaron sitting in the back, and talking the whole way.  No one minded changing restaurants and it worked out well.

After dinner, we headed to our house.  Rosie and Aaron rode with us again, talking as always.  It was a fun evening of pie and ice cream, Aaron opening gifts and cards, and plenty of talking again.  It was wonderful to see Aaron and Rosie enjoying their special friendship on this special day.  And Aaron loved having everyone go upstairs before they left so that he could show them his bedroom.  That’s what Aaron does!

 
 
 
Later that night, I told Aaron about all the many birthday greetings he had gotten on FB.  I told him that at that point he had 48 birthday wishes!  He smiled, and so I started reading some of the comments.  He patiently listened for a minute and then interrupted me to ask, “Are you going to mention all 48?”  I guess he had heard enough, so off he went to his room to examine his new birthday gifts and to unwind after a fun evening. 

The next morning, Sunday, he had a seizure at 4:30, and another one at 7:00.  Gary and I stayed close to him all day, and sure enough he had another seizure later that night while sitting in his desk chair.  He was fine and was able to get in bed after a while…..but as always, our emotions were mixed.

So happy he had a wonderful birthday……so thankful that he didn’t have a seizure day on his birthday……so sorry to see him seizing and then see the effects on his body and mind all day.  So thankful that he slept well last night and woke up being his perky self.

I saw a picture on Facebook this morning that said no matter what is going on, there is always, always something to be thankful for.  Being thankful is an exercise that all of us benefit from, and is certainly what God has told us to do. 

And thanks to each of you who love Aaron and wished him a Happy Birthday!!  Your love for Aaron blesses our hearts and encourages us more than you know. 

“Yeah,” as Aaron would say. 

 

 

A Time Change……And A Change of Time

Some of you may remember this post of mine from Facebook a few weeks ago:
          We need to change Aaron’s pick-up time for his day group from 10:30 to 9:30. We may as well have asked him to scale Mt. Everest in shorts and flip-flops…..go swimming in hot lava….play in a den of rattlesnakes…..sleep with a skunk…..walk on hot coals across America….. Get the picture? This could be a tiny bit difficult.
His new pick-up time was to begin this past Monday……right after setting our clocks back one hour on Saturday.  Oh boy!  A double whammy for poor old ‘I like things the same and I don’t like change and I like my clock to stay the same’ Aaron.  To say I was dreading it was an understatement.

I broke the news of the “fall back” time change to him on Saturday afternoon.  “Oh brother!” he said as he turned and went up to his room to ponder this complexity of life.  The extra hour of sleep meant nothing to Aaron.  Order in his world is all that matters, and this time change twice a year is full of disorder.  Not to mention all the changing of clocks!

He and I were playing SkipBo that evening.  We finished at 10:44, which was really 9:44 if the clocks had been set back……but was still 10:44 on most of our clocks because we hadn’t changed them.  Aaron, though, was already operating on the new time.  I found this out when I started putting the cards away and said I was ready to go to bed.

“If it’s 9:44 right now, maybe we should stay up now,” he said as he watched me put the cards in their box. 

“Why?” I asked. 

“Because it’s NOT 10:00!!” he not-too-patiently explained to me. 

“Well, it’s really 10:44 but in the new time it’s 9:44,” I began to explain. 

But nope, it was already a done deal to Aaron.  It was 9:44 now in his head, and he will not go to bed before 10:00…..new time, not old time.  Old time 11:00……new time 10:00.   9:44…..10:44……never mind.

 
The next day he realized that the digital clock by his desk had not been changed yet.  It’s a little difficult to set, so Aaron depends on me or Gary to do it. 

“Mom!” he said.  “The clock by my desk…..it hasn’t been changed behind yet.”   I hear that statement nearly every year, and it never gets old.  I would never think to describe our time change that way, but Aaron does.  Fall back……fall behind……he does remember.

Our other huge hurdle was to occur on Monday, when we would meet his group an hour earlier.  Another time change…..of a different sort…..but a change of time regardless.   UGH!!! 

Gary had suggested that something powerful might work to ease Aaron’s transition into this dreaded new pick-up time.  Something powerful….like sausage biscuits.  So on Sunday night I casually asked Aaron if he would like to leave early enough the next morning to run into Quik Trip to get a couple sausage biscuits.  He casually and quickly answered yes……and I nervously told him that we would need to leave around 9:10.  He didn’t bat an eye.  I relaxed…..just a little.

He was up early on Monday morning, and I realized that this weekend time change would possibly work to our benefit.  Aaron waking up earlier than normal was just what we needed with this new pick-up time.  Wow!!  Perfect timing for a time change after all!!

We had a few initial bumps that morning.  Some name calling…….almost yelling from Aaron…..a couple refusals.  But no throwing of anything breakable……no ripping up of special papers…….no bending his glasses.  And when I went in to tell him that it was nearly time to go, he was compliant.  Another wow!

We left the house without incident and got to QT in time to get his biscuits.  We waited…..and waited……and waited some more.  After a long wait and a few texts and calls, I learned that there was a miscommunication…..and that the new time would start the next day.  Aaron’s ride came, but we had waited an hour.  On most days, Aaron would have been beside himself…….frustrated, angry, tired.  But not that morning.  He was just fine as we sat there watching birds and listening to music and talking….of course.

And all this week, Aaron has been wonderful about the new time that he meets his group.  No anger or complaining or frustration……at all!!  This is truly a miracle.  I can only explain it as an answer to prayer, for I know that Gary and I were praying about it, and I know that many of you were praying, as well.

So thank you for the prayers……and thank the Lord for the timing of this huge change in time.  The clocks “changing behind,” as Aaron says, have been a blessing indeed!

The Bible verse that says our times are in His hands has taken on special meaning to me this week!

 

 

When the Unexpected Becomes Reality

 

I was at my neighbor’s house last Thursday morning as her movers were loading all of her belongings that she was moving to her new assisted living home.  I had run back over to our house to get Aaron and deliver him to meet his day group.  That’s when I got the text from Gary…..as I got Aaron off his computer, let Jackson out to do his business, and quickly checked to see if Aaron had taken his pills.  Gary’s text said, “I’m OK.  Small plane crashed on our building.”

 

What?!  I looked at the picture he sent, but the seriousness of the situation didn’t hit home with me even then.  I had no idea of how tragic and awful it really was.  But later, as we got Nora moved into her apartment, our other neighbor hooked up her television and turned on the local channel.  There was live coverage for the rest of the day……and I was so thankful that Gary had taken the time to text earlier to let me, Andrea, and Andrew know that he was safe.

 

Four people were killed, we found out as the day wore on……the pilot, and three people inside a simulator where the plane had crashed.  I couldn’t imagine the fear I would have experienced if I had not known that Gary was safe from the beginning.  My heart goes out to the families of those who died.  Who would ever imagine that you would go to work one day in Wichita and have your building hit by a plane?   Who would ever imagine getting that horrible visit from a chaplain bearing that terrible news?  And I knew it could easily have been me that received that news…..me that was left without a husband…..my kids left without their dad.

 

We don’t know, do we, what a day will hold.  A couple days before the plane crash, I was nearly involved in a serious car accident…..but it didn’t happen.  Gary could have been killed on Thursday in the FlightSafety building……but it didn’t happen.  What if it HAD happened, though?

 

Like it happened with Mary…..a mom I know who is in her early 30’s.  Less than two weeks ago, she was leaving a movie theater with her four young children, one a two month old, and she had a major stroke.

 

Like it happened with our good friends, David and Jennifer, the day after the plane crash.  David’s dad was scheduled to come home after routine pacemaker surgery, but instead that morning he suddenly died……without warning…..totally unexpected.

 

Like it happened that same day with other good friends whose daughter-in-law and two grandchildren were involved in a serious front end collision on their way to spend the weekend with a friend.  They survived, thank the Lord.

 

What do we do when the unthinkable DOES happen?  What do we do when the unexpected becomes our reality?

 

When we feel like we’ve been hit in the gut and we can’t breathe, the only thing to do is fall back into the arms of God.  How do we do THAT?  By making a conscious decision to trust Him, and to remember Who He is and what He has promised us.  Alec Motyer says, “When the trial comes that prompts the unbelieving ‘Why?’ we must rather drill our minds to hear the call for faith, to recall the Lord’s promises, and cast ourselves utterly onto the reliable rock of His Word.”

 

A couple days after the plane crash, a friend called me.  She was so thankful that Gary wasn’t killed or injured.  She made the comment that we all often hear…..”God is so good.”  And I have to ask myself…..if Gary had been killed or badly injured, could I still say, “God is so good?”  I pray that I could and that I would still declare the goodness of God no matter my personal outcomes, for God’s goodness doesn’t change because He might allow me to go through some tough times.  Paul told Timothy that God remains faithful, and I hope that through my pain and grief I would be able to say and believe the same.

 

This is why it’s so important to learn who God is now……to know his attributes BEFORE the traumas hit.  Our Wichita first responders had just participated in a mock plane crash drill a month before the plane hit FlightSafety.  This drill helped them be better prepared for the real thing.  Likewise, I know that I need to daily trust God in the many events of my life and to learn His character, so when the really hard times come I am better prepared to draw on what I have already learned about God.

 

“How blessed are all who take refuge in Him,” David said in the Psalms.

 

Not spared…..but blessed and held.

Stability

Now there’s a good, solid word for you……stability.  I believe that all of us crave stability even in the midst of changes in our lives.  Some changes are exciting……new friendships, marriage, a new job, a new house, new baby.  Yet even in the midst of these positive changes, we desire an inner stability….a steadiness in our lives at the core of our being.  If we find ourselves facing unhappy changes, then our inner stability can be threatened and we can become very unbalanced.

I remember losing my balance a couple years ago on our stairs in the middle of the night as I let our dog out to go potty.  I hung on for dear life as I rocketed down the stairs after losing my balance.  Our thick wooden door at the foot of the stairs was my stopping point, my shoulder slamming into it full force.  That instability resulted in major shoulder surgery with months of recovery and rehab, and still today I have a shoulder that will never be the same again. 

I know a lot of people facing instability in their personal lives today…..we all do.  I just heard last night about a dear 33 year old mother of four that I know who had a major stroke on Saturday.  I’ve had several conversations in this past week with parents who are terribly hurt and worried about wayward children.  We and our other neighbors are helping our little elderly neighbor, Nora, move to assisted living after losing her husband to cancer in May.  A year ago she never dreamed any of this would be happening.  Actually, none of us knows what a day will hold for us when we climb out of bed in the morning, do we?

These kinds of instability, and so many others, can rock our world.  We can be shaken to the very inner parts of ourselves.  But I also know that even when we are surrounded by so much instability, we can…..deep, deep in our souls…..have a constancy that never changes and is never shaken.  Of course, I’m referring to our relationship with God.  When you have a personal relationship with the One Who is always constant, then you know that you can lean on him when life becomes unbalanced, for He never shifts or changes. 

The first part of Isaiah 33:6 jumped out at me this morning:  “He shall be the stability of your times.”  I know this chapter is talking about the future, but I also know that we can apply this truth to our lives as believers right now, today, because it’s a truth about God that never changes.  What are your times?  What are my times?  What times are we each living in at this point in our lives?  Whatever it is….wherever we are…..if we know the Lord, He will be the stability of our times.

And I think of our Aaron, who in so many ways forces Gary and I to fall back onto the stability of God.  Aaron’s Epilepsy and autism are issues that we deal with every day of our lives…..and just when we think we’re somewhat coasting along in our version of normalcy with Aaron, something changes.  It could be a behavior or a health issue, but change is fairly certain to be constant with Aaron….if that makes sense. 

Gary and I were slapped in the face with this reality on Saturday night.  Aaron had one seizure during the night before, which is not at all unusual.  He has had seizures in his sleep for years after enduring all sorts of other seizures, day or night, during his young years and into puberty.   We have grown accustomed to rarely ever seeing a seizure when Aaron is awake…..except for one at the theater with his group in September and one at the YMCA a few weeks ago…..and then again Saturday night.

Gary and I were watching the World Series, and Aaron was sitting in Gary’s desk chair talking to us.   I looked down at my notebook on my lap, and in two seconds Gary called my name.  I looked up to see Aaron having a seizure, out of the blue and totally unexpected.  Gary was able to keep him from falling out of the chair, and when it was over and Aaron was a little lucid, we eased him onto the floor.

Aaron was conscious but he wasn’t with us.  His eyes were wide, his arms and hands kept lifting up awkwardly as if he was reaching for something, and he couldn’t speak.  He tried to speak, but all he could manage was a smile.  That was pretty heartbreaking.  Finally he was able to muster one word, with effort.  You can guess what it was.  “Mom?” he said.  I had to smile to keep from crying.  Aaron must say “Mom” at least a hundred times a day…..or so it seems…..so it was fitting that this was the first word he was able to say. 

We kept him with us while we watched the game.  I tickled his back, which he loves, while he recovered.  Soon he was talking again about aliens and wanting to go to his room to watch his alien movie, which we reluctantly let him do.  It’s just that we have this fear now…..that started a few weeks ago…..as we see him edging back into sudden daytime seizures while he’s up and around. 

On the next day, Sunday, we let him sleep.  He woke up too late for Gary and me to go to church, but we wouldn’t have left him alone anyway at that point.  We later took him with us to Sam’s, which he loved, and on the way home I told him that I would fix the Lasagna that he had been wanting.  That made him very happy.  I invited Nora over for lunch and to watch some football, not knowing if Aaron would be nice to her this time or not…..but he was perfectly nice and funny…..and we had a wonderful afternoon.  Of course, we had to endure watching some of Aaron’s Mountain Monster show that he was watching before we could change the channel to football. 

For the rest of the afternoon, after Aaron had gone back up to his room, he kept bounding down the stairs and coming into the family room to ask Nora some important questions.  Questions like:  Would you eat an alien egg?  Did you know that those aliens have concentradik (concentrated) acid in their blood?  Why is there a Queen alien?  Have you seen aliens hang from the ceiling?   Would you watch the movie, Alien?

With each question, Aaron would bend over and rub his hands together with delight…..and Nora would laugh and laugh.  He didn’t really care about the answers to his questions.  He just wanted to talk and to share his alien discoveries and to be the center of things…..which he is without even trying.

Later, he and I played Skip-Bo.  You would never have known he had such a strong and unexpected seizure the night before.  Life with Aaron has returned to normal.  Just now he came downstairs carrying a little dirty carrot from the bucket of garden produce that I haven’t yet washed.  He was so excited to hold that carrot and to ask questions about the carrot….and to let Jackson sniff it, of course.  Typical Aaron. 
 

 
We have the continuity…..the stability…..of who Aaron is mixed in now with that cloud of fear concerning his unexpected seizure activity.  Instability is at the back of our minds.  I know that’s to be expected because we love Aaron and we are concerned for him.  But I’m so thankful that we can lean on God when we feel ourselves getting unbalanced with worry, and know that He is “the stability of our times.”  None of these developments surprise Him.  He is here with us and here with Aaron. 

We all learn the deepest lessons in the hard times.  We test the solidness of God when the ground upon which we stand is uneven and giving way beneath us.  Whatever you’re going through, I hope that you have experienced the stability of God in the center of your pain.  He is there for you, constant and sure.  I pray that I remember this truth in whatever lies ahead as well.  

 

 

Where’s The Pumpkin?

Aaron went to the pumpkin patch today with his day group.  Every year that he has gone, he brings back a pumpkin that we place on our front porch.  Aaron’s always proud of his pumpkin patch pumpkin, and he loves seeing it sitting on our porch. 

Today he bounded in the door as always, jacket dragging on the floor.  He was full of things to tell me.  I got the first word in, though, as I quickly said hello and then asked him right away if he had enjoyed the pumpkin patch.  He said that it was OK, but he thought it was a little dumb.  That’s pretty typical Aaron.

He was more anxious to tell me something important, though, than to discuss anything else about the pumpkin patch.  “Mom,” he said in his urgent voice, with a sort of whisper sound thrown in.  I knew this was special, so I stopped what I was doing and I looked at him.

“Guess what I told Rosie today?” he asked. 

He waited, so I asked him to tell me what he told Rosie.

“I told Rosie that I love her,” he softly said.

We stood there, eye to eye for a few brief seconds, and then Aaron rubbed his hands together with delight and laughed a very happy laugh.

He then told me that Rosie gave him a hug.  And later he repeated the story to Andrea, with the same delight that he had conveyed it to me…..and to Gary, as well. 

Oh, after Aaron told me of his declaration to Rosie, I realized that he had not carried in a pumpkin.  I asked him where his pumpkin was.

“I gave my pumpkin to Rosie,” he happily said.  And off he went to his room.

Well now, isn’t that the way it is?  Mom is second fiddle now.  I may never get Aaron’s pumpkin patch pumpkin again.

And that’s the way it should be.   

Sharing Aaron

Share:  to partake of, experience, or enjoy with others.

Aaron, for some unknown reason, has been in a sharing mood lately.  It’s encouraging to Gary and me to see positive traits such as this in Aaron.  Anytime he thinks of others beyond himself, besides slapping them on the back or making a rude remark about them, makes us surprised and thankful.  His sharing of late has come in the form of bringing us little portions of his special snacks.  A couple cashews here, a few gummy bears there, a piece of gum thrown in the mix……it’s all been part of his sharing frame of mind recently.  Never mind that we are often fearful of actually putting any food item that Aaron brings us in our mouths.  We just never know where those hands of his have been, if you know what I mean.  According to our scientist daughter, being exposed to germs helps to build our immune systems.  Therefore, Gary and I should never be sick again in our natural lifetime. 

There are other forms of sharing that go on with Aaron, as well.  During supper a few days ago, Aaron told us about the song “YMCA” and how he had heard it on the radio in his day group van.  Aaron liked this song and he wanted to tell us all about it, and to ask lots of questions about it.  I noticed that Gary was on his phone and in just a few moments he held his phone up for Aaron to see and to listen…..to The Village People singing “YMCA.”  I just stopped eating and watched this scene.  Gary held his phone for Aaron as he watched Aaron’s reaction to the song and to the antics of The Village People as they did all the funny motions.  I watched Aaron’s face, too, but also Gary’s as I enjoyed the pure delight brought on by this simple moment.  Soon Gary pulled up another group, wanting to watch Aaron’s face when he told him to guess the name of this next group…..The Monkees!  Aaron laughed and we laughed as we both enjoyed the look of more delight on Aaron’s face.  “Yeah, yeah, we’re the Monkees…….”  

We were sharing Aaron…..and it was so much fun.

On Saturday afternoon, while Gary was immersed in being our IT man and working on my computer, I asked Aaron if he wanted to go out with me to do a little shopping.  He stood in the bathroom while I fixed my hair, hovering, thinking that his hovering would make me hurry and we could get this show on the road.  Soon he was coughing.  “You made my breath feel strong because of hair spray!” he sputtered.  That’s when he decided to wait for me downstairs.

Aaron’s all about shopping, always hoping that he’ll come home with some treat or item that’s just for him.  On the way to Big Lots, he asked, “Mom, is it about clothes?”  I assured him that this trip wasn’t about clothes, and he was able to relax then.  He helped me look at seasonal rugs, and then off we headed for Petco, where I told him I wanted to look for dog bed covers for Jackson……no rugs at Petco for me….and no clothes. 

We struck gold before we even got in the store, because there in the parking lot was a couple with a cart full of four amazingly adorable Mastiff puppies.  Aaron headed straight for them and they gladly let him pet their puppies.  Once in the store, Aaron had to show me the fish….the hamsters….the gerbils….the various birds….the ferret…..   I commented on how much the ferret cage smelled, so as we left the store, Aaron took it upon himself to stop at the front counter.  He didn’t care that there were people standing in line.  He stopped and informed the cashier that his mom said the ferret stunk, as he laughed and rubbed his hands together, and everyone stared at him…..and mom told Aaron to come on as she walked out the door like nothing at all was unusual.   Sharing Aaron…..

We ran into Bed, Bath, and Beyond….which Aaron confused with Bath and Body Works, so he was hoping it didn’t stink like all those things do in that store.  He didn’t mind the ferret but he thinks Bath and Body Works stinks?  Anyway, we found nothing in BBB, so I told him we would go to Kohl’s next…..and I didn’t tell him it has clothes.  We talked about fall, and I told him that I like this time of year and the colors of the trees.  “Yeah,” Aaron said.  “They don’t have leafs.” 

There were no rugs in Kohl’s, but Aaron found the coolest spider soap dispenser ever.  I would have hurried right by it, but not Aaron.  “Mom!!” he exclaimed loudly.  “Look at this!”  Others looked, too……sharing Aaron.

I suggested that we look inside Ross, right next door to Kohl’s, so Aaron gladly trotted along beside me…..ready to explore a new store.  It only took a second for him to see the hanging skeleton just inside the door…..and you know the rest.  We finally made it to the rug aisle, and looked at several styles and colors.  I would unfold one and look at it……put it back on the shelf and unfold another one……several times.  Aaron was about done with this silly rug business.  “Mom, you can’t make up your decision with rugs!” he said with a small measure of patience.  So I quickly made up my decision…..the one with dots, as Aaron described it, and we went to stand in the check-out line.

There were several customers in front of us on this busy Saturday.  While standing there, Aaron found a bag of gummy bears that I agreed to buy him.  He held his gummy bear bag but he was observing everything around him, as always.  At one of the counters there stood a man making his purchases…..a man with a very modern Mohawk hair cut…..and I should have seen it coming.

“Look at that guy’s hairdo!” Aaron broadcasted loudly.  The young lady in front of us turned and smiled while I smiled back, and also while I told Aaron to please try hard to whisper……but to try even harder not to comment on people…..in any way, shape, or form.  Please!  Not in ANY way, shape, or form whatsoever!  Sharing Aaron…..

We were finally driving home, rug and Aaron in tow…..and I was so thankful that either Aaron didn’t notice the other Mohawk hairdo man coming in the door as we left…..or he just decided that he would listen to Mom for a change and not comment.  Probably the former.  Anyway, as I drove Aaron said, “Mom, sometimes Brian at Paradigm does this.”  And I looked over to see Aaron comically trying to make his facial muscles move.  “And flaps his ears!” Aaron finished.   I laughed at the thought of flapping ears, which made Aaron very happy.  Sharing Aaron…..

Later that night, as I sat at my desk doing some things, I heard Aaron coming up the stairs.  Without saying a word, he plopped down several gummy bears for me.  I thanked him while determining in my mind if I should eat them, but Aaron walked away and I was saved from that decision for the moment.  But in just a minute I once again heard him coming upstairs, where he put even more gummy bears on my desk…..and walked out quickly.  Down the stairs he went…..and wouldn’t you know, soon he was headed back up.  He walked in my room again, but this time he didn’t leave me any gummy bears.  Instead he reached down and took some off my personal pile of gummies, smiled, and started out the door.

“Are those for dad?” I guessed.  And he said they were for Dad, and thumped down two sets of stairs to give his gummy gift to Dad.  Aaron sharing….

I looked down at my remaining gummy bears and saw three soft bears there on my desk calendar.  Three bears…..Aaron, Gary, and me, I thought.  How perfect! 

Gary and I, sharing life and sharing Aaron.

And Aaron, sharing with us…..more than just gummy bears.  Sharing his unique way of living, in many different ways, shapes, and forms. 

 

 

EXACTLY!!


Aaron can drive us a little….or a lot…..crazy with his desire for life to be predictable.  His life, that is.  He really doesn’t concern himself much with our life, to be honest.  He enjoys the sameness of every day, but rarely is every day the same, so he is forced to adjust on those particular days or moments.  Sometimes he adjusts with relative ease, and other times we drag him kicking and screaming into the world of change. 
 
Last week he knew that I was taking him to the lab for some scheduled blood work.  I had told him that he could take the day off from his day group.  We were going to the lab and then out to eat lunch at his favorite place, Carlos O’Kelly’s…….favorite because of the unlimited chips and salsa.  Aaron loves unlimited food, so he prefers Carlos O’Kelly’s to Chili’s, because at Chili’s we have to pay for the chips and salsa….and sometimes Mom doesn’t want to pay for that, of all things…..so, predictably, Carlos O’Kelly’s is his restaurant of choice.
He was chomping at the bit to leave for the lab….not because he wanted to go the lab but because he knew that Carlos O’Kelly’s would soon follow.  He came to my room repeatedly as I was getting ready.  It didn’t matter that my hair was wet…..it didn’t matter that I was in the process of drying my hair…..it didn’t matter that I was still putting on my make-up.  The question was the same each time:  “Mom, are we leaving now?”  And when I would say no, he of course would ask when we were going to leave.  A general answer would not do, but general was the best I could do at the moment…….so therefore, he kept returning as he hoped for an EXACT time.  I know better than to be exact, though.  A phone call or other interruption, such as a bad hair day, can mess up EXACT times…..and throw Aaron into believing that Mom is a liar because I didn’t keep my word.  And he doesn’t care at all about my hair….or my make-up.  His comment on my make-up recently was, “Do you wear make-up because you don’t want people to think you’re ugly?”  
Nice.
Finally, when Aaron returned again to ask when we would be leaving, I could say with confidence that we would leave in five minutes.  Finally!  An EXACT time!   I sat down at my desk to do a couple things in those few minutes, but soon Aaron was standing beside me, hovering.  He was silent as he hovered, until finally he said, “Is it 10:16?”  
“Is what 10:16?” I asked.
“Five minutes would be 10:16,” he informed me.  
Believe me, we left the house at 10:16.  And predictably, he watched every move the lab tech made and he watched her draw his blood even though she told him to look away and he wore his watch way up his arm…..as he always does.  EXACTLY as he always does!

Aaron loves taking Jackson on walks around our neighborhood circle.  Jackson is getting old, so we only take him when the temperatures are cooler.  One day Aaron asked if we could Jacks on a walk and I told him that we would do it later, when it was cooler outside.  “When will that be?” he asked.  I told him I didn’t know…..just that it would be later.  It wasn’t long until Aaron came back downstairs.
“What time will we take Jackson on a walk?” he asked.  “I don’t know.  Just later,” I once again answered.
This scenario was repeated several times.  Finally, after Aaron asked again what time we would leave, I told him that we would leave sometime after 7:00.
Just so you know, the word “sometime” is not concrete enough…..for Aaron.
He stood there silently, looking at the clock and processing the vague word, “sometime.” 
“8:00?” he asked.  
We left the house at 8:00.
Last week Aaron’s Paradigm driver, Lisa, had texted and told me that she would be a little late with Aaron’s pick-up.  As Aaron and I sat in the parking lot waiting on Lisa to arrive, he was getting stressed because she wasn’t there yet.  I told him that Lisa had texted me and that she would be a few minutes late.
“A few?” he questioned.  “What does that mean?”
“Well, I don’t know EXACTLY, Aaron,” I answered.  I reminded him about things like other’s schedules…..traffic…..car problems…..trains.
Aaron was silent for a minute.
“What time?” he asked. 
I guess he thought I hung my head because my neck hurt.
Yesterday morning he kept asking if Jackson could ride with us in the van to meet Aaron’s group.  I had to think about my morning before I answered EXACTLY that Jacks could come.  So several times after Aaron asked me this same question, I told him that Jacks could probably come.
Just so you know, the word “probably” is also not concrete enough……for Aaron.
“Stop with the probably!” he finally informed me.
And that is EXACTLY what I need to remember with Aaron.  Stop with the probably!  No probably for concrete Aaron!  
EXACTLY!!!

Can’t You Be Nice?


Aaron stayed home yesterday because he had three seizures during the night.  I let him sleep in so that he could recover.  He got out of bed, drank some coffee, and took his meds along with some pain reliever for his headache.  I needed to make a trip to Sam’s but I wouldn’t leave him at home by himself, so I asked him if he felt like going with me.  He jumped at that opportunity, seeing visions of a cart full of items that he wanted…..not paper towels and toilet paper and boring meat, for sure!  And the offer of eating lunch there was too good to pass up, so off we went, listening to music and listening to Aaron talk about everything he saw…..of course!
We had settled at our table at Sam’s with our pizza slices and glasses of water, when I decided to take a picture of Aaron.  He agreed to the picture only if I let him pose as a Star Wars clone.  He told me to send the picture out with the explicit description that he was making the face of a Star Wars Republic Commando clone…..the PC game, not the movie.  OK, got it, Aaron!  
He then asked me if I was going to use the shopping cart that was big and flat…..because then he could ride on it like Barb and Brandy let him do when they take him to Sam’s.  I told him no, I was not using that flat cart, and he was disappointed.  He continued to ask me about this as we talked during lunch, pointing out how others were using the big flat cart.  But they weren’t pulling a big Aaron on their flat carts…..which didn’t matter to Aaron at all.  He didn’t think it would be at all unusual for him to be pulled on the big flat cart…..like Barb and Brandy do.  
We finished our lunch and then walked toward the carts.  Aaron decided to try one more time to change Mom’s mind, asking me again if I would get the big flat cart for him to ride on.  Again I said no.  “Mom?” he asked.  “Can’t you be nice?”
So I reminded him that I had been nice to let him come with me.  I had been nice to get him pizza for lunch.  I was being very nice, I told him.
And he quickly responded, “Well, can’t you be nice a SECOND way?”
I laughed as I walked and Aaron lumbered beside me on our way to claim our cart…..our normal cart.  And in that normal cart we placed some items that made Aaron very happy…..and walking made him feel better.  He really didn’t need the big flat cart at all. 
 This morning, as I prayed, I thought about the comment that Aaron made.  Sometimes I question God’s direction in my life…..what He allows and what He takes away.  In my own way, I am Aaron.  I don’t always recognize how “nice” God is to me because my eyes and my thoughts are instead on the things that He is not giving me.  I want Him to, in a sense, pull me along on that big flat cart…..doing everything my way.  
God, can’t You be nice to me a SECOND way?  I know You have done this for me and that for me, but I also want this other thing.  I think I NEED this other thing.  But God in His wisdom says no….and if I but look, I’ll see that His plan for me, a normal cart, can also be filled with many wonderful items and blessings that I might have missed had He given me that other cart……that SECOND way that I so wanted.  
Help me, Lord, to stop asking You to be nice to me a SECOND way, and to be thankful and trusting for the way that You have chosen for me each day.