Talking Points #3

Aaron’s been having what may be Myoclonic (jerk) seizures on occasion. While I in no way take these seizures lightly, what he said about it yesterday was pretty funny. He said, “ALL my arms and ALL my legs were shaking!!” Excuse me now – I need to go count his arms and legs to see just how many he has!

 

Aaron likes to call us Master, sometimes adding a not-so-flattering word with it, like Master of Darkness. It comes from some of his games and movies. Yesterday at Aldi, I told him to carry our bag of groceries to the van while I put the cart up. “Yes, Master,” Aaron replied. The young mother also putting up her cart heard him, and just smiled. I wonder what she thought? Either that I’m a very stern mom, or that we’re way too hooked on I Dream of Jeanie.

 

Aaron: Did we get any mail today?

Me: Yes, we got three things.

Aaron: Was any of it bad? (Junk mail)

Aaron (Before I could answer): Did Dad tear any of it in that paper breaking thing? (shredder)

 

Aaron: Mom, you know what I noticed the Olympics is all about?

Pause for me to answer.

Me: What did you notice the Olympics is all about?

Aaron: SNOW!! It’s all about snow!

We’ve explained Winter Olympics and Summer Olympics, but I’m not sure it stuck. ☺️🏂⛷️

 

On our way home from his day group:

Aaron: I’m STUFFED!! The bacon and eggs you fixed for breakfast, and then I had burritos!

Me: You had burritos for lunch?

Aaron: Yes! Barb and Brandy took me and Yolanda to get burritos.

Me: Were they good?

Aaron: Yeah! The people asked if we wanted beef or chicken for the insides! 🙂 I got chicken!

I never thought of burritos as having “insides.” Not sure I WANT to think of burritos as having “insides!”

 

I sent some food with Aaron to Paradigm today – peanut butter crackers, cucumbers, a granola bar – so he just told me that they stopped at Quik Trip and he bought two sausage biscuits and a slushie. He added, “Later I ate the food you sent so it would settle my stomach.” Tomorrow I’m just sending Pepto Bismol.

 

Aaron’s ear was bleeding, so I asked him what happened.

“I was scratching an itch off my ear!” 😄😄

 

I asked Aaron what movie they went to see today.

Aaron: We saw Samson! He was Noah’s brother, right?

And later: God gave Samson his strength. Then he could beat up people!!

I think we need to revisit that Bible story. 😁

 

Aaron walked up behind me at 6:44 this morning. He had just gotten out of bed, not even stopping at the bathroom first.

Aaron: Mom, guess what I saw?

Aaron then waited on me to guess.

Me: What did you see?

He reached into his right pocket. Nothing. He reached into his left pocket. Nothing.

Aaron (finally!): Spiders!

Me: WHAT??!! WHERE??!!

Aaron (very calmly): On my floor.

Me (not very calmly): OH DEAR!!!

I grabbed my glasses as I tried to gather my nerve and wondered if our exterminator could make an emergency call today…or if another emergency call would be made and I would soon be in an ambulance.

Aaron was in no hurry as he walked up the hall to his room. TORTURE!!! Once in his room, he turned and gave me a smile. And I knew.

Me: Aaron! Did you just dream about spiders?

Aaron (flatly, but with that smile): Yes.

He is quite happy that he pulled one over on Mom. He should be happy that he is still standing and breathing!

I am, too. Still standing and breathing, that is. And happy. Happy Aaron’s little story was so clever…and NOT true!!

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Aaron went to the mall today and was telling me that he got an M&M ice cream thing at Dairy Queen. I had told him not to get the triple death by chocolate upon chocolate thing that he usually gets, so he was quite proud of himself for just getting the M&M creation. Then he told me that his friend, Shauna, saw him eating it.

Aaron: Shauna told me that was her favorite.

Me: Did she?

Aaron: Yeah. So is it OK that when it was half high, I let her have the rest?

Aaron not only has a sweet tooth, he also has a sweet side. He loves giving things away to his friends.

And I LOVE how he described giving it to her when he had eaten some of it while Shauna watched. He didn’t give it away until it was “half high.”

He’s not half bad, is he?

And of course I told him it was a very wonderful thing to do.

 

Me: Aaron, go ahead and take your pills. It’s 9:30.

Aaron, pushing up his sleeve to see his watch: It is not 9:30.

Me: What time is it?

Aaron: 9:26.

Me, in my head: AAAHHHHH!!!!!!!!!!

There. I feel better.

 

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Tired of This

Recently, Aaron had his Epilepsy doctor visit.  After his appointment we had to walk over to the building next door for Aaron to have some blood drawn.  His liver function needs to be checked routinely due to one of his newer seizure drugs.  Aaron wasn’t thrilled about that because he really wanted to hurry up at the doctor and then go to Pizza Hut like we had planned.  Eating lunch out, after all, is the real reason Aaron was with me that day.  At least that’s the real reason according to Aaron.  Going to the lab was just another annoying delay in reaching his true objective.  The Pizza Hut Buffet…oh, and Wal-Mart after that.  We mustn’t forget the all-important Wal-Mart visit!

The next morning found us going down to the air base for yet another lab visit for Aaron.  This time we were preparing for Aaron’s 2-year physical, so labs had to be done ahead of time for that.  No matter that we were getting some sleet and snow – we needed to get this done.  Aaron had resigned himself to no lunch out that day but instead I would take him to his day group on my way home.  However, our van engine light came on, so I had to go back over to our side of town…run to our shop to ask about the light…and by then, I just decided to keep Aaron at home.  Happy Aaron!  A tiny bit frustrated Mom.  And an even happier Aaron when he heard the words “Taco Bell” come out of my mouth.

On the following afternoon, the air base called to tell me that they had messed up on one of Aaron’s tests.  We would need to come back and have more blood drawn.  UGH!!!  Fasting blood work, which would mean getting there in the morning.  But the next morning I had to take Gary to his foot surgeon appointment.  Gary, who still wasn’t driving due to his surgery.

I’m just scratching the surface of my life right now.  And honestly, I’m not complaining.  I’m just reporting.  (Thank you, Alice Zwemke, for giving us that wonderful statement so many years ago!!).  😊

There we were on that cold Friday morning, back at the air base lab.  Aaron was dreary and slow, tired in several ways.  He pulled up his shirt sleeve without being told because he knows the routine so well, looked at his new watch perched halfway to his elbow the way he must always wear it, and slowly stretched as he waited for the tourniquet and needle.

 

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“I’m tired of this,” he muttered in his resigned monotone voice.

There went my heart.  I wanted to scoop him up in a motherly hug, but it wasn’t the time or place for that.  Besides, motherly hugs rarely have a time and place in Aaron’s autistic world.

But I had another reaction as well.  The depleted side of my spirit nearly kicked in.  My thought was this:

“YOU’RE tired??!  I’M the one who’s tired!!”

Yep.  Those truly are the words that swarmed around in my head.

Tiredness has been closely following on my heels lately.  Not just physical tiredness, although that is certainly present, but a soul weariness that has crept into my spirit.

All of us reach that point at some point.

“I’m so tired of ________.”

Then all of us can fill in that blank…or several blanks, right?

With Aaron, being his mother AND his caregiver, I am pulled this way and that.

Seizures.  Autism.  Medicines.  Side effects of medicines.  Weight loss.  Low sodium.  Needs to eat more.  Needs to drink less.  New medicines.  New side effects.  Blood work.  Behaviors.   Routines.  Disrupted routines.   Needing caregivers.

Sometimes I’m just so tied up in all of it.

And tied down to all of it.

Discouragement can sneak in unexpectedly.  A comment.  A picture.  A thought.  I can let it get to me in ways I know I shouldn’t.

Discouragement can roar in like a Kansas tornado.  A seizure.  A behavior.  A disappointment.

What I do at that point with my discouragement is key to my frame of mind from that point forward.

I can nurture a heavy spirit, or I can let the Holy Spirit do His sweet work in my heart.  I can’t change my situation, really, but I sure can work to change my attitude.

I do this through thinking more about my blessings than my burdens.  No matter what, I do have so many blessings and it does my tired heart good to think about those instead of wishing for what isn’t.

Another thing that helps me is to go to my Bible, especially the Psalms.  For instance, just read and hear the wonderful instruction and hope in these verses.

When I thought, “My foot slips,” Your steadfast love, O Lord, held me up.  When the cares of my heart are many, Your consolations cheer my soul.             

(Psalm 94:18-19)

It’s not a shallow pep talk.  It’s listening to God Himself and trusting that He knows where I am and what I face…and He cares!

Then sometimes there are extra nuggets of love from Aaron himself – rare as nuggets of gold – that warm my soul and remind me of the value of this life that God has given me.

Not long ago, after some seizures and while we watched a show, Aaron looked over at me and surprisingly said:

“Mom, I’m glad you’re caring for me.”

He rubbed his hands together happily as he saw the smile on my face.

“I’m glad I’m caring for you, too, Aaron,” I replied.

And very, very glad that God is taking care of us both!

 

 

The Good-Smelling Difference

Aaron was awake and out of bed very early Monday morning, especially considering the fact that he took a long time getting to sleep the night before.  We were late to bed on Super Bowl Sunday, and not just because of the game.  He and I watched a Dr. Quinn after the Super Bowl…a SUPER Super Bowl for us, by the way.  Aaron would tell you that the team we voted for WON!!  YAY!!

Aaron enjoyed watching the game with us.  He didn’t have many new insights, except for thinking that he heard something upstairs on fire.  What??  He was sure of it.

“I hear a snappeling sound!” he insisted.

Gary and I assured him that there was no fire upstairs, but finally he had to prove it to himself, so up the stairs he stomped – he does sound like a bull elephant! – and came back with the report that there was no fire upstairs.

“There’s the snappeling sound again!” he soon insisted once more.

Still no fire.

We eventually realized that the “snappeling” sound he heard was the sound of the player’s shoulder pads hitting together.  Who notices that sound?

Aaron does.  And isn’t that word just the perfect word for a crackling fire?

He didn’t eat much of the food I fixed.  He did try to convince me when I told him that he could have two Rice Krispie Treats that this was, indeed, only TWO!  😊

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On this Monday after Super Bowl, Aaron had an autism doctor appointment.  Aaron would tell you that we were eating lunch at Old Chicago as the main event, with the doctor visit as an annoying side trip.

He was chipper and happy, eating some breakfast I fixed him, but by the time we left the house later he had greatly changed.  I think he had a small seizure that I didn’t totally catch, only seeing the end of it.  Therefore, on the way to the doctor he was very tired, keeping his eyes closed most of the way.

The doctor does a good job with Aaron, trying to get him to communicate with her, but he was still draggy and tired…and his answers often very inaccurate.  She and I end up, as we did yesterday, talking about my Aaron concerns.

And my concerns seem to grow.  Weight loss…behaviors…seizures…a hard time on many nights going to sleep.

Adding a medicine…the concerns with that…

Just on and on.  And so many issues are unknown, even to doctors, when it comes to the brain and to the impact of long-term seizures and meds.

Now I was feeling dreary and burdened as we drove away, Aaron’s eyes closed again.  Even inside Old Chicago, as Aaron managed to eat two pieces of pizza, his mood wasn’t his usual over-excited self.

But on the drive home, Aaron and I had fun watching the temperature drop number by number as a cold front blew through.  He thought it was great fun!  It was also great fun to anticipate getting a haircut, which he loves.  I had signed in on-line and he was happy – but still very tired.

We ran home for a quick stop and to grab our jackets.  Then I told Aaron that I was sure a few Reese’s Cups would perk him up.

“Yeah!!” he agreed.

He carefully took three small ones, put them in his coat pocket, and off we went.

I never know when we go to Great Clips just how the visit will be.  As we walked in the door, I was just happy that Aaron didn’t barge in and loudly say,
“I’M HERE FOR A HAIR-CUT!!!” – as he so often has in the past.

However, yesterday I realized that we didn’t know any of the stylists.  I could feel discomfort invading my happiness.  I just never know if someone will understand Aaron or stare at him in that all-too-familiar way that makes me half angry and half sad.  I was hoping for someone who knew Aaron and was good with him.  Instead, we were given the perfunctory greeting as we entered, mixed with inquisitive stares.

UGH!!!

Aaron and I sat in our chairs, him totally unaware of my concern.  He wanted to know what Bed Head meant as he examined the products on the shelf, his voice still a little slurred.  Finally, he sat down and carefully pulled his Reese’s Cups out of his pocket.

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Two were placed neatly on the chair beside him, and the third he slowly unwrapped.  He ate it, and then repeated the action two more times.

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By then, the stylist walked our way and called his name…and I, with huge relief, saw that Aaron was in very good hands.

I knew he was in good hands because of the stylist’s big smile and her comfortable conversation with Aaron.  There was none of the awkward staring or obvious discomfort that we sometimes encounter when we are out.

Aaron sat in the wrong chair, one he has often used, but she handled it so easily.  Soon Aaron was sitting in the correct chair as the stylist asked him if he watched the Super Bowl.  Perfect question!

“Yeah!!” Aaron answered.  “Who did you vote for?!”

“I wanted the Chiefs to win,” she answered.  “Did you?”

“Yes!!” replied Aaron, rubbing his hands together in delight.

They talked about Super Bowl snacks as she cut Aaron’s hair and trimmed his facial hair, and soon she was done.

“Aaron, would you like some good smelling stuff in your hair?” she asked.

“I need to ask Mom,” he said as he looked my direction.

“MOM??” he yelled.  “Can she put some good smelling stuff in my hair?”

I laughed and said yes, of course, knowing how very happy Aaron would be with this turn of events.  He doesn’t have enough hair for good smelling stuff, but that’s not at all important.

Smiling, good smelling Aaron left there a very different person than when we walked in.  I did as well, I assure you.

And once again it hit me just how big a difference one person can make in another person’s day….specifically, in Aaron’s day…and thus, in mine.

Later that evening, Aaron was waiting on me to finish some things in my bedroom.  He was hovering, as he so often does.

“Mom!!”  he suddenly exclaimed.  “Do you want to smell my hair?!”

Normally, that would be a no.  A big no.  But not today, thanks to our difference-making hair stylist.

“Sure I do,” I answered.

Aaron chuckled in joy as I took a sniff.  He was rubbing his hands together, a sign of his total happiness.

Who would imagine that such a simple thing as good smelling hair stuff would bring such happiness to Aaron and to me?

His hair still smelled good, but more importantly, his heart was light and happy.  The residual nice scent was like the residual warmth in our hearts, both of us.

Never underestimate the difference you can make in someone’s life, especially in the lives of our special ones.  It isn’t necessary to spend money or to take tons of time.

A smile…a word…the warmth of understanding…are all such sweet gifts to each of us, parents and children alike.

That good smell lingers for such a long time!

Longer than the good smelling stuff in Aaron’s hair, trust me!   😊

 

 

Hanging Off – Or On?

Aaron has a way of repeating what we say but changing just one word or even just one letter, and so making us laugh or pause in thought.   He has a uniquely Aaron way of expressing himself.

That is, after all, the reason I started this blog and the reason I named it He Said What?!

For instance, yesterday we had some rough weather move through our neck of these Kansas woods.  Aaron was concerned, asking about the storms and wondering if he should turn off his computer.

I’ve often shown him the radar and pointed out some storms headed in our direction. I sometimes refer to them as a clump of storms coming our way.

So, as he followed me around the house and fretted over his computer being hit by lightning, he said, “Mom! Is that lump of storms going to hit us?!”

Two words, so similar, yet somehow the difference was enough to make me laugh.

Aaron has become a fan of the television show Chicago Fire.  In December the fall finale had the typical…and very unrealistic…cliffhanger.  Aaron has talked and talked and talked and talked about those canisters in that basement, surrounded by fire, and whether they would blow up or not!!!

I told him that this was a cliffhanger.  Aaron, who is very literal, saw no cliff in that fall finale.  He also saw no one hanging from a cliff in that basement.

I therefore…and not for the first time…explained that a cliffhanger is when the show’s producers leave you hanging on after the last show of the season in order to make you come back and watch the first show of the new season.

Hanging ON.

But here is Aaron’s take:

“MOM!!  I can’t wait till January 8th!!

Then he waits for me to ask why he can’t wait till January 8th.

“Because that’s when Chicago Fire comes back on!!”

Then he waits for me to show excitement.  I am a good actress.

“Remember how they left us hanging OFF??!!”

Then I laugh.  He thinks my laughter is an expression of my excitement over Chicago Fire resuming.

But my laughter is really about the way he changed my original phrase.

Are we hanging ON…or hanging OFF?

His change-up of that one little word has had me pondering over the past few days.

Hanging OFF a cliff is a scary situation, to put it mildly.

Hanging ON, to me, conveys hope.

In life, when I am hanging off a cliff of fear or dread or disappointment…or any number of other scenarios…I must remind myself to hang ON.

I hang ON to God and to the hope that He gives me.

How often our life with Aaron changes!  We can so quickly go from enjoying life:

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To the suddenness of seizures:

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The above picture was right after Aaron’s third seizure on Christmas Eve, just as we were getting ready to play Christmas Bingo as we Skyped with Kyle and Andrea from Houston.

It’s a stretch for Aaron to want to play games.  My first heart reaction was to wonder why.  Why must he have a seizure when he was actually willing to sit with us and play a game?

Sometimes his seizures keep him from participating in something that he really wanted to do.  That makes me sad for him.  Disappointed.

He did arouse enough to play Bingo, but I played his card because he was uncoordinated and shaky…and grouchy, which is typical when he plays Bingo.

Every day…every situation…can be a cliffhanger with Aaron.  Will we have seizures to manage?  Behaviors to handle?

I do feel like I’m sometimes hanging off a cliff, holding on for dear life, afraid of what’s next and afraid of falling…of failing.

But then I must remind myself that I’m not alone.  I know and trust God.

And I hold ON to Him.

I don’t understand everything.

I don’t even like everything.

But I love God, and I know He loves me.

So whatever cliff it is, I do know that I’m not just hanging off.

I reach up and I hang ON to God.

He lifts me up and He rescues me…not from the situation, necessarily…but from the danger of despair and hopelessness that can so easily overwhelm me.

After all, look at what God says about Himself in Psalm 91:15:

 

“He will call upon Me, and I will answer him;

 I will be with him in trouble;

 I will rescue him and honor him.”

 

May I remember, every day and in every cliffhanger, that I don’t need to just hang off.

I can hang ON…to the God Who rescues me.

 

 

In the Crosswalk

What is it with Aaron and crosswalks??!!

I was asking myself this question yet again yesterday as Aaron and I exited Wal-Mart.

I could also ask the question, “What is it with Aaron and Wal-Mart??!!”

Oh, the stories!

As we got out of the van yesterday, while we were still rather obscurely hidden in the parking lot, I reminded Aaron to pull up his jeans.  He did that while tucking in his shirt, but for some reason yesterday his shirt tucking had a rather dramatic and unsettling beginning.  It involved Aaron fully sticking his arm down the FRONT of his pants, getting his shirt settled down there, and then working his way around the remaining waistband.

I told you it was unsettling.

“Aaron, good grief, you don’t need to make such a production of tucking your shirt in,” I instructed him as we walked through the store and he decided that his jeans and shirt needed repositioning several times.

Several times in the same manner mentioned above.

When will I ever learn to quit walking ahead of Aaron in Wal-Mart?

You would think after the nightie story and the falling cereal display story and the singing story…that I would know better.

I was in full “ hurry-to-the-van-while-mentally-checking-off-my-to-do-list-and-plan-my-next-stop-for-that-one-missing-item” mode as Aaron and I exited Wal-Mart.  Which means I wasn’t paying attention to lagging Aaron.

Instinct kicked in, I guess, because I turned around IN the crosswalk, with cars and staring drivers on either side of us, just in time to see Aaron pulling up his jeans and tucking in his shirt.

And doing it in that same disturbing manner!!!

IN THE MIDDLE OF THE CROSSWALK!!!!!

“AARON!!!” I calmly insisted, “STOP IT!!”

I said this while continuing to walk as if nothing was amiss at all.

Aaron knew then that he had erred, so he scurried up beside me as we left the embarrassing crosswalk.

“Well, I had to pull my pants up!” Aaron explained.

“In the middle of the crosswalk?!” I asked.

“What’s wrong with that?” Aaron questioned.

I just took a deep breath, reminded myself not to shame Aaron, and proceeded to once again remind him of how some things are best done in a less public setting.

Trust me, many of Aaron’s actions are best done in a MUCH less public setting!!

But Aaron truly doesn’t have a concept of social norms like you and I do.  No amount of proper parenting, wise advice, careful instruction, and repeated modeling of acceptable behaviors has…or ever will…change him.

I mean, he does show some improvements in some areas.  He hasn’t made his loud farting noise with his mouth in the middle of Wal-Mart in some time, come to think of it.

He can be so funny, but he can also be so exhausting.  The exhaustion is mostly mental for me and Gary with some emotional thrown in as well.

A big part of it is Aaron’s talking.  He loves to follow us around the house, sometimes a LOT, and talk…always a LOT!!

Our son, Andrew, drove home from Indianapolis for Thanksgiving.  Aaron had fresh ears to listen to all his talking, but he also had competition.  The competition comes into play for Aaron because now he must share our attention.  He is not the only person in the house, and he must share his podium with his brother.

This is difficult for Aaron, try as he might to be patient.  Another issue is the topic of our conversations.  Aaron’s topics are typically about aliens, Star Wars or Transformers or Terminators or whatever else he is watching, relational issues at his day group, and more about aliens and outer space and droids and what-do-we-think about aliens and outer space and droids, etc., etc., etc.

All of us are like the drivers in the crosswalk, where Aaron has the right-of-way and we must wait for him to cross.  No amount of confirmation from us toward Aaron can change the fact that his mind-numbing conversations dull our responses to him…and he senses this.

He also truly wants to be the ONLY one talking, and this is where we must step in and remind him to take his turn.  This creates anger on his part and resentment toward the person who has pushed him off his podium, albeit unwittingly, but done none-the-less.  We all understand this about Aaron, and even expect it, but still it’s tiring.

On the day before Thanksgiving, Gary got home early from work so we along with Andrew picked Aaron up from his day group and went out to eat in Old Town.  Aaron had a seizure early that morning, and another one about an hour before we picked him up, but it didn’t dull his tongue.  Not one bit.  😊

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But my favorite picture of our Thanksgiving was when Aaron waddled into the kitchen wearing his shark blanket – a gift from Andrea and Kyle for his birthday – and proceeded to continue talking.  It was just hilarious to see him standing there, oblivious to how he looked, and still talking up a storm.

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Again, we were trapped in the crosswalk…all of us with hidden smiles on our faces…and Aaron unaware of how comical he looked.

Living with Aaron isn’t always easy, especially when we’re already stressed about other life events and concerns.  Having to stop on a busy day for people in the crosswalk isn’t always fun, either.  So, when we’re rushing to get ready for the holidays in the midst of having some remodeling done, with lots of furniture to move around and mess to clean up – thanks for your awesome help, Andrew!! – and Gary is having foot surgery on Monday and will be incapacitated for a long time in a house full of stairs!! – and there’s decorating and shopping and surgery prep and just LIFE!!…

Those crosswalks can be very, very irritating and draining.

It helps to be able to smile and sometimes laugh and to think of Aaron in his shark outfit, not to be derailed from talking!

The pulling up his pants thing, though.  Some things are best forgotten.

My apologies to all the drivers at that crosswalk.

It was memorable, I’m sure.  😊  😊

Aaron usually is.

 

Joy and Crescent Rolls

My phone rang yesterday while I was working in the kitchen.  Of course, it was Aaron making one of his several calls from his day group…calls in which he updates me on his doings, reports good times or bad times with friends there, asks me when I’m coming to pick him up, and stresses that he wants me to come EARLY!!

Since this day was Friday, and since Friday is the day we usually have a special meal of Aaron’s choosing, this phone call greatly concerned food.  He also wanted to know if we were going on our Friday Wal-Mart trip to buy him his “end-of-week and beginning-of-weekend” snacks.

“MOM!!” he began.  “Are we going to Wal-Mart after you pick me up?!”

I assured him that we were.

“MOM!!” he continued.  “Can I get some Pillsbury Crescent Rolls to have for our supper?”

I assured him that we could.

“MOM!!” he added.  “Not the kind in the box but the kind that you bake in the oven.  Pillsbury Crescent Rolls!”

I assured him I understood.

And then he chuckled…his deep-throated chuckle of pure delight.

Pillsbury Crescent Rolls filled him with the greatest joy at that moment, a contagious joy that was passed on to me as I joined him with a laugh of my own.

One thing about Aaron that continues to teach me so much about handling life is his joy in the simplest of things…things that I often take for granted.

I typically don’t play Christmas music until after Thanksgiving, but for the past few years I have caved somewhat on that standard.  Two days ago, while cooking supper, I turned Pandora to a Christmas station.  Music has always, from my childhood, been a huge part of my life.  I listened as I prepared our meal, waiting for that illusive “Christmas spirit” to wash over me.

Instead, though, I was soon brushing away tears.  Silent Night was playing, and that song above all Christmas songs, reminds me of times past and of my parents and of how I miss them and of so many other memories.  Sweet memories, but memories now…people and events of the past, not the present.

And the present…the now…is where I wish they still were.

This Thanksgiving and Christmas season, above all other seasons…with its music and traditions and memories…is so very full of emotion and expectations.

Expectations that often don’t materialize and so leave us with sadness.

In November of 2004, my parents called with the unexpected news that dad’s cancer was no longer in remission.  Doctors had found inoperable cancer in his liver.  All our close family was devastated at this news.  Gary and I decided to quickly change our Christmas plans that year.  We loaded up our van the next month just before Christmas and traveled the long distance home to West Virginia.  All of us wondered if this would be Dad’s last Christmas.

This long, sad trip was very hard for Aaron in all the ways that change and travel have always been hard for Aaron.  The most stressful aspect for Aaron, though…for all of us…was the raw emotion that we couldn’t hide.  Aaron doesn’t like crying and on this visit we couldn’t successfully hide all our tears from him.  The early morning that we left Mom and Dad’s to return to Kansas, we all stood in a circle as we held hands and prayed.  And we all cried.

Except for Aaron, who sat off to the side rocking in a recliner and saying over and over, “Crybabies!!  Crybabies!!  Crybabies!!”

To borrow an Aaron phrase, it was half sad and half funny!

Yet a very sweet moment with Aaron happened during that trip.  As Mom and Dad opened their Christmas presents, they unwrapped a framed poem of sorts that someone had given them.  Aaron saw it and he held it carefully as he began to read.  We all sat still and listened to him read every word in his monotone voice.  It was good that he was looking down and didn’t see my parent’s tears, and ours as well.

 

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I have this precious piece now and was looking at it the other day as I did some sorting.   I thought of it as I listened to Silent Night and my heart filled with emotions about what used to be and what isn’t now.

I know that I have a choice to make.  I also know what God has told me to do.

“Give thanks in all circumstances, for this is the will of God in Christ Jesus for you.”  (I Thessalonians 5:18)

As the poem said, happiness is all around us.  I like to substitute the more meaningful word “joy” for happiness, for joy is a fruit of the Spirit in my life and is possible no matter my circumstances.  But whichever word you use, know truly that there is joy and happiness all around us, every day, in sometimes the smallest of ways.  Yet small things are huge when we look at them through the lens of thankfulness.

Over the years, life changes…a lot…but joy with a thankful heart should be a constant for us.

 

Aaron has seizures, but we are thankful for good doctors:

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Thankful for yummy and very cheesy chicken enchiladas:

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Thankful for God’s amazing creatures in our own yard:

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And thankful for Pillsbury Crescent Rolls!

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Hey, It’s My Birthday!!

We just finished celebrating Aaron’s 35th birthday.  We had three days of birthday events, full of fun and loaded with Aaron’s exuberance.  There aren’t many 35 year old’s who would embrace their birthday with as much joy and pure excitement as Aaron did.  His birthday is one of those times that we fully see how unencumbered Aaron is with adult responsibilities and burdens.  35 doesn’t seem old or worrisome to him at all.  He’s all about HIS day and all the fun it holds!  He’s very much like a kid, and everyone around him smiles at his delight.

Aaron begins planning his birthday months before the actual date.  I’m not exaggerating.  He talks and talks about his plans.  Can we go here?  Can we do that?  And often, he doesn’t ask us before he starts inviting people to come to our house or to eat out.  It’s easy to be exhausted long before the birthday celebration even occurs as we try to keep up with him and his grand plans.

His birthday was this past Friday.  On Thursday, he stayed home from his day group.  He helped me make lots of cupcakes for his day group to share the next day.

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We also made lasagna for some of his friends to have on Thursday night.  We loaded up the van with lasagna, garlic bread, cupcakes and drinks before driving across town to the residential home of some of his day group friends.  All girls, by the way!  😊

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On Friday, Aaron carried his cupcakes into his day group…chocolate cupcakes with chocolate icing and sprinkles, per Aaron’s wishes.  At the end of his day, Barb…dear friend, second mom, and Paradigm manager…brought Aaron to meet Gary and me at Texas Roadhouse for his birthday “eating out” supper – Aaron’s choice once again, of course!

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Oh my goodness, his excitement was almost palpable!  He could hardly stop laughing and talking, and rubbing his hands together, in complete happiness.

“It’s my birthday today!!” he immediately told our server.  “Can you sing to me?!”

Our sweet server laughed as well and said of course.  She mentioned the saddle, which we had to explain to Aaron, and which he agreed to our surprise to do…but later he backed out on that saddle business.  He wanted the largest sirloin, but we insisted on the next size down.  He barely quit talking and eating.  He was large and loud and very, very happy!

His gift bags from Barb, and from Casady – Barb’s daughter and another very good friend – were perfect for Aaron because they know him so well.  And they love him, which he fully knows.

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At home later, he opened more gifts and he talked to family…and he loved the shark cuddle blanket from Andrea and Kyle!

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Then on Sunday evening, we met his special friend Rosa for their traditional birthday dinner at Chili’s.  Again, Aaron announced his birthday to our server and asked if they would sing to him and bring him ice cream with chocolate syrup.  Look at Aaron’s happy face when after dinner several of the staff sang and clapped and made Aaron’s final birthday celebration complete.

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Rosa ran to their car as we left, bringing out her doll head that she loves so much, while Louise and I laughed and laughed.  We love Aaron and Rosa’s friendship!

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My heart was warmed later when Louise told me about how she and Rosa were looking at calendars to buy for Aaron.  Aaron loves animal calendars, so Rosa eyed each of the three that Louise showed her.  Rosa instantly chose the buddy calendar that shows dog and cat buddies for each month.  Isn’t that so sweet?

I’m very thankful for each of Aaron’s friends and family that love him.  Every text, Facebook message, phone call, and gift to Aaron was also a very deep gift to me, as well.  I loved seeing Aaron so happy, and I love seeing Aaron BE loved by so many precious people in his life.

Sometimes it’s easy to feel alone when you raise a child with special needs, especially when they are fully adults yet, as in Aaron’s case, still so fully dependent on the help he needs from the family and staff that surround him.

Easy to look at others who are Aaron’s age, or much younger, who are finishing school and getting jobs and raising a family.

Those thoughts for me are fleeting, though, because I know the danger they carry.  Aaron is Aaron, created by God, and my responsibility is to love and care for him – not to regret that he isn’t someone else.

Barb’s daughter, Casady, a kind soul who loves Aaron to pieces, wrote this in Aaron’s card:

“Happy birthday, buddy!  Thanks for making me see all the sides of life.   Love you so much.”

 Those words seem to just go over Aaron’s head, but not mine.  Her words go straight to my heart and come out from my eyes in tears that I don’t let Aaron see…or he would call me a crybaby.

But oh, life really is so much more than our routine and our version of “normal.”  Trust me, Aaron shows us sides of life that we never even thought of!  And other sides that we would like to forget!

Yet Aaron also shows us how much fun it is to relish routine and special days and music and warm blankets and coffee and cows and horses and bugs and steak and movies and shopping and dogs and cats and milkshakes and sharing and pennies he finds on the ground.

I sometimes stop and look at Aaron when he’s doing an Aaron thing, and my heart swells ‘til it almost hurts.  He is so unique, complicated, hilarious, maddening, and upsetting.  All the sides of Aaron are also the sides that all of us have, but Aaron doesn’t often have the ability to hide them like we can.  They’re out there for all to see…and to hear!

And this morning, I heard a seizure a little after 5:00, and another just before 8:00.  Then one that he’s only had once before, back in April – long and strange and scary.  This is the side of Aaron’s life I dislike the most, but it’s a side we must handle and manage as best we can.  I handle it by being thankful in the many ways that God brings to my mind, and by knowing as well that God is there for us and for Aaron with His sovereign protection and grace.

The sides of Aaron’s life…the good, the bad, and the sad…are all wrapped up like a birthday gift that God gave to us the day that Aaron was born.  It’s up to us to relish all of who Aaron is, even the hard sides of Aaron; to thank God for our special gift; and to care for him in all the ways he needs.

Every side of Aaron…every day.

Hey, it was Aaron’s birthday!!

And I’m happy about that!!

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