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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The Trumpet

This story is written by a dear friend from college, who gave me permission to share.  Her husband was a pilot, air traffic controller, and professor – among many other things – for years before a devastating stroke changed his life…THEIR lives…completely. 

 

The professor began learning to play the trumpet on a borrowed instrument when he was in the 4th grade.  His parents gave him a brand new trumpet, one that would be his very own, as a grade school graduation gift.  He played his way through middle school and high school, as well as some in college.  He must have studied some too though as he did manage to graduate.  😊

 

After college the trumpet rested on a closet shelf, only coming out occasionally.  Like the time the professor called the cows home with it.  And of course, it had to come out to play for that reunion with Old Green.  But it pretty much spent the last oh-however-many-years it has been tucked away.

 

Due to a number of factors, the professor has not been able to play it since his stroke.  We considered giving it away before making this latest move, but the professor wasn’t ready to part with it yet.  So, the traveling trumpet’s case was plastered with another sticker of places it has been. Figuratively speaking.

 

It took up residence in the back of the guest room closet, coming out last winter so a snowbird could use it to play in the Winter Orchestra.  When the snowbird went home the trumpet went back to the closet.

 

The Village has a cable channel for announcements, reminders, etc.  Village residents are able to advertise things for sale on the channel, as well as things they might be ISO.  We do not look at the channel as frequently as we should, sometimes even forgetting about it for weeks.  Shame on us.

 

But “for some reason” we decided to look at it prior to going to church on Sunday evening.  On one of the slides we saw that a friend who had arrived at the Village about the same time we did was looking for a used trumpet!  We about jumped out of our seats!  Looking at each other, we both knew this was why the trumpet was still hanging around.

 

On Monday afternoon the professor put the trumpet in his bike basket and happily pedaled over to deliver the horn.

 

Later that day the new owner came over to thank us again and shared the rest of the story . . .

 

That ad had been on the Village channel for some time and he had decided to remove it if he didn’t get a response soon. In the meantime, he had been looking at trumpets online.  He had given his trumpet to his grandson before moving down here.  It was going to cost him about $350 to get one to replace it.  He realized Sunday morning that he really hadn’t prayed much about it.  So, on Sunday morning he prayed, “Lord, if You want me to spend the $350 to get another trumpet, that’s okay, but if You want me to get one another way will You please show me?”

 

It was that day, after weeks of not looking at the Village channel, we “happened” to turn it on and see his ad. The professor was so happy and excited to be able to give the trumpet to his friend.

 

And would you believe the professor’s trumpet is exactly like the trumpet our friend used to have?  It even has the same mouthpiece.

 

God, You are so amazing.

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I love how God showed Himself to my friends, and to their friend, in this very personal way.  This is just a tiny snippet of their lives that our friends have shared over many years via her emailed stories, all full of God’s faithfulness and blessings, even in the very hard times.  Thank you for letting me share this, my friend!

A Sweet Touch from God

Aaron saw the commercial for Pumpkins at the Park, and soon after he was telling Gary and me all about it.  I had already seen posts about the event on Facebook and had told Gary that we should take Aaron, so with Aaron’s excitement already abounding I knew it was a match made in heaven.  Tickets were ordered and plans were made to drive the mere mile and a half up the road to Tanganyika Wildlife Park on the following Saturday night to experience some pumpkin Halloween fun.

Aaron, who must plan multiple details before any occasion that he will attend, began to ask questions and to get his mind organized for our fun night.  His list included:

  • Will I need a coat?
  • Will I need gloves?
  • Will I need a hat?
  • Will there be lots of people there?
  • Will there be food to eat?
  • Will the animals be out?
  • What time will we leave?
  • What time will we get home?
  • Do we have tickets?
  • Where are the tickets?
  • Mom, why are you sighing?

I answered all but the last question…multiple times.  Which is why I was sighing, but Aaron doesn’t know that.  It wouldn’t matter if he did.  He just knows Mom’s weird that way and by the way, “Will I need a coat?”

Sigh.

But this is Aaron, and we totally expect the repetitive questions and ultra-planning.  His comfort level depends on it, and trust me, we want his comfort level to be high…especially since our comfort level is so closely tied to his.  Like, totally tied to his.  COMPLETELY TIED!!

OK.  Moving on.

As Gary and I climbed into bed on Friday night, the monitor beside us on my nightstand turned on to listen for Aaron, I told Gary that I sure hoped Aaron wouldn’t have a seizure during the night.  You see, a nighttime seizure nearly always means a daytime seizure or more the following day.  I didn’t want Aaron’s much anticipated Pumpkins at the Park to be ruined.

Wouldn’t you know that at 11:58 I heard a seizure.  My heart dropped more than it usually does.  Why on this night of all nights must he have a seizure?  I was so sad for Aaron as I went to help him, and then returned to my own bed when the seizure was over, and Aaron was safe.

Surprisingly, there were no more seizures that night.  But in the morning, Aaron’s eyes and actions showed that he was still feeling the effects of just that one seizure.  I feared more would certainly come.  He couldn’t even stay awake for his coffee, and later slept on the couch for awhile.

Still, no seizure.

When he napped in his bed later that afternoon, I thought for sure he would have one because that is what’s typical.  I listened closely as I carried the monitor with me around the house.

And still, no seizure.

All day long, as we worked outside and as Aaron hung out with our little neighbor’s boys next door, no seizures.

And that evening, there we were at Pumpkins at the Park.

Aaron was totally ecstatic, and that’s no exaggeration.  He didn’t stop smiling the entire evening.

We went from this:

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To this:

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Look at his smile!!  Isn’t that just awesome?!

He loved every single part of the park that evening.  The scary:

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The spooky:

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And the sweetness:

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Speaking of sweet, I especially love this sweet picture of Gary and Aaron walking on the path.

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And I love the sweet touch from God we all felt on that day.  It was sweet to spend that time together and not have it ruined by seizures.

Sweet to have this special memory tucked away in our hearts.

Thank you, God, for such a sweet touch from You!

 

 

 

Fixing the Broken

Last night I felt like this:

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Mangled.  Broken.  Greatly in need of repair.

These were Aaron’s glasses a couple weeks ago after an incident at his day group.  Mixing all the various special needs can at times be volatile.  Even I, who have dealt with many pairs of broken glasses, was surprised at the level of damage done to this pair.  I honestly wasn’t sure that they could be fixed.

I took the rather hopeless mess that used to be glasses into our eye doctor’s office a couple days later.  I hoped that maybe, just maybe, they really weren’t beyond repair.  The kind technician couldn’t hide the look of surprise on her face, which didn’t fill me confidence that anything could be done for them.

Imagine my surprise, though, when before long she returned with this:

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WOW!!  Talk about a miracle re-do of what I thought was hopeless!  She received my profuse thanks with a smile on her face and the comment that she loved a good challenge.  I’m thankful that she did, indeed!

Being the mother and caregiver of an adult special needs “child” with behaviors can be exhausting…physically, mentally, emotionally, spiritually.  I believe that about covers it.  And while I don’t want to come across as complaining, facts are facts and truth is truth.

If there’s one thing I’ve wanted to be on this blog, it’s truthful…truthful without being unkind to Aaron in my honesty.  Talking about being truthful, Aaron is just that…at least in his mind.  He has few filters, and totally does not get social norms.  He is often unaware of other’s feelings.  He gets stuck in his own mind about certain issues and is truly stunning in his inabililty to switch gears and judge those issues with good reasoning.  His own comfort is paramount to him, most of the time, so if his comfort is interrupted or his wishes unmet, we are often met with his anger.

And I get tired.  I get angry.  I did last night, when Aaron who had been happy decided to be rude just before bed.  He and I didn’t have our normal cheerful bedtime routine.  He was still out of bed, on his computer, when I went to bed.  I didn’t even challenge him.  I have no idea when he went to sleep.

I spent time with the Lord this morning, reading about the compassion of Jesus and knowing that I needed that same compassion for Aaron.  Somehow, it’s easier to show compassion for ones I seldom or only occasionally see.  Showing that similar level of compassion for Aaron can be very hard to do over the long term, day after day.

I was very surprised this morning to hear Aaron’s floor creaking before 7:30. Most mornings I must roust him out of bed…very unhappily on both our parts, I might add.  I thought this morning he would definitely be a hibernating bear, but no, he was awake and downstairs early.

He knocked politely on the bathroom door, and when I opened it with some dread, I was so relieved to see him with bright eyes and a sweet smile.  He even received the hug I offered!  We were off to a good start!

We sat in the living room, enjoying the warm fall decorations and soft twinkling lights.  I had intended to sit there and pray, but sitting with Aaron was important, I knew.  We talked softly about some of this and some of that.  Then Aaron decided that he could take his pills, but I reminded him that it was too early.  He wondered why, and once again I explained how he really should take them about 12 hours apart.

“So, Aaron, it’s nearly 8:00 right now,” I began.

He immediately looked at his left arm, pushed up his sweater sleeve, and gazed down at his wristwatch perched halfway up his arm.  I just watched with a smile on my face, waiting for what I knew was coming.

“It’s not 8:00,” he blandly stated as he stared down at his watch.

“Well, I just meant that it’s ALMOST 8:00,” I explained.

“It’s 7:41,” he flatly continued.

Gone was the lesson on the 12-hour rule.  Gone was my caring at all at that point about the 12-hour rule!  In its place was my laughter, deep from inside…much needed laughter.

And Aaron tolerated my laughter, even though he had no idea why the time of 7:41 made Mom laugh.  Many times, Aaron gets angry when I laugh, so I don’t…until he is out of earshot.  But today Aaron let me laugh.  This was a gift.

Later, we sat at the table where Aaron ate a plate full of fried eggs with the yellow hard the way he likes them and where he talked and talked and talked…about separatist droid armies and Trandoshans and commandos and clones…and anything but heart matters.  Or the 12-hour rule.

But it was good.  Very good.

It was our normal.

And it was a gift.  A gift from the same God Who also fills our hearts…my heart…with love and compassion for our Aaron.

I know all too well that we’ll have this again:

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But I also know that we’ll have this:

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Thanks to God who fixes our broken!

“He heals the brokenhearted and binds up their wounds.”  (Psalm 147:3)

 

 

 

Of No Use?

Our neighbors across the street from us had a yard sale a couple weeks ago.  Aaron loves yard sales!  He REALLY loved the fact that there was a yard sale right across the street!  He asked if we could go over and check it out to see if there was something he could buy.  I agreed, knowing that he would end up over there anyway talking to Derek and Gina until I came to the rescue and escorted him home.

Before we left, I remembered that in my wallet was an envelope that held Aaron’s remaining Christmas gift money.  I was always forgetting it was there!  I looked inside and pulled out the cash.  Aaron had $5.00 to spend, and he was happy.

It didn’t take Aaron long to spy exactly what he wanted.  A lava lamp!!  Aaron LOVES lava lamps and has been through several over the years.  He has a glitter lava lamp in his room now, but this was a good old normal lava lamp.   Aaron knew he had found his yard sale prize!

We looked at the sticker and guess what?  It was priced at $5.00!  Could it be any more perfect?  We crossed the street with the “new to Aaron” lava lamp, carried it up to his room, placed it on his already crowded nightstand, plugged it in, and went about our day.

Aaron was waiting, though, for the level gunk in the lamp to begin bubbling.  As he went about the remainder of the day and evening, he kept glancing at his lit lava lamp.  There was no motion, however.  The gunk was still.

“Mom!” Aaron finally said.  “Do you think I bought something that is of no use?!”

I turned my head away so I could smile at his phrasing.  He’s just so funny sometimes…so precise.

“No, not at all,” I responded.  “The lamp just takes some time to heat up the goo inside.”

Gary got home and Aaron happily showed him his new lava lamp…his still not-moving lava lamp.  Supper came and went, as did evening chores and Wheel of Fortune and watching our DVD show just before bed.

As Aaron got into his bed, he sighed with exasperation as he looked at his boring lit but not bubbling lava lamp.

“I think I bought something that is of no use!” he sadly repeated as he pulled his covers up.  I was beginning to wonder myself if the lamp would work even as I told Aaron that it just needed more time.

No one was happier than me to walk in Aaron’s room the next morning, his coffee in hand, and see the lava lamp bubbling in all its globby glory!!  YAY!!!  Yay for Aaron…yay for me…and a special yay for Derek and Gina, whom I was afraid would have certainly heard all about the lava lamp that was of no use!!

Aaron was happy, happy!  And every day since then, when he returns from his day group, he plugs in the lava lamp, totally enjoying the goopy bubbles in all their various shapes and sizes!

Last night, Aaron went to bed talking about how he was going out to eat lunch the next day with a group from Paradigm – his day group.  There is nothing Aaron loves any more than eating out.  So, this morning I wasn’t too surprised to hear him stirring early.  How early?  Aaron keeps a logbook like this:

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This morning’s time was:

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He had so much to look forward to today!  He was ready to get this show on the road!  He supervised me as I poured his coffee and carried it to his room, then told me he would shower and dress.  I went back to my quiet time desk, but it wasn’t quiet for long.

Aaron was soon standing behind my chair, his shower completed and his impatience growing.

“Mom,” he ordered.  “Take your shower and put your make-up on so it will become 9:00!”

I soon realized that Aaron’s hurried mood wasn’t going to improve until he saw me making some headway concerning my shower and make-up.  But I also realized that Aaron’s eyes were very droopy, and his mood was changing even further from excitement to not feeling so well.  He told me his head hurt, his stomach hurt, and that he felt like he was having a dream.  We’ve learned that this often means a seizure is coming.  Aaron was ready to go back to bed, and sure enough I soon heard on the baby monitor the unmistakable sound of a seizure.

I never like Aaron’s seizures, of course, but I especially detest them when they keep him from doing something that he’s looking forward to so much.  No eating lunch out today for Aaron, I thought.  Bless his heart!

And my heart?  My mama heart takes a beating every time I watch Aaron going through this hard part of his life.  He handles all this much better than I do, thankfully.  But as I looked down at Aaron when I checked on him later, look what was in the background.

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The lava lamp.  Aaron’s lava lamp, that he worried was of no use, was performing perfectly there beside Aaron in his bed.

And it hit me.  How easy it would be for me to wonder about all the why’s of Aaron’s seizures and autism…to even feel like it was all sadness and of no use.  But never, never have I felt such hopeless thoughts.  Even in the changed path of Aaron’s life…changed from what we thought our firstborn son’s life would be…there is the sure hope that only God can give.

You see, knowing and following Christ gives to me and to Gary and to Aaron the same hope that God gave to Jeremiah to share with the Jewish nation centuries ago.

“I know the plans I have for you,” declared the Lord, “plans to prosper you and not to harm you, plans to give you a hope and a future.”  (Jeremiah 29:11)

I can claim that promise for us and for Aaron today because we know that God!  We know that He has told us in Romans 8:28 that “ALL things work together for good to those that love God, who are the called according to His purpose.”

God doesn’t plan to hurt us!  He plans to work for our good in order to conform us to Christ!  We have a hope in Him and a future beyond anything we can imagine!

So you see, all the tough times and the sadness and the unanswered questions we may have do NOT mean that this life is of no use.  Absolutely not!!  This life is working perfectly, just how God intended, and in that knowledge – in God Himself – I can trust, and I can rest.

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The Chicken Whisperer

God did the sweetest thing last week and I wanted to share it with all of you.  Some of you read my last blog about how Aaron and I went from a very happy almost three days, to having Aaron crash and taking me with him.  We went from happy to sad faster than it takes for me to run from a spider…and those of you who know me know that’s FAST!

On Saturday evening, while Aaron and I were happily watching a movie, I got a message from my friend, Summer.  She asked if Aaron and I would like to come down to her family’s home in the country to see their chickens.  A couple of the hens recently had baby chicks so Summer thought Aaron might like to see them.  I eagerly said yes!  That sounded like so much fun.  The invitation just added to my happy and I was…well…VERY happy!

Our future chicken visit was a bright spot after Aaron’s happy disappeared on Sunday night.  I looked forward to it so much…to having something fun to do with Aaron that was out of our norm.

Wednesday, chicken day, finally came.  Aaron slept later than anticipated, but at last he and I made it to Summer’s house.  How pretty the day was, and how pretty their home was as we pulled into the driveway!  I immediately noticed the windmill and thought it was a perfect Kansas scene.

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Aaron was a little nervous because he had forgotten meeting Summer, and he had not met her sons, and he wasn’t too sure about meeting the chickens – fun as it sounded.  But Summer came right out to meet us, as did Austin and Tyler, and they all put Aaron right at ease.  Right away we were standing at their pond, where they tossed out some fish food and up from the water appeared lots of catfish.

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Aaron thought that this very cool!  And what fun it was when he got to throw some food out in the water as well!

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We walked behind the house then, and there were the chickens…and a goose, Paco.  As we approached the gate, one of the chickens hopped up right beside Aaron.  Aaron petted her, and Summer told Aaron that he was a Chicken Whisperer.  😊

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Inside the enclosure, Aaron got to throw some chicken feed on the ground and soon we were surrounded by chickens.

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Aaron got to hold a chicken, managing to still hang onto his prized goose feather he had found at the same time.

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Then we saw the cute baby chicks under low hanging evergreen trees.  Surprisingly, the mama chickens were very tolerant of us being so close to their babies.

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Summer was telling us that no one had been able to hold a baby chick yet because of their protective mamas.  Just then we turned around and saw this:

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“How did you do that, Aaron?” Summer asked.

We laughed, and I wondered if maybe there WAS something to this Chicken Whisperer after all.

Aaron sat in a chair and Summer gently talked to him about how to carefully handle the wee one.

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Then one more up close and personal with one of the grown-ups:

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And the opportunity to gather some eggs with Austin before it was time to go.

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We left there later with a plate of cookies that Summer had made, and with the eggs that Aaron gathered, and with such happy memories just made.

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When we got home later, after eating too much at the Pizza Hut buffet, a thought hit me.  I couldn’t remember when exactly Summer had messaged me about coming to see the chickens, so I looked at my messages and there it was.  Summer had messaged me, as I said earlier, on Saturday night.

Saturday night…when Aaron and I were still in happy mode.  Saturday night…before the sadness of Sunday night.  Saturday night…before I knew just HOW much her invitation would mean to us.

I know in my heart that Summer was nudged by God to message me that night.  I was excited to receive her offer, but I had no idea what the next night held.  I had no idea that I would be wiping away tears of disappointment on Sunday night when on Saturday everything was going so well.

But God knew.  God cared about me enough to prompt Summer to invite us down.  God knew before I knew…and He knew what Summer didn’t know…and that was this:  that He wanted to bless me and give me a hug when I really needed it through the action of one of His children who was listening to Him.

This thought and this seemingly simple action is simply profound to me.  God indeed does go before me in ways I sometimes never see, but when I do see it I can only say, “WOW!!”

And to thank God for His sweet care for me, and for Aaron, by using one of His very sweet families.

No action is too small or insignificant to be used by God in a huge way in someone else’s life.

Thank you to Summer, Tyler, and Austin!

And a special thank you to God!

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Mom, Don’t Be Sad

Blah!  Bleh!  However you want to spell it, it’s how I feel right now.

If we’ve learned one thing about Aaron, it’s that we’re always learning about Aaron.  The autistic brain, as well as the brain changed by seizures…and let’s not forget the brain impacted by so many meds…is indeed a complex mess at times.

Aaron’s mess often makes me a mess.

I also feel like a Yo-Yo.  Up and down…up and down…up and down.

Aaron had a cold last week and was home for a couple days from his day group because of it.  On Friday he was out of bed and reluctantly ready for Paradigm when I looked down the hall and realized that he had gone back to bed.

Oh well, I thought.  I guess it’s another home day for Aaron.  I had a must-do trip down to the air base scheduled, so off I went, minus Aaron.  But I was barely down the road when my phone rang, and there was Aaron, out of bed and ready to go to Paradigm.  I turned around, picked him up, and off we went – his current CD of choice playing and a smile on his face.

What a relief to me to see him happy!

I told him about the pizza lunch that was scheduled, being careful not to use the word “party,” because Aaron doesn’t care for parties.  I definitely didn’t tell him about the planned dance, either, because Aaron not only doesn’t like parties, he REALLY dislikes parties with dancing.  It’s all just too much sensory overload for Aaron, despite the fact that Aaron himself causes plenty of sensory overload for those of us who are routinely living in his world.  Go figure.

Aaron was still pleasantly happy when we pulled up to Paradigm.  He was still happy when he called me later to give me a report on his day.  And happy still when I picked him up later…an early pick-up just for fun and so we could make our Friday Wal-Mart shopping trip for weekend treats.

Aaron came to the van looking like this:

 

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Chris, one of the staff, jokingly put some tape on Aaron’s mouth…and I can surely guess why…and Aaron loved it.  He wanted to go into Wal-Mart that way, but stuffy mom said no!

Aaron immediately asked me in Wal-Mart if we could buy him an Xbox and I immediately told him no…as always.  I reminded him that an Xbox is too expensive to buy for a weekend treat.  Aaron asked if he could go to the electronic section to look around since he had no interest in looking at hair spray and make-up, so off he went with a reminder from me to NOT run!

I should have also reminded him to not bother any of the associates since I know that Aaron invariably finds an unsuspecting associate in their blue vest, and invariably asks them questions.  Friday was no exception, as Aaron told me later what happened.

“Hey!” Aaron said as he pounced upon said associate.  “Do you sell any CHEAP Xboxes?!”  😊  😊

Once home, Aaron helped me carry bags in the house.  He helped me make spaghetti for supper.  Never mind the broken noodles all over the stove-top.  He was trying his best.  He helped me make brownies, looking down at the bowl of batter and asking, “Is that the WHOLE brownie?!”

 

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He set the table, took the recycling items to the garage bin, and learned a funny song to sing to Kyle the next day for his birthday.  And after supper, he crammed spaghetti in his mouth and mumbled, “Send a picture to Andrea!!”

 

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On Saturday morning, we called Kyle for his birthday and Aaron happily sang his funny song that he had practiced over and over in his monotone voice while on his computer:  “Happy Birthday to you!  Happy Birthday to you!  You look like a monkey.  You smell like one, too!”

And Aaron, who is often jealous of his new brother-in-law, rubbed his hands together in delight after he sang his song, and ran upstairs after laughing loudly.

That afternoon, while Gary worked on our extremely frustrating messed-up internet, Aaron and I went for a walk in Swanson Park.  We saw beautiful Kansas prairie grasses.

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We saw lots of very old, dramatic trees.

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Aaron even happily posed for a picture.

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But best of all, we got up close and personal with this gorgeous deer.

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What a very fun, relaxing afternoon!

We finished the day watching a movie while eating supper, with Aaron totally delighted to eat his egg rolls as he watched a huge volcano erupt.

After church on Sunday, Gary had to get busy on our internet repair again, so Aaron and I scooted down to the grocery store for his favorite Cheddar Pasta Salad…and chicken…and drinks…and then doughnuts at Paradise Donuts down the road.  But as the day went on, and especially while I was on the phone with Andrea, I noticed that Aaron’s happy brightness was fading.  And after another movie that night, and one of his favorite television DVD shows, I knew that our happy time was over.

I just wish I knew why.

I really wish that Aaron knew why and could talk about it.

Asking Aaron to talk about his feelings or to verbalize his thoughts about these things would be like me asking him to walk up the stairs if he had Cerebral Palsy and was in a wheelchair.  That’s how impossible it is.

And even though I kept telling myself that this very happy time would no doubt end, I still realized that deep down I dreamed that maybe it wouldn’t end…that maybe Aaron would see how much fun it is to be happy and compliant, and would want to stay that way.

It was like Aaron crashed.  Like he went from being manic to being angry again, for whatever reason.  He was just upset for no reason that I could see.

He said he was not taking his pills, but he did.  He said he was not taking his CBD oil, but he did.  He said he wasn’t going to bed, but he did.  He said he wasn’t going to brush his teeth, and he didn’t do that.  Of course.  😊

I just shut down, trying to stay flat and unaffected in order to not escalate Aaron’s unhappiness.  He noticed my change every bit as much as I noticed his.  He didn’t like it and wanted me to be happy even as he was anything but.

“Mom!” he said.  “Don’t be sad!”

But if I tried to explain why I was sad he did not want to talk about it or to hear me talking about it…talking about how he had dramatically changed so quickly.  No talking allowed.  But no sadness, either.

Aaron was worried that I wouldn’t participate in our nightly routine, especially talking to him over the monitor from our bedroom after he was all tucked in his bed.

“Mom?” he asked over the monitor.  “Are you going to say goodnight?”

So I did, half- heartedly, and he knew…but he thought that he should just be happy with what we had at that moment.  And so did I.  But once more before we were done, he said it again.

“Mom, don’t be sad.”

My tears came then when Aaron couldn’t see them.  Tears of frustration and sadness.  Tears due to the realization of how very much I loved our fun days, without any stress, and how much I wished they could last forever.

And having those happy days, only to have the anger re-emerge, showed me just how stressed I often am.  I was so relaxed and content when Aaron was happy, but the instant stress again was a real blow.

Many of you reading this, in your own particular context, know exactly what I mean.  The ups and downs of life take a toll.  The good news and the bad news.  The hope and then the dashing of hope.

Long term care-giving mamas, though, know it all too well.  Balancing the moods, the environment, the activities, the meds, the decisions…and most definitely, the guilt for not thinking we’re doing it well enough.

Gary was right beside me last night, as always.

And so was God.  He reminded me as I laid awake for a long time of His love for me and of His unending grace.  Grace upon grace.  Grace for me and for Aaron…and grace to give to me so I can give it to Aaron.

God’s strength is made perfect in my weakness.  He never lets me down or leaves me to my own resources.  He is forever there for me with that tangible comfort that only those who really walk with Him will know and understand.

In a real sense, these hard times…this Yo-Yo life with Aaron…keep me experiencing God in a way that I might not otherwise.  For that I am thankful.

“Mom, don’t be sad.”

Aaron has no idea of how God uses him to teach me so much.

 

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