Category: Love

Laughing Again

Sometimes Aaron talks in his sleep.  He has conversations that are so clear it’s as if he’s awake, talking to me or Gary.  I hear him because I keep a baby monitor with me when Aaron is asleep, to listen for seizures.  One recent morning, I heard this “sleep talking” from Aaron, and I quickly wrote it down so I wouldn’t forget.

“Mom,” he said.  “In the movie theater, when I was laughing, I couldn’t see myself laughing.  I want to see myself laughing…..again.”

I have no idea what he may have been dreaming that prompted this little conversation.  But I sure have been thinking about it, wondering if deep in Aaron’s mind there is more meaning to this than I…..or Aaron…..knows.

Aaron goes through highs and lows emotionally as well as physically.  Lately, we’ve been having more lows.  He doesn’t want to go to his day group, Paradigm.  Then he goes, and is at times verbal and physical with staff and clients alike.  Sometimes he’s trying to tease and other times he is genuinely angry, but both times he can be hurtful.  He does so much better one-on-one, and most times he doesn’t participate in the group activities.  It’s just sometimes one thing after another during these low times.

Aaron is unfiltered.  Sometimes it’s funny…..sometimes it’s not.  He can tell you to shut up one minute, and the next minute be wanting to tell you something funny……and then wondering why you’re not laughing.  He’s so complex!!!  So frustrating!!!  And so endearing and heart breaking, too.

He knows when he’s done something wrong, but he just can’t seem to stop himself from doing it first, before the knowing kicks in – in time to stop the doing.  Make sense?  That’s our world.

So when he said that he wants to see himself laughing….again….I had to wonder if he is deep down genuinely wanting to be happier, like he used to be more than he is now, and hopefully will be again. 

When I pick Aaron up from Paradigm, I never know if I’m going to see happy Aaron:

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Or pensive Aaron:

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One night last week, I was so tired and so done with some ways Aaron was acting that I was the one who lost control.  I laid down the law with him, but I did it through gritted teeth and a pointing finger.  Yes, I was that tired and upset.  So the next morning, Aaron stood by me and said, “Mom, I’m telling Barb that you grind your teeth!!”

Barb is his second mother – his favorite Paradigm person.

“I don’t grind my teeth,” I replied to Aaron.

“Yes you do!!” he asserted forcefully.  “Last night you went like this!!”  And he clamped his teeth together and bared his lips, much like a rabid dog.

Oh dear.  Is that what I looked like to Aaron?  Probably.

But more than how he said I looked, his comment was a glimpse into how it hurt him for me to respond to him the way I did.

I’m so thankful for every new day, and for God’s new mercies that He shows me every new day.  Those are the same mercies I must extend to Aaron, hard as it sometimes is.

You know what’s really hard?  It’s really hard to remember who has the special needs here.  Sometimes Aaron is so high functioning that it’s easy to lose sight of the fact that his brain does not operate like mine.  And also easy to lose sight of the reality that he deeply feels his struggles more than we can know.

A day or two after I gritted my teeth with Aaron, I noticed that our house was getting a little dark.  The sun had been shining so brightly, but I looked outside to see a dark storm cloud forming right over our house.  Then I heard thunder, and next came a few large raindrops.  Nothing even showed on the radar at this point, but I sure saw and heard our little storm that soon moved on east of us and became a big storm in Wichita. 

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And I thought of what a picture that is of life with Aaron.  He can be our personal storm, loud and disruptive, and then move on to Paradigm to do more of the same there. 

But on this day of our storm cloud, Barb had called to say that Aaron had a bad day.  She said that her daughter, who has Barb’s kind heart, wanted to take Aaron to Wal-Mart.  I agreed, and then when I picked him up later he was so very happy.  He held a Dr. Pepper, and was full of laughter and talk about their little adventure.  What a difference Casady made in Aaron’s outlook with that one simple kindness!  The rain had ended and the sun was shining, both literally and in Aaron’s heart.

And this week, Aaron hurt his friend’s arm by being too rough as they were goofing off or as he greeted her…..I don’t know which.  He broke his glasses in anger on the same day.  Another storm cloud.

He didn’t go to Paradigm the next day.  I took him to Carlos O’Kelly’s for lunch.  It’s one of his very favorite places.  We had a wonderful server who has two special needs boys.  She was so good with Aaron, and I relaxed.  I just watched Aaron eating his food.  He loved every single bite.  He asked to go to Best Buy.  I’ve been saying no to that, but I agreed and off we went…..with Aaron happily pocketing two toothpicks to add to his toothpick collection.

He strolled through Best Buy, looking at this and that, and not asking to buy anything.  He just wanted to look.  It felt good to make him happy in such a simple way……lunch and Best Buy. 

He’s so dependent on us for these times out…..and so dependent on us for his happiness.  Despite our tiredness…..our frustrations…..our ineptness…..our failures…..he needs us. 

I want to see Aaron growing, learning, controlling himself, being responsible.  Like any parent, right?  It’s just a little more difficult for those of us with these issues like we have with Aaron.

But I must agree with Aaron.  Maybe on most days, more than anything, I want to see Aaron laughing again…..laughing from his heart.

And I want AARON to see himself laughing again, happy and having fun, knowing that he is loved. Loved by his Paradigm staff……loved by me and Gary…..loved by friends and family.

And most of all, created and loved by God. 

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Genetics, Goose Feathers, and God

While she was in grad school, we loved talking to our daughter about many of the things she was learning about science…..about genetics, in particular.  The “hidden to our eyes” world of genetics was opening up to her, and somewhat to us, as she learned more and more about the complex codes that make us….us.  We were especially happy to hear her say, more than once, that what she was learning about our DNA pointed her to God and to scripture.  Truly we are “fearfully and wonderfully made!”  (Psalm 139:14)

Made.  Not evolved, but made.  Made by our Creator.  Each of us designed, uniquely designed, by His very creative hand. 

Now working as a geneticist, Andrea designed and now supervises a lab in Texas.  Did you know that each of us processes medicines based on our DNA?  How my body responds to an aspirin is different from how your body responds to an aspirin.  Our response is all tied into that unique strand of DNA that we each possess.  So a geneticist can take your sample sent from a doctor and from that sample can determine how your body will respond to various medicines.

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It’s called Pharmacogenetics.  The definition is:  the branch of pharmacology concerned with the effect of genetic factors on reactions to drugs.

It’s pretty amazing.  Because of this testing, a geneticist can help a doctor determine the best drug for you…..special you…..to take for certain conditions.  And it’s all because God made you….you.  How exciting that He is letting us have a peak, through DNA and genetics, into just how very special YOU are!

This is the testing that Andrea does in her lab.  They are also doing Cancer Pharmacogenomics, meaning that chemo can be personalized for each patient based on their DNA.  Knowing that your body will process certain chemo drugs better than other drugs is a huge step in better cancer treatments and cures. 

Amazing stuff!  Complex stuff!

“Fearfully and wonderfully made!” 

Said another way, we are awesomely and wonderfully made!

None of this was on my mind as I walked out into our back yard one recent evening.  There, out on the lawn, a gaggle of geese was parading past.  They were fun to watch, and funnier to listen to as they squawked when they realized my presence.  Finally one of them took to the air, and the others nervously followed. 

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The next day, while on pooper scooper duty before Gary mowed the yard, I saw there in the grass a long goose feather.  I picked it up so I could look at it more closely, and to also show it to Aaron.

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When I examined it later, I was amazed at how tight each little feather strand was.  Nothing could easily break through that strong feather…..and a goose has hundreds upon hundreds of similar feathers, every one made specifically for each part of his body.   

The fact I loved the most, though, was to see what happened when I put water on this feather.  I loved showing this to Aaron!  The feather was waterproof, which is no surprise, but it was so fascinating to watch.  The water just formed into little balls and rolled right off the feather, no matter how much water was poured onto it. 

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It was fun pointing out to Aaron that God made this goose feather to be just right for a goose.  Our Great Dane doesn’t need goose feathers.  But a goose sure needs goose feathers!  A goose puts his feathers to very good use as insulation against water, and also for protection from the cold. 

A goose is also “fearfully and wonderfully made!”

I randomly laid our goose feather on the server near our kitchen.  I saw it this morning, laying there beside this picture that Andrea gave me one year for Christmas. 

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We have Cow Patty jokes galore in our family.  This picture is the sequencing of the Mitochondrial DNA of a North American Bovine. 

HaHa!  A cow’s DNA! 

But WOW!!  How complex it is!

So my simple, though really complex, goose feather…..and the DNA sequencing of a cow……and my very own individualized DNA…..are all reminders of what a very capable God we have.

And also they are reminders that each of us is created by God.  Every skin color, every hair texture, every eye shape…..all are designed by the God of the universe. 

If anyone hates a person that God has created, then that person hates God Himself.  That person also doesn’t know God.  Period.

Let’s focus on knowing and following this great and good God.  And loving each other as the very special people that He designed us to be.

From genetics to goose feathers, it all points us back to God. 

 

What Will I Wear?

Aaron notices much more than we sometimes give him credit for.  I love how he will point something out to us, often something that we never paid attention to at all, and then offer his comments on it…..of course……whether we want to hear them or not.  We usually DO want to hear what Aaron has to say, but trust me – there are times when we do NOT want to hear what comes out of Aaron’s mouth. 

Aaron rarely gives any thought to whether we want to hear his observations or not.  His insights may be new, or they may be ones that we have heard over and over and over and over…..and over……again.  It doesn’t matter one whit to Aaron.  He would probably implode if he didn’t talk, so talk he does……and we listen, regardless.

He shares things with perfect strangers, too.  I took Aaron to Wal-Mart with me after I picked him up from Paradigm on Friday.  Aaron was happy that I had found a soft fuzzy blanket on sale and that I had put it in our cart. 

“Is it for ME?” he hopefully asked.  But when I told him it was for our aging Great Dane, Jackson, Aaron was not at all disappointed.  He loves Jackson. 

Aaron sat on the bench near the register as I checked out.  I loved the look on his face as I looked at him and smiled.  Inside I was hoping not to hear him blessing us all with his ear splitting loud clapping…..or a silly ‘meow’……..or a fox whistle……or a very embarrassing farting noise. 

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But Aaron didn’t stay on the bench for very long.  No.  He saw the cashier ring up the soft fuzzy blanket, which reminded him that he had something important to share with her.  He didn’t care one bit that he didn’t know our nice Wal-Mart associate.  He did know, though, that she needed to know something.

So he got up from the bench and purposefully marched over to where she and I were finishing my transaction.  He pointed to the soft fuzzy blanket.

“That’s for our dog.  He’s nine years old and he has weakening in his muscles.”

She thought that was so nice to be buying our dog such a nice soft fuzzy blanket.  She and I were starting to have a dog conversation when we heard Aaron again.

“LOOK!!” he blurted out.  And there he stood, lifting up his right arm and showing the poor unsuspecting soul his yucky yellow and purple bruise on his arm. 

“Aaron…..” I started, but he barreled right over me.

“My desk chair fell on top of me when I was reaching for apples and peanut butter, and I got a bruise!!” he explained. 

She showed him his desired amount of shock and sympathy while I tried to hurry up my payment.  Knowing smiles were exchanged between us as I readied to leave.  Well, knowing smiles shared quickly between her and me. Aaron was already off in search of his next victim, so I had to run.

So back to what Aaron notices, and then shares all too fully with us…..or anyone else who is fortunate enough to be nearby.

On Thursday I wore this blouse.

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Aaron came into the kitchen, looked at me with his head tilted to the side, and then offered his opinion.

“That shirt looks like it should be colored,” he commented.

This forced me to look with new eyes at my shirt. 

“Aaron,” I asked.  “Does this remind you of the adult coloring books that you and I have seen?”

“YES!!!” he replied, so excited that I had gotten what he was trying to convey.  “It looks like it should be colored!”

“Do you like this shirt?” I asked.  And he told me that he did like my coloring shirt, very much. 

So on that day I was fun.

The next day I wore this blouse. 

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Aaron had come in the bedroom and seen me wearing it, before I added a sweater.

“WOW!!” he said, in awe.  “You look like a princess!”

I just laughed.  A princess?  But there was something about this blouse that he loved, and so he saw me as someone very special as I wore it. 

On Sunday, as I was getting ready for church, Aaron came in the bathroom and saw me wearing this blouse.

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“Ewwww,” he said in a measure of disgust.

“What’s wrong?” I asked him.

“What you have on,” he answered. 

“Don’t you like it?” I asked.

“NO!” he replied.  “It’s ugly.”

There was something about it that wasn’t fun like my coloring blouse and wasn’t special like my princess blouse.  This blouse, to Aaron, was ugly……ugly enough to him that he reacted instantly to it.  He wasn’t trying to be mean.  He was just being honest.  The design; the colors that he saw since he’s color blind, perhaps; or maybe the style – whatever it was, he didn’t like it one bit.

I’ve thought about all this since our morning yesterday.  Aaron was not one bit happy to be going back to Paradigm after enjoying his weekend.  I’ve learned to just let him work through it, to not force the issue, but to let him make the decision.  He knows the consequences of going and of not going, so it’s good to let him be the one to choose. 

But yesterday, on this Monday, he was extra unhappy and extra grouchy.  Downright hateful a couple times. 

“I want a break!!” he angrily told me.

“You just had a break,” I told him back, but not angrily.  I know better.

“When was my break?!” he wanted to know.

“Saturday and Sunday,” I answered as I fixed my hair.

“Don’t say that Saturday and Sunday were my break!!” he told me.

“OK,” I said.

So I’m fairly certain he came in the bathroom a dozen times, each time saying with more and more anger, “Don’t say that Saturday and Sunday were my break!!”

He continued on down his anger path.  I didn’t react……I breathed deeply……I prayed…..and I looked forward to Aaron making up his angry mind about what he wanted to do. 

He finally came in the bathroom, bent over while he rubbed his hands together, and said, “I don’t love you anymore!!!!”

Then he was spent.  I was, too.  He walked away, calmed down, went to Paradigm while he happily listened to music, and the storm passed. 

What I wear, in a sense……what I display to Aaron when he is so angry…..makes a huge difference in the outcome.  It’s much like my blouses that caused a reaction in Aaron.  If I show anger when he is angry, the result is explosive and nothing is accomplished.  If I show patience, then he sees that his anger isn’t accomplishing what he hoped it would.  If I ignore him totally for awhile, he becomes uncomfortable and realizes that he has crossed a line. 

I can choose what I wear during these episodes just as much as I chose those three different blouses on three different days.  Will I be fun, or special, or ugly? Every situation with Aaron is different, too, so I need wisdom…..which is a big reason that I pray.

Oh, I get upset, too.  I mutter under my breath……think not-so-kind thoughts……and if Gary’s here, he is at times my sounding board, as I am his. 

But still, what I wear in front of Aaron is so important.  Above all, I must wear unconditional love.  It’s hard sometimes to do that, especially when he tells me he doesn’t love me anymore.  Thankfully, that doesn’t happen often, but when he does go that far, I struggle.

When I picked Aaron up from Paradigm that afternoon, he acted as if nothing had happened between us at all.  And last night, as we watched Wheel of Fortune, Aaron starting rubbing his hands together wildly.

“MOM??!!” he loudly said, “I LOVE YOU!!”

Which is Aaron’s way of saying that he is sorry, and that he does love me for real.

I slipped on some forgiveness right then.

“I love you, too, Aaron.”

It felt very nice, maybe like the princess blouse.  And fun, like the coloring blouse. 

I’m thankful the ugly was gone, at least for now. 

The One More

Aaron came into the kitchen this morning, a little after 11:00, so I asked him if he wanted some left over pizza for lunch.  He said yes right away, but then I saw his eyes dart to the clock on the oven.

“It’s not lunch time yet.  It’s 11:06,” he flatly declared.  “When it becomes 12:00, it’s lunch time.”

He turned and left the kitchen, happily despite being hungry, because hunger is easier for Aaron to handle than eating lunch at the ungodly hour of 11:06!!  And no matter how many times this scenario is played out in our home, it never gets old or tiresome to me.  I mean, some of Aaron’s rigidity or habits can at times wear me down, but his precise keeping of times in his life nearly always makes me want to laugh. 

There are some things that Aaron is going to do because Aaron’s just going to do them, almost every single time that he is given the opportunity. 

Will Aaron pull just one wipe out of the dispenser at the grocery store?  Well, no!  One wipe is so boring and useless!

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Will Aaron be happy having one fork with his sausage at breakfast?  No, never!  He even gets out a spoon when he’s eating pizza!!

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Does Aaron want to vary the route we take as we drive to Paradigm every weekday morning?  Are you kidding?!  He thinks his way is faster.  But I did take a quicker route on Friday, to his great dismay.  I asked him why he doesn’t like going my way and wants to go his way. 

“Because this way is far away from the short one!” he answered.  Which still left me puzzled, but I do love how he expresses himself.

A few evenings ago, he was concerned about running out of toilet paper in his bathroom.  He kept talking about it, and I hadn’t gotten a new package out yet.  We were getting his bed ready for the night and toilet paper was still on his mind.  I told him to go check his bathroom cabinet for toilet paper.  Soon he was back in his room, happily holding a single roll of toilet paper.

“There was one more left and this is the one more!” he declared, quiet relieved.

So the next evening I carried up the big package of toilet paper, which Aaron watched me open.  He watched me put two rolls in the guest bathroom holder, and then wanted to carry four rolls to his bathroom.  We settled on three rolls instead, and Aaron very seriously offered to take them upstairs himself……probably more to be sure the job was done correctly than anything else.  I mean, toilet paper is important, right?  It certainly was to Aaron at that time.

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I can count on Aaron making something random like that of utmost concern, and then not getting it off his mind until the situation is resolved in the way that’s needed……or in the way that gives him peace, thereby giving all of us peace!

Let’s see…..what else can I count on Aaron doing?

I can count on him every night, after we watch Wheel of Fortune, changing the channel to Fox News.  He sits in his chair, eyes on the screen, watching and waiting for what he knows is coming.

And when he see Bill O’Reilly on the screen, he smiles, still waiting expectantly.  Bill talks for a minute, introducing what’s coming on the program that night…..and Aaron stares, a slight smile on his face.

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And THEN, it happens!  O’Reilly sweeps his arm around and points at the camera.  “CAUTION!!” he says.  “You’re entering the no spin zone!!” 

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Aaron laughs and laughs, loving every second of it.  Every night that O’Reilly is on, this is what Aaron does. 

And I laugh, too, because seeing all of this through Aaron’s eyes is so much more fun than just seeing it as “same old, same old” every night.

We can count on Aaron talking to us until our ears are totally exhausted.  This is especially true if we are a captive audience, with no place to run, like we were in our hotel room during our Thanksgiving trip.  Oh my, did he talk!!

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And he will also tell everyone of his latest exciting happening, which also happened during Thanksgiving.  Poor Aaron slipped in the hotel tub, cutting the bottom of his foot on the drain stopper.  This was momentous to Aaron and he felt that everyone else would think it was momentous, too…..especially when he told them about it.  But he doesn’t just tell.  He likes Show AND Tell.  And my very sweet sister, Mary Beth, was the recipient of not just the telling, but also the showing, as you can see.

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HaHa!  I can still see her caring face and hear her wonderful laughter. I can also still hear my surprised gasp when I looked over and saw Aaron with his sock off……and blood on it that had seeped through the bandage…..and him sitting on the floor, not a care in the world but to show Aunt Mary Beth the whole gruesome wound. 

At least it wasn’t like his VNS surgery years ago.  The scar was on his upper chest, so several people had the unexpected treat of Aaron quickly pulling up his shirt in order to show them the evidence of his surgery.  The whole thing was just a tad…..shocking…..but not to Aaron.  Not at all to Aaron.  It got to the point that every time Aaron started telling someone about his VNS and his hands headed toward the bottom of his shirt, I yelled, “NOOOO!!”  I got some strange looks for that response, but those people have no idea what I had just spared them from.  No idea at all, really.

But you know, it meant a lot to Aaron that Aunt Mary Beth enjoyed seeing the cut on the bottom of his foot, blood and all.  He didn’t think it to be the least bit strange that he sat on the floor with people all around and pulled off his shoe and sock.  And Mary Beth rolled right along with it, loving every minute and loving Aaron, most of all.

That’s what we have to do.  Roll with Aaron, expect the expected, and brace ourselves for the unexpected.

Speaking of roll, remember the one roll of toilet paper?  “There was one more left and this is the one more!” Aaron declared.

Aaron is our “one more.”  He always has one more routine…..one more thing to tell…..one more surprise…….one more way to make us laugh or sigh or roll our eyes or want to scream.    

And tomorrow is one more day for us to see what Aaron has in store.  One more day for us to see the world through Aaron’s eyes, like it or not. 

One more day to hopefully have the unexpected joy I had today when Aaron put his arms around me from behind, laid his head against my back, and said, “I love you, Mom.” 

I’ll take one more of those moments any day!

I love you, too, Aaron!

 

Some Best Gifts

Tomorrow is Valentine’s Day.  It’s nice to have a day to declare our love for the people in our lives that mean a lot to us.  I’ll admit that I have loved every flower and card and box of candy that Gary has given me over the years.  But in the past few days, I’ve once again seen that the best gifts my husband gives is what he gives of himself, over and over and over, as we walk this life road together with our Aaron. 

Gary and I love Aaron.  We have chosen at this point in our lives to keep Aaron at home with us.  It’s not always easy, but we wouldn’t have it any other way.  However, there are two attitudes that help tremendously as we care for our son.  The first one is humor.

I’ll be honest and say that I like it when I pick Aaron up from his day group, and hear him say, “WHEW!!  I’m stuffed!!”  He then tells me what he ate for lunch that day, usually something on the large side.  So I casually ask if he wants supper and he often says no. 

Now, I don’t mean to sound mean, but Gary and I do enjoy eating dinner alone.  Just the two of us, enjoying casual conversation and pauses of quietness……blessed quietness.  Because if Aaron is with us, he loves to talk about his day and his recent activities and what he ate and what he said and how he was just teasing this person and how he got in trouble and what movie he’s watching and what aliens he’s interested in and what game he’s playing, etc., etc.  He watches for the slightest pause in Gary’s and my conversation, or maybe not even a pause at all, and will jump in quickly. 

“AND……guess WHAT?!!” he’ll interject.  And he’s off and running with another tale that he knows we MUST hear.  There is a time and a place for us to hear from Aaron, but we also enjoy each other’s company at least a few times a week.

The other night Aaron wasn’t planning to eat with us.  Gary came home to two place settings on the kitchen table.  We soon sat down to eat, just me and Gary, when we heard that all too familiar sound of Aaron’s heavy footsteps on the stairs.  How does he do that?  How does he just KNOW that we are sitting down to eat? 

Gary asked the blessing as we held hands, with Aaron hovering there between us.  As soon as the “Amen” was said, Aaron launched in.  “DAD, guess what?!”

“Aaron,” I interrupted.  “I thought you said you weren’t going to eat.”

“I’m not,” he replied.  “DAD, guess what?!”

So there we were, Aaron’s captive audience.  It’s always a struggle for us to know how blunt to be with Aaron.  We don’t want to make him feel like he’s not wanted with us.  But, really, we didn’t want him to stand there the whole meal and talk up a storm……and he would.  He was well on his way to doing just that. 

Finally I said, without terrible bluntness, “Aaron, now you’ve talked enough.  You need to let us eat.” 

“OK,” he said.  He walked over to the counter, picked up a pineapple that he noticed, and brought it over to us. 

“DAD!!  Look at this!!  Mom got a pineapple today!”

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In Aaron’s mind, he WAS letting us eat.  I didn’t want to be so blunt as to say, “AARON!!  QUIT TALKING!!”  So I told Aaron to let us eat, and he WAS letting us eat while he continued to talk.

Gary, also not wanting to be too blunt or hurtful to Aaron, looked at me and said, “Your clarification of your wishes would greatly enhance your desired results.”

Aaron had no idea what Gary was really saying.  Gary and I laughed and laughed, which made Aaron think that we loved what he was saying about pineapples……so he continued his talking while he let us eat, just like I had told him to do. 

Next to humor, patience is another important gift that Gary gives as we live with Aaron…..or he lives with us. 

Gary ordered two updated Star Wars games recently for Aaron’s computer.  He installed them for Aaron on Saturday.  Then came Gary’s strict instructions to Aaron about not changing settings or doing any other things to mess up what Gary had taken time to do.  We have lots of experience with Aaron doing just that.

Gary and I came home from church the next day to find Aaron telling his dad that something wasn’t right about the games.  Without even looking, Gary knew…..and he was right.  Aaron had tried to put some codes in or something…..it’s all Greek to me……and he had jumbled things up.  Gary had to sit down and re-do much of what he had just done the day before. 

It was a resounding GRRRRRRRRRRRRRR moment, for sure.  And Aaron knew it…..knew he had blown it and knew we were frustrated.

Aaron finally came in my room and said, “Nobody forgives me!”  Can we spell the word D-R-A-M-A?

The game was eventually back up and running.  Gary had slipped outside to take Jackson, our Dane, for a walk.  The walk was, I’m sure, doing more good for Gary than for the dog. 

Enter Aaron……into the kitchen, looking for Gary.  Gary, who was nowhere to be found.  Aaron asked me and I couldn’t lie, so with resolute steps Aaron was out the back door and striding across the grass to catch up to Gary and Jackson.  I felt badly for Gary.  I knew he wanted some alone time. 

Soon I looked out the window, watching them come from behind the tall evergreens into my view.  They walked slowly, Gary and Aaron, with Gary talking and engaging with Aaron.  It warmed my heart, as I am quite sure it did Aaron’s as well. 

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Gary’s love for Aaron is a great gift to me.  His humor and patience often come at times that we both need them the most.  Often when I am tired…..done…..ready to check out emotionally……Gary will step in and save the day for me.  Those are some of the very best gifts that he gives me, and they’re not just on one special day or two a year. 

Of course, I do still love flowers……just in case he reads this, you know.   🙂

 

 

 

Have a Tootsie Roll!

My writing about life with Aaron has taken a back seat lately.  Actually, more like the back car on a very long train.  Traveling over Thanksgiving and then returning to the mad rush of Christmas preparations have certainly been major factors.  But there’s more to it than that.

I feel overshadowed.  Living under a dark cloud of Aaron issues.  Increased seizures…..medicine decisions……doctor visits.  But even heavier than those concerns are the disruptions caused by his behaviors, which honestly have at times been far from nice.

Autism……family therapist…..psychiatrist……investigating alternative medical helps…….phone calls……meetings.  It can get overwhelming sometimes.  Keeping our cool can also be next to impossible, sometimes as impossible as understanding what makes Aaron tick.  But we must understand that Aaron operates with a very unique mindset, without most of the filters that others have, and that he is constantly bombarded with sounds and ideas and stimuli that you and I never have to handle.  His day group is a perfect breeding ground for noises and irritants and unusual people that can aggravate him quickly.  We rarely see the behaviors at home that they see there.  It can get messy.

Today I saw the side of Aaron that I wish he showed every day.  It’s there…..just sometimes not seen as vividly as I saw today.  Yeah, he got mad at a game this morning before we left for his dentist appointment.  But he and I had a good discussion about it as we drove to the dentist’s office, where he also relished discussing his angry experience with the office staff, and with anyone else who had ears.  He has no shame…..really.

As we left the dentist’s office, he gladly grabbed a cookie that was offered to him by the staff.  And Tootsie Rolls that were in a bowl.  Did he ever take Tootsie Rolls!  I had no idea.

He ate one or two in the car on the way to Pizza Hut for lunch.  The Pizza Hut buffet, heaven on earth for Aaron.  All You Can Eat…..anything…..is heaven on earth to Aaron.

As we left Pizza Hut, paying for our All You Can Eat buffet……where Aaron really didn’t get to eat all he could eat because Mom stopped him way too soon……

Anyway, as we left and were paying at the register, Aaron pulled out yet another Tootsie Roll from his pocket.  “Here,” he said to the smiling lady behind the counter.  She was smiling because Aaron had tried to hide from me while I was in the bathroom.  He was standing near the exit doors, peeking around the edge of the wall, grinning from ear to ear and then laughing loudly when I saw him.  All of this in full sight of a banquet room full of people who were supposed to be listening to a speaker, but who were instead looking at Aaron and me with grins on their faces.  Story of my life.

So Aaron pulled out the Tootsie Roll, handing it to the now laughing employee, and said, “Here.  Because I liked the food today.”

When does he never like the food today?

But she was so happy to get his Tootsie Roll!  She took it and thanked him, telling him that she loved Tootsie Rolls.  Aaron was super pleased at her reaction.

“Look!!” he loudly said.  “See how many I got at the dentist?!”

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Oh dear.  He pulled out a whole fist full of Tootsie Rolls.  All I could think about was the fact that the ladies in the dentist’s office probably saw him take that stash while my back was turned to Aaron.  When will I learn to never turn my back on Aaron when there are cookies or Tootsie Rolls involved?!

I gave him the “Don’t Be a Tootsie Roll Pig” lecture on our way to TJ Maxx, while he unwrapped Tootsie Rolls and enjoyed his free dessert.  He offered me one and I accepted, feeling like a hypocrite.  I stopped the lecture.  Shouldn’t talk with my mouth full.

We walked into TJ Maxx, where I told him that I was looking for a gift for Nora.  Nora is my little elderly friend that I take out once a week.  She was our neighbor for 15 years before moving to assisted living.  Aaron knows Nora.  Sometimes he’s been not so nice to her, but other times he’s tolerable.  Today he surprised me.

“Mom!!  I want to get Nora a Christmas gift!” he exclaimed.  “Here!!  I want to get her……this!!”  And he grabbed the first thing he spied, a Christmas candle holder that I knew Nora wouldn’t need or want.

Aaron’s desire to get Nora a gift just made me very happy, so I told him that we would look for something.  We were browsing in the perfume section when I heard Aaron talking to someone.

“Here!” he was saying.  I looked over to see him offering the employee manning the dressing room……you guessed it……a Tootsie Roll!!

This young lady looked a little uncomfortable as big Aaron held a Tootsie Roll out to her.  At first she declined his offer, but then for some reason she said yes.  She looked at me with a smile and at Aaron with a smile as she accepted the Tootsie Roll.  And Aaron laughed with delight as he bent over and rubbed his hands together, oblivious to shoppers who were looking and this new friend whose mind was full of questions, I’m sure.

It was really very, very sweet.  Sometimes in these moments it’s tempting for me to be too embarrassed to enjoy what just happened.  Today, though, I really relished what Aaron was doing.  I loved it!!  I loved how happy it made him to share with strangers.  And how happy these strangers were to have received such a spontaneous little gift from unusual Aaron.

Aaron had not forgotten that he wanted to buy a gift for Nora.  We looked here and we looked there, and finally I saw a perfect box of chocolates.

“YES!!” Aaron said when I showed him the box.  “Let’s get that!”

Later, at supper, Aaron had a thought.

“Mom?  Can Nora eat that chocolate?”

I told him she could…..that she loves chocolates.

“But does she have fake teeth?!”

I told him she does not have fake teeth as I tried not to laugh.

“Good!” he answered.  “I thought she might have fake teeth and couldn’t eat it.”

Aaron wants to give the gift of chocolates to Nora, in person.  I am quite sure that he will ask her if she has fake teeth.  She still hasn’t forgotten how he once said that she was old.

See what I mean?  No filters…..no shame.

But Aaron has a big heart.

Here.  Have another Tootsie Roll.

I need to give the dentist a bag of Tootsie Rolls at my next visit.

 

 

You Want Me Gone?

The other night, Aaron kept coming in our bedroom after we had gone through his bedtime routine and said our goodnights.  Gary was already trying to go to sleep, and I wanted to do the same.  But Aaron kept opening our bedroom door and then softly knocking on our closed bathroom door……as softly as Aaron knocks, which is about as softly as he whispers……which is not much. 

“AARON!!” I hissed.  “Why are you in our room?” 

“I just wondered if you’re gonna have the monitor on,” he said.

“I’ve already told you I’ll have the monitor on,” I replied.   “Now go to bed!”

Not long after, it happened again.  Just repeat the above scenario, but this time Aaron said, “I just wondered if it’s going to rain tonight.”

I told him it was not going to rain…..and to go to bed, as I escorted him to our door, which I soundly closed.

Take three.

Same thing, except now he stood in the bathroom with me saying, “I just thought I could talk to you while you get ready for bed.”

The Mom look I gave him was all he needed, but still he just had to ask one more question.

“Are you SURE you want me gone?”

I assured him that I was sure as I yet again walked him to the bedroom door, closed it with one last goodnight……and locked it!

It’s been a rough couple of weeks with Aaron.  Both his seizures and his behaviors have escalated…..seizures at home, behaviors at his day group, Paradigm.  Another bad report this past Monday just took all the wind out of me.  Gary and I feel like nothing is working, but something has to make a difference.  We saw his caregiver at the Epilepsy Center this week, had labs drawn, will see his autism doctor before long, talked to friends who travel this road, are researching some options……and praying.  Praying a lot.

I was so thankful for the verse that God gave me this week.  The portion that meant so much to me was this phrase: 

“DO NOT HIDE YOUR EAR FROM MY PRAYER FOR RELIEF.”  (Lamentations 3:56)

It’s like that old story of the guy up in the tree with a coon, telling his friend on the ground, “Just shoot up her amongst us!  One of us gotta have some relief!!” 

It’s funny to hear that story…..not so funny to live with Aaron when he has so many behavior struggles that are severely impacting his happiness.  But all of us need some relief, Aaron included.

When he and I got home on Monday, after such a dismal report from his day group staff, Aaron went to his room.  Soon he walked up to me and handed me one of his sticky notes.  Here is what he had written:

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Bless his heart.  He really wants to do better, but finding that better is very difficult for him in certain circumstances.  Really impossible at times, as his Epilepsy nurse and practitioner discussed with me on Wednesday. 

That verse God gave me early in the week was perfect.  We need relief, as many believers through the ages have expressed, and as many of my friends are experiencing now in their lives in very serious ways.  The book of Lamentations is all about God’s faithfulness throughout the stresses and calamities of life on this earth.  In fact, the following verse after the author begs God to not hide His ear, says, “You came near when I called on You; You said, Do not fear!”

Good advice…..great promises!!

The day after these verses spoke so much to me….the day after Aaron’s bad day at Paradigm…..this happened.  I was out with my little elderly friend, Nora, when I got a text.  This text was from my friend in Texas, Dona, whose husband had a terrible stroke 11 months ago.  Dona and I rarely text, so I was surprised and a little alarmed to see her name appear.  I instantly thought it might be about her husband, Steve.

But all Dona said was, “Are you doing OK?”

Wow!!

She had totally, absolutely no way of knowing what I was dealing with.  We briefly texted, with her telling me that I had just been on her heart and mind.  God at work, without a doubt.

I could hardly wait to get home and call her.  We talked for quite awhile.  She told me again that she kept thinking about me and so she prayed.  I love it when God does these things!  He shows His love and His care in these amazing, wonderful ways, blessing all of us in the process.

A day or two later, Aaron and I were in Dillon’s.  We bought our few items, and then the cashier pointed to a large container of roses at the end of the conveyer belt. 

“Would you like a free rose?” she asked.

And Aaron jumped on that like a flea on a dog!!  He took a rose and then handed it to me, his face nothing but a huge grin.

“Here, MOM!”  he boomed.  “I want to give you a rose!!  Because I love you!!”

And with that, he gave me the biggest hug!  I thought my heart would explode!

The love note…..the rose……the hug. 

Mixed this week with the behaviors…..some scary seizures…..doctor visits…..decisions looming.

It’s like Aaron bounding in our room at bedtime, just when we think that he’s settling in for the night.  BAM!!  There he is again, full of talk and excitement, no matter how tired we are. 

“Are you sure you want me gone?” he asks.  No, Aaron, not gone…..but resting.  Go rest, and let us do the same.

His behaviors can be so very tiring.  This past week has been emotionally exhausting for us, as well as physically.  We could use some relief.

But we don’t want Aaron gone…..his personality and his take on life’s events to be gone.  We just want him to be happy, and to know how to behave in a way that makes others happy, too.  We have to keep working on that, and to keep trying to enable him to achieve that.

We’re praying for God to give us wisdom, and to not hide His ear from our cry for relief.  I know He’s listening…..I know He cares……I know He’ll answer.  He’s already impressed others to pray for us.  That’s such an encouragement!

And when I look at my lone little rose in its vase, I’m reminded of Aaron’s love and of God’s love, entwined in many ways in my life.  One so often shows me the other. 

I just have to be making an effort to look sometimes. 

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It Makes Me Think

I wrote earlier about Aaron’s difficult day on Monday, and about his desire to take a “sorry card” to his friend whom he had hurt.  ( Another “Sorry Card”)  Time now for a quick update.

I walked into Aaron’s room on Tuesday morning, carrying his cups of coffee and finding him sitting on the edge of his bed.  He was writing in his log book the precise time that he was getting out of bed, and still trying to fully awaken.  I know not to talk a lot to Aaron first thing in the morning.  He needs time to process his new day, time to drink his coffee, time to shower…..and I need time to evaluate his mood.  So I said a simple good morning as I put his coffee on the bookshelf beside his desk.  He never even looked at me, which is typical.

But he did speak. 

“I don’t want to go today,” he softly said.  “I have a headache.”

I never know if he really has a headache, or if he’s just trying to get fully awake.  I don’t try to talk him OUT of having a headache, and neither do I encourage him to indulge his headache. 

“I’m sorry,” I said as I walked out of his room.  “I’m getting in the shower now.”

“I don’t want to go today,” he repeated.

“But what about the “sorry card” and Burger King coupon for J, and the pillow for S, and the green pepper for Barb?” I asked.

He was silent.

I went on about my morning.  I heard him taking a shower and then later heard him on his computer, yelling happily…..which is always a good sign that his outlook has brightened.

I went to his room for his glasses so that I could clean them before we left for Paradigm.  There lay the pillow for S, and the “sorry card” for J, near his empty coffee cups. 

“I’m going, Mom,” he said.  He even sounded cheery, and I was very relieved.

We walked out the door later, Aaron carrying a bag in which we had placed the pillow and the green pepper.  His “sorry card” for J, along with the Burger King coupon, were in a plain envelope and placed in the bag as well.

Aaron went into Paradigm with no hesitation when I dropped him off at the curb.  I prayed as I drove away, that Aaron would be happy and kind and would actually give his gifts to his friends…..especially the “sorry card” to J, for that was most important.

That afternoon my phone rang.  The caller ID displayed Barb’s name, and my heart dropped a little.  Sometimes Aaron calls me using Barb’s phone, and some of those times it’s because he’s unhappy.  Sometimes Barb calls me, though rarely, but usually it’s because Aaron is having a really rough day.  Sometimes Aaron also calls just to loudly laugh and tell me how much fun he is having.  Sometimes answering that phone is like playing Russian Roulette.  I just don’t know what pressing that answer button will bring.

“MOM!!!!” Aaron yelled into the phone.  And I immediately knew that he sounded like all was well.  “I wanted to tell you something!!”

“OK,” I simply answered, hoping for the best.

“I’ve been having a good day!” he continued.

“That’s wonderful!” I replied.  “Did you give J the “sorry card” and the coupon?”

“YES!!!” he said.  “WAIT, MOM!!!  WAIT!!!!” he eagerly said.

Now this always means that Aaron is getting ready to hand the phone off to someone else.  Often it’s Barb, and I’ll hear Aaron say to her, “My mom wants to tell you something!”  And Barb knows full well that I didn’t say I wanted to tell her something, so she gets on the phone laughing and she hears me laughing, and we talk for a minute while Aaron – I’m quite sure – is standing nearby rubbing his hands together furiously.

So on this day I was prepared to once again hear Barb’s voice, but it wasn’t.  I heard a young man’s voice haltingly saying hello to me.  He was a little hard to understand, but I figured he was J.

“Is this J?” I asked him.  He said yes.

“Thank you for the card and the coupon,” he said.

“You’re very welcome, J,” I told him.  “I’m sorry that Aaron hit you.”

“Oh, it’s OK,” he replied.  And he said something else about the coupon.  I could tell he was very happy with that, and with the “sorry card,” too.

He handed the phone back to Aaron, who told me with great exuberance that he had also given the pillow to S and the green pepper to Barb.  We soon hung up, with me feeling very happy for Aaron.

As we drove home that afternoon from Paradigm, we talked about how much it meant to J to get the card and especially the coupon.  We talked about how S smiled when Aaron gave her the pillow.  We talked about how Barb thanked him for the green pepper. 

And we especially talked about how happy it made Aaron when he was kind to his friends……how much better he felt on this drive home because of being nice.

These are simple, elementary truths that seem so hard for him to retain.  Aaron wants to be nice.  He really does.  But his impulses and his lack of filters sometimes drive his “nice” desires out of his brain quickly as he responds to the moment.

The next morning, Wednesday, Aaron wanted me to go inside Paradigm when I dropped him off.  He wanted me to talk to S about the pillow he had given her.  Sometimes my to-do list makes it hard for me to agree to anything extra, but something told me that I should do this for Aaron.  So I parked the van and we both got out, walking inside his day group together.

Aaron immediately strode over to the wheelchair where S was sitting, and I followed. 

“S!!!!” Aaron said, rubbing his hands together.  “Here’s my mom!!!!”

I felt like I was Vanna White on Wheel of Fortune.  “Here’s Vanna White and Pat Sajak!!!!!” 

I walked around to where S could see me, and I patted her arm as I told her hello and asked how she’s doing.  S always says that she is fine, as she is all bent over in her chair.  She amazes me as she does something else I always see when I am with her……she smiles.  A huge, sweet smile.

“Did you like the pillow that Aaron gave you?” I asked her.  There was that wonderful smile again as she looked up at me and said a simple, “Yes.”  But her smile said it all.  It must mean a lot to her, in her limited world, to have friends.  I know that Aaron understands that.

One day, when talking to me about his friendship with her, Aaron said to me, “S doesn’t have much friends.  Am I her friend?”  I told him that he is indeed her friend…..a good friend.

“It makes me think I don’t know what to think,” he answered after some thought.

How sweet!  How telling! 

Friendships do matter to Aaron, very much.  He just doesn’t always know how to make them…..how to maintain them……how to express his feelings to his friends without being loud and rough. 

But sometimes he does, like with S.  He talks a lot to us about her limitations and he feels empathy for her.  So even if he thinks he doesn’t know what to think, the very fact that he IS thinking about these things is very positive to us.  We’re thankful that this week turned out so well…..that Aaron hopefully learned some important lessons…..and that those lessons will actually STICK in his brain!!

Because trust me, there are many many days that Gary and I look at each other after an Aaron episode and scratch our heads.

Aaron’s words could easily be our words:  It makes us think we don’t know what to think!!!

But I do think that this week has been mostly positive, for me and for Aaron and hopefully for his friends. 

It makes me think that we have a very special son, even when he makes me think I don’t know what to think!

And that’s just how it is around here.

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Aaron’s Love Songs

It’s been awhile since I’ve really written about Aaron.  So many days I want to write, but somehow life prevents me from doing what I would love to do.  I mean, do we really need clean clothes, food on the table, errands run, garden tended, a somewhat tidy and clean house, etc., etc., etc.?!  Then so much time goes by that I lose my momentum……lose the feel of those special Aaron moments…..and so I go on, hoping to recapture them and share them later.

Aaron and I are coming off of a fun, long Labor Day weekend.  It was sad for me because Gary’s Uncle Bob went to heaven on Friday morning.  This was awesome for Uncle Bob, but of course has left a huge hole of grief in the hearts of those that he loved and who returned that love so deeply.  He was a great man.  As Gary checked the price of plane tickets Friday evening, the realization quickly sank in that we could not both go home for Bob’s funeral.  I was very thankful that Gary did go.  At first he said no to that idea, but he really needed to be there with his family.  He’s so glad he did.

Aaron was my shadow for a large part of our long weekend.  We went out to eat……watched movies here at home…….took walks around our back yard with Jackson……washed and ate garden veggies…….enjoyed sitting on the patio and seeing our Hummingbirds at the feeders……watched Wheel of Fortune……and did a little shopping. 

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And I captured one of the best pictures of Aaron ever as we ate at Jose’ Peppers.  Isn’t this just great?

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On our Wal-Mart trip, Aaron went on his way to the electronics while I browsed some on my own…..knowing that I would probably find Aaron later, when I went to pick him up, with some discovered jewel of a movie in his hand.  Sure enough, that happened…..but I was able to dissuade him from the need to buy it now since his birthday and Christmas are looming on the horizon. 

In his other hand, though, he carried a CD.  Any of you who know Aaron know that he loves music.  He loves listening to music any time that the van door closes and the engine starts.  He becomes super focused……another word for obsessed……with whatever current artist is filling his ears with music.  He will announce every song as the number on the CD changes, then sit back and listen closely.  Then at home he will look their songs up on his computer and love every minute of watching them perform.

When it was Neil Diamond, for instance, Aaron one evening said to Gary, “Dad!  Mom and I are listening to Neil Diamond!  Mom likes number 11!!”  Then he paused, because surely Dad knew what song is #11.  When he realized that Dad was not at all adept with knowing #11, Aaron patiently said, “It’s Song Sang Blue.”  Never mind that it’s really Song SUNG Blue.  Aaron isn’t concerned with grammar.

Aaron continued telling Gary about Neil Diamond.  “He always carries a gu-tar.”   “Why does he like a gu-tar?”   “Is that his favorite instrument?”   “He has funny hair.” 

And later, as he and I played Skip-Bo, Aaron suddenly asked, “Why do you like number 11?  Is the sound of that song kind of cute to you?”  So Song Sang Blue was thoroughly discussed, dissected, analyzed, and hopefully understood after we were done.

Back to Wal-Mart and the CD in his hand.  Aaron loves, loves, loves Ronnie Milsap.  He was totally thrilled as he held out his newly found CD for me to see.  “MOM!!  I found Ronnie Milsap!!!!”

Yes, it was Ronnie Milsap all right……Ronnie Milsap Gospel. 

“Aaron, I’m not sure you’ll like this so much,” I told him.  “It’s gospel music.”

“Please, Mom?!!  Can I get it??” he begged.

So I said yes, and we immediately put it in to play as soon as the van door closed and the engine started.  As the sounds of How Great Thou Art filled the van, Aaron bent over and rubbed his hands together every bit as much as if the Beach Boys were singing about girls on the beach, as Aaron says.

Aaron repeats a phrase of the last song, usually, that we listen to as we drive home.  We hear it over and over and over and over for the rest of that day.  So on Monday, many times, I heard Aaron singing these four words – “How great Thou art.”  “How great Thou art.”  “How great Thou art.” 

And on Tuesday, back at his day group, Barb texted to tell me something and then she said, “Aaron was singing How Great Thou Art earlier.”  HaHaHa!  Isn’t that just the best?  Maybe that’s why he was having such a great day.  And he also took some of our garden tomatoes to share, giving some to his friend Yolanda, a fellow client.  Look at this picture of happiness.

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Last night Aaron wasn’t feeling well at all.  He said his head and stomach hurt, and at 8:30 he wanted to go to bed.  “Maybe I suddenly caught a germ,” he quietly said as he and I went through his bedtime routine.  But he was off, not even asking if it was going to rain or checking on the outdoor temperature, which he ALWAYS does!  He did ask if I would have the monitor on.  I know why.  I know he’s afraid of having seizures, and that just breaks my heart for him. 

Friends and family prayed, and there were no seizures during the night!  I was so, so thankful for that!  Aaron got up this morning after sleeping for nearly 12 hours, saying his head still hurt.  Yet he always says this in the morning, so I wasn’t too sure.  He sat across from me at the kitchen table, giving me a stare down as he hoped I would tell him to stay home.  As the morning went on, he improved.  Coffee and a shower works miracles!  And so did the offer of a Quik Trip stop on the way to Paradigm!

Later, sausage biscuits and Mike & Ikes in hand, we headed down Kellogg on the way to his day group.  The artist of choice now filling the van was Alan Jackson.  Aaron picked up the CD case and said, “Mom!  Look at #5 and #11.  They’re BOTH about LOVE!!!”

So as #11 played, I made a kiss sound in rhythm to the music……and received a resounding whack on my arm from Aaron!!

“What’s up with that?” I asked.  “I thought you liked the songs about love.”

“Well, love is too weird,” he explained.  “When people are in love, they have to kiss!!”

I just smiled.  I can’t change Aaron’s mind about love being weird, but what he doesn’t know is how much he is loved.  He knows it, but he doesn’t know it.  Does that make sense?

Good days……bad days……laughter……frustrations……joy……worry……fun……anger.  We have it all with Aaron, magnified on most days. 

But when we’re feeling like singing “Song Sang Blue” on one day, there are many days that we’re singing a love song about Aaron.  But don’t tell Aaron.  He’ll think it’s weird……and then give us another sharp slap……

And it’s back to “Song Sang Blue!!!”

 

 

Do You Wanna?

I hear it all day long.  I’m not exaggerating.  Honest.  At least all the part of the days that Aaron is home I hear it over and over.

He walks into the kitchen or wherever I am in the morning.  Most days he begins his first of many words during the day with these words.  Or if they are not the first words out of his mouth, they will be close to first.

“Mom, do you wanna…….?”

And then he often stops.  He just stands there, thinking of how to fill in the blank after “wanna.”  I used to ask what it was that he wanted, but I’ve learned to just wait.  And many times, really, he doesn’t even complete the sentence.  Sometimes it’s because this question is just a habit with Aaron.  Sometimes he just asks it in order to get my attention.  He asks without even a plan in mind as to how to finish the sentence.  Other times, he does have a motive.

“Mom, do you wanna play Skip-Bo tonight?”

“Mom, do you wanna watch The Incredible Hulk tonight?”

“Mom, do you wanna take Jackson on a walk?”

“Mom, do you wanna take me to Dillon’s?”

“Mom, do you wanna give me extra money?”

I could continue for a long time filling in the blanks to “Mom, do you wanna……?”  Just like Aaron does.

But really, a majority of the time Aaron never finishes his question.  It’s like the unfinished conversation cloud hanging over his head in a comic strip, waiting to be completed but never is.

All parents know that repetitive questions from young children can be tiring.  So it is with me and the “Mom, do you wanna……?”  But it’s not just that it’s tiring to hear it all the time.

I’ll admit that I sometimes get weary of being the usual object of his question.  I know however he fills in the blank….the long pause….it will somehow involve me.  I can no more than pull my chair up to my computer after a tiring day and I soon hear Aaron’s loud thumping down the stairs from his room.  Thump, thump, thump down the first flight of stairs.  Is he going to stop in the kitchen for a snack and go back to his room?

Nope!  Thump, thump, thump down the second flight of stairs……where he then stands behind me and stares at my computer screen, maybe loudly chewing gum.  And I wait, usually not very long.

“Mom, do you wanna…….?”

So honestly, at that point, I feel a little put upon.  No, Aaron, I do not wanna…….

I might be tired physically at the end of the day.  But there are many times that I’m tired in spirit.  Like I said, tired of being the one that Aaron comes to as he fills in the blank after “do you wanna……”

It’s a normal parent emotion, that conflict between loving your child totally yet needing some space.  But when your child is a grown man and he has special needs, the emotions of spirit tiredness can cause great guilt.  I have nice breaks from the responsibility of Aaron while he’s at his day group.  I’m very thankful for that.  Yet there are times at home that Gary and I both feel the weight of being caregiver and companion to our Aaron.

My friend, Wendy, recently wrote about this on her Care Page that she has for their son, Elijah.  Elijah, who prefers to be known as Mr. Speedy, has significant special needs.  We’ve been friends with their family for a long time.  Dan, Wendy, Jeremiah, and Elijah even came to the NHRA race at Topeka to see us and Andrew.

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So read what Wendy said:

As I read my text back to myself, ” E and Me…” I think how I often I write those words. I smirk to myself with a light heart; yet heavy sigh and realize this is my life, my calling, my journey. As the rest of the kids move on and become more independent, E and me are the constant. You can be sure you never have to wonder where E is for where you find (mom) me, you find E.

 How could I ever feel lonely? I have Jesus and my super hero, Speedy, making every day a story to reread. Something about the days with my Super Speedy give me a reason to giggle and reflect on how wonderful life is with my special E. His world is heavenly; childlike and simple; the way the Lord wants mine to be.

Wendy’s sweet, powerful words did me good.  Really good.  Often, seeing life through another’s similar eyes is just what I need in order to see my life more clearly.  As Wendy said, sometimes our lives are very childlike and simple, kept that way by the lives of our boys.  I may at times sigh and wish it wasn’t so, but it is.  And there is joy in that simplicity, even on the hard days.

Maybe I need to fill in the blanks to Aaron’s constant question more often. “Mom, do you wanna…….?”

Aaron, I wanna see you healthy and safe.

Aaron, I wanna see you enjoy life.

Aaron, I wanna see you as happy as you are when you find your favorite “croysants,” as you call them.

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Or as happy as you are when you always, always stand in the back corner of the elevator at the doctor’s office……so you can feel the movement better.

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Aaron, I wanna capture your ability to experience life’s simple joys with great delight, just as much as if you were looking at the Eifel Tower or the Taj Mahal.  A lady bug, a dandelion, a frog, a song……they still tickle you to pieces.  That’s a gift!

Aaron, I wanna continue to be your favorite Skip-Bo partner……even when you cheat, and you laugh when I say, “Cheater, cheater – Pumpkin eater!!”

Aaron, I wanna count my blessings with you instead of numbering some things as burdens.

And when I feel burdened, I wanna take it to my Heavenly Father before I unload on you.

I wanna count it all joy, and know that when I don’t, God understands and He has new mercies every morning…..new yet unchanging.

Just like something else that’s unchanging.

“Mom, do you wanna…….?