Category: Family

The Coupon Box

One of Aaron’s Sunday routines is to clip the coupons that are almost always in the Sunday morning newspaper.  I’ve blogged before about his coupon cutting process.  Believe me, it’s just that……a process.  A precise process that he is 100% convinced only he can do.  I, especially, have no business cutting out coupons because I am a dismal failure at that task.  Those are Aaron’s thoughts, not mine.  Aaron cuts as closely on the dotted line as he possibly can.  He then takes any little strips of paper that are left over and he clips them over a certain trash can, snipping each strip into tiny pieces and watching them fall down to join the other tiny pieces that fill the tiny snipped pieces trash can.  It’s an art.  Other odd sized pieces of left over coupon paper fill another trash can.  The finished coupon sheets of paper, full of gaps where once were coupons, are placed neatly in a stack to Aaron’s left side.  And the finished coupons are placed in precise order in the coupon box with the red lid.  It truly is fascinating to watch him cut coupons. 

Sometimes I don’t get the coupon box with the red lid emptied and sorted before the next round of coupons appear the following Sunday.  Such was the case a few weeks ago.  Aaron had completed his coupon cutting set-up in the family room.  His three cups of coffee were waiting for him on the bench beside where he sits on the floor, along with his pillow that he sits on, his scissors, his two trash cans, and the television turned to The Animal Planet.  He came to retrieve the coupon box with the red lid, opened it, and found last week’s coupons still inside.  So without further ado, he promptly dumped the week old coupons onto the table and turned to walk into the family room and complete his coupon cutting mission.

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“Wait,” I said.  “Can’t you still keep the old coupons in the box?”

“No,” he simply answered. 

“Because you can’t mix them up, right?” I asked, knowing full well the answer.

“Yeah,” he again simply answered as he sat on his pillow and started his mission.

Yeah is right.  Aaron can’t stand to mix the old coupons with the new coupons.  He does it on occasion, but not often.  So he clipped that day’s coupons and later I found the coupon box with the red lid on the kitchen table…..every coupon placed in just the right place and in the right order.  Aaron’s way, which to him is the only right way.

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Aaron’s life, and living with Aaron, is so much like his coupon clipping process.  He wants everything in its place…….the details of his life in a certain order.  This goes here…..that goes there…..and if I’m done with it or it’s old or messed up, out of place or frustrating, I just dump it and we start over.  Neat and tidy, with Aaron in control of the set-up and the tools and the timing and the process.  Except life’s not like that, not for Aaron and not for any of us.  You and I can adapt to these changes for the most part pretty easily, but not so Aaron.  Even the simplest change, the most minute little snag in an otherwise orderly process, can easily put Aaron over the edge.

Gary and I just returned from a short trip to Topeka, where we watched Andrew work on his NHRA race team.  Aaron knew that his two caregivers were coming to take care of him.  He was excited for us to leave, as he always is, because our leaving means more eating out and more movies and hopefully less bossiness from those in charge and more of him pulling the wool over unsuspecting eyes…..so he hopes. 

“I can’t wait for you to leave!” he said on Thursday as I was getting ready to go.  “NO parents!!” he added as he rubbed his hands together and laughed loudly.  He is at least very honest.

“What time are you leaving?” he asked, though he had been told how many times before? 

“We’re leaving at 3:00,” I answered.

“Can’t you leave early?” he asked.  “Like 2:59?”

He was completely serious about that.  So I smiled when I hugged him goodbye later, and told him that it was 2:52.  He just nodded his head and went on his way, and I stifled my laughter until Gary and I drove down the road.

Aaron calls repeatedly while Gary and I are away from home.  Every day, several times a day, he calls.  So much for his “NO parents!” comment!   Therefore, it was no surprise on Monday morning when he called, and also no surprise to me that he was most unhappy.  After his busy weekend, and after NO parents, he was ready to settle into his normal……but not ready to go to his day group.  He wanted to stay at home, which is common for him, and he wanted to be there when we arrived.  I always question what to do in that case.  Let him just stay home…..but is that giving in?  Make him go…..and maybe pay the consequences of that decision.  Mainly, his caregiver and day group have to pay the price of Aaron’s grouchiness.

As Aaron and I talked on the phone and he finally agreed, unhappily, to go to Paradigm, he asked me if I would pick him up early at the end of the day.  I said that I would. 

“Mom!” he said.  “I mean to pick me up before 4:00.  I want you to pick me up at 3:59!”

Again, he was entirely serious.  “3:59?” I asked him.

“Yes!” he answered.  “Don’t wait until 4:00!  Will you pick me up at 3:59?” 

So I agreed to pick him up at 3:59 and he went reluctantly to Paradigm.  However, he had a miserable day.  The other clients had a miserable day.  The staff had a miserable day.  Thankfully they are so understanding and forgiving.

It was around 1:30 when my phone rang.  I heard Aaron on the other end, voice thick with tears.  I’ve lived this scene so many times that I didn’t even need to hear what Aaron had to say. 

“Mom,” he started……and I just told him that I was coming to get him. 

“No!” he said strongly.  “I want you to come at 3:59!!”

“But Aaron,” I countered.  “You’re very upset now so let me come and pick you up.”

“No!!” he forcefully repeated.  “I want you to come at 3:59!!”

He handed the phone to Barb, and she said that he was very firm about me coming at 3:59, but then for some reason he changed his mind and said that I could come on to get him. 

A short time later, he and I sat in Freddy’s.  I figured a Freddy’s burger and fries would be the best medicine for him.  He was relaxed and very happy as he ate his burger, but his eyes were still red and bleary from all the tears.  As I asked him why he was so upset that day, he couldn’t tell me why.  I kind of know why, but he really has a very hard time verbalizing outwardly what goes on inwardly in his mind and emotions.

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So many diseases or syndromes show up in a person’s bloodwork when it’s tested, but what Aaron is missing doesn’t show up firmly in lab work or on a piece of paper.  The connections in our brains that allow us to process and filter our environment, and our responses to life’s occurrences in our environment, are missing in Aaron’s brain.  He cannot just simply deal with issues like I can.  So he reacts, often in great frustration, and getting to the root of that frustration and his reaction to it is what we continually try to do. 

However, we are often very frustrated ourselves……frustrated by Aaron’s behaviors and his reactions and all that goes along with it……that it’s hard to pause, take a breath, and try to figure it out ourselves before we can even begin to help Aaron figure it out.  Add to that our embarrassment at times……our tiredness…….our feelings of failure or ineptness…..and it’s like my box of coupons.

I just want to dump the whole thing and start over!!

Start over with an empty box……new coupons…..all in precise order!

But life’s not like my coupon box with the red lid.  I can’t just dump days or events out on the table, and arrange the new day the way I want.  And neither can Aaron.

But we can start each day with a clean slate, and try again.  We can build on the old experiences and the lessons they taught us.  Clipping here……cutting there…..arranging our thoughts and our responses in the right way.  We do it through prayer, through seeking God’s wisdom, and through loving each other through not only the good, but also the bad and the ugly.  And we have plenty of those last two, believe me. 

And through always keeping in mind that Aaron’s most impacting special need is the one we can’t see in that amazing brain of his.  We don’t understand how he thinks at times, or how he acts, but we do understand that he really wants to do better and that the frustrations for him are far greater than any that we as his parents and caregivers will ever feel.    

There’s one more thing about starting each day anew.  God has promised that His mercies are new every morning.  They’re not based on yesterday and on yesterday’s failures.  His mercies are new and fresh every morning, as is His longsuffering and forgiveness and kindness.

Can I be any less for Aaron? 

I don’t think so.  And I can put that promise on the very top of my daily coupon box.

Who Are These Special Moms?

As the mother of a son with special needs, I have often had people tell me that they think God gives special children to special moms.  While I realize that this sentiment is meant to be encouraging and kind, I also must say that I think it’s misguided.  A big reason I think this is because I know me.  I know me better than anyone else knows me, except God.  I know that I’m no more special than any other mom out there.  This isn’t fake humility, either.  It’s just the truth.

All moms need God’s grace for each day.  We who are His children need His grace for our own children in so many different ways.  How amazing is God’s grace, too!  He promises this undeserved favor to us over and over, greater grace for greater needs, along with His mercies that are new every morning.  He has all that I need.  He has all that any mom needs.  I asked God many times to give me grace for the challenges that I faced as a mom to all three of our children.

Having said all this, let me also say that I have a great respect for the moms that I know who are walking this life alongside their child or children with special needs.  My heart goes out to them, ones I know and ones I don’t know, as they face demands that they never dreamed they would encounter as a mother.

So as Mother’s Day approaches, and we see the beautiful cards…….heart tugging commercials…….perfect mother and children photos…….and all the lovely images of motherhood through the years – let me give a “special” shout-out to all the “special” moms of special children.

Those dear Moms:

  • Who spend hours researching your child’s diagnosis rather than hours researching what sport for him to play.
  • Who pray for your child’s teacher to be understanding of meltdowns, bluntness, and a zillion other things that have nothing to do with her grasping of educational facts, and yet have everything to do with her ability to learn.
  • Who dread with a passion those IEP meetings.
  • Who dread having to once again explain your child in every new setting.
  • Who dread high school graduation because……then what?
  • Who try to ignore the stares from others in public places instead of basking in admiring glances.
  • Who are learning how to use your child’s feeding tube rather than planning his fun pizza party.
  • Who are searching for the best wheelchair rather than the best bicycle.
  • Who watch their child being marked for radiation rather than getting a cool tattoo.
  • Who are shopping with their daughter for a wig to cover her bald head due to chemo instead of shopping for the perfect new hair products.
  • Who are driving their older child everywhere because he can’t have a driver’s license due to seizures or other medical issues.
  • Who hurt because their child doesn’t have many, or any, friends.
  • Who are signing guardianship papers instead of college admittance papers.
  • Who are scouring the internet for the latest medical treatments instead of scouring for the best college scholarships.
  • Who know more drug names and side effects than they ever wanted to know.
  • Who spend far more time finding caregivers than finding cool vacation spots.
  • Who are adept at rearranging schedules due to unexpected medical issues.
  • Who lay in bed at night with the sound of your husband sleeping on one side, and your adult child breathing heavily in the baby monitor on the other side as you listen for seizures.
  • Who read your adult child the same book every single night of his life.
  • Who keep waterproof mattress pads on your child’s bed – your adult child.
  • Who have a hard time finishing a conversation with your husband without being interrupted over and over.
  • And who, for some, will find themselves looking at a gravestone on Mother’s Day instead of looking into the eyes of their child.

 

So to all of you amazing mothers of special needs children, I give you a huge high five!!  I hope you know that you are loved and that God does have special grace for you every day.

And may you, as my friend Atha would say, be established in your purpose……this God-given purpose……of raising one of His very special children.

 

 

 

A Nightmare and a Flower

3:30 a.m.  I heard Aaron stirring, then walking up the hall to the bathroom.  He closed the bathroom door with a thump because he never, ever closes doors quietly.  Soon the bathroom door opened, but instead of walking back up the hall to his room I heard our bedroom door open.

“Mom?” Aaron said in as much of a whisper as he can ever muster.  Whispering seems to be a lost art with him. 

“Mom?” he repeated.  I answered him and he continued.

“Can you come to my room?  I need to talk to you about something.”

So I followed Aaron to his bedroom, where he wanted to turn on the light so that he could talk better. 

“Mom.  I had a nightmare.  I dreamed that you and dad made me go live in a support home because I was mean.” 

So that would explain what I had heard him speaking in his sleep earlier……something about wondering if someone would come up to his room to see him.  We talked about his nightmare, as he called it.  He has such a fear of ever having to leave our home.  No matter how we approach that subject it never goes over well.  But we hadn’t talked about it at all the night before, or even at all recently, so I don’t know where the dream came from.  But it greatly bothered Aaron, enough for him to call it a nightmare. 

We talked for a few minutes and I assured him that everything was fine, and not to worry about us making him move because he was mean.  But it is important not to be mean, I had to add.  And with that I made sure he was all the way in his bed, said goodnight, and turned off his light.

He was up before 8:00.  He walked into the kitchen looking a little worse for wear.

“Mom,” he immediately said.  “I don’t feel good.  My head hurts.  I feel weak.”

I tried to encourage him, but finally he brought up the real issue of the nightmare.  He decided that this awful experience should earn him a day off from Paradigm, but he saw right away that I disagreed.  I exuded cheerful optimism, which he tired hard to override with his dreary post-nightmare pessimism.  We were in that familiar tug-of-war. 

A shower and three cups of coffee helped a little, but Aaron had decided that he was not going to Paradigm.  I always leave the final choice up to him, but he knows the consequences of not going.  I told him that we would run down to get him a haircut, which he loves, but after the haircut he was still pretty firm about staying home.

I agreed to take him home and then told him that I was running my errands.  After that, I said, I would be busy all day getting ready to leave tomorrow on an out-of-town trip for Gary and me.  By the time we pulled into our driveway, he was happier and I was on the phone.  He opened his door and in a flash, my door opened and there stood Aaron……holding something for me.

“Here, Mom!” he tried to whisper.  “I picked you this flower.  I picked it because I love you and I’m going to Paradigm.”

Then he handed me the flower, bent over to lean in the van, and gave me a HUG!!

You could have blown me away!!  Kind of like the little seed pods on the flower he gave me.  You see, his “flower” was this:

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But he was as proud of this old dandelion as he would have been if he was holding a dozen roses.  And trust me, I was too!  This bent over, half bald seeded dandelion was what Aaron saw first and so pluck it he did……for Mom!

After I got off the quick phone call, I thanked and thanked Aaron for the flower.  He just beamed.  He got his glasses and his watch and his wallet, and off we went to Paradigm.  I think his morning there was a little tricky, but the rest of the day seemed to go well. 

It’s a good thing I don’t have allergies, because I’ve kept my special flower in the kitchen all day.  It’s nothing spectacular, but it’s the best Aaron had.  It would have been understandable for me to not want this sad sample of a flower.  To maybe throw it away when Aaron wasn’t at home. 

But I keep thinking about how the best Aaron had to give me was…..well…..not what we would call great, but it was from his heart and that makes it totally awesome.  That’s so often what Aaron does and is, all through the days of his life.  We may not get exemplary behavior every day…..we may not see stellar progress on most days…..we may not even take the time to notice how hard he tries on other days.

But for Aaron, it’s there.  His attempts to fit in, to express himself, to understand this world we live in with him, are there.  Some days the best we get is for him to ask if I’m happy that he didn’t make “farting noises” with his mouth in the store, but he made “meow” noises instead.   Or that he didn’t clap SUPER loud or clap too AWFULLY many times.  Or that he didn’t get 10 toothpicks at the welcome counter at the restaurant…..only 4! 

He so wants us to be proud of him.  He so wants to conquer his inability to communicate what’s really on his mind…..what’s really bothering him……what’s in that heart of his.  But it’s just so nearly impossible sometimes for him to do that……to talk like you and I do.  He might react, like he did this morning.  He might hit or slam a door or be defiant.  But I’m convinced that part of the frustration that Aaron feels is not that he’s mad at the situation….he’s mad at how very hard it is for him to identify and express to us just what he’s mad about. 

So whatever he is able to share, we must take it gladly and try to understand.  We must grasp what he hands us and take care to handle it well.  Just like my dandelion flower.  Would I have chosen it?  No.  But Aaron did, and with it he showed me his love.  To me that gangly old dandelion is beautiful.  It represents Aaron’s heart. 

I hope that when he sees it sitting on the table, or maybe later in a vase, he’ll know that Mom not only loved his gift……he’ll know that Mom loves HIM. 

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The Wonder of Me…..And Aaron…..And Lots of Things

I went to pick Aaron up at his day group on Thursday afternoon. I waited in the van for a couple minutes, then saw Barb coming toward me. I knew before I really knew that this probably wasn’t going to be good news. I was right. She told me that Aaron was inside after having a very rough afternoon and that he was refusing to come outside. I went in and we found Aaron laying on one of the couches, crying and very upset. After some time, and moving to a new couch where he laid down again, he told the story of how he had acted……which often starts with him thinking he’s teasing but turns ugly pretty quickly. One thing led to another and the situation became something it never needed to be.

How we wish that Aaron understood that his idea of teasing is often anything but. How we wish he could control himself when he is being redirected. All the talking and lectures and therapy in the world doesn’t seem to sink in. Maybe a little, but not as much as needed. He just doesn’t connect actions and repercussions like you and I do. Reading about the autistic brain……writing about the autistic brain…….saying that I understand the autistic brain as much as I can…….often doesn’t mean as much as it should when I’m staring at my belligerent son, hearing of his actions and trying to control my own embarrassment and anger.

Aaron is often immensely funny, but Aaron is also sometimes immensely frustrating. Thursday fell into the last category.

Aaron is seeing a family therapist every two weeks. This is a new thing for him. I had high hopes that as much as he loves to talk, he would really take to this and love talking to her. It hasn’t quite worked out that way. If she just let him talk about his things, like aliens and movies and games and eating out, then he would probably look forward to it. But he realizes that she wants to talk about his issues……how he’s doing at Paradigm and at home with relationships and anger and attitudes. To Aaron, this is uncomfortable and a waste of time, so he hasn’t been enjoying their sessions like I had hoped.

This past Tuesday she gave him a paper on which she had drawn a large stoplight. The green light means that he is doing good, so keep going. The yellow light means that he is starting to feel some frustration, so he needs to be cautious. The red light means that he is having a meltdown full of anger. At the end of the day, he is to mark what kind of day he has had…..green, yellow, or red.

Aaron didn’t want to take the paper home from her office. Then he told me several times that he thought the paper was stupid. I left it alone on Tuesday night, but on Wednesday night I told him before bed that it was time to mark his stop light with what kind of day he had. I felt like Wednesday had been a green day, so I thought he would be happy to mark the green light. But when I told him to get his paper and mark it, he crossed his arms and told me that he had hidden the paper.

Oh boy.

After some talking, he finally got down on his hands and knees, and pulled the paper out from under his bed. He rolled his eyes as he put a mark on the green light, the mark I thought would make him happy. Then he picked up the paper and as we stood there talking before saying good night, he crumpled that paper some in his hand. He was simmering, I knew it.

So after his meltdown Thursday at Paradigm, and a rather rough evening at home during Skip-Bo as I tried to talk to him, he went upstairs at my direction and brought down the stop light paper so that he could mark it. I knew that he needed to put a mark on the red light, and he knew that, too.

He came down to the kitchen table with his paper, and this was what he laid on the table.

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Well, so much for that idea. How many times I say that when we try something new with Aaron!

So often it’s back to square one with Aaron. We rarely feel like we pass go and collect our $200.00. I know there are times in his life when he needs to pull back and reboot, so on Friday I let him stay at home. He went grocery shopping with me, helping me at the store and helping me carry in the groceries at home. We went to see Jungle Book, run more errands, and get him a sub for supper. We watched a little TV in the evening. It was a pleasant, fun day for both of us.

Aaron found an Elvis CD that he wanted when we were shopping together at the first of the week. He’s been completely fascinated with the songs and with Elvis all week as we’ve listened to the CD while driving. He’s been hilarious with some of the things that he has said about Elvis, like how his voice is “jiggly” and his dancing is “rowdy.”

So on Thursday, meltdown day, Aaron turned on the Elvis CD in the van. The second song that played just left me pretty stunned and with a huge lump in my throat. “The Wonder of You.” Look at the lyrics for the first part of this song:

When no one else can understand me.

              When everything I do is wrong.

              You give me hope and consolation,

              You give me strength to carry on.

 

              And you’re always there to lend a hand

              In everything I do.

              That’s the wonder, the wonder of you.

 

Aaron has decided that he loves this song. It’s uncanny. This song that speaks volumes to me about what kind of mother I need to be with Aaron has become a very special song to him as well. It’s not for the reasons that it’s meaningful to me, either, because I’ve had him tell me why he likes it so much. But he’s played it over and over since Thursday. We even listened to it with Gary at supper last night.

I really do want to be this kind of mother in Aaron’s life. Sometimes he’s certainly hard to understand and he does a lot wrong, but I pray that I will give him hope and consolation, strength and a helping hand.

Honestly, many times, I don’t feel like I’m a wonder. I feel more like I’m left wondering…..wondering what to do, wondering what’s going on, wondering how I can stay calm…..

I could go on for a long time about some of the ways that I wonder.

But Aaron needs me to be there for him despite the wondering and the frustrations, the tiredness and the seeming dead ends that we end up taking. He’s taking a nap right now and just had a seizure. He needs me physically, too.

But he needs me the most when, like the first part of the song says, no one else understands him and everything he does is wrong. I know he’s frustrated by those times more than we are.

All moms can relate to what I am saying, and especially moms of special needs kids and adults understand it all too well.

Aaron will probably never look at me and say, “Wow, Mom! You’ve meant so much to me. You’re a wonder!”

Just reading that makes me laugh. I’d faint if he said that and probably get hurt, so it’s just as well that he doesn’t say it, right?

But I will keep striving to BE that in Aaron’s life…..pick him up, understand as best I can, hold his hand (figuratively speaking, because he doesn’t hold hands much ), and give him strength and consolation.

But trust me, I know me, and I know that at the end of some of our days I’ll still be saying, “Yes, I’m a wonder! I’m a-wondering how on earth we both made it to the end of this day alive and in one piece!!”

And tomorrow’s a new day!

             

Monopoly On a Scrabble Board

I have a dear friend, Joyce, who has two sons with special needs. They each have significant special needs. Joyce is someone that I admire very much. I know she couldn’t handle all that she does apart from God’s grace. One day over lunch, she said the most profound thing to me. We were discussing some of the unusual ways that our boys function in their daily lives, and how we must function as their moms.

Joyce said, “It’s like playing Monopoly on a Scrabble board.”

That’s just one of the best descriptions I have ever heard about living with a child with autism, or many other developmental issues.

How on earth DO you play Monopoly on a Scrabble board?!! At first glance, I might say that you DON’T!! But as parents of our special children, we must. We have to be creative……flexible……think outside the box……and be very patient when all the pieces just don’t fit.

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The bottom line is this……we just don’t have a choice. So we take the Scrabble board and figure out our version of Monopoly, often writing the rules as we make the plays……and changing the ones that don’t work.

Aaron has been doing so well lately that I’ve felt like I’m mostly playing Monopoly on a Monopoly board. Imagine that!!

Oh, we always have our Aaron moments because that’s just how it is. But he’s been unusually happy and kind lately, both at home and at his day group. He’s even wanted to help more around the house, including in the kitchen.

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There are mornings that he hasn’t wanted to go to his day group, just like we don’t always want to get up and face our day. One morning he was getting upset about having to go to Paradigm, saying that he just doesn’t have a good time there.

“But Aaron,” I countered, “every time I pick you up, you say you had a good time.”

Not missing a beat, Aaron replied, “Well, the next time you pick me up, I’m gonna say I DIDN’T have a good time!!”

So there!!

He didn’t see my smile as he huffed out of the room. He ended up going that morning and having a good day, by the way.

This past Friday, however, was just the reverse. He left the house happily. We enjoyed listening to our oldies on the way to Paradigm. He was looking forward to some shopping and pizza at the end of the day, after I picked him up.

I pulled up to Paradigm and saw him sitting outside with his friends. His face was red and he was minus his glasses. I just knew…..and I was right. It had been a meltdown day for Aaron, and who knows why? He had broken his glasses….again…..but thankfully this time I was able to pop the lens back in. His staff was talking to me as Aaron sat in the van beside me, red faced from crying. So instead of shopping we just went to get his pizza and then head straight home, where we continued to sort out what had happened. His behaviors were wrong on several levels, and dealing with it would take a long time, I knew.

Hand me the Scrabble board.

And that rule book that I’m working on, continually.

Yesterday we took a walk in Swanson Park, stopping at the recycling bins on our way. The bins were full, so we couldn’t drop our things off then. We enjoyed the park, the fresh air and sunshine, and the deer that we saw. Aaron had a good time, despite complaining of a sore throat.

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Last night at bedtime I told Aaron that we might get some rain, and maybe some thunder and lightning. Aaron loves rain and he loves storms. He followed me up the hall after I delivered the hopeful storm news to him.

“What time?” he asked.

I told him that I didn’t know what time the rain or storms would come, but that if it happened, it would be later. As in not this very minute.

“Like when?” he asked.

I repeated that I didn’t know just when.

“Will it be later?” he continued asking.

Deep sigh……which he totally didn’t notice.

“Yes,” I affirmed. “The rain and possible storms could be later.”

I hoped to finally be finished.

Aaron followed me still.

“So we might not hear it?” he wondered.

The Scrabble board! Where’s the Scrabble board?!

Today Aaron is home with his cold. He is home with me, snorting because he doesn’t blow his nose.

I am re-reading the Monopoly on the Scrabble board rules about patience.

I was in the bathroom. Aaron stood on the other side of the door, happy because he had asked if we could try the recycling bins again. I had said yes, and had also told him that we would run an errand as well while we were out. Aaron sees all sorts of possibilities in the word “errand.” Most of which are in the form of food.

So there he was outside my bathroom door.

“Mom?” he began. “Are we going to recycle?”

“Yes,” I answered. “I said we’ll run an errand and do the recycling later.”

“What do you mean later?” he asked.

I wilted a little.

“Just later,” I replied.

A moment of silence.

“So what time?” he asked.

A Scrabble board in every room is what I need, with all the Monopoly pieces. Certainly in every area of life with Aaron.

 

 

This Is My Friend

Years ago a visiting couple walked into a local church here in Wichita, sliding into a pew near the back. Having a long history of working with special needs, the husband was amused to see a young man sitting in front of them with his grandmother……a young man with special needs.

“They follow us everywhere,” Scott whispered to his wife, Atha. They chuckled, and after the service Atha struck up a conversation with this grandmother. Of course she did. That was classic Atha, friendly and warm. And this grandmother couldn’t wait to find me.

“Patty!” she said. “I met a couple who were visiting here for the first time. They have a background of ministry with special needs. I’ve got to introduce you!!”

So at the first opportunity, she did just that. Atha and I talked and talked the first Sunday that we met, making plans to get together soon for a coke and more conversation. We met at Spangles one afternoon soon after, and as they say……the rest is history. We clicked. We understood one another. We were on our way to a great friendship.

Over the next couple years, Atha achieved her life’s dream of being awarded her PhD. I was so proud of her, though I had gotten in on the action late in her life and late in her dream. It was only as the years went by that I learned more and more of the sacrifice and grit that went into Atha achieving this goal. She had put this part of her life on hold as she mothered their three children, but all along she was very active in the world of teaching special needs and writing Sunday School curriculum for special needs for the Southern Baptist Sunday School Board. She taught students; she taught teachers; and she taught me.

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Atha taught me lots about special needs as we worked together trying to establish that ministry in our church. She taught me lots about how to teach students with special needs. She taught me lots about my own son, Aaron, although she was always quick to point out that I was the expert when it came to Aaron.

But what Atha taught me the most was what it was like to have a friend who loved unconditionally…….who stuck with me through good and bad…….who was there for me no matter how busy and complicated her own life was.

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Her phone calls were regular and so welcomed, no matter what all she had on her to-do list. Our lunch dates were refreshing to me on so many levels. And every June we made sure that on our schedules we placed a very important lunch date……one at which we celebrated our birthdays. Atha’s birthday was June 15 and mine was June 18, so we would try to celebrate close to both of those dates. I would pay for Atha’s lunch, and Atha would pay for my lunch, and we would laugh and laugh.

 

Atha took my family as her own. Not only did she take Gary and our children into her heart, as did Scott, but she also grew to love our extended families. It didn’t matter that they were clear across the country in the mountains of West Virginia and North Carolina. She grew to know and love each one as if she had been a part of their lives forever.

Atha loved human beings and the stories that each person carried. She loved telling stories….she loved hearing my stories…..and she loved all the stories of the hundreds of people that she took the time to know and care for over the years.

A favorite quote from Atha tells so much about her: “Successful leadership begins with how you treat others. I challenge you to find time to be kind today.”

Atha definitely followed her own advice. No matter how busy she was as she worked to start her ADHD coaching business; taught college courses in multiple places; conducted seminars for teachers; and so many other activities……she still had time for those phone calls and visits. Time to keep in touch with me, to love me, and to be there for me no matter what. To teach me one of her most unforgettable lessons – to be established in my purpose.  https://hesaidwhatks.wordpress.com/2016/03/09/my-purpose-2/

Atha and I started going to different churches three years ago. We truly missed each other on Sundays. But I would often get a text from Atha on Sunday. “Are you worshipping?” she would ask. Or after church, she would ask what songs we sang. She and I would compare songs, and talk about what they had meant to us. Sometimes she would even text during her worship service to say, “We are singing Great is Thy Faithfulness!” That was our favorite song, one which encouraged each of us so much. We would talk about the sermons we had heard, and Atha would ask what I had learned. Ever the teacher. Ever concerned.

Atha began having some significant health issues last fall. On Dec. 26, I got a text from her son, Kyle, telling me that they were taking Atha to the ER. The day was very grey, cold, and icy…..just like my heart felt as I worried about her all that day. It was discovered that in addition to some other issues that had plagued Atha’s body, she had also recently suffered a stroke. I was shocked when I first saw her in the hospital. How sick and tired and old she looked!

On one of my visits to the hospital to see her, two CNAs came in the room to clean her. I sat behind the curtain as they worked. Soon, in typical Atha fashion, she looked at the young man and said, “Young man, what do you want to do with the rest of your life?” He stammered around for an answer, not expecting such a question from this little sick woman. I just smiled. He didn’t know my Atha. She then proceeded to instruct him on setting goals and achieving them. I bet he never forgets her.

Weeks went by, with Atha sometimes rebounding and giving hope that she would recover, only to be followed by a downward turn. She would fluctuate between rehab centers and the hospital. On some of my visits with her, she would talk in her special way….slowly and with difficulty, but still like her old self.

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“What do you know today, Patty?” she would ask. She didn’t want to talk about herself, but I felt guilty talking about me and my family and my issues, so small compared to hers. But that was Atha, always concerned for me above all of her own cares.

One day in the rehab center, she was very vacant. I was worried. I couldn’t get her to engage in conversation and she seemed far away. A therapist came over to her and asked Atha to tell her who I was. Atha looked up, brightened, and said, “This is my friend, Patty Moore.” Just like she always used to do.

On Monday, March 21, I sat by Atha’s bed at the hospital. She wasn’t doing well at all, but we still hoped for a full recovery. She kept her eyes closed, but she often did that. She didn’t talk. I opened my little Bible and held it up close as I read her some Psalms. Every little bit Atha would quietly say, “Amen.” That was all. Then she asked me to pray for Jesus to heal her, so I did. And before I left, I told her I loved her, my friend. And she said she loved me, too.

On Thursday, Sarah got the call about end of life issues and hospice. No one could believe it was happening. I spent part of that evening with them at the hospital. Before I left, I leaned down to my mostly unresponsive Atha. I said some things to her, and then I told her that she would always be my dear friend. Very softly, she spoke to me. One word.

“Friend,” she said.

Atha was moved to hospice late that night. I saw her on Friday and on Saturday, where a little twitch of her mouth was the only response she gave me. On Easter morning, a gloriously beautiful morning with a soft snow and bright sunlight, Atha went to heaven. How significant that her home going was on Easter! Atha always knew how to do things right.

This morning, a couple walked into a local church here in Wichita and slipped into a pew near the back. They were dreading this day. He put his arm around her as she fought the tears that were forming. Gary and I were here for Atha and for Scott, like they had always been present for us. But I just never dreamed it would be in this way. Never in a million years.

Many people were in that church this morning to honor Atha. As part of the service, people were given time to tell their stories of Atha…..of how they knew her…..of what she meant to them…..of how she had impacted their lives. She would have loved the stories, even though they were about her. She did love hearing and telling stories, after all. It was wonderful to hear just a small sample of how she had blessed and helped so many.

I’ll always treasure the many Atha stories I have tucked away in my memory and in my heart. Too many to tell here, that’s for sure. But suffice it to say that the best thing that Atha could ever have said to me is the last thing she ever said to me.

Friend.

And with that, I am beyond blessed.

This is my friend, Atha McNay.

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The Detour

Aaron and I were in Dillon’s last week, where I told him to pick out some items for his Friday snack bag. I usually have his goodie bag all ready for him when he comes home on Friday but this week had been full of unexpected things that had made it impossible for me to have his bag done beforehand. He never minds picking out the items himself even though he also loves it when his bag is full of surprises. His treat bag is a reward for a week well done by Aaron…..or at least done, sometimes not all too well.

Better behaviors = bigger bag. Or so that’s how it was meant to go. Like his former teacher, Mr. Z, used to say – “Sometimes you have to make it worth his while.”

Aaron, ever the clever one, sometimes calls it bargaining. Nothing much slips by his awareness.

Anyway, it’s fun to give him something to look forward to and to work for at the end of his week. On this particular Friday, he had already walked fast and eagerly toward the bakery aisle where he knew there would be a container of croissants waiting for him. I gave my permission as he held the treasure up for me to see, but I said no to his hopeful request for TWO packages as he held up the second one for me to approve. Aaron just laughed, not at all surprised to be vetoed on that one, and then he lunged past the meat section toward the candy aisle……but not before stopping to loudly point out the lobster and shrimp like he always does. I could really just have a recording of my comments as we walk through the store on most days. He’s so predictable in many ways. In other ways, not so much.

Aaron turned left down the candy aisle, seeming oblivious to the sample lady standing nearby. This pleasant young lady had my attention, though, so I stopped at her little table to acknowledge her offer. I was distracted for a short time with little Twizzler samples and water flavor enhancers, chatting away as I am prone to do. We finished our brief conversation, said “Have a good day!” with our smiles…..and I noticed that her eyes darted down the candy aisle that was just behind us and her smile grew even larger.

I turned around and instantly knew why as she said, “Looks like he’s found some candy!” There was Aaron, getting down and personal with the Starburst Jelly Beans.

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And there was a man coming right toward him, pushing his cart and just looking at Aaron. I’m used to Aaron sitting down in store aisles when I’m not there to tell him no, but I imagine this man wasn’t at all sure of what was happening here. I was telling Aaron to stand up, but Aaron doesn’t stand up quickly from a sitting position…..and it’s quite a sight to see when he does……so now this man just swerved around Aaron and gave me a kind smile as he passed us.

I smiled back, thankful that he didn’t scowl or stare awkwardly.

At times like this I just need to have a sign that I can hold high. A sign that in bold letters says – DETOUR!!!

Aaron is truly completely clueless that he has done something a little strange or that he is disruptive. We face these moments constantly in his life. It’s just who Aaron is, and it’s who we must be as well.

We often must take a different route to our destination with Aaron, and hope that we arrive there…..and in one piece. What worked for our other two children didn’t work with Aaron and often still doesn’t. When our children were younger there were many moments of frustration from them as they tried to understand their unusual brother. They both went through times of questioning, as did Gary and I, about why Aaron acted the way he did. Even after the diagnosis of autism, we still struggled to understand what made Aaron tick.

There were times that Andrea and Andrew thought that Gary and I didn’t discipline enough. That we gave in too much. That we let Aaron have his way too often. Now that they are adults, things have settled down a lot and they really do understand their brother. They love him to pieces. It just takes time, education, and a little maturity to come to grips with a brother who can be disruptive and annoying……and super embarrassing in public!

We could be rolling right along in life and before we knew it…..DETOUR!!

A detour because of Aaron’s behaviors or actions…..a time we were forced to recalibrate…..to try to understand and to work through a situation. Or to be uber patient or thick skinned, despite the red on our faces or the words we wanted to say but couldn’t…..to Aaron or to insensitive others.

After all these years, when I turn and see Aaron sitting on the floor like he did at Dillon’s, it makes me laugh. He does look pretty cute and funny sitting there. I think people now are more aware, too, of these special needs. Their smiles and looks of understanding are more encouraging to us parents than they probably realize.

To you parents of special children, just keep the lines of communication open as much as possible with your other kids. Let them vent without judgment. Understand that age, hormones, peer pressure, and so many other things weigh into their reactions to their special sibling. Things WILL settle down with time. And in the meantime, try to spend some one-on-one time with your children, a time where they know they can safely talk to you and that you will have empathy.

And remember that we often have to take a detour, going around issues in a different way than we normally would, because that’s just how life is in their world……and we can’t change that.

Later Aaron shared some of his jelly beans with me. That’s the way it is. Understanding and love lead to sharing and sweetness.

Sticky and germy sometimes, but still it’s sharing, done Aaron’s way.

The DETOUR way.

The Waiting Game

It all started a few weeks ago with a commercial that Aaron and I saw on television during Wheel of Fortune. There was Ronnie Milsap, playing a piano as he sang one of his signature songs. For some reason, Aaron was captivated. Maybe I made a comment about Milsap. I don’t really remember, but from that point Aaron was on a mission. His mission, that he gladly accepted, was to find a Ronnie Milsap CD. Of course, Ronnie Milsap CDs are virtually impossible to find on store shelves. We did find the Ronnie Milsap insert at Wal-Mart that showed where some CDs used to be, but none were to be found. This discovery just further fueled Aaron’s desire to find some Milsap music, but several stores and phone calls later found us empty handed.

Aaron knows that when one is empty handed, there is always…..AMAZON.COM!!!! His answer to every fruitless search on the planet is found….in his opinion…..at this amazing Amazon place. And Aaron, knowing that Mom was weakening in her search, knew something else. He knew that one should strike the iron while it’s hot, and that if Mom was on the amazing Amazon for one item, she might…..just might…..order two items while she’s at it. Or even THREE!!!

So Aaron used his very favorite internet tool…..GOOGLE. And on Google he found an epic disaster movie that he decided he could not live without.

10.0 EARTHQUAKE!!!!! Predictable story line…..cheesy acting…..unknown actors……painfully unbelievable….

In other words, the perfect movie in Aaron’s professional opinion. And trust me, he knows ALL about terrible B disaster movies.

So this past Tuesday, Aaron hovered behind my chair as I ordered The Essential Ronnie Milsap CD……10.0 Earthquake……and The Essential Charlie Daniel’s Band just for fun.

Aaron’s hounding and hovering surely paid off, he was thinking.

And then it began. The countdown, all too familiar to me. And a big reason that I really wanted to find Ronnie Milsap in a store, where I could buy the CD outright without the wait.

I had barely gotten out of my chair after placing the Amazon order when it began.

“Mom, when will it come?” Aaron asked.

“It’ll be a few days, Aaron,” I answered.

“So when will it get here?” he continued.

Oh dear. I was thinking that paying the whopping postage charges for overnight shipping might have been worth it. I didn’t want to tell Aaron that Amazon had said 4 – 6 days. Why not? Because then Aaron would want to know which it would be. Four days? Or six days? If four days, then that would mean Saturday. If 6 days, then that would mean Monday. We would be in constant uncertainty as he tried to nail down the four or six day business. Nope. So I made a decision at his next inquiry, which was soon in coming when I didn’t answer the previous one.

“Mom, how long will it take?” he queried.

I told him it might take a week. That’s a nice solid guess.

“A week?” he confirmed.

He thought for a few seconds.

“So……next Tuesday?” he asked.

“Maybe,” was all I would venture.

“So if it doesn’t come on Tuesday, then you lied?” he continued.

There is no winning in this waiting game with literal Aaron.

There were more questions that day, and the next.

Will it come in a box?

Will it come to the front porch?

Will it come to the mailbox?

We were 24 hours into the amazing waiting game from our amazing Amazon order, and I was already exhausted from Aaron’s desire for definitive answers.

On Thursday morning, Aaron was up before 6:00. I was NOT ready for that! And I was really NOT ready for this, the first words out of Aaron’s mouth as he stood in the kitchen.

“Mom, you said it might come in a week?” he asked.

“Yes, Aaron, it might come in a week, but we’re not sure,” I answered.

“Why might it come in a week or not in a week?” he wanted to know.

Here, Aaron. Drink your coffee and get back with me later.

On Friday, it went like this: “Mom, I think my video will come on the 15th.”

“What day is that?” I asked him.

“It’s another Tuesday,” he told me.

Tuesday to Tuesday is a week, and Aaron was hanging on to that hope.

Saturday: “Mom, what time does the mail come?”

AHHHHHH!!! With another nebulous answer, Aaron just walked away in disgust.

He stood at the window later in the afternoon, eyes hopeful as he watched Gary remove the envelopes from our mailbox. Was that a package that Gary removed?

Yes! YES!!!! Dad had a package. Could it be?

I was thinking it BETTER be!!!

And yes, finally Aaron held his long awaited amazing Amazon package! He was all smiles…..but no more so than me! Inside was Charlie Daniels, Ronnie Milsap, AND 10.0 Earthquake!!!!

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Aaron asked if we could listen to Ronnie Milsap later while I fixed supper. I agreed. He stood in the kitchen for a song or two, but before I knew it he had gotten a dining room chair and perched himself in it as he listened.

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He was pretty cute sitting there happy as a lark, listening to every word of every song. He kept the CD holder close by, and at the end of each song he would look to see what the next song was.

“Mom, Smokey Mountain Rain is the next song!” he would announce, rubbing his hands together in delight.

Ronnie Milsap continued to croon during supper, with Aaron trying to hear every word and every note.

Of course, I watched the stellar Earthquake 10.0 movie with Aaron later. It was as awful as I knew it would be. Aaron yelled and clapped and had a great time. I endured.

“Mom!” he said at one point. “Your face doesn’t look like you like this movie!”

Sometimes his powers of observation are very acute. So I worked hard to rearrange my face and act interested. Aaron kept turning his head in my direction, matching the look on my face with my level of interest. 87 minutes. I was a far better actor than any of those unknowns on the screen, let me tell you. 87 minutes of fake interest should earn me an Oscar!

Well. Things should be a little more settled down here. The amazing Amazon package arrived….and in LESS than a week! We have fun new music to listen to, and I already checked off watching another lame movie so I don’t have to hear Aaron ask me every day about when I’m going to watch it with him.

Tomorrow Aaron has a doctor appointment in the afternoon. I will go to my Bible study in the morning, then come home to pick him up for our usual “Doctor Day Lunch Out.” I can hear it now.

“Mom, when will you go to Bible Study?”

“Mom, when will you be home?”

“Mom, where do you want to go eat?”

“Mom, what time is my doctor appointment?”

“Mom, what time did you say you’ll be home?”

“Mom, what time are we going to lunch?”

Another day…..another chance to enter Aaron’s world and to hope he can tolerate mine as well.

 

Simple is Good

I can hear our Kansas wind outside blowing like crazy. We’ve had several days in a row of very strong winds, typical for flat Kansas. I can also walk by a mirror and see that I’ve been out in the wind as I look at my fly-away hair!! The winds remind me of living with Aaron in many ways. He’s like shifting winds most days. We never know what we’ll wake up to find with Aaron as far as his mood or his physical state or his general attitude.

Lately, though, he’s been mostly very happy. I wrote about that a couple blogs ago. It’s been fun for us to experience, and definitely a relief for the staff at his day group, I’m sure.

But I should have known that on the very next day after posting my happy blog, Aaron woke up in a mostly grouchy mood. Why does that happen? Anyway, he kept coming into the bathroom where I was putting on my makeup, fixing my hair, and doing all my getting ready things that morning.

“Mom, can you hurry?” he impatiently asked.

“Mom, why are you taking so long?”

“Mom, did you clean my glasses?”

“Mom, why aren’t you ready?”

I know that when he’s like this it’s better to mostly ignore him instead of returning his impatience, so that’s what I did. But not before I made one observation.

“Aaron,” I said. “You were so happy yesterday. So why are you angry this morning? What happened during the night?”

He just stood there and stared at me. I continued with my face preparation as he stared. Then he simply turned and walked out of the bathroom.

Soon he was back, of course.

“Well, All Star is boring!” he informed me. “I found that out during the night.”

It was really hard not to laugh. So that’s what he found out during the night? That All Star Sports, their activity for that day, was boring? Since when?!

Aaron went on to his day group and he had a reasonable day, from what I was told. I went in to his day group with him to talk to Barb about whether Aaron and I could take supper over to one of their residential homes on Friday. Aaron’s best friends, all girls, live there and he had been wanting to go back there again as we have done in the past. It cheered him up to have that planned at last. This was on Wednesday.

The next night, Thursday, Aaron had two hard seizures during the night. He stayed home on Friday, feeling crummy, but wondering over and over if we could still go to “Shawna’s house,” as he calls it. He insisted on going to get a few groceries with me, walking like a zombie through the store. He slept off and on during the day, but had no more seizures. We did take chicken enchiladas and No Bake Cookies to his friend’s house. I was so thankful that it worked out for Aaron to do that. He slept all the way there and most of the way home, but he had a good time at their house as we sat around the table, eating and talking. The girls had missed him that day at Paradigm, and they were so sweet…..rubbing his back and asking him how he felt. Each of them has significant special needs, so it’s just very touching to see them worry about Aaron.

Aaron was in bed a little after 8:00 that night, totally exhausted. But he kept coming back downstairs to be sure that it was OK for him to go to bed so early. It was fine with us, but not so much for Aaron and his rigid schedule. Bedtime is 10:00 or later!! Not 8:00!! But he slept for 12 hours and woke up a new person.

A very new person!!

Look at what Aaron did with Gary and I on Saturday.

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Aaron, who resists most work…..and definitely yard or garden work….actually got outside with us and helped!!

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And he helped happily!!

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He gathered up the big Crepe Myrtle limbs that I pruned, and he pulled up old tomato stakes with Gary in our garden.

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And Jackson supervised all of us.

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It was a really a pleasant afternoon, and a surprising one for us as we watched Aaron willingly help.

Simple pleasures mean the most to us. The warm sunshine, the fresh air, trying to find the pecking woodpecker we heard, laughing at Jackson encounter our neighbor’s trying-to-be-brave cat, and ending the day with a simple supper…..Wheel of Fortune and Blue Bloods…..and a couple games of Skip-Bo.

The older we get, the more we know that simple is good. Simple is better for Aaron. And the things that make him happiest inevitably do the same for us as well.

Too Often Unsung

I’m about to make somebody very uncomfortable today. That’s not my intention at all. But I know this somebody very well and I know that this will be the result of what I am writing. This somebody is my husband…..my friend…..my Gary. It’s not his birthday. It’s not even our anniversary. I just want to give a big thumbs up to this man who does so much for me and for our family. He doesn’t like lots of attention. Sorry, dear.

I watched him spend hours…..HOURS…..this past weekend on my blog. He tried to fix the problems with my old blog. It took forever! He finally realized that there was no way to go forward with it, so then he dug in and got me started on this new blog site. It took lots of work to get it up and running, and to understand all the in’s and out’s of it. I still have questions, but it’s so nice to know that I can go to him for answers or that we can work it out together. And all of this work he did while he was coming down with the respiratory crud that his co-workers so kindly shared with him.

This little venture of mine…..this blogging and writing that I love….is important to him as well. I can’t express what that means to me. Yet what I do has always been important to him. He has worked hard in both the military and civilian world to make it possible for me to be where I desired to be – at home with our children. He supported me in our many years of home schooling. And he supports me now as I continue to be with Aaron. WE continue to be with Aaron. I couldn’t do it all without Gary.

He’s a loving husband, appreciative and kind.

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He’s also a very hard worker at home.

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And always has been…..and continues to be…..a fabulous dad.

To Aaron:

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To Andrea:

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To Andrew:

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I am very blessed, and I am very thankful, for this man in my life. I just hope he still speaks to me after he sees this.   🙂

I love you, Gary!