Category: Family

What I Would Have Missed


I was busy last night.  How many days could I start a story with that same simple sentence?  Gary and I are leaving tomorrow for Houston.  We get to spend the weekend with Andrea…..YAY!!!……and she is going with us to see Andrew in a race on Sunday…….double YAY!!!  You know how it is before a trip.  So much to do….so much to remember…..and since we have a caregiver coming in to stay with Aaron and Jackson, it seems to double my busy load.  
I was checking items off my to-do list while thinking of others that I had neglected to write down.  Scurry here, scurry there…….and I heard a loud THUMP!  I looked out of the bedroom door and saw Aaron standing there at the head of the stairs, looking in my direction…..his animal print blanket slung over his shoulder and his back-scratcher in his hand.  He had hit the wooden door of the linen cabinets there in the hall.  We had a little “staring at each other” session before I asked him why he had hit the door.  I knew he wanted my attention, but I wanted to hear his version.  He then told me that he was bored……and I then told him a few things about not hitting the door, etc., etc.
He lumbered down the stairs while I continued my packing and organizing……my scratching off the to-do list and adding to the to-do list.  Finally, I was nearly finished with what I had wanted to accomplish for the evening.  I thought about slipping down to my computer to catch up on emails and Facebook.  Important stuff, you know.  But I thought of Aaron.  I thought of the real reason that he had hit the linen cabinet door.  He wasn’t just bored.  He wanted some time with me.  That loud bang on the cabinet door conveyed much more to me that he was able…..or willing….to say.
By this time he had gone back to his room.  I found him sitting there at his desk, headphones on and movie playing.  Godzilla…..the old version…..1998.  I knew what I was getting into as I leaned over and asked Aaron if he wanted to play a game of Skip-Bo.  I was going to hear all about Godzilla……every detail.  What kind of monster….where did he come from…..how he breathed fire……what his feet looked like……and his tail……and his ugly face…..
Aaron was so happy when I asked him if he wanted to play Skip-Bo.  There we were, him talking rapidly……about Godzilla……while I shuffled the cards.  We soon were playing our first game and I was feeling relaxed.  I ignored my tablet nearby and my phone close at hand. I simply focused on Aaron.  He talked and talked about a variety of things, happily and freely, as we played cards.  
And then he stopped and he looked at me, making direct eye contact and lowering his voice while he said, “Mom, do you know what Rosie is to me?”  Rosie is Aaron’s special friend.  So I just stopped and I looked back into his blue eyes…..and asked him to tell me what Rosie is to him.  
“She talks to me and she agrees with me,” he began.  He proceeded to tell me that he and Rosie say things to each other, like when they went to Burger King, he said…..and Rosie pointed something out to him as they were leaving the restaurant.  He told me that his other friend, Shauna, doesn’t do that.  She doesn’t point things out to him like Rosie does, and she doesn’t ask for Aaron’s opinion like Rosie does.  Shauna is sweet and wonderful, but Rosie is……well, Rosie. 
Aaron continued trying to describe Rosie.  “She makes me feel great,” he said.  He spoke from his heart, not full of excitement but full of softness.  This whole thing was so unlike Aaron.  He wasn’t being loud or silly or using words he thinks are funny but aren’t.  He was sincere, and he was so normal.  Please don’t take that the wrong way, but Aaron rarely speaks like this.  I was just treasuring this moment and sitting there in amazement, hoping it would last awhile longer.
“Rosie and I,” he said, “we have a bond.”  There I sat, wondering what my face conveyed.  Then Aaron said, “Mom, what’s a bond?”  And then my face conveyed amusement as I laughed.  He was repeating what he had heard, but immediately showed that he didn’t really understand what on earth a bond is anyway.  He just knows that he and Rosie have one.  So once again I talked to him about special friendships, how sometimes we just click with someone, and that special bond is formed. 
“You know what?” he asked.  “I’m older than her and she still likes me!”  We laughed together this time and soon the moment was over.  Aaron had found my little plastic rooster that Mary Beth gave me.  It has special meaning and I keep it on my kitchen window sill above the sink.  Aaron had picked it up and was comparing the rooster’s feet to Godzilla’s feet……and soon was trying to sneak the rooster into his pocket so he could take it to his room, never to be seen again.
I told him no…..that the rooster was mine.  “That rooster is dumb for you but it’s cool for me, Mom!” he laughingly replied.  Yep, old Aaron is back.  Sincere, heartfelt conversation was over.  But I was still relishing that time, and enjoying the remainder of our game.
And you know what else I would have missed if I had not stopped for this time with Aaron?  I would have missed this.
 
See how Aaron arranges his cards in his discard piles?  Isn’t that so cool?  He laughed when I wanted to take a picture, and he was also quite proud that I thought this was important enough for me to want to photograph.  
Important enough to photograph…..and important enough to take the time to really see and to really listen.  I get tired, especially at night.  I want “me time” as much as anybody…..and I get plenty of that, trust me.  But last night I was once again reminded that it’s so worth it to stop……to focus on Aaron…..to listen and to absorb what this special son of mine is saying and thinking.
He teaches me……he delights me……he challenges me.  I need to accept it all……not to brush it off in the midst of my busy schedule or in my tiredness or frustration.  And when I do take the time, usually when it’s least convenient, is so often when I get those special blessings…..those glimpses into his heart, where he is real and sincere…..beyond all the gruff and the loudness.
God teaches me so much through Aaron….if I but take the time to listen.

Singing With Our Mother


My mother was raised in the little coal mining town of Welch, West Virginia.  Born in 1926, she was the last of six children born to Guy and Lillian Hollandsworth.  Grandpa was the principal of the school in Welch.  He and Grandma worked hard to raise their six children deep in those West Virginia mountains.  They instilled in them a love for God; a love for family; a love of culture; and a love of good music.  
Mom, fourth from the right on the front row
I loved hearing our mother talk about how she met my dad.  They met when Mom’s brother, Luther, married Dad’s sister, Mary.  Beth saw in Jack the sort of man she had never come across.  He was kind and thoughtful, a man of quality to whom she was drawn.  And as they became acquainted, they each learned something that helped seal their interest even further……they both loved classical music.  Dad was just a farm boy from Oakvale, West Virginia, who worked for the Norfolk and Western Railroad………and Mom, from a coal town deep in the mountains, was teaching Home Economics.  But quality music was important to them, so their mutual love for the same music was important as well.
Our home was full of music as we were being raised in Princeton, West Virginia.  It seemed that music was always playing on the old record player, and later the newer huge stereo cabinet in the living room.  Most of what we heard was classical, but Mom and Dad also loved the hit musicals.  I bet all five of us kids still know the words to the songs from Sound of Music, Carousel, South Pacific, and Oklahoma.  Christmas was full of beautiful and fun Christmas music.  I remember children’s records full of fun songs, too. 
Mom, on the far right, as part of the Laidley Hall Trio, 1946-47
Mom, fourth from the right on the front row
Mom didn’t just love to listen to music.  She also had a beautiful voice, and sang in choirs and madrigal groups during her high school and college years.  She was an accomplished soloist and sang in many area churches for revival services and other occasions.  A favorite song of hers…….her signature song, really……was “I’d Rather Have Jesus.”  This is the song she was singing in a little church during a revival service one night in the early 1950’s.  Jimmie Jones was preaching that night.  Mom stood up to sing, and God used the words of that song to pierce her heart.
 
I’d rather have Jesus than silver or gold;
I’d rather be His than have riches untold;
I’d rather have Jesus than houses or lands;
I’d rather be led by His nail-pierced hand
Refrain:
Than to be the king of a vast domain,
Or be held in sin’s dread sway;
I’d rather have Jesus than anything
This world affords today.
As Mom sang those words, she knew in her heart that she had never asked this Jesus into her heart to be her Savior.  She knew that she was standing before those people singing a lie with her beautiful voice.  She walked down the aisle that night during the invitation, and Preacher Jimmie led her to the Lord.  Dad had accepted Christ months earlier but hadn’t said much to Mom about it for fear of angering her.  Now they were united not only in marriage, and children, and their love of music…….but they were spiritually united in their love for the Lord that grew and grew over the following years.
Now our family had the completed element of being raised around God’s Word, and being active at Johnston Chapel Baptist Church where Preacher Jimmie was our pastor for all of our growing up years.  Now, too, were added beautiful hymns to the music that graced our home every day.  
All of us sang and soon we children were singing together for church.  I remember one Saturday that we even sang…..live!…….on our small town radio station.  We sang and Preacher Jimmie preached, and I have no idea how we sounded way back then.  We continued to sing as we got older, and were known as the King Sisters when John left.  And during all this time, Mom was still singing solos and blessing many with her pretty voice.
Many years have gone by since those days of early marriage and raising five children.  Dad went to heaven in December of 2008, during the season of Christmas carols and Christmas joy that Mom and Dad loved the most.  And now our mother has Alzheimer’s, lives in assisted living, and doesn’t know any of us five children or our spouses……or her grandchildren or great-grandchildren……or even her Jack, her husband…..Dad.  We can’t ask her for advice or ask her to tell us a familiar family story or ask her for a favorite family recipe.  All of that is gone.
Gary and I went home a few months ago.  Everyone was there except for Jimmy and Kathryn.  As we gathered at Jan’s house, near the end of our day with everyone, I suggested that we sing to Mom.  A friend of mine, Bev, had told me about singing to her mother who had Alzheimer’s and how her mother remembered the words……and it was their last real connection.
So we stood around Mom that evening at Jan’s and we sang “Great Is Thy Faithfulness.”  To our surprise and delight, Mom joined in.  She knew most of the words, and then to our complete surprise, she sang the descant at the end…….her voice still beautiful and sweet.  You can click on the link below to see the video of her singing that song.
We sang a few other hymns as well, and then we decided to see if we could make it through our family song…….Dad’s favorite song……”Tis So Sweet To Trust in Jesus.”  Again, Mom sang most of the words in her sweet voice.  And at the end, as you can hear in the below link, she tried to describe how special that song was.  She couldn’t put her finger on why it was special……she couldn’t remember exactly……and she couldn’t find the words……but she knew.  Deep inside she knew that this song was a very dear part of our family, and a dear part of her Jack……of Dad.
I’m so thankful that we sang with Mom that evening.  We were all blessed beyond measure for that time with her.  Her heart was happy as she sang.  What memories those songs stirred in all of us, including Mom. 
Memories of wonderful parents who taught us about the Lord…..who filled our hearts and our home with music……but more importantly, filled us all with love.  And over the years, as we’ve all experienced both joys and sorrows, we can fall back on the love they gave us and the Lord they made sure that we knew personally.  Many parts of our early life are gone…..and now the Mom we’ve always known is gone……but the hope we have in Christ will never be gone.  The certainty of heaven will never be gone, where we can sing together forever! 
Tomorrow is my mother’s birthday.  She will be 88 years old……and she won’t know that it’s her birthday…..or how old she is.  But as friends and family gather around her, I hope that she knows how much she is loved.  And I hope that she joins in as everyone sings “Happy Birthday!”  
I bet she will, with a smile on her happy face and a twinkle in those beautiful eyes. 
We love you, Mom!  Happy Birthday!
And thanks for showing us over the years that you really meant it when you sang, “I’d Rather Have Jesus.”  And that we needed to mean it, too.   

The Funny and The Sad


It’s been a mixture of funny and sad with Aaron over the past two days…..well, over the past 27 hours and 22 minutes, to be exact.  But who’s counting, right?  Oh……well, yes, Aaron does.  Count, that is.  So he would appreciate it if I would as well, thank you.  
Aaron burst in the door from the garage yesterday when he came home from his day group.  He saw me right there in the half bath/laundry room as he shot through the door.  Of course, he didn’t say hello or hi Mom or anything close to resembling a greeting.  Instead, just as he slammed the door and saw me folding laundry, he loudly said, “Mom!!  King Tut is a real person, right?!”
And so began our late afternoon and much of our evening, as well as this morning.  King Tut this and King Tut that.  Can you tell that he’s watching a movie called The Curse of King Tut’s Tomb?  I don’t recommend it.  It’s beyond lame……but it suits Aaron just fine, because King Tut comes alive and saves everyone from the monster.  The monster with wings. 
Which prompted Aaron to also ask, “You mean King Tut is a humaning being?  He’s not a monster with wings?” 
And this morning I had to watch a YouTube clip of this beyond lame movie.  I had to type Google Videos and then type The Curse of King Tut’s Tomb…..just right, because Aaron was standing over my shoulder, observing my every move.  As we scrolled down to find the right clip, Aaron saw it.  “YES!!!!  That’s it!!!!  It’s the 1:41!!!!”
Good grief, Aaron…..remember my ears close by.  And the 1:41, for you who don’t know or remember……..how could you NOT??!!…….is the length of the video.  Aaron remembers the length of video clips even better than he remembers the names.  Anyway, I endured the video clip for 1:41.  It’s pretty awful.  In fact, I think it’s under awful movie clips on YouTube, but Aaron would strongly disagree with that.
Tonight, he told Andrea on the phone about this classic movie and she told him that she would watch it with him the next time that she “comes over,” as Aaron says.  But then she added that we should make it a FAMILY movie night and all watch it together.  I may suggest that she find a new family.  Really, the movie is that awful.  That girl is in so much trouble.
Back to Aaron’s return home yesterday…. he also told me about teasing Ashley at his day group.  He seems to get great delight from teasing her, which isn’t usually a good thing with Aaron, as his teasing can be annoying and even a little mean.  The more fun HE is having, the less fun YOU are probably having.  I’ve been trying to determine if Ashley is the same Ashley he knew at a school here years ago.  I asked him yesterday what color hair Ashley has.
“She has the color of Goldilocks and the Three Bears!!” he happily said.  Of course, he can’t just say blond. 
 
On his way to bed later, as I fixed the percolator for the next morning, Aaron said he was going up to his room to get ready for bed.  He walked part-way through the family room and I heard him stop.   “Mom, is it going to rain tonight?” he asked.  This before-bed information is very important to Aaron. 
I told him that I wasn’t sure, but maybe later it would rain.  He took a couple more steps, out of my sight, and then I heard him stop again.  Pause.
“When is later?” he inquired. 
 Oh dear Aaron, you who must have an exact time for everything…..
I told him that I wasn’t sure of an exact time when later would occur, but that it just might rain…..sometime…..later.
Pause.
“Midnight?” he questioned.
When you’re in Rome…..and when you’re in Aaron’s world, do as Aaron does.  And thankfully, since I had recently looked at the radar, I could safely tell Aaron that it would not rain at midnight…..that it would rain sometime after midnight, if it rained at all……but I very carefully did not use the word “LATER” again.  Sigh.
And he was satisfied.
It was only a short time later, just after he had fallen asleep, that I heard him having a seizure in his sleep.  I stayed with him until it was over, and I prayed when I laid back down that he would not have a night full of seizures.  And he didn’t have another one……and I was so thankful……even as that little cloud of sadness hovered over my head.
We had more funny times this morning.  Aaron talked and talked about the The Curse of King Tut’s Tomb again, and of course we watched the YouTube clip.  He followed me out to the garden, where he talked more while I snipped okra off the stalks and picked a few tomatoes.  And where he breathlessly told me about Rosie eating some of the tomatoes I sent to Paradigm yesterday.
“Mom!!  Rosie ate tomatoes RAW!!”
He was so relieved when I told him that this is how we usually eat fresh tomatoes from the garden……and I learned that to him, eating them raw means that she didn’t wash them before eating them.  I already did that, I told him, and he was happy.
Then in the afternoon, while at the theater with his day group, he had another seizure…….a rare afternoon seizure.  He probably fell asleep in his chair in the dark, and then the seizure came.  Poor Aaron.  And worry and that hovering sadness was pushing the funny out of my sight.  
He was able to stay at his day group.  He called me and we talked about his seizure.  He was calm about it.  Later, I heard the door open when he got home, but he didn’t have the gusto of the day before.  He walked slowly across the kitchen and came downstairs to find me.  He was much more somber than yesterday as he walked over to me and told me that he didn’t feel very good because of his seizure.
“I guess I didn’t have much fun time in the theater because of that,” he flatly said.  
He made my heart hurt.  I agreed that it wasn’t much of a fun time for him, but that I was glad he was better now.  I was trying to soothe my own pain more than his.
“Yeah,” he said.  “I guess watching a movie today wasn’t very much fun.”
Poor Aaron, indeed.  He loves going to the movies but today he didn’t have much fun time there, for sure.  Yet it’s amazing how quickly he can bounce back…..how soon he was happy again, bending over and rubbing his hands together when I was talking to Andrea and he was trying to tell me what to tell her until I finally just let them talk……and the two of them talked the whole time Gary and I ate supper.  
Aaron is amazing in many different ways, but his ability to keep on going even when his day wasn’t much fun is a lesson for me every time.  And even more amazing is that even though he is the reason for my sadness at times, he can also turn right around and be the reason for my joy.  He can be so much fun!  
The funny and the sad, all wrapped up in Aaron.
A lot sure can happen in 27 hours and 22 minutes.

My Wormy Cucumber…..and Aaron


Last night was a seizure night for Aaron.  We are so thankful that he doesn’t have constant daily seizures like our friend’s son, Elijah, has.  I told Wendy this morning that I don’t know how she does it apart from God’s grace.  I know that each of us who know the Lord depend on His grace for the many circumstances that we face in this life.  Having a suffering child is tough.  When Aaron has seizures is when I feel most vulnerable emotionally.  His autism is high functioning, though in its own way debilitating, but he at least can function.  His autism makes him at times very frustrating and it causes him to be in trouble more than we like, both here at home and at his day group.  Or then he can also be very endearing and funny, even hilarious.
But his seizures……they make me sad.  They show me the seriousness of Epilepsy…..the danger.  I may be vulnerable emotionally on these days, but he is vulnerable physically.  And as his mother, that scares me….and makes my heart hurt. 
However, I know from experience over the years that I cannot dwell on the scary or on the negative, even when it comes to my son…..my first born.  Being aware is one thing.  Being defeated with constant worry is quite another.  And constant regret……that’s one thing that I very consciously pull my mind away from when it starts down that path.  I would love for Aaron to have a normal life, a job, a wife and children…but he doesn’t and he probably never will.  Living with regret over those issues only pulls me down and doesn’t do anything to help Aaron.  Plus it’s not honoring to God, Who wants me to trust Him in all things.  That means ALL.  Even Aaron, my son, and my hurt over his pain and difficulties. 
 
Aaron slowly made it downstairs this morning after his three seizures.  He tried to stay up and awake but as is typical for him, he laid back down on the couch and fell promptly asleep.  I covered him with his favorite blanket……the animal print blanket…..and he slept deeply until he had another large seizure.  Now he is awake off and on, talking about wanting his coffee that he missed this morning……will it still be hot…….when can he have it……worried that he won’t get to drink it……typical Aaron.
 
Earlier, while he slept and with me being unable to leave this area of the house for fear of another seizure, I stood at the kitchen sink.  I was washing the produce that I had gathered in the garden yesterday evening before dark.  Some tomatoes…..okra…..a red pepper……one pear that I was able to reach from our pear tree……and a few stray cucumbers.  On one of the cucumbers I saw the unmistakable signs of worms.  The brown, crusty spots on the outside of the cucumber were my clue, so I grabbed a paring knife and cut into the peel.  Yep, there it was…..a yucky worm……and then another nearby.  It was tempting to just throw the whole cucumber away, but I’m pretty thrifty about my garden produce that we’ve worked hard to raise.  There was still plenty of good left in that cucumber, so I washed the remainder and put it with the other healthy produce.  Aaron loves cucumbers, so he can eat it later.
 
This might sound strange, but Aaron’s a lot like that wormy cucumber.  He has his issues…..his “worms”……..that disrupt his life.  The autism….the Epilepsy……they have completely changed his life from what we thought it would be.  When placed beside his sister and brother, we can see a stark contrast.  Andrea, a scientist and geneticist in a major lab……and Andrew, working on a professional NHRA pit crew.  Their lives are dreams come true for both of them.  We love hearing about their work, even when we don’t understand half of it.  It’s exciting and fulfilling for them.
Aaron is like that cucumber, yes.  He has some chunks removed……some expectations that we had for him that had to be removed.  But he has amazing value if we but stop and look.  God does NOT create mistakes.  Aaron has tremendous worth.  He draws us to God in ways we probably never would have been drawn otherwise.  He keeps us humble.  Oh, does he ever!!  He keeps us at times bowed down with worry or frustration or embarrassment.  But listen to the verse God gave me this morning:
“But You, O Lord, are a shield about me; my glory, and the lifter of my head.”  (Psalm 3:3)
I love how God gives me what I need, when I need it, from His Word.  He lifts my head to look not only up to Him, but to look at Aaron with new eyes……eyes of faith and trust in the God Who loves Aaron and loves us.  God has a plan for Aaron that is every bit as important and amazing as the plan He has for Andrea and Andrew.  We just don’t always measure Aaron’s value that way, but God does.  And He reminds me on these days that I need to as well.
Aaron……my wormy cucumber……just in this little area of my house, God has once again spoken to my heart.  
Friend who is suffering today, never doubt God’s plan and His love for you.  Let Him be the lifter of your tired head.  He does care…..He does have a plan……for all of us.
Including my wormy Aaron.  My perfect Aaron, with lots of good in him that God is using. 

Caterpillars and Butterflies


This morning I read another small section of Elisabeth Elliott’s book Keep a Quiet Heart.  In the chapter entitled There Are No Accidents, Elisabeth talks about interviewing Judy Squier.  Judy was born with no legs, so Elisabeth asked Judy to write a letter to the parents of a little boy born without arms or legs.  I quote from part of the letter that Judy wrote to these parents:
“’What the caterpillar calls the end of the world, the Creator calls a butterfly.’  As humanity we see only the imperfect, underside of God’s tapestry of our lives.  What we judge to be ‘tragic – the most dreaded thing that could happen,’ I expect we’ll one day see as the awesome reason for the beauty and uniqueness of our life and our family.”
She goes on…….the whole section is excellent and struck a deep chord in my heart.  But my mind has been on that caterpillar and butterfly all day.  You see, last November I wrote a blog about how Aaron found a butterfly and how he wanted me to hold it.  It was a special moment for me that taught me such a sweet lesson.  Today I’m thinking of other aspects of that butterfly……who was first a caterpillar.
 
I’m thinking of the day that we first heard Aaron’s diagnosis of Epilepsy.  I remember how shattered I felt as I sat at my desk that night in Germany.  Our little blond headed blue eyed son had what?  Epilepsy?  What does it mean?  What WOULD it mean?  And I cried, deep sobs of pain and acceptance.  Nine years later……another doctor, another place, yet another diagnosis.  Autism?  Asperger’s Syndrome?  What does it mean?  What WOULD it mean?  And again, when the children were asleep, I cried deep sobs of more pain and more acceptance.
Pain and acceptance have been our familiar companions all along this journey with Aaron.  I know that many other parents feels this pain, some more acutely and more severely than we ever will.  The pain of medical tests….the pain of medicines for this and more medicines for that….the pain of hospitals…….the pain of IEP’s in school…..the pain of moving and having to introduce our child all over again in our new world…..the pain of his questions…..the pain of peer rejection……the pain of trying to understand what makes him tick and what just ticks him off, and why……the pain of my guilt when I blow it and I erupt along with Aaron…..the pain of questioning God……
Pain comes naturally.  Acceptance is a decision that I make.  Acceptance is usually slower.  It certainly has been for me.  Maybe he’ll get all better with time.  Maybe the seizures will go away after puberty.  Maybe this new drug will do the trick.  Maybe he can have surgery.  Maybe the VNS will kick in.  Maybe it’s not really as serious as all that.  Maybe the autism will improve with this diet.  Maybe those guys will be Aaron’s friend.  Maybe Aaron won’t move so much and talk so much during church today.  Maybe he won’t be grouchy when his bus comes to pick him up today.  Maybe he’ll just love his day group.  Maybe he can hold a job one day and be like everyone else.  Most of the maybes don’t happen…….and acceptance slowly sinks in.  Reality of life with Aaron has been slow going……very slow going.
But it’s not the end of the world.  It may the end of the world as we know it as far as our hopes for Aaron in certain areas……….but just like that caterpillar, there is beauty in this life that God has given us.  “What the caterpillar calls the end of the world, the Creator calls a butterfly.”  I held a butterfly that day last fall as I stood outside with Aaron, and I hold a butterfly in my life as I look at Aaron.  That’s because God is sovereign, and He has a plan for Aaron and a plan for our life with Aaron.  It’s a plan of beauty, even when I can’t see it as such.  
 
I have to hold on to that truth on the bad days, the sad days, the worried days, the heart-rending days of this life.  Oh, we have laughter and delight with Aaron but underneath it all are the concerns and the frustrations and the weight of always thinking about our special son.  And I deeply feel the weight of so many other moms……friends that I love and friends that I hurt for as well as they fight this fight and live this life for their special children.  
I want to tell them that God is weaving a beautiful tapestry of their lives.  They don’t feel it or see it any more than I do on many days, but God truly is a God of purpose and beauty.  So we lift each other up, we cry together, we pray for each other, we try to encourage one another……and we trust our sovereign Heavenly Father even when He doesn’t seem to answer our prayers in the way we want.
Acceptance…..of Who God is…..and how much He loves me and He loves Gary, and Andrea and Andrew…..and especially our special Aaron.  I want to hug my other moms of special children…..Wendy, Goldie, Shikara, Cheryl, Trish, Louise, and so many others.  I want to say that I may not have great words of wisdom, but I do have the truth….as do you…..that God is in charge of making caterpillars into butterflies.  
And He can…..He will………bring beauty into and out of our lives with our special children. 

Thanks to Aaron……


It’s been a week since I’ve written anything about Aaron.  It’s not because he hasn’t been active……talking, arguing, laughing, eating…..plenty of eating.  Plenty of all the above, actually.  Here are some highlights of our week:
Conflict and Forgiveness:
Aaron came home last Friday with some anger.  He had a situation with someone and it wasn’t pleasant.  He was animated, bending over and rubbing his hands together as he told me what happened.  Oh boy, here we go.  He quickly conveyed the same story to Gary when he got home, but Gary and I quickly left to meet friends for dinner so there was no resolution at that moment.  It was a topic of conversation all that weekend, which is always the case.  Thankfully, things were made right at his day group.  We appreciate the staff there that care for Aaron and helped him work through it all.  Barb said that Aaron actually took the hands of the person involved and said he was sorry.  Barb was shocked and pleased at that.  I was extremely shocked and wondered if we were talking about our Aaron or someone else!  Wonders never cease……especially with Aaron!  He was so happy to rush in the door that day and tell me what happened.  “Mom!  Me and _______ made up!”   And guess what he said that was so curious?  “But it’s kind of scary to be made up with ______.”  Interesting.  I think he’s not sure that he can keep from getting frustrated again, but that’s a guess…..which is sometimes the best we do to figure out Aaron and his thinking.
Laughter:
We were watching Wheel of Fortune one night, and one of the contestants bought a vowel….an ‘A.’  Aaron yelled, “A!!  As in E I E I O!!”  He sang the E I E I O part like we do in the Old McDonald song.  It was too funny.  But I couldn’t help myself, so I said, “Um, Aaron……E I E I O doesn’t have an A.”  “What?” he replied.  So I repeated, “E I E I O doesn’t have an ‘A’ in it.”   He just looked at me, then cocked his head and stared into space for a few seconds.  “Oh,” he flatly replied.  Two nights later someone bought an ‘O.’  “O!!” Aaron yelled.  “As in (and he sang again), E I E I O!!”  I laughed and he laughed because E I E I O does have an ‘O.’ And all is well with the world. 
An Annoying Ear:
Aaron started complaining one night during Wheel of Fortune that his ear was stopped up and that he couldn’t hear well.  I told him that maybe we need to take him in and have his ears cleaned.  “No!” he loudly replied.  Soon after, he yawned and then happily said, “There!  My ear unpopped!”  The next day it was, “Since my ear stopped up, I have diarrhea.”  I reminded him to check his feeding frenzy list from that day before he blamed his ear.   And the next day:  “When I talk, I can hear my voice in my ear.  I can only hear the voice of me in my stopped up ear.”  Gary and I exchanged humorous glances at that comment, unknown to Aaron.  His ear is a major concern of his now and we may need to have it checked, but we’ve learned that with Aaron it’s best to wait awhile and see how it all works out……because he has a little hypochondria at times like this.  
Wonder:
I went in Aaron’s bedroom to say goodnight.  He was propped up in bed, reading his Handy History Answer Book.  I was nearly ready to leave the room after our goodnight when Aaron said, “Mom, look.  Michelangelo made a bad statue.”   I asked why it was bad, knowing full well the answer.  “Look,” Aaron answered as he held the book for me to see.  “So what makes it bad?” I asked again.   “It doesn’t have clothes on.  That’s strange,” Aaron said as he held it out still for me to see.  There was Michaelangelo’s David in all his glory…..and me trying to explain it to Aaron.  I was glad to say good night and shut the door.
Wonder #2:
On Wednesday, Aaron went with his group to All Star Sports.  When he got home, as he was showing me the toy rifle he picked up somewhere and brought home, and as I was telling him he needed to return it…..good grief!……I saw something protruding out of his pocket.  I asked him what was in his pocket and he said, “Oh,”……as he reached in his pocket and pulled out the something.  It was sporks.  Sporks he had nabbed off the food counter at All Star Sports.  23 Sporks.  Really?  23 Sporks?  Really.  I counted them.  23.
Wonder #3:
Aaron was very excited to run in the house the other day and hold out his hand to show me something as I heard Gary out in the garage trying to finish telling Aaron to bring it back outside.  IT was one of our caterpillars that is eating up our pecan trees.  Aaron was intrigued by IT and really wanted to show IT to me, so I waited to tell him to get rid of IT until I had oohed and aahed over IT with fake enthusiasm.  Aaron loves bugs, just as if he was still 6 years old.  I didn’t want to dampen his joy, but I was very glad when he took IT back outside. 
 
Fun:
Yesterday Aaron was sleeping a little late, so I gingerly opened his door to find him sitting on his bed…….writing in his “Time I Go To Bed and Time I Get Up” notebook.  He wrote down 9:03, and looked at me with bleary eyes.  He was very tired, he said, and even after his shower and coffee I opened my bedroom door to find this.
 
So I decided to have that fun day with Aaron that I’ve told him we would someday have.  We went to the new Sam’s that was opening yesterday.  Aaron got happy real quick, and wasn’t the least bit tired. 
 
 Well, it was worth it to have fun……to see his smile……and to laugh as he listened to the Mariachi band playing fun songs.  He complained that they were too loud, while I loved every minute and wanted more. 
One More Laugh:
This last laugh was this morning, after Aaron drank his coffee and we were taking his cups downstairs.  I guess he got a few coffee grounds in his cup.   “Mom, that coffee you gave me still had seeds in it……like specky seeds.”  
I smiled.  And I wish he could get those specky coffee seeds out with a spork.  We have a few.
Thanks to Aaron, we have sporks.  And a mostly good week to boot. 

Good Job, Aaron!


I was so proud of Aaron this morning.  He’s on a new medicine and it’s one that has hit him full force with sleepiness.  He’s gone from usually getting up in the morning between 5:00 and 6:00 to sleeping until sometimes after 8:00.  He would be much more precise than that with the time, as you know, but I won’t tell him that I wasn’t.  He came downstairs this morning a little before 8:00, barely able to keep his eyes open and asking if he really had to go to his day group.  I sensed a rough morning ahead.
He took his pills and I carried his coffee upstairs, keeping the conversation light and free of conflict.  Conflict can come easily enough when Aaron is tired and not feeling well.  My heart went out to him and I wanted to just say that he could stay at home, but I knew better.  He sometimes snaps out of these very tired moments and so I wanted to give that possibility a chance.  Plus today is his last day for the week since tomorrow is a holiday…….and today is mall day, which he usually enjoys.  He enjoys it because of all the food choices there, but at least he goes and has fun.  
Today I’m leaving for a trip to Houston to spend the long weekend with Andrea.  I had lots to do this morning, so I left Aaron with his hopeful thoughts of getting to stay home as I headed for the garden.  Finally finishing there, I went upstairs to shower.  As I walked up the stairs I heard a noise.  There was Aaron, sprawled across his bed, snoring to beat the band.  I was pretty certain then that Paradigm would be a no-go today.
Later, to my surprise, Aaron walked in my room and asked again if he had to go to Paradigm.  He was more awake now and still not in a bad mood.  I told him to shower, which he agreed to do, and as he left the room he reminded me that today was mall day for Paradigm……if he HAD to go.  Here WE go, I thought.  But still the eruption didn’t occur.  He was mulling his options, though, but not hateful….yet.
Soon I heard him thump up the hall with purpose………and I was soon to discover what that purpose was.   He looked at me and hopefully asked, “Mom, today since we’re going to the mall, can I have extra money?”  
“How much do you need for pizza?” I asked.
The look on his face was priceless as he quickly formulated his response.  “Well,” he slowly said, “sometimes it’s 15.”
We stood there staring at each other as I enjoyed the look on his face, and as he hoped I would believe him.  Then I laughed, and laughed some more………and he didn’t even get angry at my laughter as he sometimes does.  He knew that I wasn’t buying the story of pizza that’s sometimes 15, so he turned and walked away as I chuckled some more.
He was very happy when Gary, who is off today, offered to take him to meet his group.  Having Dad take him is a treat!  He loves time with Gary, so before they left Gary showed him the caterpillars in our tree.
 
Then they climbed in the truck and I got one last goodbye hug.  I told him that I would tell Andrea he said hi and he gave his low laugh…..meaning that he agreed with my doing that, but he would never ever offer that gesture himself.  
 
Every day with Aaron is both full of sameness and yet full of diversity.  We never know what mood he will be in or how he’ll be feeling or what he’ll say.  We definitely never know what all he’ll say!  Like yesterday on the way to Paradigm, when we passed by the sign outside of Dillon’s that announced the fact that they have barbecued ribs for sale.  There hung the ribs sign, with a wooden pig hanging on it. 
And Aaron, who never misses anything, said, “Mom, are ribs really made of pig?”
Yep, Aaron…..those particular ribs are really made of pig.
And many of my days are really made much more fun and funny because they’re made of life with Aaron.  Other days…..not so much.  But we take them both because he is ours and he is what God made him to be.
See you Sunday, Aaron.   You and Dad have fun while I’m gone!

Mixed Emotions


Gary and I returned home last Monday after being gone for a week of vacation.  That’s a long time to leave Aaron and our Great Dane, Jackson, with caregivers.  Aaron loves the times that we leave because he gets to have others here with him, which means a change of pace for him.  He gets to eat out more, which he doesn’t need but which he does love.  He has someone to watch movies with him at home from his movie collection or a movie that they rent.  He and his caregivers might go on walks or go shopping……just normal things, really, but to Aaron they are more fun when shared with someone different.  
More fun up to a point…..and I think Aaron reached that point on Friday, and again on Monday at his day group.  He acted out a lot, being verbal and very angry.  Gary and I were actually dreading coming home, thinking we would have a rude awakening after such a wonderful time with family and with each other.  But Aaron was very happy to see us.  He called us several times every day that we were gone, but having us home was even better.  
How did he show that it was better?  Well, first of all, he gave us hugs!!  That was awesome!  And not just one hug, but several hugs spread out over the evening.  He was affectionate, on his terms, and it was sweet to experience.  
He also followed us all around, talking and talking.  He had happy talk of his time with Katie and then with Steven over the weekend.  He talked about what he ate, and where they went, and the movies they watched, and everything in between.  He followed us all over the house, and then followed us outside when we went to check the garden.  The dirt was a little soft from the recent rains, but not muddy, so I walked in to take a look at everything.  
Of course, Aaron followed, never missing a beat in his monologue.  His movie of the moment was The Blob, so most of what he said was Blob related.  He kept asking me questions about the Blob for which I had no answers, like exactly what is the Blob.  Finally he decided to analyze the Blob himself. 
“The Blob is just the size of water,” he said…..and I agreed without telling him that water doesn’t really have a size.  Instead I relished the way that Aaron sees the world, even the Blob.  We were both happy to move on to other things as we walked around the garden and I showed him some beans, as well as some zucchini and summer squash.  Aaron noticed the soft soil, though, as he notices everything.  “Mom, this sand is sinkable!” he exclaimed as he walked around.  
He wasn’t as chipper as the evening wore on.  It takes awhile to get things back to normal when you’ve been gone that long, and Aaron was ready for normal right then.   I had asked Aaron several questions about different matters, knowing that we have to be slow and careful with our questioning.  Finally, as we were getting his room ready for him to go to bed, I remembered that I needed to get the monitor out of Andrew’s room where Steven had stayed.  At first I didn’t see it on the other side of the bed, so without thinking I asked Aaron where the monitor was.
“I hate today!” he angrily answered.  “Things have been going on like, ‘Where’s your monitor?!!’”
I instantly knew that if Aaron was able to sit down and have a heart-to-heart with us, he would have said, “Mom and Dad, I’m really tired of you guys being gone.  I’m tired of things being so different and out of place.”
But no, all Aaron could do was erupt and say what he did………and I was thankful that right then I found the monitor and was able to be calm, so that Aaron could calm down.  He followed me to my bedroom even after we had successfully gone through his nighttime ritual……..blinds closed, blanket on the bed just right, his fish lamp turned off, the bright digital weather station clock dimmed, clothes for tomorrow set out, overhead light turned off, bedside lamp turned on……
But yet he followed me, talking, and asking me to come back to his room.  I was tired.  Aaron didn’t care.  I walked into his room, telling him I was going to bed, but he said, “Wait!!  I haven’t told you this.  I was reading in my Handy History Answer Book about writing.  First there were hieroglyphics, papyrus, then Guttenburg……and what else?  Chinese!  There was Chinese paper!”  
I really didn’t care one whit about any of this writing or paper business at 10:30 on the night we had just returned from vacation.  I really knew I wouldn’t care one whit about hieroglyphics or papyrus on any other night, either.  But wanting to make Aaron feel like what he said was important and that I was listening, I commented, “The Chinese also made the first firecrackers.”
He looked blandly at me and then flatly said, “I knew that.”
And so much for that, I thought.
Our week of re-entry into our real life with Aaron has had its ups and downs for sure.  Aaron has changed a lot over the past year.  He’s not always fun, funny Aaron.  He never has always been fun or funny, but he’s more volatile now than he used to be.  He has more anger now than he used to have.  Age?  Medicines?  Influences?  We don’t really know.
Gary and I have taken three trips recently, and it’s been so nice on several levels.  We realize how refreshing it is to get away……to be a couple……to have freedom to enjoy what we want to do……to enjoy our other children without Aaron interruptions.  Does that sound awful? 
I watched Aaron walking in front of me the other morning as we left Dillon’s.  There went Aaron, his bag of cheddar pasta salad and his croissants in hand.  He was large and in charge, so typical of him.  I realize what a large part he plays in Gary’s and my life.  Some positive…..some negative. 
 
And I read an article this week, written by a dear mother of a child with special needs.  Her child, a girl, is still young and is very sweet………or else this mother chose on this day to just write about the sweet.  After reading that article, I wanted that little girl to come live with me!  This mother was talking about never wanting her daughter to leave……never wanting to be without that sweet little girl.
I look at Aaron, like this evening on another trip to Dillon’s.  His passing gas noises as we checked out, his incessant loud talking, his whistles as we leave the store………where he tells me once again that at least he wasn’t making the farting noises.  How many times have I heard that?  And how many times has he heard me tell him to stop?  I see people look at Aaron, and it’s not like looking at a sweet little special needs girl who smiles at them and makes them feel warm all over.  Large Aaron is looked at with curiosity, to say the least…….especially when that gassy noise passes his lips………..at least I hope people know it came from his lips.
Oh well.  My mixed emotions are normal, I know.  I love Aaron and I know that he is ours to raise.  Ups and downs, good and bad, demanding and pleasing……it’s all part of this life.  God gives grace, and I know He will give direction to Gary and I as we face Aaron’s future, and ours.  
And if I had not had Aaron with me tonight, after I turned down his request to go to Sonic, I would not have heard him say, “So why did you say that Sonic is more fatfull?”
He didn’t see me smile, and he didn’t know how delightful yet another saying of his was to me.  Just like he doesn’t see my heart and know how much I love him…..even when I don’t exactly like him. 
And here’s what he said last night as I walked into his room just before bed.  He was finishing a movie, and those of you who know Aaron know that Aaron finishes a movie by watching the credits and everything else that scrolls down that screen….to the very bitter end, when the screen is either dark or goes back to the home screen.  Every.  Single.  Word.  He watches it.
“That was a short movie at the ending,” he said.
“The movie was short?” I asked for clarification.
“No,” he answered.  “The rest was long.  Just the ending was short.”
And I’m left to ponder what he just said, to realize its brilliance in an autistic kind of way, and to laugh…….behind his back, of course.
See what I would miss if not for Aaron?

I Think I Should Know You


Today is my birthday.  I’ve been enjoying special messages and phone calls and cards and gifts.  It’s wonderful to be remembered on this special day, even though I don’t expect all that kind attention.  But on this one day, this day of my birth, it really is nice to know that I am thought about and loved.  
I’ve heard from friends, some old and some new…….even some that I have never physically met.  Facebook has opened up some friendships with people that I feel like I know well but have actually never seen face to face.  I’ve had messages from friends that I have known from all the different places that we lived during our military career.  Of course, I’ve also heard from family in various ways today. 
The person I have not heard from today, and that I know I will not hear from at all on this special day, is the woman who is responsible for this day of my birth.  My mother.  I no longer expect a card from her, or a gift, or even a call.  The woman who gave birth to me no longer even remembers that day years ago that she came in from mowing the lawn while Dad was at work, and ended up in labor at our local hospital.  Not only does Mom not remember that day, she no longer remembers me.
Gary and I went home to West Virginia last week for a brief visit.  It had been far too long since we had been home to see family.  It was past time to go.   And it was also past time for my mother, who has Alzheimer’s.  I knew from what family said that Mom wouldn’t know me.  To experience that reality, though, is far different from just hearing about it.
Jeanie, my sister-in-law, took Gary and I to see mother at her assisted living home.  She lives in such a beautiful setting in those West Virginia mountains.  We’re all thankful for the good care she receives there and for how happy she has been……she and her precious cat, Princess.
We walked in to her apartment with Jeanie just as Mom was coming out of her bedroom, pushing her walker in front of her.  Mom realized that somehow she knew Jeanie, although she doesn’t really know how she knows Jeanie or who Jeanie is or what her name is.  But as for me and Gary…….there was hardly a glance in our direction, for Mom had other things on her mind as soon as she saw Jeanie’s familiar face.  She and Jeanie talked for a minute, and went to check on Mom’s concerns, with still no notice of Gary and me. 
When they returned to the living room, I went over to Mom but still she didn’t have any reaction to my being there.  No hello…..no “How are you?”………no “It’s so good to see you.”……..no hug…….no emotion at all.  And certainly no recognition.  I patted her shoulder, wondering if I should hug her, and still she hardly acknowledged me.  
Jeanie and I sat on the couch, Gary sat on the recliner, and Mom sat in her chair with the ottoman in front where she could lift her legs, her feet somewhat swollen.  It was then that Mom seemed to realize that we were there and that she didn’t know who we were.  I felt strange, as if I had entered the home of a casual acquaintance or was visiting a shut-in for church or something.  I didn’t really feel like I was sitting with my mother whom I hadn’t seen in way too long.  It was the first time in my life that my mother had not seemed glad to see me.  There was no rudeness, just distance and unfamiliarity.  
Mom was so polite, so gracious to these people that she didn’t know.  Again that feeling of unfamiliarity hung over the room.  Here sat the woman that I had known for my entire life, who loved me like no other…..like a mother loves her child………yet who at this moment was puzzling over who we were and why we were there.  
She talked about her concerns over her colitis issues, although she doesn’t understand that it’s colitis.  To her this is new and serious and has never happened before until recently, and so Jeanie kept assuring her that Dr. Pam knew all about it and that there was no cause for alarm.  I listened to Mom as she tried to talk about other things as well, seeing that many words were lost to her.  Common words like window or cat or bed.  She struggled to express her thoughts in every area because the words escaped her, and I could tell that this frustrated her.  She knows that she doesn’t know, to some extent, but the ability to bring up the correct words is largely gone.  
And there was still the matter of this strange couple sitting in her living room, smiling and talking as if we knew her.  Mom would stop and shake her head, and then say, “You just seem so familiar.  Now who are you?”  
“I’m Patty, your daughter,” I’d hear myself telling her.  Telling my mother that I was her daughter…….how odd.  I was prepared for this.  I wasn’t really surprised, but still that feeling of unfamiliarity was hanging over the room like an unwelcome presence.  It dawned on me as we repeated the introductions over and over that what I wasn’t prepared for, totally, was that when we told her who we were……….when I was identified as her daughter and Gary as my husband…….that she basically showed no joy at that revelation.  Again, she was polite and she smiled and even showed some surprise……but she didn’t show the joy that a mother would show at seeing her long absent daughter.  The connection to that emotion was gone.  Again, unfamiliarity.
“Your voices just sound like someone I should know,” she said several times as we talked.  And she would again shake her head, trying to piece together in her mind what she very vaguely remembered but what was mostly lost.  She was especially fascinated with Gary, more so than with me, and this made us smile. 
“You’re so tall and so handsome,” she said to this new man in her living room.  “Now who do you belong to?” she asked him.  Gary would point to me as his wife, and Mom would look at me and say, “So you’re his wife?”  I laughed and wondered why she was surprised.  She wanted to know, over and over, if Gary worked.   “What is it you do?” she would ask.  And over and over, in various ways, he tried to answer her question as simply as possible.  
Later, as we got up to leave, I hugged and kissed this dear woman who is my mother…….though she didn’t know that she is my mother.  That evening, we picked her up for church.  Jeanie had asked me to curl Mom’s hair.  Mom sat in her chair as I carefully rolled her fine, baby-soft hair around the hot curling iron……so fearful of burning her.  I thought of how many times this dear woman had no doubt curled and cut and combed my hair.  Now here I was, doing the same for her…….except she had no idea who this nice woman was who was fixing her hair.  It was a sweet time, mixed with the bittersweet.  My mother and I…………the once cared-for now doing the caring.  
We walked into the church foyer, Mom rolling her walker in front of her.  Her body is more stooped and frail now, which makes her even shorter than she always was.  She motioned for me to lean down close so that she could say something to me.  She pointed to John and said, “Look at that one.  I think I should know him.”  I just smiled as I told her that that one was John…….her son.   The preacher.  And she was surprised and she smiled at that news……….as she has now for months when she is once again told that the preacher is her son.  
John later motioned for me to come over.  He told me that Mom had come over to him, pointed to me, and said to John, “Look at that one.  I think I should know her.”  So we laughed.  Poor Mom.  That one……and that one……and that one.  Who are all these people that I think I should know?  The familiar is now so unfamiliar, yet she is aware that she should know.  
 
The next day we had a family gathering at Bob and Jan’s house.  It was a wonderful time of talking and laughter, of catching up with each other and enjoying time together.  Mom still asked who that one was or who that other one was, but eventually she just settled in to enjoying the commotion and the conversation.  As the day wore on, I came to the conclusion that Mom doesn’t really even know what the word “son” or “daughter” or “grandchild” means.  I don’t believe the relationship those words conveys really registers with her anymore.  
She, in typical Mom fashion despite her lagging mind, called a little family meeting in order to talk to us about her colitis concerns………though she didn’t refer to it as that.  She just told us that this worries her and she thinks it might be the end of her, but then she showed that spirit she’s always had as she firmly said, “But I’m not going to let it get me down!”  That’s our mother!
We sang hymns, which I want to write more about in another blog.  It was incredibly sweet and touching to all of us.  And before I knew it, I was hugging my mother good-bye and kissing her soft cheek.  She had no clue whom she was kissing or why, but she welcomed the love and she returned it to this woman that she no longer knows.  And she once again noticed Gary before she left to return to her apartment…….that tall, handsome man.  “Now, are you married?” she asked one more time.  We think Mom has her eye on Gary!
My dear little sweet mother.  She doesn’t remember Dad.  At least she is not grieving his death anymore.  None of us can change this disease of Alzheimer’s or the sad effect it has had on her.  She is lively, yet vacant.  She is kind, yet reserved.  She is talkative, yet clueless.  She is aware, yet at a total loss. 
John and I talked on Wednesday night.  He said that Mom is gone.  Yes, the mother that we’ve known and loved is indeed gone.  What made Mom our Mom is forever gone.  We love and honor this dear woman that is in our lives now, and we remember her as Mom.  But she is no longer in that role in our lives.  
Mom said it well, too, when we were visiting her in her apartment.  She was talking about her physical worries, and she said, “I just don’t know why this is all happening……but I know I’m going to a better place.”
John has said that he sees evidence of the Lord in Mom’s life……..of the work of the Holy Spirit……..even when she’s not aware of it.  I saw it then, in this truth that Mom spoke.  Such a blessing!  “I know I’m going to a better place.”  
We have hope, despite the ravages of Alzheimer’s.  And someday, in that better place that Mom talked about, that unfamiliar feeling will be gone……..forever!…….to be replaced with healing and wholeness and love. 
She’ll know us all.  That one…..and that one…..and that one, too. 

What’s So Best


I haven’t been doing much writing lately.  Part of it is that I’ve been very busy.  Gary and I traveled to Ft. Worth for Andrea’s graduation, and then to Topeka to watch Andrew in an NHRA race.  But I’ll admit that another reason I haven’t been saying a lot is that Aaron has taken a lot out of me, and of Gary, as well.  He’s been extra grouchy for a few weeks, and so I haven’t had the energy or the desire to sit down and write. 
He came in the room where I do my quiet time early one morning.  “Are you ready for a good day today, Aaron?” I brightly asked. 
 
“No,” he flatly answered as he turned and walked away.  And that is just how it’s been lately.   It seems that he’s just decided not to have good days. 
Why has he been grouchy?  If only we knew the answer……   Is it medicine related?   One of his new seizure drugs can have irritability as a side effect.  Aaron wrote the book on being irritable, trust me, so I was alarmed when I heard about that possible result of taking this drug. 
Is it seizure related?  He had a seizure episode this past week and since then has been markedly better.  Did the seizures rearrange things in that brain of his and calm him down?  Who knows?
Or is his grouchiness game related?  Since we let him have an old Star Wars game to play again, several weeks ago, his anger episodes have increased.  We can’t help but think it’s partly related to that, but how to get the game back has been an issue.   Then the most amazing thing happened.  When we got back from Topeka, Aaron told Gary that his game wasn’t working right.  Gary sat down to have a look and found that the only thing wrong is that the hologram image in one part of the game was messed up.  The image appears and the game works right, but the image has changed some and most of all…….Aaron can’t see the eyes of the hologram.  To Aaron, this is beyond unacceptable.  If he can’t see the eyes, he refuses to play the game.  He handed the game to Gary when he saw that Gary couldn’t fix it, and that was that.  No more game.  What a tremendous blessing!!
While Aaron was in his prolonged grouchiness he broke some things.  Aaron usually breaks things that are important to him.  In addition to a few items in his room that got banged up, he also broke his watch and his glasses.  The glasses, of course, were the worst.  He’s been wearing an old pair for several weeks as we hope to teach him a lesson.  And he’s not had a watch on his wrist for awhile now.   Will this teach him a lesson?  That’s hard to tell, but we keep trying.  Even with something like autism, we think it’s important to keep trying to reinforce positive behaviors.  And there are some days that I wonder who needs that reinforcement more……Aaron or me.
He was showing improvement last week, slowly, but still had a morning when he was not wanting to go to his day group.  As we pulled up beside his ride in the Quik Trip parking lot, he got out of the van and voiced his anger at me for making him come.  Then he took off for the store instead of getting in the other van.  He walked all the way across the parking lot very slowly, head down and looking as if the weight of the world was on his shoulders.  It was a little funny and a little sad and a lot frustrating.  I have no idea what people all around there thought.  It’s probably good that I don’t know.
Yet that afternoon Aaron bounded in the door after his day group, very excited to tell me about the barbecue in the park that he had gone to that afternoon.  “Mom!  Guess what?  At that grill thing I ate a LOT of hamburgers!!”  I asked him how many he ate and he breathlessly replied, “FIVE!!”  
“Man!!” he continued.  “You can guess I’m stuffed!!”  
And that night, or early morning, he had his seizures and was out of commission for most of that day.  But the next day, Friday, he was happy and was like our old Aaron.  He was bright and funny and wanted to talk a lot.  Even when I went out to the garden for an hour, I looked up to see Aaron coming outside.  The grass was damp, so he just walked to the end of the brick walkway and sat down, where he could still talk and talk to me.  This did my heart as much good as I think it did to Aaron’s.
 
He had a nice weekend, too, alternating between another game he’s playing and videos he’s watching and going outside and watching taped shows and Wheel of Fortune and even a little racing.  Gary and I also took him to Wal-Mart, where he couldn’t pass up the music display with the buttons that said, “Push”……….because if the button says push, then Aaron will push it, and love every single push.  He also got to pick out a new watch, paid for with his own Christmas money, and is happily wearing it pushed up his arm the way he likes it.  
 
Aaron’s been watching a movie that I don’t like.  He came into the kitchen on Sunday and found me watching a race clip on my notebook.  He immediately started asking me to watch a clip of his movie, so I suggested that he watch some racing videos….knowing that he wouldn’t want to do that and so I could make my point.  
“You don’t enjoy racing and I don’t enjoy your movie,” I reminded him.
“If I enjoy that,” he asked, “then will you watch my movie?”  
   
I laughed and he continued.  “Can I bargain you?” he excitedly asked. 
There’s Aaron, expressing himself in that unique way of his.  Like when he saw another Eggland’s commercial.  “Mom, Eggland’s say they have the best eggs.  What’s so best about them?”  And I laughed and nearly forgot to answer his question, put in that awesome way he has.
When I took him to his group on Friday, after working in the garden and having Aaron sit there like a Buddha talking to me across the yard, I was so relieved to see him still in a great mood.  I didn’t even mind that he picked out his Elvis tape to listen to in the van.  It’s not my favorite, but Aaron has been so unhappy lately that he hasn’t even wanted to listen to music.  Very unusual!  So when he wanted music, I would not have said no to Elvis………but I did change CD’s when he left the van.  
After I dropped him off, I drove to the eye doctor’s office.  I had decided to go ahead and order him those new glasses.  It was time.  I know that things may change again, and that I may be doing this same thing several months from now.  Picking up the pieces, repairing the damage if we can, and moving forward.  
It’s what all parents do.  It’s what we do often with Aaron.  We can’t always fix him or fix his situations.  Sometimes it works out for the best, like with the unfixable computer game.  Other times we try to teach a lesson in the brokenness, making him wait and hopefully learn, not knowing if he will learn or not.  But we must try. 
And so I come to my day today.  I was in Wal-Mart when my phone rang and seeing the number, I knew that it was Aaron calling from Barb’s phone at Paradigm.  “Mom!” he said.  “You told me to have a good day and so I am!  Except for that girl’s arm that has a red mark.”  
The girl’s arm with a red mark?
And Aaron told me that he got excited and was just playing……….and I know just what that means.  Aaron’s way of playing when he gets too excited is to whack someone with those big beefy hands of his.  He did that, and the poor girl had a red mark to prove it…….and Aaron had to stop having so much fun. 
Then later he got home and was downstairs talking to me when the doorbell rang.  There stood Miss Rosa, who brings him home, and who had a question for Aaron.  She had just gotten a text asking if Aaron had some keys of Barb’s, so there at our door Aaron pulled Barb’s keys out of his pocket……….keys he was just trying to guard from Victor, he said. 
That’s why Aaron and I just drove to Quik Trip to meet Barb and return her keys.  He also showed us the mandarin orange that was in his pocket.  I really do need to frisk him when he comes home.  
And that’s why Aaron and I were listening once again to Elvis.  “Hey Judy?!” Aaron asked as Elvis belted out Hey Jude.  We got to see the baby bulls in the field, and I had the rare pleasure of Aaron putting his arm around my shoulder.  Things I would have missed if Aaron had just had a perfect day and not tried to guard Barb’s keys.  
Well, that’s the way it is.  I can’t fix Aaron much of the time, though there are areas in which I do try. 
I’m just thankful for the days that I can enjoy Aaron……..for seeing the silver lining on the cloudy days.
That’s what’s so best!