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Seeing the Wonder

 

Aaron woke up a little earlier than usual this morning.  I heard him come slowly to my bedroom and knock on the door.  He knocked because the door was locked……….otherwise he would have bolted right in……….which is why I had the door locked.  Anyway, he immediately wanted to show me something about his lip.  His lips are chapped and during the night his lower lip cracked and bled some.  Aaron twisted his mouth sideways as he attempted to show me his damaged lip, and then he silently pointed to the dried blood on his lower lip and on the side of his mouth.
 
Satisfied that I was appropriately impressed, he said, “Mom!  There’s blood on my pillow!”  And with that, he strode with purpose back to his room and returned carrying his large body pillow that he loves.  Sure enough, there was a big spot of blood on the white pillowcase.  To be sure that I understood, he explained, “Mom, the lip area was on that pillow area.” 
 
I thanked him for explaining that, and told him that we would get him a new pillow this evening.  He knew that we had a Wal-Mart trip planned when he returns from Paradigm, so this news of a pillow purchase made him very happy.
 
He and I went downstairs to the kitchen, where I poured his coffee while he took his morning pills.  He spied some boiled eggs in a pot in the sink.  “Mom, what are those?  Eggs?” 
 
“Yes, Aaron, those are eggs.  Do you want one?” I asked.
 
He looked down at the eggs and replied, “No.  I want some……….not one.”
 
I laughed.  He was serious. 
 
“What number is some?”  he asked. 
 
Again I laughed.  Again he was serious. 
 
“How about two?” I queried.
 
“Can I have three?”  he countered.
 
And so I guess that to Aaron, some is not two.  Some is at least three.
 
I agreed that he could have three and then asked him if he wanted them sliced. 
 
“Yes,” he replied, “with that harp.”
 
 
This time I smiled with my back to Aaron as I got out the egg “harp.”  He was still serious about this matter of “some” eggs, while I was again enjoying how fun Aaron’s world can be.  He takes the most mundane of matters and makes it so distinctive. 
 
Later, we drove to meet his group and listened to my Carpenter’s CD.  He was talking about a movie where a robot from the future comes back to the present, and he said, “How come he doesn’t know what type of year it is?”  Just then, I heard the Carpenters sing,”…….there is wonder in most everything I see……”
 
That would be a perfect description of Aaron.  He either sees wonder in everything or he’s wondering about everything, but his take on life is so interesting.
 
Just like us with Aaron.  We’re either scratching or pounding our heads in wonder, or laughing at the wonder of the world that Aaron sees and shares.  I guess he keeps our brains sharp as we try to follow his thinking.  And with that I’ll close.
 
I need to go dry and put away the egg harp.

We’re Eating WHERE?

Yesterday Aaron had a dentist appointment, and as usual, he was looking forward to our day together.  He gladly endures having his teeth cleaned because he knows that afterwards we will go somewhere for lunch, and then to Wal-Mart, and maybe somewhere else – which on this day, our somewhere else was to be CD Tradepost.  I let Aaron choose our lunch destination several days earlier and was not at all surprised when he chose Olive Garden…….his new favorite place to eat. 

He got up earlier than normal, which is sometimes a sign that he is excited about his day.  When I went in to talk to him, he immediately asked, “Mom, is 36.3 cold?”……..and I knew that he was looking at the outdoor temperature on his new  indoor/outdoor clock and weather center.  I assured him that the temperature today would be quickly rising and that we were in for a very warm, pleasant day for his dentist visit.
 
As I turned to leave his room, he had one more question.  “Mom, are we going to eat lunch at Oliver Garden?”  I responded with my own question to be sure that I had heard him correctly.  “Eat where, Aaron?”  And he repeated what I thought I had heard…..”At Oliver Garden,” he said.  I smiled and didn’t correct him.  Sometimes I prefer Aaron’s rendition of familiar names.

Later, as we drove past the farmer’s fields on our way to the dentist, Aaron kept up a steady stream of mostly one-sided conversation.  He talked about his Star Wars game; about Tavion; about whether cells can be renewed; about whether cells are actually nerves; and then transitioned to the fascination of crystals and fool’s gold……….among many other topics that entered that ever-active brain of his.
 
I enjoyed the relative quiet of the waiting room while he got his teeth cleaned, wondering if we would have a repeat of what happened at his last dental visit.  I was relaxing in my seat in the waiting area when I heard Aaron’s unmistakable voice say, “Mom!”………and I looked up to see him standing there in the middle of the waiting room, with the paper bib around his neck and the dark protective glasses covering his eyes.  “Aaron!  What are you doing?” I asked – just as the hygienist came around the corner, smiling.  He wanted to be sure that we were going to eat out and go shopping, and I said yes as he turned and followed the hygienist back to his waiting chair.  The other people in the room had that typical puzzled look on their faces and I acted like nothing strange had just happened.  If people could only see how funny their faces look at times like this!
 
Thankfully, on this visit Aaron stayed put in his chair and before long he was finished at the dentist and we were driving toward “Oliver Garden” for our fun lunch.  Later, as we waited for our food to arrive, Aaron spied the wine bottles sticking out of the racks in the wall.  “Mom!  Look at those bottles!” he exclaimed as he pointed to the wall. 

Aaron, don’t  point.

“But they keep those bottles in the wall!  Is that beer?”  I told him that it was wine, and he continued in amazement………”How do they get it out of the wall without breaking the glass?!”  So I gave him a lesson on how the bottles were not stuck in the wall, even as I looked at them and saw that they really did look like they were a part of the wall.  There I go, looking through Aaron’s eyes!

As we sat there, I had the usual conversations with Aaron about the usual topics.  Aaron, don’t make those noises.  Aaron, don’t stare at those people beside us.  Aaron, be careful and don’t spill your tea.  Aaron, don’t blow your straw paper on me.  Aaron, wipe up that spilled tea with your napkin.  Aaron, don’t sing.  And as I helped him get some salad, he said, “Mom, I don’t want the hard parts.”  I know that the hard parts of the salad are the croutons, even as he continued, “Do you want me to give you the hard parts?”  So I got the extra croutons and we were both happy.

As we munched on our pizza, Aaron brought up his favorite topic…….out of the blue, as so often is the case.  “Mom, Rosie likes me.”  Ah, Rosie…………Aaron’s special friend at his day group.  So here I sat with my grown son who is still a boy in most ways, and he wanted to talk about Rosie.  I asked him, “So how do you know that Rosie likes you?”  He didn’t hesitate at all before answering, “Because she sits beside me when we watch TV, and at the movies.  And we share popcorn.”

Their friendship is so sweet, and we are thankful for it.  He then told me that yesterday Rosie’s mom had come to Paradigm, and I was reminded of the very amusing comment that Aaron made a few weeks ago when he said, “Mom, today Rosie’s mom came to Paradigm.  It was the same kind of Mom that came to my birthday!!”  I had laughed and Aaron had no idea of how funny his comment was. 

He continued telling me about Rosie’s mom being at his group yesterday.  “I had a slushie that was half empty and I asked Rosie’s mom if I could give it to Rosie.  She said yes so I gave it to her.”   I asked him if Rosie ate it and he very patiently answered, “You don’t eat it.  You drink it!”  So I asked him if Rosie drank it and he said yes…………germs and all.  Well, they are friends, you know……….and friends don’t worry so much about all that germ business.

Last night, as we were saying good night, Aaron commented, “Mom, we had fun at Oliver Garden.”

Yes, Aaron, we did have fun at Oliver Garden.  I didn’t tell him that the most precious thing for me was to once again have the opportunity to see inside his heart that is sometimes tender…………at least when it comes to Rosie.  And I am thankful that even though Aaron has issues and is labeled as having “special needs”………..I have the unique privilege of having a son who will probably always tell me everything that he is thinking.  Much of it gets rather old at times, but then I have the opportunity to capture a real nugget……or more than one. 

And it’s not fool’s gold, either.  These times with Aaron are true gold……..priceless and irreplaceable.   

Something Went Wrong!

Yesterday, Thursday, was mall day for Aaron’s day group.  I always give him a little extra money on Thursdays so that he can get himself something for lunch.  And I always give Aaron my lunch tutorial on the way to meet his group.

“Now Aaron, for lunch be sure that you choose something that’s good for you.”  By that I mean something that’s not composed of ice cream, hot fudge, chocolate chips, and whipped cream.  In other words, Dairy Queen should not be his lunch destination, as it so often has been in the past.

He assures me, with some exasperation, that he knows this and that he promises to get a “good lunch.”  Still, I’m never sure that our definitions of “good” are anywhere near similar.  This is because Aaron wants what tastes good, whereas I want what is relatively good FOR him.
 
Aaron did his usual loud, grand entrance into the house when he returned from his day at the mall.  He hardly had time to blink when he rushed in the door before I hear him loudly say, “Mom?”  It didn’t take him long to find me and then he instantly began to tell me about his day – beginning, of course, with food and what he had for lunch.

“Mom!  We went to the mall and I had pizza for lunch!”  He said this rather breathlessly, as if he was telling me that he had gone to Rome for lunch.  He wanted to know if this was a good lunch and he hoped that I would be pleased, so I let him know that this was a good choice.  At least when compared to the Triple Death By Chocolate ice cream creation he sometimes consumes, pizza is a decent substitute.

He breathlessly continued, “And Mom!  I noticed something!  Those men were Italian!” 

Really, Aaron?  How did you know that they were Italian?

He answered, “Because they didn’t talk in the American way!”
 
He happily told me that one of the men behind the counter pointed to the various pizza choices and said, “Pizza, pizza, pizza!” ……………and not in the American way!  And Aaron told the Italian man that he was trying to decide what FLAVOR he wanted! 

As Aaron told me that he liked the flavor of pizza he chose, he said, “Look what I brought with me.”  Out of his pocket he pulled a knife, fork, and spoon that he had hidden in his pocket before he left the house.  I told him that he did not need silverware from home when he goes out to eat.
 
“But Mom, I wanted it because it’s metal!”  Oh, Aaron………….who always must have multiple pieces of silverware for every meal……..now wants metal silverware as opposed to plastic.  And I know that even though I remind him that he doesn’t need silverware at all with pizza, he will continue to have silverware around him with his pizza because he must.  He just MUST have silverware around him when he eats.  I also make a mental note that frisking him before he leaves the house would always be best.

Aaron continued on with reciting his lunch adventure by telling me about the lady at the oriental restaurant in the food court.  “Mom, that lady had meat on a toothpick.  She asked me if I wanted one and you know what I said?”  I told Aaron that I did not know what he said, knowing that he was about to tell me……….and he did.  “I said ‘Ewwww!’ ” 

I told Aaron that he should never respond to anyone who offers him food by saying “Ewwww!”  He answered, “But Mom, it was fish!  Do you want fish in Chinese?!”  I have no idea what fish in Chinese means, but obviously it is not in Aaron’s food palate.  Regardless, I confirmed to him that the nice response would have been to say, “No thank you.”  And he reaffirmed, “I thought it was just better to say ‘Ewwww!’ ”  Another mental note that we need some manners updating.

Later, as Gary and I were almost finished with our nice little dinner together, Aaron came downstairs and sat in the family room…………where I noticed that he looked a little odd and was swallowing in a strange way.  Then, as Aaron told Cody today……….”Something went wrong!”  I urged Aaron to hurry into the bathroom because I suspected that something was amiss in his digestive process……….which was correct.  He didn’t quite make it all the way to the toilet before that wonderful “pizza, pizza, pizza!” came right up.  This was not quite the ending to Aaron’s day or to our dinner that we would have chosen.  Indeed, something went wrong…….very wrong.

Poor Aaron, who lost all of that special flavor of pizza that he had chosen from that Italian man.  Poor Gary, who would not let me lift my one good arm at all and who patiently cleaned it all up himself.

Perhaps Aaron should have chosen to eat the fish that was in Chinese.  I’m not sure that he will ever choose that flavor of pizza again from that Italian man. 

Today it’s popcorn at the theater…………the largest popcorn possible……..with the most butter that they will squirt on the popcorn.  No amount of lecturing on my part or of something going wrong on Aaron’s part will deter him from his large buttered popcorn. 

Gary and I are taking Aaron out tonight to do a little shopping, and MAYBE to eat out.  We’ll see about that eating out part.   I know that I should frisk him before we leave…….to check for metal silverware in his pockets.

And brush him up on his manners as we drive.

And remind him of good food choices.

And stick some barf bags in the van……….and in my purse.

So much can go wrong! 
 
But somehow with Aaron, it all turns out right in the long run.

LESSONS FROM THE GATHERING CLOUDS

I was enjoying the beauty of a crisp fall morning yesterday, adjusting to the time change and the earlier daylight that it brought.  The sunshine on the fading yet still colorful leaves was helping to fuel my energy on this Monday.  I was busy going about my morning routine when a quick glance out the kitchen window showed me that there was something new on the horizon, out past our tree line and the farmer’s fields across from our house.  The entire skyline was filling with clouds.  Not soft, puffy clouds – but a mass of darker, thicker clouds was filling the Kansas sky.  I wondered if these clouds were just a passing layer that would dissipate in the rising sun, but as the minutes went by I knew that they were instead building into a covering that would soon blot out the sun and turn my shining morning into a darker one.

Sure enough, it wasn’t long until the entire sky was filled with this grey spread that totally transformed the outdoor scene.  Now instead of glowing sunshine bouncing off the yellows and rusts and evergreens of our trees, the view became one of muted tones………of drabness…………of coldness.  And though I’ve never minded cloudy days, I did miss the brilliance of the sunshine on the colorful leaves, along with the energy and the warmth that the light had given me on this Monday morning.  I watched helplessly as the clouds built and spread across the blue sky, unable to change their momentum or their effect.

All of us either are facing, or will sometime face, these building clouds on the horizons of our lives.  We look ahead and we sense, or know with certainty, that there are changes waiting on the outskirts of our present happy situations that may change our lives………..or at least alter our current secure world.  For me, today, I don’t think I want to hear what my surgeon will say about my shoulder injury.  I don’t want to face surgery, nor the long recovery and inconvenience that may be awaiting me.   For many others, there are far more serious situations.  They watch as a tiny baby struggles to grow and thrive in the NICU;  they await the biopsy results that are coming for someone they love;  they struggle with serious undiagnosed health issues as they go from test to test with various doctors;  they deal with chronic pains and depression;  they watch with broken hearts as their children walk away from the Lord;  they seek God for wisdom in making major, life changing decisions;  they see their marriage fail and their finances plummet; they see their homes destroyed in a hurricane and their entire lives in upheaval.

And today, we watch and wait as our country selects a new President.  With the selection of either candidate, we wonder how our nation’s people will respond.  We know that there may be conflict and we pray that there will not be uprisings.  We wonder if our country will ever be as we remembered it years ago, unified and vigorous.  Or are the building clouds threatening to change our nation forever?

In all of these situations, there is one constant………one point on the compass that is sure.  Listen to the Psalmist in Psalm 42:5 – “Why are you in despair, oh my soul?  And why have you become disturbed within me?  Hope in God, for I shall again praise Him for the help of His presence.”   God hasn’t left us – He hasn’t abandoned us, even as the thick clouds cover our world.  We don’t need to despair or be disturbed, for we have the help of His presence!

Again, in verse 11, the Psalmist says – “Why are you in despair, oh my soul?  And why have you become disturbed within me?  Hope in God, for I shall yet praise Him, the help of my countenance and my God.”  Again, even in the bleakness we should praise God……….and in focusing on Him, even our countenance will change. 

Finally, verse 8 – “The Lord will command His loving kindness in the daytime; and His song will be with me in the night, a prayer to the God of my life.”  Wow!  Not only will God exhibit his love to me in the daylight when my surroundings are full of light………….but He promises that His song will be with me in the dark times.  A prayer, the writer says………..my response to the growing clouds that threaten my happiness is a prayer to this God Who commands His love in every situation of my life.  A prayer of submission to God Who orchestrates my cloud cover and a prayer of praise to God Who commands His love to me. 
 
 

We submit and we praise, even when we don’t feel like doing so.  We submit and we praise, even as we watch the clouds fill our sky.  We submit and we praise, even when the news isn’t good news.  We submit and we praise, even when the decisions are very difficult.  We submit and we praise, even if our candidate doesn’t win.  We submit and we praise because we have a God Who is with us in the sunshine and in the clouds, in the good and the bad of life.    

Thank you, God, for Your presence……….for Your hope……….and for Your love!

Lessons From the Untended Garden

As I opened our back door this morning, I was still expecting to be hit by the furnace-like temperatures that we’ve endured here in Kansas for weeks. What a pleasant relief, though, to feel the almost-cool air hit my face and to see the clouds in the sky instead of the blazing sun. It’s been wonderful to sit outside in the morning or the evening without feeling like I’m sitting in a sauna. The rains that we’ve had recently have rejuvenated both my garden and my spirits. How nice it’s been to be able to take a break from the constant, daily watering duties that I’ve had for most of the summer! To wake up in the mornings and say, “Aaaah! I don’t have to go out and water and sweat today!” has been almost like being on vacation.

So as I lazily walked outside this morning with a cup of coffee and began to walk around, I was hit with some stark reminders. In this time of respite from my gardening, I’ve allowed some unpleasant things to creep in among my flowers and vegetables. I remember writing to the gardening editor of our local newspaper a few years ago and one of her replying comments was that our gardens are to always be a place of beauty. While we were being baked and going thirsty in our extreme heat and drought, I was out in the gardens daily trying to nourish them and save them. During that time, I was able to see the weeds, the dead growth, or the other problem areas and then take care of it right away.

 However, now that the crisis has eased, I’m not paying nearly as much attention to the details of my gardens. It’s starting to show, too. Dried blooms need to be removed; weeds need to be pulled; unproductive plants need to be cut back; vegetables need to be picked. It’s time to shake myself and to be alert and busy once again. Time to ensure that my gardens are a place of beauty and not a picture of neglect!

During the storms of my life I can distinctly remember going to God and to my Bible, asking for direction and for a Word from my Lord. Time spent with Him was valuable and necessary to me. I wanted to hear from Him! I needed God and I needed His attention in my life. I have so many verses in my Bible that are highlighted and then beside them I have written a date with a small note of the event that was taking place at that time. The majority of them are during a time of storm and crisis.

 Yet during the reprieves of life, when things are pleasant and uneventful, it’s very easy to neglect that time with the Lord. Or maybe I still spend the time with Him but not necessarily with the fervency that I have during the time of trials. If I’m not careful, I will begin to see some ugly results of this attitude. Weeds of indifference, apathy, pride, and self-sufficiency will mar the beauty of God’s image in my life. My inattention will certainly result in deadness instead of growth. The Psalmist expresses this beautifully in Psalm 119:92-93 – “If Your law had not been my delight, then I would have perished in my affliction. I will never forget Your precepts, for by them You have revived me.”

May I remember Your precepts, O Lord, not just in my times of affliction but also in the times of refreshing. May I be revived in every stage of life by Your Word and by Your presence that I daily seek, so that my life will be a reflection of Your beauty.

The Blessing of Ben

I love blogging about Aaron the way that I’ve been able to do over this past year and two months.  Sharing Aaron with all of you, and our life with Aaron, is a joy and a privilege.  I sometimes wonder who is reading, and I wonder if the blogs are a blessing, or do they ever come across as same-old, same-old……….or shallow……….or silly……….or making light of a serious situation.  I know that many parents of children with special needs really don’t have many reasons to laugh or even smile.  Their lives are full of the daily care of children or adult children who need lots of care.  Days are exhausting and nights are too short.  There is rarely any humor such as we have with Aaron.  Aaron happens to be very verbal and at times, very funny.  Yet there are many seasons of frustration and tiredness for us as well.

My main purpose for blogging is to share with all of you that even in the midst of cares and burdens, and the heartache of having a child with special needs – we can choose to see the good, or the humorous, and to take the time to learn the lessons that God wants to teach us.  I am blessed beyond measure to share these thoughts and lessons with each of you.

Last week I was very touched and very encouraged to hear from a special friend via Facebook.  Doretha Weyant and her husband Brad crossed Gary’s and my path many years ago at Piedmont Bible College.  We have reconnected through Facebook and have enjoyed getting to know one another again.  Doretha and Brad have been a sweet testimony to me, and have given me permission to share their story.  We have communicated a lot on Facebook for a long time, but last week I got this inbox message from Doretha………..and it just blessed my heart to pieces.  She said:

Patty, I thought of you and Aaron yesterday at the doctor’s office. I had gotten on the elevator to go to 2nd floor and a mom with her 2 kids was on there. One looked maybe 8; the other a teenager. The oldest boy said some strange thing very loudly and then went over and hugged his mom. She looked at me and I just smiled at her. We got off the elevator and they were coming to my dr. as well. They sat right behind me in the waiting room, so I couldn’t see them but could hear them. The oldest boy was very loud and kept saying hey mom, hey mom, over and over til she would respond. Then he would tell her all kinds of things from his day, doing so in a rather loud voice. I sat there wondering if he had the same disability as Aaron. Then I went in to see my knee dr. While in there I found out he had Down Syndrome. I thought of your blogs about Aaron and I wish I could have encouraged the mom, but didn’t see them anymore. Just know that Brad and I think of your family quite often and pray God will give you His grace to carry on with your many trials in life. Aaron is a special guy and God has a wonderful purpose for him here on this earth. Love ya. Doretha

The thing is……….Doretha wrote me this note on the day that marked the one year anniversary of her own son’s passing to heaven.  This made her encouragement to me even more poignant and meaningful.  Let me allow Doretha to tell you about their precious Ben:

Ben had Duchenne Muscular Dystrophy which is an incurable genetic muscle disease. He had a mutation on his dystrophin gene, a very large piece of the genetic exons were missing. Dystrophin is the protein that basically keeps the muscles from falling apart. He was diagnosed at 7 yrs old and we were told that he would be in a wheelchair very soon and life span was no more than late teens to mid 20’s. But when you are dealing on a daily basis, as you know with Aaron, you don’t think much about the future.

Ben Wyant
 
Ben had a very loving set of parents in Brad and Doretha, and his siblings as well.  He had many friends and a wonderful extended family, as well as church family.  He was blessed, but I’m sure that he WAS a blessing as well – a huge blessing from all the comments and the pictures that I have seen.  Doretha continues:

October 3, 2011 at 12:55 in the afternoon, as Brad and I sat next to Ben, the angels came and carried him from his earthly home to his Heavenly one. This past year has been the most difficult year of our entire lives and I have shed more tears than I thought possible. We never realized how hard it was going to be to lose our child. We knew since Ben was 7 yrs old that he would not live past his 20’s. But, knowing it and experiencing it is two different things. Brad and I have been blessed with 4 wonderful children, 2 in Heaven, 2 on earth. Thank you Father for our blessing of Ben and the Godly life that he showed to all around him. We know we will see him and Christina very soon!!

I cannot imagine the pain of that moment, and the pain of the days following during this past year.  And did you notice that Doretha mentioned yet another child in heaven as well?  Again, here is Doretha:

Christina is the identical twin sister of our daughter Katie. In 1983, when I was pregnant with them, the medical field was just beginning to know about the problem I had with them. But they didn’t know how yet to fix it. It is called Twin to Twin Transfusion Syndrome. You can look it up if you are interested in knowing more about it, but it’s when one baby becomes more of a host baby and the other becomes the donor of food and nutrients and blood supply. The one baby gets bigger and bigger, while the donor baby does not grow after a certain time. This is pretty rare, but at least they know how to go in and fix it so that the babies have a better chance of survival. So, we knew we were having twins. They were due on March 25. We found out by mid January that Christina had died. Katie and she came a month early on Feb. 28. Since Christina was so small the body starts to absorb the dead tissue. Our doctor advised us that we did not want to have that in our memory. So, we donated her body to the research department at Bowman Grey School of Med. They were doing research on this very thing, so we thought that was best.  We have never seen our precious Christina. But since they were identical twins then she looks just like Katie.

Again, when I read Doretha’s words I realize that this precious child, Christina, was bone of her bone and flesh of her flesh.  She and Brad had such loss at this time………and then later to have loved Ben for all those years, and have to let him go when God called him to heaven.  Are Brad and Doretha bitter?  Are they angry at God?  Are they jealous of others who still have all their children, or even of me as I write about our daily life with Aaron?  You decide as you read what else Doretha told me:

Do you ever wonder why God gave Aaron to you and Gary? We have often wondered why God allowed us to have these strange diseases in our family. Guess we may never know. But, I’m glad that the Lord knows and gives us the strength to endure all these things. Keep up the blogs. I really like reading them!!

Two things stand out to me in Doretha’s words:  First, the Lord knows.  Yes, He does indeed know about our special children.  He knows why they were allowed to be like they are, as fearfully and wonderfully made as any others.  God is sovereign and even when He doesn’t bend down and tell us the whys of His doings, we can trust that all these things are somehow for our good and for His glory.  I believe that often our special children are here to draw us to God in a way that no other person or situation can.  What an honor and a calling!

Secondly, Doretha said that God gives us the strength to endure all these things.  Oh, is that ever true!  How could we ever do it on our own?  “For His strength is made perfect in weakness!”  We don’t know how weak we are until we are at our end and we fall into His arms, and let Him take over.  Complete trust………..complete relief. 

Thank you, Brad and Doretha, for letting me share a part of your story and a part of your heart.  Thank you for being a strong testimony of God’s faithfulness in your lives.  Thank you for allowing your pain to bless us.  I look forward to meeting Christina and Ben in heaven some day! 

Brad, Doretha, and Ben
 
 
And I will continue to write as God leads and pray that He will direct my words to bring honor to Him and encouragement to weary, questioning parents.    

 

 

 

 

The Wonder of the Mundane

Aaron is very fascinated with our pecan tree – not only because of the “pee-cons,” as he calls them, but because of the squirrels that run all over the yard.  It’s fun to watch the squirrels zipping around with their jaws stuffed with our pecans.  Aaron likes to pick the pecans up that the squirrels leave behind and then examine them.  Most of them are just shells or are mangled up pecans that the squirrels or birds have handled.  Rarely do we find a whole pecan that is undamaged.

But today Aaron bounded in the house when he got home from his group.  “Mom!  I found a pee-con!  It was new and had not been opened!!”   He was so excited about this new, unopened pee-con that I had to laugh.  He told me that he gave that pee-con to one of his friends in the van, which I thought was very nice.

Later, as Aaron told me about his trip to Wal-Mart, he talked about some of the interesting food that he had seen.  He loved the bright, orange pumpkins.  “Mom!  Did you know that squirrels eat the nuts inside of a pumpkin?!”  

Somehow I’ve missed the nuts inside of my pumpkins!  I went ahead and told Aaron that those nuts are really seeds, and that he could dry them and eat them too – but he didn’t like that idea.  He continued talking about the next thing on his mind, which was the coconut that he saw.  We’ve talked a lot about coconuts, and have bought fresh coconut before so he could open it and see the coconut milk and taste the fresh coconut.  Yet what amazes Aaron the most is that hard coconut shell.  Today was no exception.  “Mom, that coconut’s outside is like metal or cement!”   Now that’s hard!!

He told me that while he was outside of his day group, he saw a razor and picked it up – and cut his finger.  I was not happy about that, and so he held up his finger that had a band-aid on it.  He took the band-aid off and showed me his finger, which just looked like he had pulled skin – like he often does.  I said, “Aaron, it doesn’t look at all like you cut your finger with a razor.” 

“Yes, I did, Mom!  I was razoning my finger!”   And once again I told him to not pick up a razor, of all things, and do NOT razon his finger!!   There is a reason I often pray for his safety!  Why does he have to pick everything up that he sees?! 

He came down to join Gary and I for supper, and of course had to get more silverware, the napkins, the toothpicks – you know the routine as well as we do by now.  And as he cut his steak,  he placed something in his unused salad bowl.  It was a piece of fat that he had cut from his steak.  The fat could not stay on his plate, just like crumbs cannot stay in the same bowl or plate as his chips or crackers or whatever.  One little piece of fat – but it’s too much to share the plate with his good food. 

 

And we know not to make a big deal of this.  So he dirties a whole bowl for one little piece of meat.  That’s why I have a dishwasher.  It’s just part of what makes Aaron tick…….what makes Aaron unique…………what makes Aaron – Aaron. 

Without Aaron’s insight, I would never have known that pumpkins have nuts inside and that coconuts are like metal or cement.  And his friend would not have seen the wonder of a new, unopened pee-con!  Aaron makes the hum-drum details of life suddenly become full of wonder, at times.  We just need to listen and learn from him.

I need to remember to sometimes see my world like Aaron does, and share that wonder with others.  Life is much more interesting that way!  

I’ll Take Seconds!

Aaron’s color blindness leads to some interesting descriptions of food on his part.  He describes browns and tans as being green, for instance.  One day it was time for lunch and I asked him what he wanted to eat.  We had previously had a Mexican casserole for supper and he liked it, so he remembered that dish when I asked him what he wanted for lunch.  “Mom, can I have some of that Mexican food that was kinda green but yellow, too?”   There was no guacamole involved in this casserole, mind you, so I was a little stumped about how he described it as “kinda green but yellow, too.”  Doesn’t sound at all appealing to me! 

I don’t think this was the same day that he said, as he ate lunch, “Mom, do I get seconds?  Do you want me to fill myself up?”  Aaron, I never need to worry about you filling yourself up.  You do that very well on your own…………and no, you don’t need seconds!  If I was eating a leftover casserole from the frig that was kinda green but yellow, too, I’m not sure I’d even be eating firsts, trust me!

This morning I fixed Aaron some boiled eggs that he likes, and added some bacon as a special treat.  He came home from his group today and said, “Mom, I told Barb what you fixed me this morning.”

So you told her about the boiled eggs and the bacon?

“Yeah, I told her you fixed me those hard eggs and that bacon that was kinda soft and green.”

Hmmmm………sounds like such an appetizing breakfast, Aaron.  Hard eggs and that soft, green bacon.  Yuuumeeeeee!!!

We need to invite Barb over for some hard eggs and soft, green bacon sometime.  I bet she’ll jump at that offer!

Aaron’s Confusing Night

I’ve written before about how Aaron likes to keep lists of things in his life.  He has a list of the times he watches programs that he has recorded.  He keeps all sorts of sticky note lists around his room with info regarding his games.  But perhaps the most interesting itemizing that he does is the very precise list he keeps of when he goes to bed and when he gets up.  He has pages and pages of this information, somehow necessary to him and very important. 

Aaron arranges his bed in a specific order every night, too.  He sits up and reads one of his Handy Answer Books every night before bed.  He wears his sweater along with either his long or short pajamas.  He wears his watch and ring, as well as his glasses.  He leans on his “husband” pillow, the new black fuzzy one that he recently got at Target when he went in search of Mike and Ikes.  On his lap is another pillow on which he rests his book.  At his feet is his long body pillow that he sleeps on during the night.  Beside him he places his back scratcher as well as the little towel he constantly carries……..the one he wipes his hands on when he feels like they are messy……..because he can’t abide having messy hands. 

He will read awhile, depending on how sleepy he is, and then when it’s time for bed he will get up and clean off his bed, putting everything back in its precise place.  He’ll place his long pillow on the bed where it belongs for him to use during the night, with the zipper always on the left side.  Always!   He’ll remove his ring and his glasses and his sweater, also putting them in their proper spots.  He’ll plug in the baby monitor so that we can hear him in our bedroom if he has a seizure.  And just before he climbs into his bed, he will open his notebook to write down the exact time that he is going to now turn off the light and call it a night.  The first thing he does the following morning is to open that same notebook that he keeps by his bed and write down the precise time that he wakes up.  This is Aaron’s routine.  Every.  Single.  Night.    Every.  Single.  Day.

Except for last night, a night which was very different.  Aaron came striding into my bathroom this morning as I was getting ready to dry my hair.  “Mom!  Guess what happened last night?”   I asked him to tell me what happened………..he would anyway………..and he continued, “Well, I was reading before bed and then I woke up at 3:33!”

You did?!  “Yes!  And you know what?!” 

What?!   “I had all my stuff on and everything was still around me!  I had on my glasses and my ring and my watch and my sweater!”   With this, Aaron began to laugh.  He thought this was all just too funny.  He went on, “Around me there was my pillow that I lean on and my pillow on my lap and my pillow at my feet and my towel and my back scratcher!!”  And he laughed even harder, which made me laugh.  He had fallen asleep while reading and then woke up to this unusual scene.  He said, “I woke up because something was poking me in my back!  It was my back scratcher!”   More laughter………..from both of us.

I asked him what he did, and he told me, “I got up and I took off my ring and my watch and my glasses.  I cleaned off the bed, and then I laid down and went back to sleep.  That was funny, Mom!  I had everything on and everything around me!”

He was still amazed at this situation and still laughing, when it hit me.  I wondered about his notebook, so I asked him what time he wrote down for when he went to bed and when he got up.  He told me that he wrote down the first time he got up……3:33……..as well as the second time he got up, at 8:12.  Later, after he was gone for the day, I opened his notebook and sure enough, there it was……..both times.  I’m not sure about the going-to-bed times, but he did write down the two times that he got up.
 

Aaron is so interesting!  If he gets out of bed after sleeping, he will write that time down……..because he MUST!  After all, he has a list and this is the order of that list.  Aaron explained the situation very well, though.  We were on our way to meet his group and he once again was talking about his strange night.  “Mom, last night was very confusing!”

Yes, it was confusing, Aaron.  And to our Aaron, confusing is unacceptable……..and sometimes very funny! 

 

 

 

 

   

 

 

War!

War:  A struggle or competition between opposing forces or for a particular end

According to the above definition, Aaron and I are in a state of war.  We are actually in a state of war on two fronts.  One front has been ongoing for a long time…………the other is fairly new, but escalated today.

Moore War One:  The Fan Wars

Aaron has a tendency to get hot.  Not hot as in angry……well, sometimes he does do that…….but hot as in just hot……like sweaty hot.  Yuck!  Of course, it could have something to do with the fact that he often has his fuzzy blanket thrown over his lap as he sits at his desk and is on his computer.  And under that blanket may very well be long pajama pants, slipper socks AND slippers, and even a long sleeved shirt.  Never mind that we’ve told him time and again that he is way overdressed.  This is how he seems to be comfortable and if Aaron is comfortable then there is a slim-to-none chance that he will change what he is doing.

Aaron’s solution to being hot isn’t to dress lighter, although at times he does put on shorts along with a cooler shirt………while still using that fuzzy blanket.  His solution is to turn on his ceiling fan, no matter what time of year it is.  The whirring of his ceiling fan is a very common sound upstairs where his bedroom is located.

A year or two ago I bought him a little portable fan to put on his bookcase beside his desk.  I showed him how this fan could be used to blow on him and keep him from being so hot.  I thought that this was a great idea and was sure that Aaron would agree.  I should have known better.  Before long, we noticed that the fan was positioned to blow directly on Aaron’s computer………..not on Aaron himself.  So I moved the fan back to the blowing-on-Aaron position……only to walk in later and find it in the blowing-on-the-computer position.

When questioned, Aaron told us that his computer gets hot and so he uses his nice, new portable fan to blow on his computer in order to cool it down.  No amount of persuasion, pleading, demanding, or scientific data showing otherwise has caused Aaron to budge on this issue.  He is sure that his computer is too hot and that it needs the constant blowing of his fan in order to cool down and not explode, I guess.  Aaron keeps his ceiling fan on for himself, and has changed his little blowing-on-Aaron fan into a blowing-on-the-computer fan.

He also thinks that these fans need to be running constantly.  I do not agree.  When we leave the house, I always tell Aaron to turn his fans off.  And sure enough, sneaky Aaron will somehow manage on many mornings to keep those fans turned on……..as he did today.  Sometimes he’ll even go back into the house under the guise of getting something or doing something – but in reality he is sneaking back upstairs to turn those fans on.

So the Fan Wars continue and will for the foreseeable future, I’m sure.

Moore War Two:  The Body Wash Wars

Do you remember Aaron’s body wash that he said contained confetti?  Well, he threw it away one day because he said it was empty.  I rescued it from the trash because it was by NO means nearly empty.  When turned upside down, there were days and days of future showers in that bottle.  Listen, I am the woman who cuts open plastic bottles in order to use all the remaining face wash or lotion or other such things that are in there……..days and days of face washes and lotions I have found inside those bottles!  So no way was I letting Aaron throw away days and days worth of his confetti body wash!

Aaron does not have my thrifty nature.  He also does not seem to appreciate upside down bottles.  He has refused to use the body wash that has gathered in the upside down bottle.  I have persevered, though, even while he got under his sink and pulled out a full, new bottle of a different brand of body wash.  He has used this entire bottle, even while the confetti body wash has remained there, upside down and untouched.

This morning Aaron came into my bathroom and said, “Mom, I threw out those hair detergent things.  When I turned it up and squeezed, it made an air sound.”

Now notice that Aaron said he threw away those hair detergent things…….plural.  But then he referred to the air sound as coming from only one bottle.  Uh-huh.  He took the opportunity of having one empty bottle as a chance to throw both bottles away.  Who does he think he’s dealing with?  An amateur?  No way!

After I got home from taking him to his group, and had turned his fans off, I checked his bathroom trash can.  Yes, I knew it!  He had thrown away his upside down confetti body wash that still has days and days of showers left.  Now that bottle of confetti body wash is perched upside down once again in his shower.  I am not easily defeated.

Problem is, neither is Aaron.  Things could get hot around here!  Wonder if he’d let me borrow his little fan?