Category: Family

My Mom is Weird!

I haven’t done much writing lately for various reasons, a big one being that I had thumb surgery recently.  This clunky splint makes typing a little difficult.  My immobile, fat wrapped thumb keeps wanting to hit the space bar, so now you will understand if you see unnecessary spaces here and there that I don’t catch.   The backspace key is my friend!

WP_20160729_14_06_13_Pro_LI

Gary has been taking excellent care of me, and taking up the slack in areas that I still can’t manage.  Even faithful Jackson seems to have been concerned for me at first.  I think now he’s just used to the new me. 

WP_20160728_19_45_27_Pro_LI

But Aaron…..dear Aaron……has mostly been worried about……Aaron.  Oh, he’s shown a little empathy.   That’s not really the right word.  He’s shown a little interest in my condition, but showing a great deal of care doesn’t come naturally to Aaron.  But the times that he does express care are special indeed.

He was very happy that he got to stay home on the day of my surgery.  “When you go to take your surgery,” he had asked the day before, “do I have to go to Paradigm?”  Gary and I were at the surgery center very early, so neither of us could drive him to Paradigm.  He loves staying home for whatever reason, so I think he was secretly happy that I had surgery because it did benefit him on that day.

He eyed my left hand suspiciously when I got home.  I knew he was uncomfortable so I just tried to act normal and put him at ease.  But when I laid down in bed in the middle of the morning, he was very uncertain.  He understood, of course, that I had surgery.  But he did not  know how my surgery would affect our normal routine……and therefore affect him, greatly.

I kept the bedroom door open as I rested in bed.  It wasn’t long before I heard Aaron walking up  the hall from his room to my room.  I just kept my eyes closed.  Aaron just stood at the bedroom door, not speaking, but I could feel him staring at me.  He stood there and stared for awhile before he turned and walked back to his bedroom.  He was exhibiting his uncertainty.

It wasn’t very long before I heard his familiar steps once again in the hallway.  He stood once more at my bedroom door for a few seconds.

“What’s for supper?” he finally asked.

I told him there was plenty of food in the frig to choose from so he could have his pick.  It wasn’t really the answer he had hoped for, I knew.  He thought something along the line of pizza or a sub would be far better.  My hand surgery wasn’t working to his advantage as much as he had hoped!

But he was very happy that Gary brought him a cheddar pasta salad when he went to pick up my prescriptions from Dillon’s.  This surgery might work out after all, Aaron thought.

And soon I heard him walking heavily up the hall again.  No need to walk softly when there are matters to address that are very important.  I just waited quietly while he stared at me. 

“Are you watching Wheel of Fortune?” he asked.

No asking how I was feeling.  No wanting to know if he could bring me something.  No queries about my surgery.  And no surprise from me.  Aaron was uncomfortable and he wanted Mom to be Mom again, surgery or not.

I told him that I imagined I could watch Wheel of Fortune.  Later that afternoon, I went down to sit on the couch.  Aaron sighed when I asked him to carry my pillows.  He was seeing that this surgery would take a toll on him and his routine after all. 

We watched Wheel of Fortune that evening, and Aaron was happy.  He didn’t seem to notice my pain pill drowsiness.  He was just very happy that we could have this normal part of our day restored.  He was not so happy, though, to hear that playing Skip-Bo was going to be questionable for a day or two. 

Later that night, Aaron walked with purpose into the kitchen where I was standing.  “Mom!  Here!” he said.  “I brought you something since you had surgery.”

Surprised, I looked in his outstretched hand and saw that he held two yellow gumballs.  He had gotten them from his jar of gumballs in his room.  Usually he tells me I can have one gumball, and on a rare occasion I can have two.  This gift of TWO gumballs, then, was a true gift from his heart. 

WP_20160729_09_43_56_Pro_LI

I thanked him and then put them on the counter.  “No, Mom!” he said.  “Hurry and eat it before it becomes tomorrow!”

So I had to smile and I had to “eat” the gumballs immediately.  I didn’t exactly feel like it, but I did chew those gumballs until all the taste was gone as I relished the kindness that Aaron had shown in his own Aaron way.

Life returned to a measure of normalcy fairly quickly.  A couple days after my surgery I even drove Aaron down to Great Clips for a much needed haircut.  As we sat in our chairs waiting for his name to be called, I showed him how I was to exercise my fingers that were protruding from my splint.  I tried to be funny as I bent my fingers, saying “Up, down, out, in!” as I bent them back and forth.  I should have known that Aaron wouldn’t appreciate my humor.

“You’re weird, Mom!” he said.  And then he looked toward the hairdressers and very loudly said, “My Mom is weird!!  She had surgery and she’s weird!!”  What do you do when all eyes turn to you and your son?  Laugh!  And hope they don’t agree with Aaron!

Aaron has done really well with this whole “Mom had surgery and she’s weird and I want things back to normal” business.  He has actually been helping with carrying and setting the table and bringing in trash cans and other things, much more that I thought he would.  He had a very grouchy week at his day group last week, though, and I don’t know if all this was part of why that happened or not.  Sometimes we just don’t know with Aaron.

And we have been playing Skip-Bo again.  Gary shuffles the cards for us and off we go!  Aaron sometimes acts like his silly self.  See the clothes pin on his ear?

WP_20160730_21_40_38_Pro_LI

But he plays with the intent to win, realizing that Mom still can watch for cheating even with a splint on her hand!

WP_20160802_21_39_54_Pro_LI

The other night he once again strode downstairs to find me on my computer.  “Here, Mom!” he said.  “I saved this for you.”

I looked at his bowl that he held toward me and saw it.  One lone little fruit gummy for me to eat. 

WP_20160729_13_03_45_Pro_LI (2)

It’s not the size of the gift that matters, but the heart behind it.  It’s true not just for Aaron, but for all of us.  Sometimes I have to look hard for Aaron’s gifts, but they are there, sweet and honest.

Brutally honest sometimes (weird Mom!)………but that’s Aaron!

 

 

 

 

 

Vacationing With Aaron

A vacation trip means different things to different people.  Aaron was very happy when we told him that we were taking a Fourth of July trip to see family in North Carolina.  He likes seeing Aunt Sandra and others that he knows.  But really, to Aaron a vacation primarily means one thing…….food.  Particularly, restaurant food.  Snack food is right up there, too, on Aaron’s list of favorite vacation activities.  Then there’s Aunt Sandra’s wonderful cooking at her house, which is the best!  Staying in a hotel would be number three, because a hotel usually means dinner in a restaurant before bed.  Rest stops are fun, too, especially if the rest stop is a stop at a filling station……where there is food.  Plus I bring snack food, which is fun, but not as much fun as food that we buy on the road.  So you get the idea.  A vacation for Aaron boils down to one thing:  food in one form or another. 

We left for our Food Fest vacation on Thursday, the 30th.  Aaron wanted to know what time we were leaving, because knowing the precise time for everything in life is vital to Aaron.  So we told him that we would leave around 8:00, hoping that the word “around” would yield us some leeway in Aaron’s mind.  Not likely, but we can always hope that Aaron will be a bit flexible.  As it turned out, Aaron had a very rough night before our 8:00 leaving time.  I heard him having a seizure at 12:30 that morning, with two more strong seizures following during the early morning hours.  It was a long and very tiring night for him and for me, but I was thankful that by morning Aaron was able to get ready for our trip.  I was also thankful that flying had not been an option for us as it’s too expensive, because trying to maneuver Aaron in an airport and on a plane after seizures would have been very difficult. 

We were two hours late to leave, but Aaron was too lethargic to care.  He burrowed around in the back seat as soon as we started driving until he was finally comfortable, laying down and sleeping for quite a while.  He would wake up and look around some, long enough to ask the inevitable:

“Are we getting something to eat?”

“Yes, Aaron,” we would answer.  “We’ll be getting something to eat.”

“When?” he wanted to know.

“Oh, probably later in the afternoon,” we told him.

“So what time?” he asked.

“We’re not totally sure what time,” we answered.

“Oh,” was all he would say.  Until:

“I’m talking about eating in a restaurant,” he clarified.

“Yes,” we said.  “We’ll eat in a restaurant.”

“What time?” he ventured again.

And so back and forth this conversation occurred, over and over again as Gary drove us on our scenic route.  If Aaron was awake, we pointed out the farmer’s fields…..the Mississippi River……the Tennessee River…….the quaint little towns with their interesting sights……the beautiful wildflowers……

But none of it was particularly interesting to Aaron.  Part of it was that he didn’t feel up to par after his seizures.  And part of it is because none of these things held nearly as much interest to Aaron as, say, a Cracker Barrel or Applebee’s sign.  Of course!

Aaron was listening to some music on his headphones when he let us know that he needed to use the bathroom.  We told him that we would stop as soon as we found a place.

“I’m talking about a bathroom in a restaurant,” he informed us. 

HaHaHa!!!  Good try, Aaron.  We knew he must have been feeling better!

We ended that first day happily eating supper at Applebee’s, right beside our hotel in Paducah, Kentucky.  Aaron rolled in his suitcase while he carried his small backpack that held his music CD’s and his CD player with headphones.  And Aaron, who must finish what he has started if at all possible, was very pleased to put on his pajamas and then complete the task of finishing his Ronnie Milsap CD before it was time to turn off the lights and sleep.  Mission accomplished!

WP_20160630_20_43_42_Pro_LI

We all slept very well that night.  Aaron was still fairly slow that morning, which is normal after seizures.  But he wasn’t so slow that he didn’t think about food!  He was hoping for breakfast in a restaurant, so we told him that the hotel breakfast was very much like a restaurant.  He didn’t really buy into that, but he was happy to eat again.  And very curious about the bowl of Trix that the woman in front of us had as he leaned over to stare at it, which caused her to stare at Aaron……with a smile, thankfully. 

Aaron really wanted Gary to listen to his Ronnie Milsap CD in the car player, but we told Aaron no, that he needed to use his own player.  Gary told Aaron that he just doesn’t like to listen to music while he drives, which Aaron finds totally mystifying. 

“How come you just like listening to the cars?!” Aaron asked in disbelief.

It was a welcome sight to see more and more mountains as we drove toward our beautiful Smoky Mountains, and to our family.  Aaron wasn’t greatly impressed with the pretty views of mountains and lakes and rolling whitewater rivers.  He just wanted to know what time we were getting to Aunt Sandra’s and what was for supper.

WP_20160701_16_31_32_Pro

Aaron quickly set up shop at Aunt Sandra’s, putting his CD and DVD player on the desk in the room where he sleeps.   His Ronnie Milsap CD and his Superman movies were nearby, and he was all set. 

On Saturday, Sandra took us up to see a friend who raises goats and dogs and cows.  The goats were just so cute.  Georgianna let Aaron pet and feed the goats, which he loved doing.  He really loves to feed animals……of course!  It’s food!  We ate lunch at Nabor’s drive-in, which we always must do in Bryson City……and which IS a restaurant, so Aaron was happy!  We drove around and looked at sights and gorgeous views, ending up at the grocery store……..where Aaron ended up finding DVD’s for sale, of course!!

WP_20160702_15_15_11_Pro_LI

It was just great to see everyone over the next few days!  There were so many family members there, especially at the barbecue on Sunday.  During the days that we were there, Aaron had lots of new people to talk to about movies or about his day group or about anything else that entered his mind.  He didn’t know many names but he would usually just look at someone and say, “HEY!”  I would often tell Aaron the name of the person to whom he spoke, but names didn’t matter nearly as much to Aaron as the telling of his stories did.  So “HEY!!” it often was.

There were some moments of frustration, as there always are, but generally Aaron did very well.  To be in such a crowded environment with many people he didn’t know, totally out of his routine, is always a stretch for Aaron.  I think the time he got the most bothered, of all things, was the night that he heard Sandra and I making the noise that means something tastes good.  You know…….mmm, mmm, mmm, mmm, mmm.  The inflections in that common sound we make without even thinking just drove Aaron nuts.  He told us to stop it!  And we forgot as we stood at her kitchen island that night, sampling a few more little bites of her carrot cake.  “Mmm, mmm, mmm, mmm, mmm,” we both intoned as we smacked our lips……and there stood Aaron.  He had fire in his eyes as he got very upset, told us we were weird, and then gave me a kick in my leg.  It’s just amazing to see how his brain functions, and to see what makes him totally lose control. 

One of the sweetest moments came when Aaron began to tell his cousin, Andrew, about Ronnie Milsap.  Andrew, bless his heart, got out his phone and tried to look up Ronnie Milsap while Aaron anxiously waited.  Andrew’s phone didn’t get good coverage, so I quickly found the song.  Andrew listened intently with Aaron, while Aaron rubbed his hands together in delight and laughed a lot in total pleasure.  And to top it off, Andrew went up to Sandra’s house so that Aaron could show him some more Ronnie Milsap songs on his CD player.  What a kind thing for Andrew to do!! 

WP_20160703_16_30_44_Pro_LI

We visited Aaron’s Nana, Leo, on Monday morning before leaving town.  We also got to see Jonni and JD, and of course, Meshach……who sat in Aaron’s lap the entire visit and even wanted to leave in the car with Aaron. 

WP_20160704_11_06_46_Pro_LI

 

WP_20160704_11_28_30_Pro_LI

The trip back to Kansas on Monday and Tuesday was uneventful.  Of course, Aaron had the usual food questions and where are we staying questions and when will we get to Kansas questions.  On Tuesday he wanted to know what time we would get home.  Gary told him that we would get home around 4:00 that afternoon.  As we rode, we showed him when we entered Tennessee, when we entered Kentucky, etc. 

“Is 4:00 when we come to the entrance of Kansas?” he later asked. 

Later, we were on the final leg of our trip.  It was 3:09.

“When will we be home?” Aaron asked.

“In about an hour,” I told him.

“No.  You said 4:00,” he replied.

“What time is it?” Gary asked him.

“3:09,” Aaron answered.

“Then it’s about an hour,” Gary said.

“No,” Aaron answered.  “It’s 51 minutes.” 

I don’t think Aaron even notices the quick looks between Gary and me, and the suppressed smiles.  He is so often unaware of how he affects us in a very pleasing, happy, amazing way.  He does usually know when he affects us negatively, however, but I’m thankful that the happy times occur more often than the not-so-happy times.

He went to his day group today with no problem.  That’s a huge big deal for him after being gone for so many days!  He wanted me to come in with him and tell Barb about our trip, but I told him I didn’t have time for a long talk, and Barb probably didn’t either.

“But Mom, you don’t have to tell her for a LONG time!!” he insisted.

Yet I have told all of you for a LONG time about our vacation trip, that’s for sure.  Thanks for bearing with me if you’ve read all of this.  I just love sharing a little about what it’s like to travel with Aaron……to live with Aaron……to experience new things with Aaron……to be in his world and have him in ours in the way that we have this past week. 

It’s just another glimpse into autism and into life with Aaron, which makes our lives full and rich and sometimes rather complicated.

But not boring.  Never boring. 

WP_20160701_16_43_30_Pro_LI

 

 

 

  

 

Do You Wanna?

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

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

“Mom, do you wanna…….?”

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

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

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

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

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

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

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

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

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

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

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

“Mom, do you wanna…….?”

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

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

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

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

13265866_1161381953872479_6240405437889864604_n

 

13221670_1161556893854985_6727469289359066338_n

So read what Wendy said:

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

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

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

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

Aaron, I wanna see you healthy and safe.

Aaron, I wanna see you enjoy life.

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

WP_20160508_12_11_03_Pro

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

WP_20160517_14_24_30_Pro

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

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

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

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

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

Just like something else that’s unchanging.

“Mom, do you wanna…….?

 

A Fun Day at Tanganyika

I’m a little late to blog about our fun day at Tanganyika Wildlife Park.  This jewel is just a mile up the road from our house!   Gary and I took Aaron there on Memorial Day.

WP_20160530_12_53_45_Pro_LI

WP_20160530_12_53_30_Pro_LI

We love it because it’s beautiful……and it’s not too big, so Aaron doesn’t get all tired out……and you have access to so many of the animals.  You can walk among them, feed them, ride some of them, and have some sit on your lap.  We didn’t ride the camel this year or have any animals on our lap, but we have done that in the past.  Anyway, it was a very nice day, so I wanted to share it with you in pictures.

WP_20160530_11_30_30_Pro_LI

WP_20160530_11_31_25_Pro_LI

WP_20160530_11_32_33_Pro_LI

WP_20160530_11_45_56_Pro_LI

WP_20160530_11_46_30_Pro_LI

WP_20160530_11_56_28_Pro_LI

WP_20160530_11_57_16_Pro_LI

WP_20160530_11_58_16_Pro_LI

WP_20160530_12_16_18_Pro_LI

WP_20160530_12_17_45_Pro_LI

WP_20160530_12_27_51_Pro_LI

WP_20160530_12_37_32_Pro_LI

WP_20160530_12_51_06_Pro_LI

WP_20160530_12_57_18_Pro_LI

WP_20160530_12_57_24_Pro_LI (2)

WP_20160530_12_57_35_Pro_LI (2)

Come back and see us again!!

All I Need to Know

He threw the glass across the kitchen this morning.  At least it was a plastic glass……and at least it was empty.  So began our morning.  Aaron got up just in time to go out to Gary’s truck in the driveway and hug him goodbye.  He was happy and I was hopeful.  Yesterday was up and down with Aaron.  He didn’t like me for awhile but then settled down and we had a nice evening.  We watched Wheel of Fortune, and played Skip-Bo later while eating strawberries.

Simple pleasures, but not always such a simple life with Aaron. 

This morning as we walked back into the house after his goodbye hug for dad, he decided that Mom was the bad guy again.  He told me he wasn’t going to go to Paradigm today, and on and on. 

Oh, the complexities of his mind!  The challenges of autism!  Physical issues I can handle so much easier because the flesh and blood of those special needs is right there to see and somehow grasp.  But the workings of the autistic mind are sometimes anyone’s guess, and this morning I was in no guessing mood.

So I launched back after his verbal barrage got to a certain point.  I pointed my finger at Aaron and I very firmly put him in his place.  But Aaron rarely stays in the place I put him.  I may feel better for a few seconds, but then he opens his mouth and his resolve is more set than ever……his resolve to win the war, even if he loses a few battles in the process.  I know this about Aaron, but I sometimes act despite what I know.  I act on my feelings, and I often regret it. 

The rest of the morning was filled with Aaron telling me he wasn’t going to talk to me anymore, all the while talking to me to tell me that he wasn’t going to talk to me.  Over and over and over.  He also didn’t want me to talk, so I mostly remained silent, which actually drives him crazy.  There was no winning for either of us at that point.

Aaron went to Paradigm, wanting me to come in with him so I could tell Barb to be sure he was nice……and Barb told him the same thing I had said earlier, that he was the only one who could be sure he was nice.  I don’t know for sure how his day has been.  I don’t know for sure that I want to know.

We’ve had lots of storms in Kansas lately.  On our way back from Topeka recently, Gary and I drove through the beautiful Flint Hills.  There on the horizon were storm clouds, and we were headed straight into them.  There was no avoiding the storm.  No matter what road we took, the drive home led into the storm. 

WP_20160523_10_05_11_Pro

And again yesterday, driving Aaron to his day group, we were facing storm clouds.  There they were, dark and threatening. 

WP_20160531_09_49_08_Pro_LI (2)

Driving into a storm reminds me of living with Aaron.  It also reminds me of Moses.  I’m reading the book of Exodus, and in chapter 3 God spoke to Moses in the burning bush.  He told Moses of the job He wanted him to do…..to lead the children of Israel out of Egypt.  And Moses said, “Who am I, that I should go to Pharaoh and bring the children of Israel out of Egypt?” 

The first part of God’s answer was simply this: “But I will be with you…..”

God didn’t say, “Oh come on Moses, you’re the man!  You’re so great!  I know you can do it!”

Moses’ sufficiency rested only in those six words that God first spoke: “But I will be with you…..”

Moses’ sufficiency rested only in God.  Not in himself…..not in his family…..not in his royal connections from years past.  No.  The strength and wisdom and courage that Moses needed rested only in God.

I’m not proud of the times I blow it with Aaron.  I’m not proud of Aaron’s behaviors on the bad days.  I often feel like Moses.

“Who am I, that I can parent Aaron?  Who am I, that I can have patience enough on the bad days to tolerate the behaviors?”

And God’s answer for me is just the answer He gave to Moses: “But I will be with you…..”

It’s no mistake that I am Aaron’s mother.  God put me on this road because of His sovereign plan for me and also for Aaron.  I may feel on some days that I can’t do this correctly, or do it at all, but this is where God has put me.  God doesn’t make mistakes.

So here I am, driving on this life road and headed into yet another storm.  I know I’m not alone in this.  I know of others who are feeling the pressure of the dark clouds on their horizons, and are soon overcome with rain and lightning and thunder.  But if you’re God’s child, He is with you.  He promises you strength, wisdom for the asking, peace in your inner being, and joy deep down.  Whatever your situation…..your worry……your pain…..your secret turmoil……your fear…..your failures, God’s word to Moses is God’s word for you…..for me…. “But I will be with you….”

I don’t always feel this fact.  But I know this fact to be true, this fact of God being with me, and so I can rest in that knowledge even when I don’t feel it.

After I dropped Aaron off and drove home yesterday, this was my view.  All the time I was driving into the storm, just behind me was the lifting of the clouds. 

WP_20160531_10_00_33_Pro_LI

It’s true of my life, too.  God will relieve the burden, even if the situation remains.  He relieves my burden by reminding me of Who He is, like He did to Moses.  And reminding me that He is with me, always. 

Even when I say, “Are you sure, God?  Did I take a wrong turn somewhere?  And look how I’ve messed up!!”  And He answers once again, “But I will be with you…..”

Dark clouds, or bright sky.  Angry Aaron, or happy Aaron.  God is with me.

On some days, that’s all I know.  But on every day, that’s all I need to know. 

 

The Signature

It was last December 13, a Sunday afternoon, when I heard my text notification buzz.  Reaching for my phone, I saw that the message was from our friend Dona in Texas.  My first thought was that maybe she and her husband Steve were coming up our way and wanted to stop in for a visit.  But I gasped when I read her text.  Then I read it again to be sure that I had understood it correctly while hurrying downstairs to tell Gary the news. 

“Please pray,” Dona texted.  “Steve has had a major stroke and is being airlifted to a hospital in Dallas.” 

How could this possibly be happening?  Steve is our age, healthy and very active.  He had recently completed his Master’s; taught in the aviation department at LeTourneau University; and was a Colonel in the Texas Civil Air Patrol. 

All that day, Gary and I prayed as we waited for more news.  And my mind went back over the years of our friendship.  Dona and I went to college together at Piedmont Bible College, where Gary later joined our ranks as a student and Steve came as an aviation instructor at the Missionary Aviation Institute there.  Steve and Dona fell in love at the same time that Gary and I were doing the same.  And on May 26, 1979, Gary and I were married……and so were Steve and Dona.  We even married at exactly the same time in the evening, though in different towns.

Our friendship grew during the time that Gary completed college, Steve continued to instruct missionary pilots, and Dona and I worked.  Life was simple and sweet.  One day Steve told Gary that he wanted to teach missionary pilots how to fly helicopters, but one thing needed to happen first……..Steve needed to learn how to fly them.  Steve decided to try to join the army, learn to fly the choppers, and then go back to training missionary pilots when his time was up.  Gary had been in the army during Vietnam, so Steve asked Gary to go with him to the recruiter’s office in order to keep an ear out for anything that wasn’t quite kosher. 

Gary and Steve went to several appointments together.  Some people would say as luck would have it, but the four of us knew that it was as the Lord would have it that Steve did not go into the military, but Gary did.  Steve and Dona ended up living in Tennessee, where Steve was an air traffic controller.  Gary and I lived in six different places during his time as a military pilot. 

Steve and Dona remained dear friends over those years.  We visited each other when we could, with Steve and Dona coming to see us at several places where we lived, including here in Wichita.  They moved to Texas several years ago, and Steve remained active in aviation both as an ATC instructor at LeTourneau University, and as a commander and pilot in the Civil Air Patrol. 

Then came December 13.  It was a cold, rainy Sunday in Texas.  Dona had stayed home from church with a cold.  And Steve was found after church, lying beside his vehicle in the rain, mostly unresponsive.  A major stroke.  Airlifted to Dallas, where he spent weeks in the hospital and in a rehab hospital.  Home now, facing continued extensive rehab.  God has been so gracious to Steve.  Much of his function has returned, though he is still profoundly affected by the stroke. 

His life has dramatically changed, as has Dona’s, in ways that most of us never consider until we are faced with the reality of something like this……something completely life changing.  Dona writes about their life and about their Lord, and sends it out as emails.  She’s written these devotional and inspirational pieces for years.  What a treasure they are!  And especially now, as she has allowed us to walk with her as she walks with Steve on this path full of twists and turns.  She and Steve have always been examples to us of steadfast faith, but never more so than now, when their faith has been tested as never before.

In November of last year, Steve and Dona sent Aaron a birthday card.  There at the bottom was their signature.  Steve signed his name.  Dona signed her name.  That’s how they always did it.

WP_20160525_14_52_17_Pro_LI

Then in April another card came from Steve and Dona.  My dear friend, Atha, had died and I was still reeling from her unexpected death.  Dona knew how my heart was hurting, so she pushed aside her own pain and she sat down to write some very encouraging words to me and Gary.  And then as she ended her note, there it was.  The signatures.  Steve…..and Dona.  But look at Steve’s, written with his left hand when he is right handed……and written after having to learn how to write again. 

IMAG01719

I burst into tears when I saw it.  Dona’s words were uplifting and so sweet, but Steve’s signature is what really got me, because it showed volumes to me of where Steve was now.  What a difference from November to April!  What life changes he is having to adjust to! 

And so is Dona, who is with him every step of the way.  How her life has changed!  Steve walked out the door that Sunday morning, and their world as they knew it collapsed.  But I know they don’t really think of it that way.  They see God’s hand in it all……they trust Him completely……and they are putting into practice the rock solid faith that they have cultivated in our loving God all these years.  But it’s still hard.  It’s not without frustrations and fears and tears.

Back on May 26, 1979, Steve and Dona promised to be faithful to each other, too….for better or worse, richer or poorer, and in sickness or health.  So did Gary and I.  Steve and Dona’s promise has been put to the test, and they are passing…..with God’s grace…..with flying colors. 

Gary and I are very, very thankful that we have another year to celebrate our joint wedding anniversaries.  We are very, very thankful for the enduring friendship that we have shared with these dear friends.  We are very, very thankful for their example to us of steadfast love in the life changing hard times. 

And I’m very, very thankful for Steve’s signature that is so telling on many levels.  It tells of sadness, of strength, of progress, and of grace. 

Which means that Steve and Dona’s life really has God’s signature all over it. 

Happy Number 37, Steve and Dona!  Here’s to many more!

 

The Coupon Box

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

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

WP_20160508_07_41_40_Pro

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

“No,” he simply answered. 

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

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

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

WP_20160509_12_10_08_Pro

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

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

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

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

“We’re leaving at 3:00,” I answered.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

WP_20160523_14_37_00_Pro

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

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

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

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

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

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

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

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

Can I be any less for Aaron? 

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

Who Are These Special Moms?

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

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

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

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

Those dear Moms:

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

 

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

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

 

 

 

A Nightmare and a Flower

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 WP_20160427_13_05_54_Pro

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

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

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

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

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

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

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

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

 WP_20160427_17_20_21_Pro

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

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

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

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

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

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

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

Oh boy.

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

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

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

IMAG01748

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

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

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

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

When no one else can understand me.

              When everything I do is wrong.

              You give me hope and consolation,

              You give me strength to carry on.

 

              And you’re always there to lend a hand

              In everything I do.

              That’s the wonder, the wonder of you.

 

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

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

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

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

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

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

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

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

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

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

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

And tomorrow’s a new day!