Category: Family

You Don’t Want Me Still Talking

I’ve been thinking about the past few days with Aaron, and how he takes the most normal of things and makes them uniquely his own.  He gives so many things a different twist and often we end up laughing……..or shaking our heads in frustration.  One thing is for sure – it’s hard to be a step ahead of Aaron.  Usually I’m running to catch up to him!

This past Saturday morning, Gary and I ate breakfast with Aaron as we listened to him talk.  He was very happy that I had fixed his favorite biscuits, and even happier that the blessing Dad asked wasn’t very long so that he could dig in quickly……….all the while keeping an eye on the pan of biscuits in the kitchen, hoping that no one would claim any more of them and they would all be his.  As I later cleaned up the kitchen, I turned around to find Aaron holding the small gourd that Rosie’s mom, Louise, had given me from their garden.  Of course, Aaron had noticed it sitting in the kitchen because it’s unusual and bumpy.  Aaron was walking out of the kitchen, headed to his room with the little gourd that he had claimed as his own……..without asking.  I stopped him and we had a conversation about the gourd and where I got it and what it is and could he have it………so I said yes.  He’s so delighted by the simplest of things.  Plus, he had experienced a rough time at his day group the day before so I was hoping to give him a happy weekend.  If the gourd helped us accomplish that, then so be it.


Aaron knows that we usually change his sheets on Saturday, so he was very happy that I went up to his room at the same time that he did and that I asked if he wanted to do this sheet changing job now.  He prefers to do it early in the day instead of often having to wait on me to get to it later.  It hangs over his head all day, so finishing it early was a good thing for him.  It had rained the night before, so Aaron pointed to the raindrops still on his window as he said, “Mom, look at the dots on the window!” 

He told me how he read about the Boston Tea Party in his Handy History Answer Book the night before.  He had some questions about what kind of tea was at this party and what made them throw it in the water, so as I tried to explain what had happened I told him that the tea tax was the straw that broke the camel’s back.  I know better than to use those sayings with Aaron.  He takes them quite literally, so soon I was explaining that there were no camels at that tea party that really wasn’t a tea party and that the camel wasn’t carrying straw and that his back didn’t break if he WAS a real camel and it’s just a saying and this is what it means……..oh, never mind.  Forget the camel. 

And by the way, Aaron, why is there an empty toilet paper roll under your bed……..and a bowl of Skittles?  And yes, we can plug in your disco light thingy and close your blinds and turn your light off while you play a computer game in your disco room.

  Yes, you can put the gourd on your bookshelf.  Yes, I’ll look at that one clip about whatever movie it is you’re watching or whatever game you’re playing.  Finally, after much more talking, I edged toward the door and said, “See you later, Aaron.” 


“Where are you going, Mom?” he asked.  I told him that I was going to take a shower, and he concisely replied, “You’re weird.”  So I asked him why on earth that was weird, and he answered, “Because you don’t want me still talking.”  Actually, escaping to the shower was a huge relief, but I knew that Aaron was very likely to stand outside my locked bedroom door and still talk as he so often does.  And who is the weird one anyway??

There were more simple things that made Aaron happy over the next few days, like going to Dillon’s and seeing the spooky house full of “smoke.”  That made him nearly as happy as his cheddar pasta salad and chicken tenders.  And taking Jackson on a walk, because I let him hold the leash the way that Zach did. 


He came in my room after taking his shower yesterday and asked, “Mom?  Can I have one of those string things with a puff ball on it?”  I knew exactly what he meant and I said that he could have one and he was very happy about that.  In fact, I suggested a buff puff on a stick because he could wash his back better with that………and he thought that a buff puff on a stick would be just too cool!

This morning on the way to meet his group, he talked about Napoleon after reading his history book last night on that subject.  He observed, “Mom, Napoleon’s war suit was different from other war suits.  It was fashioner!” 

You are so right, Aaron!  It was more fashioner than some of those other military guys.  I was thankful, too, that Aaron didn’t broach the topic of Vanna White’s clothing again today like he did the other day.  He and I love to see what new dress she is wearing when we watch Wheel of Fortune.  Aaron often wonders what I would look like in those dresses…….and I try to change the subject.  But the other day Aaron said, “Mom, those are real skinny dresses.”   Pause.   “Can you wear those?”   Pause.   “I don’t want to use the word fat, but you’re not as skinny as her.”

What did you say Saturday, Aaron?  Something about me not wanting you to talk?  Sometimes I wish!

Walking the Tightrope

I heard Aaron on the monitor early this morning, a little after 5:00.  I rolled over in bed so that I could hear better.  No, it wasn’t a seizure.  I listened for a couple more minutes and then knew that Aaron was awake.  Not only awake, but it sounded like he was out of bed.  Soon Gary got out of bed and went downstairs.  Aaron popped out of his room when he heard the footsteps and said, “Mom?”  But he knew it wasn’t Mom when he heard Gary’s voice, so he went back to his room while I listened again on the monitor.  Soon I got up, too, and went down to fill my coffee thermos.  I headed back upstairs and was in Andrea’s room, where my quite time desk is, and was quietly closing the door when once again Aaron quickly opened his bedroom door.
 
I was discovered!  He clomped up the hall and began to tell me about his head and stomach hurting.  His blood shot eyes also told a tale.  Aaron has started a new medicine this week, and every morning he has gotten up early……..much earlier than usual, but this morning was way too early.  Is it the medicine that is causing his sleep to be disrupted?  Does he really feel sick?  With Aaron it’s hard to tell because he tends to exaggerate aches and pains in order to either get sympathy or to be able to stay home from his day group. 
 
I ushered him back to his room while listening to him talk about not feeling well, and then he launched into a rundown of the latest movie that he’s watching.  I told him to hush about the movie, helped him take his sweater off, pulled back and straightened his covers, and finally talked him into getting in bed again over his protests that he wasn’t sleepy.  He kept talking.  “Aaron, Aaron,” I said.  “Just close your eyes and relax.  Don’t talk anymore about movies or about your head or stomach.  I bet you’ll go back to sleep.”  He wasn’t sold on that idea, but I could tell that he liked the feel of his multiple blankets on top of his tired body and that he was indeed relaxing.  I turned off his light and closed his door.
 
It wasn’t long before I could hear his steady breathing through the monitor.  Good!  He had fallen back asleep.  Hopefully he would stay in bed for a couple more hours, at least.  It was just a little over an hour later, as Gary was getting ready to leave for work, that I heard Aaron stirring and soon he was downstairs.  I waited in the kitchen to see what look was on his face…….what mood he was showing………when he came into the room with a smile.  Ah, relief!  He talked about not being able to sleep, about his head and stomach, and his movie once again……..but he was happy and I was hoping the pleasant mood would last.
 
“Mom!  I woke up at 5:09!  Why couldn’t I sleep?”  We talked about Aaron’s sleeplessness even as I reminded him that he did get an extra nap after he went back to bed.  I wanted him to feel rested and not to claim extreme tiredness as a reason to stay home today.  Soon I had talked him into eating some breakfast.  
I suggested boiled eggs and bacon, but he only wanted eggs.  He finally agreed to the bacon if I would make it crispy and not chewy.  Later he had his eggs and bacon along with his coffee as he was snuggled under his blanket watching a program on the DVR.  What a life!  Of course, the program he was watching was one that he started yesterday but he didn’t get to finish it.  Therefore, in true Aaron fashion, he started the recording over from the beginning.  He will NOT usually resume watching a program where he left off but will instead start all over from the beginning.  Some programs take several times to watch because of this regimented way of doing things.  He also presses the pause button every time he looks down at his plate to put food on his spoon or fork.  He cannot miss one second of his program………not one.  So it’s pause……scoop food……..look up…….press play……..chew and swallow……press pause…….scoop food……….
 
I mentioned this to Aaron this morning in a very matter-of-fact way so that he wouldn’t get defensive.  He confirmed that this is how he operates.  I just agreed with him and walked back in the kitchen as I left him to his pausing and playing, over and over and over.  There he sat, with his food and his multiple utensils and napkins and coffee………..with his particular way of watching his program………and his mother just smiling inwardly at this unusual son.
 
I got our supper in the crock pot and cleaned the kitchen while Aaron finished his pausing and chewing and playing.  He was very quiet, and I saw that his head was laying back though his eyes were open.  He got a little grouchy when I told him that I was going to shower, and that he should do likewise.  Later, I looked up the hall and saw that his door was closed.  When I knocked and then walked into his room, I saw him sitting at his desk, watching a movie on his computer.  Now his mood was different.  He was grouchy Aaron, and he let me know that he wanted me to leave him alone.  In fact, he took off his headphones and got up from his chair as he pointed to the sign that he had put on his door.
 
 
He was quite irritated that I had not seen the glaring sign………..the sign that told me to not only stay out, but to get lost.  Oh boy………here we go, I thought.  So I just told him that soon we would be leaving, and then I left his room as he closed the door behind me.  Surprisingly enough, the rest of the morning was pretty calm.  He allowed me in his room a few more times………he gladly let me help him with his belt………he listened while I explained that his tiredness was not my fault……….and he actually got ready to leave for his group without a fight.
 
He talked on the way to meet his ride about all the things that Aaron talks about, which is anything and everything that crosses his mind in that 10 minutes.  “Mom, I saw a boy walking a dog this morning.  That dog is full of fluffy fur!”   And off he went, only pausing for a brief comment here and there from me.  As we neared Quik Trip and the Paradigm van waiting in the parking lot, Aaron said, “Mom, tell them that I got up at 5:09.  Tell them about my stomach and my head and that I’m tired.”   I said, “So you want me to tell them that you got up a little after five?”  Of course, Aaron replied with impatience, “I got up at 5:09!!!!” 
 
Aaron played the part of being very tired as I conveyed to the driver that Aaron had gotten up at 5:09 and didn’t feel well, etc., etc.  He was satisfied then, got in the van, and off they went.  Off I went, too, driving to Sam’s and thinking of our morning.  I feel like I am walking a tightrope nearly every day.  Hearing that Aaron was up so early……..at 5:09!!…………..was how I started my tightrope walk today.  One foot gingerly in front of the other as I heard him stirring and then as I went downstairs, hoping that he wouldn’t hear me.  Silly me!  Of course he heard me.  I headed across my tightrope as he came out of his bedroom and as I helped him get back in bed.  I was steady on the rope as I heard Aaron sleeping again, but I wobbled when he came downstairs an hour later.
 
I kept my balance as I suggested breakfast and talked Aaron into eating something, and as we talked about his unique way of watching his recorded programs.  Things got tricky when I mentioned taking a shower and getting ready.  Then I really felt like I was going to fall off the rope when Aaron pointed me to his sign and abruptly shut his door again.  Wobble………get my balance………wobble………..get my balance.  Such is life with Aaron.
 
I couldn’t completely breathe a sigh of relief until I was driving away after conveying his message to the driver, being sure I got the 5:09 part correct.  This balancing act covers the complete spectrum of Aaron’s life………from serious new medicine issues and behavior problems and seizures………to whether he wants to eat a somewhat healthy breakfast or will refuse good food………to being told to stay out of his room.  Always balancing our decisions about Aaron and our direction with Aaron, wondering if we’re going to fall off that rope at any given time. 
 
We balance our reactions to Aaron as well, struggling to be patient and loving while knowing at times that we need to be firm and strong.   We balance our time spent with Aaron as opposed to our time spent doing what we want to do……without guilt.  We balance whether to listen to Aaron’s same stories or same issues over and over and over again, or whether to pull the plug and tell Aaron that he just needs to quit telling us this same thing….AGAIN!  And as time goes on, we will need to balance how to protect Aaron with how to release him. 
 

 

I’m just very thankful that we have God to steady us when we start going sideways.  Thankful that we have good family and friends who give us love and support and advice and laughter.  And very, very thankful that even if we do fall off the rope……….underneath are God’s everlasting arms to catch us and to gently lift us back onto the rope……….where we will once again put one foot in front of the other and once again walk this tightrope of life with Aaron.

You Just Like Andrew

I’m sitting here thinking of our weekend and thinking of our children.  Sometimes I still wonder where the time went.  Our three kids are all adults now.  We watch Andrea and Andrew from a distance now as they live their lives.  They both live hours away from us,  and while that can sometimes be sad it’s also very fulfilling for Gary and I to see them so happy in the lives that God has given them.  Andrea is in graduate school studying genetics, and Andrew was recently hired by Cruz Pedregon Racing as a member of the pit crew. 

Aaron, of course, still lives at home with Gary and me.  Even when he may someday move out of our home, he will still be under our close care and supervision.  Such is life with a child with special needs.  Thinking back on the years of raising our children, it seems that times with Aaron stick in our memory the most.  With Andrea and Andrew, we had all the typical home schooling and life activities………..music, sports, friends, church.  With Aaron, we started out with those things but as time went on, he became less and less interested.  Life for Aaron became harder instead of easier.  He had such a difficult time with making friends or with wanting to be involved in outside activities.   Or sometimes he wanted to be a part of a normal life but he just didn’t know how to do that, or simply couldn’t meet the expanding expectations of a person who is supposed to be growing into adulthood. 

It’s hard for family life to be normal when parents are trying to manage and understand an issue as complex as autism.   Throw epilepsy in the mix and it becomes very muddled.  We had many frustrating days when Aaron was a teenager and then in his early twenties.  One issue that kept coming up was jealousy.  It was sad for Aaron to watch his siblings move on with life while he was stuck with doctors and medicines and surgery and hospital visits.  Yet in many ways Aaron took it all in stride, even enjoying the time and attention that these events afforded him. 

Aaron has always had a special relationship with Andrea.  First she was his buddy, his special friend and playmate when they were younger.  Now he looks to her as a mother figure in many ways.  He misses her since she’s moved away, and often asks, “Mom, when is Andrea coming over?”……….as if she only lives a few blocks away and just comes over every now and then.  She and I were on the phone the other night.  Aaron walked in the room and when he realized that I was talking to Andrea , he wanted to talk to her as well.  I put the phone on speaker and off went Aaron, bending over and rubbing his hands together in delight as he nearly yelled.  “Andrea!  Is there such a thing as deadly mutant viruses?!!”   No “Hi, Andrea!  How are you?  I miss you.”   We would faint if he ever expressed such emotions verbally, but Andrea and I both through our laughter knew that Aaron was happy to talk to his sister.

Aaron’s relationship with Andrew has been more complex.  Aaron has always shown some jealousy toward his brother.  I wonder if it’s something to do with both of them being male.  It seems that there is a competition there on Aaron’s part that he has just never known how to handle.  As they got older, Aaron had fewer friends while Andrew had more friends.  Aaron was very jealous of Andrew’s friends who would come over, especially if they spent the night.  Aaron loved sleepovers and always wanted to do that.  Who could ever forget the day that a female friend of Andrew’s stopped by for a quick visit?   Aaron stood at the top of our stairs and yelled down, “Andrew!  Is she sleeping over?!”  Poor Andrew.  Who could forget all the rude comments that Aaron made to Andrew’s guy friends that would be at the house, or the time that Aaron hit Sam in the stomach?  Or the day that Andrew got his driver’s license and Aaron saw him drive the old truck in the driveway that we bought him……..and Aaron quietly said, “Andrew drives?  I wish I could drive.”

We had some good times with Aaron this past weekend…….just normal life but things that Aaron enjoys.  He went for a haircut and even got a shampoo…….something he’s never done before and which delighted him a lot.  We went to Dillon’s afterwards for him to get a Cheddar Pasta Salad and some of his favorite jelly beans.  He ate dinner with Gary and me, talking between bites of his pork chops and fried squash that he loves.  We played Tri-Ominos and we watched Wheel of Fortune.  He ate some pizza, and then on Sunday evening he tried a new dish at Taco Bell as well as his tried-and-true hot fudge milkshake from Sonic.  He talked our ears off, as always, and he did his quirky things that make Aaron…..Aaron.  Like putting his peanut jar in his ever-present bowl on top of a plate, and then eating the peanuts out of the jar inside the bowl on top of the plate.  That is SO Aaron!  And he found my restaurant coupons that I’ve told you about…….the ones that I don’t want him to cut……….and that I found all in a pile……….CUT ON THE DOTTED LINES!!!!   Oh, Aaron.

In the midst of life with Aaron, we enjoyed hearing about Andrea’s research and her time on Saturday with her boyfriend Pete and his parents.  We also got to watch the NHRA race from Charlotte, and to see Andrew on television.  This part of Andrew’s life now is something that we’ve tried to downplay in front of Aaron, but he found out about Andrew’s new job and the fact that he’s on TV sometimes.  Aaron has seen Andrew on the screen.  Aaron didn’t show much reaction to it the first time.  This past weekend, he again saw Andrew and he again didn’t act excited……but I did hear him at one point mutter, “So what?”  Oh boy, I thought, here we go.

On Sunday night I went in Aaron’s room to say goodnight.  He was sitting up in bed reading his Handy History Answer Book (of course!) with his pillow just right and his back scratcher there beside him and his other pillow on his lap and his stuffed snake that used to be Andrea’s stuffed snake laying there beside him and his covers all wrinkle free and just so-so (of course!).  I hugged him and I listened to his usual talk and I had a hard time leaving the room because every time I would ease over toward the door he would say, “Mom!  Wait!”  Then he would quickly think of something else to say or to ask in his attempt to keep me there as long as possible.  Finally I said a final good night, and as I closed his door I heard him say, “Good night, Miss woman who wants to watch Andrew on TV.”

There it was, that old green monster of envy coming out.  The next morning, yesterday, Aaron was talking to me as I got my make-up on and he said, “You just like watching Andrew on TV.  And you just like talking to Andrew when he comes home.”   I tried to explain to Aaron how little we see of Andrew and how happy we are for him, and that we do enjoy seeing him on TV.  But I also reminded Aaron of the time spent with him and the love that we have for him, wondering if any of what I was saying was penetrating his hidden heart. 

I thought of how I walked into Aaron’s room over the weekend and tapped him on his shoulder to tell him that we could play Tri-Ominos.  He looked up at me with his headphones on as I sat on the bed right beside him.  He made very direct eye contact with me, and with warmth and feeling he said, “Mom.  I was waiting for you.”   Something about his look and that comment just went straight to my heart. 

I smiled and I gave him a quick hug………too much hug was not what Aaron wanted at that point.  And I nearly cried.  He looked so needy and so vulnerable.  “Mom.  I was waiting for you.”  Oh Aaron, you don’t have to wait for me.  You have me always.  I am always here for you.  You don’t have to be doing genetics research or to be on TV to be important or special to us.  How I want him to know that he is loved and he is treasured for who he is………even when he’s driving us nuts!  That is Aaron in all his many facets.   I hope that he realizes that going to get a haircut and visiting Dillon’s and eating together and playing Tri-Ominos and watching Wheel of Fortune are just a few of the ways that we say, “I love you.”

So is making him the pretzels this morning that I bought a few days ago, letting him watch me bend the dough into that pretzel shape.  And helping him get all set up in his chair with his blanket over his legs and his cups of coffee beside him, his hot pretzels fresh out of the oven on a plate in his lap, his napkins and toothpicks close by as well……….and then hearing him ask, “Mom, will you bring me a knife and a fork and a spoon?  A knife….AND a fork……AND a spoon?  All three……a knife, and a fork, and a spoon.” 

Yes, Aaron, I will bring you a knife……AND a fork……AND a spoon.   Even though you do NOT need a knife……..or a fork……..or a spoon……… while eating pretzels.  But I didn’t remind him of that fact, because I know that Aaron DOES need a knife and a fork and a spoon, for some reason that we cannot quite understand but that we accept. 
  
It’s just another way to demonstrate to Aaron that he is loved and that he is accepted.  I hope that he sees that and feels it in his heart as he gobbled down the pretzels……..and never touched his knife or his fork or his spoon. 


But they were there, within reach…….and so are we.

Are We Having Fun Yet?

Gary’s military career took us to many places over the years.  Many of our family were able to come visit us in the various places that we lived, including Germany.  Fort Huachuca, Arizona, was our last assignment before Gary retired.  We had lots of family and several friends that were able to come and spend some time with us while we were there, but one trip will always stand out as the trip like none other……….the trip that no one would want to re-live.
Our military housing on Fort Huachuca, Arizona
My mom and dad came out to see us in October of that particular year.  October in Arizona is usually a great time to travel because it’s not too hot and not too cold.  Since Dad didn’t like to fly, they drove for several days across country, all the way from southern West Virginia to southern Arizona.  Mom and Dad enjoyed traveling, so the long drive didn’t bother them.  They had decided to just take their time and enjoy each day.
Our backyard view –  Fort Huachuca, Arizona
Now my mother, years prior to this trip, had been diagnosed with a very rare form of colitis.  She would go for rather long periods of time with no problems, and such was the case before they left for this long vacation trip to Arizona.  She had been fine, so she didn’t even think about bringing any of her prescription medicine.  However, on the long drive across the country she began having problems with her colitis.  As soon as they arrived at our place, later that evening, Mom pulled me aside and told me that she would need to go the emergency room the next day to be checked and to see if she could get some of her medicine.  It really wasn’t a big deal, she assured me, and so I wasn’t alarmed.
The following day, I took her and Dad to the ER in the town of Sierra Vista.  She was examined and plans were made to get her unusual prescription filled there in town for her rare form of colitis.  This would take some time, though, so in the meantime the doctor gave her something else to take.  In addition, they noticed that her blood pressure was high……….so the doctor said that she would need to come back the next day to have that checked as well.
Over the next several days, we juggled Mom’s ER visits with our day trips around southern Arizona.  There is so much to see and do there, and they didn’t want to waste a minute.  Mom’s colitis, though, was not getting any better but was actually worsening.  And her blood pressure was still an issue, so back and forth we would go to the ER to have her checked.  We were also dealing with Aaron’s seizures and behaviors……but despite it all, we were having a great time as we saw the sights and went on picnics and enjoyed time together.
One day I drove us all up through the Coronado National Forest.  We ended up at the top, at Montezuma Pass, where we looked out over the gorgeous view.  On the way back to the van from the overlook, there was just a tiny little incline with very small rocks on the ground.  Dad usually took hold of Mom’s arm to help her in an area like that, but this time she had gone on by herself.  Before we knew it, she slid on those tiny rocks and fell down.  We rushed over to help her up, and she assured us that she was fine………except that her lower leg hurt.  As we drove down off the mountain, I heard her tell Dad that her leg really hurt and that she thought she should go back to the ER to have it checked.   Now Dad, who was the sweetest husband ever, proceeded to tell Mom that her leg was fine and that she did not need to go to the ER.  At this point, they had been to the ER so many times that some of the staff knew them by name.  Dad was hoping that their ER days were over, but it was not to be.
Coronado National Forest
As soon as I dropped the kids off at our house and left them with Gary, I drove Mom and Dad back to the now very familiar emergency room.  Dad and I waited while Mom was X-rayed…….and then we were both shocked when the doctor walked out to tell us that Mom’s lower bone in her leg was broken.  Broken?  Are you sure, we asked?  Yes, we’re sure, he answered.  So Mom’s leg was put in a splint, and we were instructed to be seen by a certain ortho doctor on Monday.  This was Friday, so we had the weekend to wait.  And now Mom couldn’t walk……..and her colitis was bad, which meant frequent and VERY fast trips to the bathroom.  Oh dear.
We also, for some reason that I have forgotten, could not get a wheelchair at that time.  So we would put Mom in Gary’s desk chair with wheels, and we would roll her quickly around our quarters to the bathroom when the need would hit…….which as I said, was often.  VERY often.
We also had another little complication on this ever more interesting vacation trip.  Remember that we lived in military quarters.  When the housing authorities decide to make repairs on your quarters, they don’t typically ask if they can make said repairs.  They TELL you when they are making the repairs, and you deal with it.  Before Mom and Dad’s trip, we were told that there would be a certain project that would start on such and such a day on our house.  Just a small project…………putting on a new roof.  Oh, and since they were fairly certain that there was asbestos in the old roof that would be removed, we would need to make plans to be gone from our house on that day.  Gone…….as in gone ALL day……so as to avoid the asbestos.
You can probably guess that the day of the roof removal was on that Monday……….the Monday that Mom was scheduled to go get her broken leg put in a cast.  I had planned a full day trip to Mexico for all of us so we could do what the contractors told us to do……..which was to be gone………..and so we could avoid the nasty asbestos……….and so we could show my parents Mexico and we could shop and we could eat and we could have so much fun.  Instead, we were trapped in our house with Mom in a rolling chair with her leg stuck straight out, careening up the hall like crazy people to take her to the bathroom……and contractors at our door bright and early, asking us when we were leaving.  I explained that we were NOT leaving, and these Mexicans were trying to understand until they saw Mom……….and then they knew.  So they instructed us to keep our windows closed and good luck.
Dad and I got Mom to the doctor, and she came home with a nice new cast…….and still with her colitis, as strong as ever.  I don’t even remember how high her blood pressure was at this point, but I’m pretty sure that Dad’s and mine was right up there with Mom’s.  At least now we also had a wheelchair, and so life was a little easier……..except that our quarters weren’t exactly big enough, especially the bathroom doors, for a wheelchair.  Boy oh boy!
The Mexicans were working on the roof and we had our windows closed, but we noticed the dark clouds that were rolling in over the mountains.  Surely not.  It couldn’t be threatening rain in Arizona in October.  Not with our roof off………not with Mom in a wheelchair and a cast.  Soon our doorbell rang, and one of the Mexican men stood there rapidly firing off his mixture of Spanish and English.  I knew enough to know that he was telling me that they were hurrying as fast as they could to beat the rain, but that most of the roof was still not rain-ready.  And as we stood there, they also told us to move our vehicles because they were spreading tar on the flat roof………and the wind was whipping up because of the approaching storm.  So now we had very little roof and we had blowing tar.  Yes, blowing tar.  The tar didn’t get on our vehicles that we moved, but it blew all over our yard and carport……..and it seeped into our storage room………..and it got tracked all over the inside of the house.
Then the rain came………a hard, blowing rain.  The workers all left………..and we were left with drips coming out of our ceiling all over our quarters.  We used trash cans and buckets and bowls to catch the water.  Which meant that now we had Mom with a broken leg in a cast and with colitis………bad colitis, remember………being pushed quickly up the hall to the bathroom while dodging buckets and bowls and trash cans……….and somehow making it with our help to the toilet.  Soon after this rain fiasco started, I heard Mom in the bathroom laughing.  There she sat on the toilet, with steady drips of water landing right on her head.  Well, at least it was one drip that didn’t need a bucket.  We just kept the toilet lid up to catch the drips, and handed Mom a towel to hold on her head whenever she had to go.
The next day the workers returned and I tell you no lie………the same thing happened.  It rained yet again!  We had to laugh at this point.  I was so thankful for Mom and Dad’s good attitude, especially Mom’s.  Dad was getting a little stressed, of course, as he worried about her and wondered how on earth they were going to get home to West Virginia.  Finally, the decision was made.  My sister, Jan, flew out to Arizona in order to ride home with them.  I picked her up in Phoenix, and on the drive down to Fort Huachuca she asked if I could stop to let her use the bathroom.  On down the road a short way, she asked me once again to stop.  When she got back in the car, I asked if she was OK……..and she sheepishly said that her colitis had flared up.  OH NO!!!!!  She made me promise not to tell Mom and Dad, and she said the next day that she was fine……….and off Mom, Dad, and Jan went to drive back to West Virginia.
From what Jan told us, the drive back across country was pretty much a nightmare.  One day she told me that she stopped counting at 27 the number of times they stopped for Mom’s colitis attacks.  Many bathrooms were not wheelchair accessible.  Some hotels didn’t have any handicap rooms available.  It took at least 5 days to get home………..maybe more………..neither of us can remember.  I do know that Jan said by the time they got home, Dad was totally exhausted and he looked grey.  Poor Mom was wiped out………pardon the pun, but she would totally love that.
But things were not over.  Nope, not by a long shot.  When they got back home, Mom ended up in the hospital with pneumonia!  Yes……..colitis, broken leg, and now pneumonia.  But wait……….there’s more.  While in the hospital with pneumonia, she developed a blood clot and had an embolism.  She was in the best place for that to happen, although it was still a miracle that she didn’t die.  Of all things, this was her second embolism.  She had one years earlier after toe surgery.  She must be some sort of statistical miracle for sure!
This long story is just to show that through it all……….through this absolutely horrible vacation……….Mom and Dad stayed calm and strong.  Especially Mom.  Her strong will and her sense of humor kicked in, and she never acted like she was down or distressed.  She joked about everything and made the whole situation easier.
And most of all, as she lay in that hospital bed after the embolism, she said that God comforted her by giving her the verse that became her verse.  I wrote about that verse yesterday.  Psalm 46:10 – “Be still and know that I am God.”  She said she lay there and just let her mind dwell on that verse.  She knew that God was in charge of all this craziness, and in charge of her health………..and that if she died, it would be fine………..and if not, then she would remember that He is God.
Tomorrow is Mom’s 87th birthday.  She has Alzheimer’s and has forgotten more than she remembers now.   I bet she can’t remember that disaster of a vacation…….and maybe that’s best.  But I’m thankful that the rest of us can think of it and remember what a testimony she was through it all.
We love you, Mom!  And we think of what you always said when you had these colitis episodes……”It’ll all come out OK in the end.”   HaHaHa!  That’s my Mom!

 

NEXT Labor Day??

Ahhhhhh.   That’s me breathing a big sigh of relief after safely and happily delivering Aaron to meet his group today.  After a long break from Paradigm for the Labor Day weekend, I fully expected a grouchy Aaron to come barreling down the stairs this morning.  This fear was further confirmed when I heard him open his bedroom door early this morning.  An early rising after a long weekend at home usually means one thing………an unhappy Aaron not wanting to enter into his normal routine again.  It almost always points to Aaron sighing deeply while telling me how tired he is and that he can’t go to Paradigm, etc., etc. 

So I braced myself when after a few minutes I heard Aaron’s unmistakable loud thumping down the stairs.  His steps sounded chipper, not slow and labored, so maybe just maybe  he would be happy this morning.  He came into the family room carrying his big fuzzy brown blanket, his fuzzy black pillow that goes behind his back while he watches TV, his yucky hand towel that he carries everywhere because he never knows when he will need to wipe something yucky off of his hands onto his handy yucky towel, and his back scratcher that not only scratches his back but mostly is used to whack the arm of the couch or the ottoman – loudly. 

I still sat cautiously at the kitchen table as I tried to determine his mood.  “Mom!” he exclaimed.  “I slept well last night!”  Then I knew that he was happy on this post Labor Day morning.  We were off to a great start and I was very relieved, though I didn’t let Aaron know that.  No need to call attention yet to the fact that going to Paradigm was on the horizon.  Aaron continued, “Mom, last night I was reading in my Handy History Answer book.  I was reading about the Huns!”  He paused as he always does for me to have a chance to show that I am interested in hearing more about the Huns………although even if I don’t express such interest he’ll tell me more…….much, much more……about the Huns than I ever wanted to know. 

He did continue, of course.  “I’ve never heard of the Huns,” he said.  I reminded him that he had heard of the Huns back in school but somehow he didn’t seem to remember.  He was surprised that they were fighters and then said, “I thought they sounded like a religion kind of church group.” 

Nuns, Aaron.  That would be nuns.  Not Huns.

And I was glad that Aaron was making me laugh this morning instead of making me do something like pulling out my hair, as he sometimes does.  We’ve had a little of both on this long weekend just behind us.  The hair pulling hasn’t been over anything bad,  but listening to long drawn-out eternal conversations about the movie The Fly……..and then the movie Ghost Rider……..has been pretty overwhelming at times.  “Mom!  That guy was transformating into a fly in that machine!!”  And off he flew from there with all the talk of The Fly……and then Ghost Rider and flaming skeletons and watching multiple movie clips of both movies and trying to pay attention and answer a myriad of questions that I don’t know the answers to……….or even care to know the answers to……….

Tiring, to say the least.  And Aaron still talked to matter what we were doing.  He talked when we took Jackson on a walk.  He talked when we went shopping.  He talked when we went out to eat.  He talked when we watched racing on television, pausing long enough to see his brother, Andrew, on ESPN and being totally unimpressed.  Now if Andrew had been transformating into a fly or if he was a flaming skeleton, Aaron would have been very impressed.   Otherwise, not so much.

He also talked when we played Tri-Ominos. I dug out that old game and Aaron has enjoyed playing it once again.  Of course, he also spends a great deal of time making sure that all the edges of the many Tri-Ominos pieces are put together as perfectly as possible.  Scoot, scoot, scoot all those little triangles around!  But it does keep him focused on something else for awhile other than The Fly and Ghost Rider. 


So did finding a pile of Brain Seed Pods in our neighbor’s yard while we took our walk.  Oh, I know some people call them Hedge Apples but to Aaron they are Brain Seed Pods……..always have been and always will be.    

He also found a new television show to watch and TALK about this weekend.  It’s Animal Planet’s Call of the Wildman………about Turtleman.  This guy is wild and crazy and catches animals that are bothering people……….and Aaron loves him, naturally.  Aaron’s world is expanding, I guess.  Now we’ll be listening to a wild man on TV and living with one for real.

Back to reality, it was good to see Aaron be compliant and happy all morning with not one wild moment.  He took some baby carrots to give to Rosie along with a small bottle of juice.  He loves taking something to give to Rosie.  As I talked to his driver this morning, Aaron heard us saying that Paradigm was technically open yesterday but very few clients were there.  He got a wild look in those eyes of his as he blurted out, “Mom?!  Can I stay home on Labor Day??”

“Aaron,” I calmly answered, “you just stayed home on Labor Day.”

“I mean NEXT year!!” he continued.  “Can I stay home NEXT year on Labor Day?!!” 

Oh dear.  He was in no mood now to be laughed at, so I had to wait until I drove off to laugh loudly at his urgency to make sure he gets to stay home NEXT year on Labor Day.

And so life returns to normal after our holiday weekend………whatever normal is for us with our special, and sometimes slightly wild, Aaron.

The Power of Pancakes

I hadn’t been sitting on our patio very long on this beautiful Monday morning when the door opened and there came Aaron.  Remember yesterday?  I wrote about happy Aaron……happy to talk and talk…..happy to eat and to try a new smoothie…….happy to watch Zookeeper……..and happy to talk and talk about Zookeeper, among other things.  But this morning I saw a very different Aaron.  This Aaron was disheveled and frowning and tired.  Very enormously tired.  His finger was wrapped in a band-aid because he had torn a large piece of skin off near his nail.  And to top off his misery, he knew that Dad and I had taken the van in for some repairs.  This meant that his Paradigm driver would be picking him up at home today instead of us meeting them at Quik Trip like we normally do.  A change in routine on top of huge tiredness was putting Aaron on overload, and putting me on alert.

“Do I have to go today?” he asked.  I told him yes, knowing this wasn’t the answer he wanted to hear, but still saying it with a smile and some pep.  Aaron wasn’t buying it.  “Why?” he asked, this time with an angry edge to his voice.  So I gave him the reasons that I always give……..that this is where he goes and what he does; that he has fun there; that he has friends there……and he angrily replied, “I don’t care!” 

Now the pep in my voice changed to firmness and he settled down in his chair for a minute.  Then I told him that I was going to pour his coffee before I went up to shower.  He was quiet.  So I asked, “Hey, would you like some pancakes?”  And Aaron told me that he did NOT want pancakes………so I said OK and we sat there in silence for a minute or two.  I finally pushed out of my chair and turned to open the door to go inside.  Aaron was right behind me, and as the door closed and I turned to pour his coffee, he said, “OK.  I’ll take some pancakes.”

I got out the old cookbook – one that I’ve had since Gary and I got married.  I stirred together the pancake batter as the skillet heated, and soon I had three pancakes ready for Aaron to eat.  By now he was enjoying the music I was playing, and was talking away, relaxed and happy.  He took the plate of pancakes to the table, along with many pieces of silverware and the napkins and toothpicks and the comics.  He spied the next three pancakes that were soon ready and claimed them as well.  As he saw me finish making the last pancakes, he asked if I would sit at the table with him and eat as well.  I really wanted to go take my shower and get this day going, but I knew that he wanted me to stay there and so I did.  I munched on a pancake and listened to Aaron talk, of course.


He was very excited to tell me that he had finished the chapter he was reading in his Handy Science Answer Book.  “Last night I finished that one chapter and I arrived in that other chapter,” he proudly told me.  He went up to his room so that he could bring the book down and show me where he had arrived in the book.  He talked about numbers again, like he did yesterday, except today it was things like Pi and what it means and why it’s used……..and I suggested that he read that part of his book again instead of asking me.  Aaron finished his breakfast and went upstairs to shower while I cleaned the kitchen and got the sprinklers turned on outside.  After his shower, I put some medicine on his finger along with a clean band-aid.  I helped him with his belt, and he asked for help with his shoes, too…….saying that his finger hurt.
 
The morning was slipping away from me.  I knew I might be in the shower when Aaron’s ride came, and knowing that he was still a little “iffy” about the ride business and the whole idea of going today, I decided to wait on my shower until Aaron left.  Therefore, we sat on the front porch watching the sprinklers water our new grass seed.  Aaron was happy to have my time and attention, of course, so he talked and talked…………mostly about the Zookeeper movie once again.  Oh my goodness, he remembers every scene and wants to dissect every conversation and every look and every mannerism.  The heat and the sound of the sprinklers and his monotone voice was driving me nearly into a state of deep sleep……..but every time I felt my eyes closing, I’d hear him saying, “Right, Mom?”  I would fumble with some lame answer to a question I barely heard and he was content as he moved right on to the next sentence that had to be said.

Finally, his ride came and off Aaron went.  I tried to get my already late day into gear.  It wasn’t  going quite as I had planned.  I wasn’t frustrated, really.  I knew that making the pancakes and then spending time with Aaron had probably saved the day for him……..and therefore, for me in the long run.  Aaron left with a full stomach and with a back rub as we had sat on the porch glider together.  He was happy and said goodbye to me nicely.  Time spent with Aaron is never wasted, but sometimes it’s hard to let what I want to do be put aside to do what’s best for him.

Later, as I hand watered a section of our grass, I thought about how our children are like those fragile seeds that lay in the dirt.  They need watering and care, even when we don’t feel like it on some days.  We understand this as mothers, especially when our children are still young enough to live at home and be under our care.  But when we are older, and our children are older, the watering is mostly done and we then have more time to pursue other things.  Yet there I was this morning, making pancakes for my 28 year old son…….and sitting with him on the porch glider…….and rubbing his back……….and listening to his constant talking. 

I still have watering to do for this boy who is a man in years only.  It is not another’s responsibility but is what God has given Gary and I to do.  As I watered that seed, I thought of other moms that I know who are caring for grandchildren full-time…………or who are raising more than one child with special needs……..or who happily take foster children into their homes.  These women amaze me!  I was humbled as I thought about them and I felt very blessed to have their example to spur me on toward victory in this walk.  There’s not much room for selfishness, that’s for sure. 

Over the weekend, I had told Aaron that we should play Tri-Ominos sometime.  It’s been a long time since we played that game.  He asked me to play it with him tonight.  It was tempting to say no, but something made me think again………something about that seed that I had watered.  And those pancakes that I had made this morning.  So we played a round of Tri-Ominos tonight.  It was good.  He and I were content.  And as I urged him later to be quiet because Dad was in bed, needing his sleep for another hard day of work tomorrow, Aaron asked me to just tickle his back for a minute as we stood by his bed.  I wasn’t really wanting to do that, but I’m glad I did it.  You know why? 

Because Aaron told me about seeing the Hyatt Hotel downtown, except he pronounced it “Hi-yot.”  So Aaron said, “Mom, what is the Hi-yot downtown?” 

“The what?” I asked.

“The Hi-yot,” he repeated.  “You know.  That hotel.”

And I laughed, and Aaron didn’t mind that I laughed.  He said that Barb laughed at Paradigm, too, when he told her about the Hi-yot.  Which made me laugh again as Aaron stood there enjoying the back tickling.  If I hadn’t been tickling Aaron’s back, I perhaps would never have heard about the Hi-yot.  And I would not have had the laughter that warmed my heart and this memory that draws my heart to Aaron. 

No moment is wasted with our children…….not a single one.  From pancakes to the Hi-yot……..it was a good day.

Rushing To Be Ahead

Last week was a wonderful week.  Andrea got to come home as she had a break between summer school that had just ended and the beginning of her fall semester in grad school.  She drove in from Fort Worth on Monday.  Aaron had been excited for days about her arrival.  He wondered what day she would get here, what time she would arrive, how long was she staying, was she bringing her dogs, etc., etc.  He loves his sister……….and even though Aaron is the oldest of our children, he seems to be the youngest because of his childlike ways.

Andrew also was able to come in on Tuesday from Missouri.  He had a break from traveling with Scott Palmer Racing, so the timing was perfect for all of us to have this rare time together.  Aaron has, for many years, been rather jealous of Andrew.  We don’t know if it’s a “boy” thing or just what, but where Aaron sees Andrea more as a mother figure – he sees Andrew more as competition.  He views Andrew as competing with him for our time and attention.  We always tell Aaron that this isn’t true……..that we love them both equally, but that we don’t see Andrew very often and so we do want to spend time with him while he’s here.  Aaron will say, “When Andrew’s here you just want to talk to him and not to me.”  But he doesn’t say the same about our time with Andrea. 

I wondered how the days together would go and how Aaron would treat Andrew.  When we all sat down to eat supper on Tuesday evening, though, it went very well.  Aaron didn’t say anything rude or mean to Andrew.  Of course, Aaron doesn’t ever walk up and say, “Hi, Andrew (or Andrea)!  It’s so good to see you!”  We would probably fall over in a dead faint if he did that.  Instead he just barrels into the room and basically ignores the “new” person as he launches into some topic about a movie or a game or an event or just whatever will keep him talking……..and will help him avoid the uncomfortable reality of actually saying hello.  On Monday, when Aaron returned from his group, he barged in the door as always and there was Andrea.  Aaron never said hello or acted at all excited to see her……..but he was.  He just started talking about some random something, and then would refer to her as if she was always there.  I finally asked him if he was going to say hello and he laughed awkwardly.  Then if you listened very carefully, you would have heard him mutter his hello, very fast and very softly.  There!  That was done!  Andrea laughed, and then gave him a special giraffe ball point pen that she had bought just for him.  I had to urge him to say thanks, again uncomfortably, but he was truly delighted with his new pen………and with the fact that his sister knows how much he loves ball point pens!

Aaron wanted to stay home from his day group while Andrea and Andrew were here.  My first inclination was to insist that he go to his group, but then I mentally stepped back and realized that he desired to be as much a part of the family togetherness as the rest of us.  Yes, he also had the ulterior motive of just wanting to stay home, but I knew that his decision was rooted in the urge to be a part of what we were doing.  It can be more hectic with Aaron around……more frustrating………louder……….less adult-like on certain levels……….but Aaron is a part of our family and so I decided to let him stay home. 

On Wednesday we all went to Tanganyika Wildlife Park, just a couple miles from our house.  I wondered how Aaron would do in the heat of this summer day.  Would he be impatient to go from display to display?  Would he be grouchy in the heat?  Would he demand all of my attention?  However, we were all pleasantly surprised at how well he did.  He truly enjoyed the day despite the heat.  He fed many of the animals, including the rhino.  He pet the kangaroos and he rode the camel.  He wasn’t pushy or intrusive, and he didn’t make us hurry along because he was unhappy.  Can you tell how other trips in the past have been?  This day was truly a delight to us……….and a surprise.  It was a gift in so many ways.

We ended the afternoon with a stroll through the gift shop, where Aaron was very happy that I bought him a shirt.  As we walked out the door and headed toward the van, I noticed that Aaron picked up his pace and was walking ahead of Andrew, Andrea, and me.  I knew exactly what he was doing.  “Look,” I told Andrew and Andrea.  “Aaron is hurrying because he wants to get to the van first and grab the front seat again.”  We all laughed quietly and then Andrew told us to watch.  He walked up beside Aaron and then with his long legs he began to pick up the pace.  Not to be outdone, Aaron kept right up with Andrew.  Then Andrew kicked it up another notch, his long legs easily outpacing Aaron’s short legs.  But Aaron was not to be outdone, so with his arms pumping he kept up with Andrew’s stride.  And as they walked side by side, Aaron was saying, “Um.  Um.  Um.”  This was his way of trying to look like he was keeping up with Andrew because he wanted to talk…………but we all knew better.  Aaron wanted that front seat for sure!!

Instead of the frustration that would have been present 10 or 15 years ago, though, there were smiles and knowing glances between the three of us as we watched Aaron win the race……….thanks to Andrew’s kindness.  It really was very funny.  There was Aaron, stuck in his childhood………..determined to ride shotgun like he did years ago.  Striving for the best seat…….wanting to be ahead.  And there were my other two adult children, not making fun of Aaron but enjoying the moment and enjoying this unique person that is their brother.  Able to laugh at his funny ways and appreciate who he is. 

Andrew, Aaron, and Andrea
Aaron doesn’t realize how much things have changed over the years.  When we’re all together, he’s still in childhood mode with the competition for his place and for our attention.  If he only knew, or cared, about what I see.  I see our other two children, now adults, who have grown in their love and understanding of their brother.  Oh, they still roll their eyes and sigh deep sighs and grit their teeth and say, “Aaron!!” plenty of times.  But in their hearts, they realize more than ever who Aaron is.  It’s as if the dust has settled and they can step back and see life more clearly……..Aaron’s life.  Time and maturity sure do make a huge difference.   There were times that I wondered if I would ever see this level of love and understanding from them.  Living with a special needs child can be very taxing for the siblings, especially when disruptive behaviors are a large part of the picture.  Sometimes it takes years for all of it to make sense and for acceptance to occur. 

Aaron doesn’t need to try to stay ahead, but he doesn’t know that.  So he’ll still grab the front seat and feel like he’s gained a victory over his brother and sister.  And we’ll still smile and wink at each other, and tell the story behind his back of how he rushed ahead to be the first. 

And we’ll still love Aaron, even when he’s pushing to be ahead and not thinking of anyone but himself.  I’ve said it a lot, but some things will never change.

  

FADING AWAY

 

I called my mother on Sunday afternoon – Mother’s Day.  The phone rang a few times and her answering machine picked up.  Just as the familiar recording began, I heard Mom’s voice faintly say hello.  I knew then that I had awakened her from a nap.  I waited for the recording to end, for the beep of the machine to subside, and then I spoke to her.  She was confused for a minute as she tried to clear her mind.  Being roused from sleep always causes her to be very confused.  I told her who I was and that I just wanted to call her on her special day – Mother’s Day.  She was pleased, and as always, her ingrained politeness kicked in as she thanked me for calling.  It was almost as if she was talking to a casual acquaintance and not her daughter.
When I asked how she was doing, Mom told me that she had been in bed for awhile and that she really didn’t know why.  As we talked and her mind cleared, she was still very uncertain about herself.  Each time I talk to her, I can read between the lines and I know that she is failing mentally.  Actually, I don’t even have to read between the lines.  Her end of our conversations are most often very vague and this vagueness speaks so clearly of just how unclear she now is mentally.
We didn’t talk very long on Sunday.  Once the answering machine went off, she couldn’t understand me.  We said goodbye and hung up.  I called Jan then, and she told me that Mom was suffering from a bout of her severe colitis.  Bob and Jan, and John and Jeanie, take care of Mom as she lives in the beautiful assisted living center that she has called home for nearly two years.  They know all too well how her mental state is changing.  One of the saddest things that Jan told me was when Mom opened her Mother’s Day card from John and Jeanie, and she asked who John and Jeanie are.  It’s not the first time that she has shown that level of forgetfulness, but it’s always alarming to see.
When I call Mom and tell her my name, I’m not so sure that she always knows that this Patty is her daughter.  Her realization seems to come and go as we talk.  She never asks about our children by name but will instead ask me how the family is doing.  She is always pleased when I give her a report on Gary and each of our children.  Mom has that social politeness that is a part of her fabric, so she exhibits happiness as she hears about Aaron, Andrea, and Andrew.  But does she even know that these are her grandchildren?  And this polite conversation lacks the depth of familial closeness that we always shared.  Something is missing.
What’s missing is………Mom.  Her very being has slowly been drifting away as the effects of her dementia increase.  She is living and breathing and talking, but MOM is fading away.  We still have her with us, and yet we don’t.  It’s a different sort of death.  We watched Dad fight cancer for eight years……….eight mostly good years.  He kept his mind all through this time.  His kindness……his wit……..his dear humor and sweetness and awareness never left him.  We could still share life with him, hard as it was, even as his own life was slipping away.

But with my dear mother, there is very little sharing now.  There is surface talk and politeness, but the soul and the connections are mostly gone……..from her side.  For us – her children and grandchildren – we are always connected to her in ways that she probably no longer feels.  We must accept, though, that the motherly affirmation and expression that even as adults we still long for……..are for the most part gone.

So many times I have found myself thinking that I would call Mom and ask her for some advice……….ask her how she made a certain dish……..ask her for a bit of family history that I wonder about.  But then I know that most or all of this part of her is gone.  Forever gone.  This is a sobering realization.  My totally competent, amazingly organized and gifted mother, is now the one who needs Jan or Jeanie to organize and manage her daily life.

 

She no longer looks at her calendar and knows that March 20 is her anniversary or that May 2 was Dad’s birthday or that September 14 is her own birthday.  This past Christmas, Jan wrote a note that was taped on each of  Mom’s presents under her tree.  The note simply said, “Do Not Open.”  Yet shortly before Christmas day, Bob and Jan walked in to Mom’s apartment and found that she had opened every single present……….and was ready to put the tree away.  We smile as we see in that episode a side of our organized mother that is still there.  Let’s get the show on the road and then clean up the mess!

 

Mom’s wit and her love of jokes and puns is almost legendary.  Yet now, at least when I talk to her, she seems rather flat.  Conversation lags between us because she has trouble with making important connections.  It’s hard to find something to talk about when she can’t even remember what that thing is that her cat, Princess, sits in front of………and I gently remind her that it is a window.  “Oh yes!” she says.  “The window!”  And I am struck with just how deeply she is affected……….and how deeply then we all are affected by this fading of her mind and memory.

 

I love this picture of her, though, still working at The Hunger Challenge at Johnston Chapel.  Still serving and smiling and enjoying being able to help.  That part of our mother is still there, as is her kindness and her concern for others.  This exemplifies my mother to her core, and I’m thankful that she can still physically do these things, though somewhat limited.

 

This gradual letting go…….this sitting on the sidelines of her life and watching her gradually slip away……..is heartbreaking for all of us.  There is really nothing we can do but be there for her, as Bob and Jan, and John and Jeanie, are every day.  We can tell her about our families, even as we sense that she’s not sure exactly who we are talking about.

 

And we can, and do, tell her how much we love her.  Someday even those words won’t really reach her.  But we reach into our hearts and into our memories, and we recognize her value to each of us in so many different ways.  Our love for her is not based on her memory or lack thereof.

 

I also realize how important it is that I say to my children the words that I want them to hear from me.  Someday I may not be able to say them, even though I may still be here physically.  Words of encouragement, instruction, family history, and love………words I hope they store away in their hearts forever.

 

Our sweet little mommy is fading away, but her example and influence is as strong as ever.  In fact, her impact in our lives is eternal and we are all so thankful for that fact…..and for her.

 

We can smile through our tears and be thankful for all that she was…….and still is today.

 

 

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.

Love is Too Dumb!

Emotions are the nebulous workings of our inner being that manifest themselves outwardly in many ways, as we all know and experience daily.  For the typical person with Asperger’s, emotions are very difficult to feel or to manifest.  Anger and outbursts, along with being very blunt, do occur.  But the very normal emotions that we have, such as empathy or love, often stay buried deep inside the person with autism.  I am convinced that they feel these emotions, or some variation of them, but their inability to process and to display these feelings like we do often make these special persons appear to be unloving, for instance, or uncaring. 

Recently, while Andrea was still here for Christmas, Aaron was asking his usual question as we drove to meet his day group.  “Mom, can you and I do something tonight?  Maybe play Skip-Bo or do our backs?”   I told him that I wasn’t sure because Andrea and I had rented some movies that we needed to watch before she returned to Texas.  Then I told him that he was welcome to watch a movie with us that evening.

He quickly sniffed in disdain at that idea, explaining that he bet we were going to watch a movie about love.  I asked him what was wrong with a movie about love and he wisely explained, “Love is too dumb in love story movies!!”

I laughed and then tried to discuss the merits of love, but he would have none of it.  No love story movies for Aaron!  He’ll take aliens or genetically altered, ravenous mutations any day over love and kissing!!

Saturday afternoon, Andrea was all packed and ready to head back to Texas.   She went upstairs to say goodbye to Aaron, who continued to play his computer game while she stood there telling him that she was leaving.  She asked him if she could give him a hug and he just gave his deep, throaty chuckle……….but no hug from him as she gave him a squeeze anyway.  She understands this about Aaron……..about how uncomfortable he is with these displays of emotion.  She laughed as she told us about it.

Yesterday Aaron stood by the table in the kitchen where I was working on something.  He wanted to talk.  Well, he always wants to talk but sometimes he wants to really talk…….you know, about something that is on his mind beyond aliens or weather or global warming…
“Mom, will Andrea come over again?”   I assured him that, yes, Andrea would come over again but we don’t know when.  School starts again tomorrow and she’ll be very busy, I told him.

He continued, “You know……Andrea……I noticed……she seems to like me.”

Well, of course she likes you, Aaron!  She likes you a lot!

And he said, “She uses that word……….I love you.”

There was that small glimpse into Aaron’s heart that he sometimes allows us to see.  Aaron may not use that word often…….that “I love you” word.  But he does understand its significance and he does love to be told that he is loved.  He rarely returns that “I love you” word, but he does keep it in his heart each time that it is spoken to him.  And after all, isn’t that what is most important………..that he is told and he knows that he is loved?

As a mother of a child of whatever age with whatever special need, we don’t always receive many outward expressions of love or appreciation.  But it’s not about us, is it?  It’s about these precious people that God has entrusted to us, to love and to nurture and to train and to protect.  We show them love……….the love of a parent and the love of God……….knowing that we may seldom if ever receive that same love in return.

But they know…….they know if they are loved, and this love warms their hearts just as love warms our hearts.  Sometimes Aaron is hard to like, but I will never stop loving him.  And I pray that I will never stop telling him that “I love you” word that he seems to most often ignore. 

He says, “Love is too dumb in love story movies!”  But I don’t believe for a minute that he feels that way about his own heart.